tag:blogger.com,1999:blog-64915889618531583952024-02-19T06:14:19.952-06:00Our Life In My WordsKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-6491588961853158395.post-88157996542110243932014-04-28T14:14:00.000-05:002014-04-28T14:14:08.516-05:00Things I wish I could say...<span style="color: #351c75;">I never thought I would go so long between writing updates, but the last few months have been very hard. My brain is having a hard time thinking/writing clearly so I thought I would make a list of things I wish I could say, things I wish were true in my life and then contrast them with the reality of what's really going on - my thoughts, feelings, and experiences. I can tell you now this will be long, but I hope you read it all anyway. This may come across as a long list of complaints or a big pity party but it is not. Truthfully, I have been working on this entry for months. I believe it took much more time to write than others because rather than it being a pity party, it is really me most definitely baring my soul, putting thoughts out there that are very hard to admit to myself - much less to share with anyone who reads this. This list is me being brutally honest about my life and I do feel vulnerable and a bit nervous about posting it. I will say that the majority of this entry might seem depressing, sad, or not like my normal self. But, I felt the need to write it because very few people know what goes on in my day to day life. I imagine if you are reading this then you must be interested in what's going on with me. This had to be long because there was no way to shave it down without losing some of the raw honesty or what I felt had to be shared. When I first started this blog, I said I would share it all...the good, the bad, and the ugly and this is exactly that. Now, I do know I'm not the only person suffering in this world and I don't believe my suffering worse than what others are going through. This is simply my blog, my story, my diary of my own deeply personal suffering and for the past few months, I'm sad to say, that suffering has seemingly taken over every minute of every day of my life. I promise that there will be some light at the end of this though because when I write it helps me see my life more clearly. ***Okay, now I write this last sentence after finishing the whole thing and I can say it ends much happier than it starts which is good because I am naturally a positive, glass half full kind of girl :)</span><br />
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<span style="color: #351c75;">1) I'll start with how things went with my PICC line being put in since that was the topic of the last entry I wrote. I wish I could say that my experience of getting my PICC line put in went smoothly, but it was full of problems. The noise of the hospital combined with an awfully timed false fire alarm set my brain off to the point where I had a seizure right as I got to the gurney I was to lay on for the procedure. (SIDE NOTE: PICC stands for periperally inserted cardiac catheter. It's basically a tiny tube inserted into a vein around my bicep and goes up the arm, shoulder, and then down that vein into my chest ending at the top of my heart). Now, after the seizure was over the person started to put in my line. They gave me a shot of lidocaine to numb the area, but didn't wait even a second for it to kick in. They just immediately started shoving the small line, not gently pushing as my first PICC line had been put in, but SHOVING it into my vein. I could feel it all - like someone was pushing a pipe cleaner in my vein to my heart. I did some deep breathing to tough it out thinking it would soon be over, but I was wrong. They yanked the first out saying it was too long and asked for a shorter line. I had silent tears rolling down and my breathing turned to small moans as the second line was being shoved in. My husband immediately asked if I was in pain and I said yes. The person said, "You can feel that?", I nodded and they gave me a shot of novacaine near my shoulder, but again they didn't wait for the drug to work. Then they yanked the second tube out with no explanation and asked for a third. Thankfully they got the third one in, but I knew something had gone wrong because my arm hurt so bad, and because I had seen way too much blood come out than when I had my first line put in. When my home health care nurse came over the next day to change the dressing she was shocked at how bruised my arm was and that I couldn't move it much or I would cry out in pain. She said it was the worst bruising she had ever seen, as did the other home health care nurse that came the next week. These ladies would know since they have been taking care of patients with PICC lines daily for many years. Both asked about the experience I had and both said they thought that on the second attempt to place the line my vein had been punctured which would cause the bruising and extreme pain. They both told me to take pictures and explain the entire scenario to my doctor because they thought he should decide if he should lodge a complaint. The nurses understood that I didn't want to have a complaint lodged just because of my experience, but because I simply didn't want anyone else to go through what I endured. I cried a lot the day the line was placed wondering why I had to go through the noise, a loud fire alarm, a seizure, and so much pain just to get my line in. I already felt defeated and I hadn't even started the treatment regimen yet. It took weeks for me to get over it and it took 6 weeks for the bruising to finally go away. Also, I couldn't get a single line because they said the hospital didn't even carry those so I had to get a "Y" line which means I have another line connected that I don't even need, but I have to push saline flushes and Heparin flushes through it twice a day as well as deal with the added bulk of it. I'll add pictures here so you can see what I mean by a "Y" line and mainly to show you how extreme the bruising was so you can imagine the pain that came with it.</span><br />
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<span style="color: #351c75;">Day 1</span></div>
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<span style="color: #351c75;">Day 15</span></div>
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<span style="color: #351c75;">Day 30 (the last one I took)</span></div>
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<span style="color: #351c75;">2) I wish I could say that treatments have been easy, but they aren't. The IV Azithromycin is doing its job and killing off bacteria which means I end up with a lot of bacteria die off/toxins in my body. Since a lot of the bacteria is in my brain and central nervous system this means I have a lot of what are reffered to as neurotoxins. These do a number on me physically and emotionally. My moods are severely altered so I may seem fine one day laughing and talking, the next I may be angry, extremely anxious, or frustrated, and the next I might feel extremely depressed. The worst times are when I cycle through all of these emotions in the same day. These things are beyond my control and when you can't control your emotions or how you react to things it is so very hard. You feel like a slave to whatever direction your brain is wanting to go, like you are no longer the conductor of the train and you just wait to see what happens next.</span><br />
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<span style="color: #351c75;">3) I wish I could say that I don't wake up dreading hooking up to my IV, but I do. When I wake up in the morning I have some joint pain, muscle aches, sometimes a small headache, but for me that seems normal. Basically I wake up feeling like my version of normal. Once I hook up to my IV all of that changes. My pain gets worse, as does my headache, my sound sensitivity (I can hear dishes being put away all the way on the other side of the house for example), my legs hurt, nerve pain kicks in everywhere, even my light sensitivity is set off. I start to hurt so much that I can't feel comfortable lying in my bed, even though I was comfortable in it before starting the IV. The IV Azithromycin also causes nausea while the line is dripping and a for awhile afterwards. Weird things bother me, like if someone is moving around - too much motion in general bothers me. I can't really handle watching tv much because of that, plus the lights and sound. I am able to watch stuff on my iPad because I can dim the screen so much and the speakers aren't as loud as a tv. So, after the IV antibiotic treatment, I am exhausted, weak, and feeling physically and mentally drained. It feels like I hook up to a bag and in a few hours I have given myself mono, the flu, a stomach bug, slight vertigo, and feel as though I haven't slept in days. So, with all of that, I ask you, wouldn't you dread doing that to yourself every day? However, I know it is a necessary evil and the suffering I go through now is to get me as well, healthy, and feeling good in the long run as possible. Knowing that doesn't always make it easier though. It is simply hard every single day.</span><br />
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<span style="color: #351c75;">4) I wish I could say that I haven't questioned God repeatedly about why I am going through this, why I am not healed, why I have to go through IV treatment again, or even that the thought, "This is NOT fair!" never hit me, but all these questions and thoughts happen frequently. I try to keep a positive outlook, but when your brain is under attack and you can't always control it, well it can be difficult to be positive. I also know that these questions and thoughts are very normal human reactions to what I am dealing with and I know God understands that as well.</span><br />
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<span style="color: #351c75;">5) I wish I could say that I am handling this with grace, strength, and a wonderfully upbeat attitude every day, or even every other day, but I can't say that at all. If any of those traits come across as you read anything I write in my entries, know they are not from me. That could only be attributed to God and not me. I know this because I am weak, frustrated, tired of it all, and I cry a lot.</span><br />
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<span style="color: #351c75;">6) I wish I had a disease that people understood, but I don't. Lyme and the co-infections of Bartonella and Babesiosis are typically understood only by the people who have them or who have a loved one who is infected. It would make it so much easier if people really knew what I go through on a daily basis and so I guess this is partially why I am writing this list. Well meaning people, friends, and family always ask, "So are you feeling better?" because most of the time when you are sick you start feeling better when you take an antibiotic. But, this is not how it is with Lyme or the co-infections. It is almost like undergoing chemotherapy for cancer, the treatment very often makes the patient feel so much worse than they felt when they were first diagnosed. Not comparing Lyme to cancer here, just a comparison of how people wouldn't expect someone going through chemo to say they are feeling better. People know that those who undergo chemo can feel very sick during treatment, or the best scenario just more tired and drained of their usual energy. Lyme treatment is like that in that the battle is in undergoing the treatment to rid yourself of the disease. The disease itself of course causes so many different symptoms/problems, but you basically have to make yourself feel worse with treatment to have hopes of feeling better after it's done.</span><br />
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<span style="color: #351c75;">7) I wish I could say all of these infections - Lyme disease, Bartonella, and Babesiosis - hadn't been able to invade all of my body and organs, but they have. Everything from my brain, heart, joints, bones - I have osteopenia in my left hip already (Lyme can actually draw calcium out of your bones which explains why I've passed over 120 kidney stones in 20 years but only had 1 since treatment for Lyme...yay), my ovary (just the remaining one since I lost the other to Lyme causing a huge cyst to form and then rupture within 2 weeks), and I've had to get rid of my gallbladder as well. It gets into your uterus, bladder, basically anywhere the infected blood can flow it can invade. It screws up horomone levels, synapses in your brain causing signals to misfire or not be received properly, adrenal glands, sleep schedules, and the list is endless. I pray that my entire body be healed and rid of these diseases even though I know that is rare. When you've had these diseases as long as I have they basically always live in your body, you just aim to keep yourself as symptom free as possible. </span><br />
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<span style="color: #351c75;">8) I wish I could say that the co-infection I am currently trying to hit is one that is easy to get rid of, but it isn't. I am targeting Babesiosis and while I felt like that was what needed to be done, I was concerned that maybe we needed to hit Lyme more. However, I realized I was right in my choice because the more I go through treatment, the more the Babesiosis comes out of hiding (so to speak) so the symptoms have flared up a lot. Babesiosis is very similar to Malaria and is actually microscopic parasites that infect the red blood cells. This means that along with the IV antibiotic I have to take an anti-parasitic drug so I'm taking oral doses of liquid Mepron and I have to slowly build up the dosage when I take it. While most patients can tolerate the normal dose of 1 teaspoon twice a day, I have had severe reactions, like seizures, when I take much at all. So, I've started with 1/4 of a teaspoon twice a week and now I've built up to a whole teaspoon twice a week. I pray that I am able to tolerate even more so that I can truly rid my body of these parasites. As for the symptoms, I deal with severe headaches, fevers, night sweats, and "air hunger" which is when your oxygen saturation is normal but you are severely short of breath. You breathe shallow and feel like you just need more air. I have a pulse oxymeter that shows my oxygen saturation level and my levels are normal, but my body feels like it's screaming for air. At times I feel like I have just finished running a race and I can't catch my breath. I do this when I talk too, so I have to sometimes stop mid-sentence and breathe for a minute before I can finish what I want to say. I feel like I'm that 90 year old woman in the nursing home that can't remember what she was saying, asks where her glasses are when they are right on top of her head, and needs to take huffs off her oxygen tank before she can talk to you. Definitely not how you want to feel at 39. </span><br />
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<span style="color: #351c75;">9) I wish I could say that all of this didn't wreak havoc on my adrenal glands especially, but it has. My blood pressure stays so very low. My bp has always been somewhat low my entire life, so my normal has usually been in the 80s/60s range, but it's even lower now. When my home health care nurse comes every week I get up and put the dog out of the way, walk down the hall with her, sit up and talk as she does the dressing change for my PICC line, and then she is always amazed that I am able to do that because when she takes my blood pressure it's been 62/43, 65/48, 61/45, etc. The problem is that when your bp stays so low your heart pumps harder to get it higher. In my case, I have a condition called POTS (which may stem from Lyme and co-infections messing with my brain, adrenals, etc.) but it stands for "Postural Orthostatic Tachycardia Syndrome". It's just a fancy way of saying that when I stand up my blood pressure drops lower quickly and causes my heart to beat faster to try and bring it back up. This had been a huge problem for my heart before I first started treatment for Lyme back in 2009 but seemed to have calmed down a lot after that. Now it has started back again where just walking down my hallway gets my heart rate up to 135-140 and if I simply stand still it stays in the 120s, but I can't stand up for long because my bp drops suddenly and will cause me to pass out. I worry about all that my organs go through by being infected with these diseases and also how much they undergo as I contiinue through extremely hard treatments to rid my body of the diseases. We recently added Florinef to my arsenal of meds to see if it can bring my bp up some and I've only been on it a week or so, but I believe it's helping. I'll know more as the nurse comes since my electronic bp machine often can't read mine since it's so low. I have to wait to have someone take it with the old fashioned cuff and stethoscope. </span><br />
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<span style="color: #351c75;">10) I wish I could say I wasn't overwhelmed by extreme exhaustion daily, but I am. I wish I could find a way to explain just how severe it is, but the only way I can think of is to say that getting up to go to the bathroom can wear me out, brushing my teeth is hard because of having to stand up, and showering seems completely out of the question. It's especially hard to shower since I have to work to get this rubber sleeve over my PICC line site and use a suction device to keep it tight to my skin because it cannot get wet at all. By the time that's done I am already worn out. Of course, the whole extremely low blood pressure issue and having my heart beat too fast do nothing but compound the exhaustion I already have.</span><br />
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<span style="color: #351c75;">11) I wish I could say that I didn't feel like a huge burden, but when you require your husband and your mother as full time caregivers you feel that way. They have to do everything I can't do, which is pretty much everything except taking the IV treatments and drugs themselves. They never act like I am a burden, in fact they go above and beyond to try and let me know they NEVER see me that way. I appreciate their loving efforts, but nonetheless I feel like a burden almost every day.</span><br />
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<span style="color: #351c75;">12) I wish I could handle getting on facebook, but for now I can't. For some reason scrolling down the screen and seeing so many things stirs up my central nervous system. I can read an article or blog entry, and sometimes even handle Instagram because it is just pictures with very little writing, but seeing so many different status updates, pictures, ads, etc. on facebook somehow affects me differently. Without facebook I can feel even more isolated because I'm unable to keep up with what is going on in my friends' lives. On that note I'll move to the next wish which is related.</span><br />
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<span style="color: #351c75;">13) I wish I could say that when I did get on facebook that I didn't have feelings of envy come over me just from seeing other people out in the world living their lives, but I do. Don't get me wrong, I want everyone on earth to be happy and healthy, but when you are stuck in your house and can't get out in the world because any loud noise could cause you to have a seizure, it is hard to not wish your own life looked more like your friends' lives. I know that everyone has their own problems and I don't believe that I am the only person going through hard times or a difficult journey. I also know there are plenty of other people who are dealing with more than I am - I am just being brutally honest about feelings of jealousy at times and how awful I feel about myself when I do get those envious feelings. </span><br />
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<span style="color: #351c75;">14) I wish I could say that I had a disease where the symptoms didn't keep me so extremely isolated, but they do. If I could just get rid of the extreme sound sensitivity that leads to seizures I would be so happy. Instead I am forced to stay in the confines of my quiet house, but I do make myself go out on the deck a little every day to hear noise from birds, dogs, cars, etc. If it was just extreme sound sensitivity (also known as hyperacusis) I would push myself to go out into the world. Mine is different though because noise leads to seizures. When it can cause you to fall and have a grand mal seizure you just can't risk trying to push through it. We were lucky at the hospital that my seizure hit just as I had a soft spot to lay down on. Seizures make you much more hesitant to push yourself out into the world and rightfully so in my opinion, as well as my doctor, husband, and mother who have all seen my seizures and know the risk of injury that come with them. I've always had a really bad startle reflex since my early teens. If someone came up behind me and tapped my shoulder without me knowing they were there I would collapse. Years ago when I was diagnosed with narcolepsy the doctors explained it as a loss of muscle control called cataplexy which can come from strong emotions. They said it was more likely that being startled caused me to feel fear and then lose muscle control. But it seems my startle reflex gets a lot worse when my extreme sound sensitivity worsens. When your brain can't tune out background noises as it should it seems to recognize all the noise as a "threat" and this will cause the "fight or flight" response to be ever present. Normal people can be in a crowded restaurant and their brains work correctly and tune out the other people talking, noises from utensils, waiters, or noise from the kitchen. Their brains know not to perceive these noises as threats so they can tune in and focus just on their own conversation. My brain hears all noises equally and can't seem to tune any of it out so the outside world is overwhelmingly loud to me. I can't talk with more than one person at a time. Hearing other people talking, like if I am on the phone with someone and they are around other people who are talking in the background, I end up having to hang up because it is too much to handle. I can even hear and understand everything those other people who are around the person on the phone are saying. Now, somedays I think I can handle a close friend coming over, just as long as they know how to use a very quiet "inside voice", don't mind that I haven't showered or that my house looks like a wreck, are fine hanging out with me in my bed while I sometimes forget what we are talking about and need to be reminded of what I just said so I can try and figure out what I was about to say. Sadly, I could plan something like that, but my friends also have to understand that I can wake up the day of a planned visit and have to cancel because I'm feeling worse or my anxiety is too high so the risk of seizures is higher. I have lost some friends through all of this, some are just more distant than they once were, but I have some awesome friends who have stuck by me and love me through it. Not to mention I've made some really good friends who deal with this mess like I do and that has been so helpful. I understand that at this age most of my friends are in what I refer to as "the busiest season of their lives" because they are raising families and I know that means that what was once free time to hang out is now filled with kids' birthday parties, PTA meetings, some friends have full time jobs as well, and just dealing with trying to be the best parent they can. I think what free time they have needs to be given first to their spouse and then, if this ever happens, I know that any "alone time" can feel like heaven to my sweet friends. So, if we're friends and you're reading this, don't feel like you need to pick up the phone and call me asap because this is in no way a guilt trip...it's just that life is busy. I truly respect all my friends who are moms and are stretched thin and I know our friendships don't change because we can't talk as often or see each other. I know it doesn't mean they love or think of me any less. </span><br />
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<span style="color: #351c75;">15) I wish I could say that I haven't had times when things have seemed so very painful and bleak that I prayed God would just take me home to Heaven. That may sound extremely strange to someone who has never suffered for a long period of time, or someone who hasn't had extreme times of trial in their lives. It is in no way a "suicidal thought", it is truly an honest crying out to God asking that if I cannot get better, if this (pain, seizures, nerve pain, neurological issues, everything that adds up to my suffering) never goes away, that being healed in Heaven would be my choice. Yet, I know it is not up to me and I do know that God counts all of our tears. He hears my cries and understands they come not from a wish for death, but a desire for a life free from this...basically just from a desire for my suffering to stop. I would much rather it be that I get better and be able to live a normal life here with my husband, but when your brain is overrun by neurotoxins and you feel you are at the bottom of a deep pit, you pray for any way to get out.</span><br />
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<span style="color: #351c75;">16) I wish I could say that my disease is one that has a drug protocol that is proven to work wonders and explain the percentages of people who find complete healing, but that's not the case. Even the best Lyme docs in the country know that you are basically playing a guessing game when it comes to trying an antibiotic protocol because each bacteria react differently just as the patients react differently to the meds. I wish I knew if I was going to get better and then slide back again and repeat this whole cycle over, but I don't know. I just pray that isn't the case.</span><br />
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<span style="color: #351c75;">17) I wish that I could say that everyone else's version of normal daily life seemed normal to me, but it doesn't. Of course, my version of normal daily life seems just as weird to them. When I have been on facebook in the past 5+ years and I read a status where someone got kids off to school, went to work, caught a quick dinner because one child had to be at soccer practice, and then got the kids bathed and went to bed...it really blows my mind! I just think, "Wow! They took a shower AND left the house in the same day?" I cannot even comprehend all the other stuff they accomplished. To me normal is not leaving the house for months at a time except for doctor appointments. I know it is odd to write this, but I guess after years of dealing with my reality, my life seems normal to me. I know if I felt well then you could not keep me in this house! But, being sick and exhausted, when I think of all that my friends accomplish I am truly amazed! I mean, I haven't even been able to drive my car since July and that doesn't seem odd to me anymore. I guess because I went 2 years last time without driving and I'm not feeling up to leaving the house anyway. I will say that I do miss driving because sometimes when I want to go buy something, I realize I can't and I have to ask my husband or my mom to do it. I know it would make me feel like so much less of a burden if I could run a simple errand or make a quick trip to the grocery store.</span><br />
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<span style="color: #351c75;">Okay, that's a long list and honestly that's only some of it. There is just so much that goes through my muddled brain and I lead a very weird life because of all of this. As I said before, I had been working on this entry for a long time and never could figure out how to get it all out or how God would lead me to end it. I think if I am being completely honest, I wasn't wanting to listen to God at that time. Like I've written...I've been frustrated. Then I was reading Ann Voskamp's blog on her website </span><a href="http://www.aholyexperience.com/"><span style="color: #351c75;">www.aholyexperience.com</span></a><span style="color: #351c75;"> and read her entry from March 18th (yes, I've been working on this entry that long). But what I read hit straight to my heart. You should go read what all she wrote, because it is far more than what I am about to copy, not to mention how beautifully she writes and how it always seems to stir my soul and make me feel stronger just for reading it. Here is what I copied word for word from her blog entry that day:</span><span style="color: #351c75;"></span><br />
<span style="color: #351c75;"><br />
<span style="color: #0b5394;">"I am free forever from any condemnation </span><br />
<span style="color: #0b5394;">and I know that all things work together for good</span><br />
<span style="color: #0b5394;">and absolutely nothing can seperate me from the love of God</span><br />
<span style="color: #0b5394;">and I have been established, anoited, and sealed by God, hidden with Christ, and I am </span><br />
<span style="color: #0b5394;">unshakeably confident that the good work God has begun in me will be perfected, that I have not</span><br />
<span style="color: #0b5394;">been given a spirit of fear, but of power, love, and a sound mind and I know I can find grace and mercy in time of need ---</span><br />
<span style="color: #0b5394;">I am born of God, <em>and the evil one cannot touch me</em>!</span><br />
<span style="color: #6fa8dc;">(Romans 8:1-2, Romans 8:31-34, Romans 8:28, Romans 8:35-39, 2 Corinthians 1:21-22,</span><br />
<span style="color: #6fa8dc;"> Colossians 3:3, Philippians 1:6, 2 Timothy 1:7, Hebrews 4:16, 1 John 5:18)"</span><br />
<br />
"<span style="color: #0b5394;">The bottom line, Lie-Crushing Truth is simply this: </span><br />
<span style="color: #351c75;">(*note here that her entry was refering to crushing lies we believe that come from Satan)</span><br />
<span style="color: #0b5394;">I am loved ... because I am chosen by Jesus</span><br />
<span style="color: #0b5394;">I am known ... because I am named by Jesus</span><br />
<span style="color: #0b5394;">I am fearless ... because I am safe in Jesus</span><br />
<span style="color: #0b5394;">I am brave ... because I am always with Jesus." - Ann Voskamp</span><br />
<span style="color: #0b5394;"></span><br />
<span style="color: #0b5394;"></span></span><span style="color: #351c75;">When I read what she wrote, I felt the desperation and frustration lift off of me and I realized one HUGE thing. I was waking up every day already hating that day. I hated treatments and everything else that I listed above and the combination was making me hate every day of my life as soon as I woke up. I realized what a slap in the face that must be to God who gave me these days to live. For those who read this and may not believe in God, I'm sure you can at least agree with the next realization I had. It was like a punch in the chest and it hurt because I realized that if I start every day hating that day it eventually turns into me hating my life, but I don't hate my life. In fact, it made me really stop and ask God for forgiveness because this is the only life I will ever get and how I choose to see each day will be the sum of my life. So, while I needed to list everything above to explain how hard my life is right now, how much I find myself in want of a different life, this is the ONLY life I was given. God has His plan and it will all work out for His good. I just had to read that blog entry from Ann's website to break some chains on my heart and to shed all the right kinds of tears...the kind of tears that melt away resentment and hate with the love we receive from God. It's BIG love, strong love, stunning love, and sometimes it's love that makes us rethink who we are and remember who God made us to be. You should really go to her website and read her blog because she just hits my heart and helps shine God's love down into the dark holes and pits I sometimes find myself in or where it seems my life is stuck in. </span><br />
<span style="color: #351c75;"></span><br />
<span style="color: #351c75;">Then, as I continued to work on this entry, I read her blog post from April 15th and there Ann Voskamp's words brought me to my knees. She was writing entries every day through Holy Week before Easter and this one caught my eye with just the title, "When You're Struggling and Holy Week is Just Hard". I was already thinking about how I wasn't appreciating my life, or finding ways to love it even when I'm going through the hardest parts and that I'd found myself backing away from God so I choked on my breath and tears flowed in abundance when I read this section of that entry (SERIOUSLY YOU SHOULD GO TO THE WEBSITE AND READ ALL OF HER ENTRY BECAUSE IT IS THAT GOOD!!!) and again the following is copied word for word from Ann Voskamp: </span><br />
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<strong><span style="color: #3d85c6;">"And our God is not a God to merely believe, but to experience,</span></strong><br />
<span style="color: #3d85c6;">not to only believe in, but be held by.</span><br />
<strong><span style="color: #3d85c6;">A God who not only breaks for you but breaks <em>with</em> you,</span></strong><br />
<span style="color: #3d85c6;"><strong>a God to not only have creeds about, but to have communion with,</strong> </span><br />
<span style="color: #3d85c6;">a God who not only dies for you, but who cries for you,</span><br />
<span style="color: #3d85c6;">the God who touches you and binds you and blesses you and heals you</span><br />
<strong><span style="color: #3d85c6;">and re-members you because He let Himself be dismembered</span></strong><br />
<strong><span style="color: #3d85c6;">and He is the God we not only believe in - <em>but we know.</em></span></strong><br />
<span style="color: #3d85c6;"><em>We know</em> - know beyond a shadow of doubt, death or despair.</span><br />
<span style="color: #3d85c6;"></span><br />
<span style="color: #3d85c6;">He has touched our tears. He has cupped our broken hearts with His scars. He has whispered to the howl, "<em>I know, I know. And I've come to begin the making of all things new.</em>" We believe. Because <em>we know</em>. He knows our grief. We know His goodness. And the truth is - <strong>we don't need an explanation from God like we need an experience of God."</strong></span><br />
<span style="color: #351c75;"></span><br />
<span style="color: #351c75;">(Editor's note from me now, but when I read that last sentence my heart exploded and I knew that I don't need explanations of why I am going through all of this - I simply need to experience it WITH God. Now, on with what Ann wrote:)</span><br />
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<span style="color: #3d85c6;">"And that is exactly what we get.</span><br />
<span style="color: #3d85c6;"></span><br />
<span style="color: #3d85c6;">We get that experience of God when He stretches open His arms on that Cross and cries.</span><br />
<span style="color: #3d85c6;"></span><br />
<span style="color: #3d85c6;">'For you. For all your regrets and for all your impossibles,</span><br />
<span style="color: #3d85c6;">for all that will never be and for all that once was, </span><br />
<span style="color: #3d85c6;">for all that you can't make right and for all that you got wrong,</span><br />
<span style="color: #3d85c6;">for your Judas failures and your Peter denials and your Lazarus griefs,</span><br />
<span style="color: #3d85c6;">I offer to take the nails, the sharp edge of everything, and offer you myself because I want you,</span><br />
<span style="color: #3d85c6;">to take you,</span><br />
<span style="color: #3d85c6;">you in your wild grief,</span><br />
<span style="color: #3d85c6;">you in your anger and your disappointment and your wounds and your not-yet-there</span><br />
<span style="color: #3d85c6;">you, just as you are, not some improved version of you, but you - I came for you, to hold you to carry you, to save you.'</span><br />
<span style="color: #3d85c6;"></span><br />
<span style="color: #3d85c6;">The thanks, the yes- it could come like sweet relief.</span><br />
<span style="color: #3d85c6;"></span><br />
<span style="color: #3d85c6;">The broken hearts - they could re-member.</span><br />
<span style="color: #3d85c6;"></span><br />
<span style="color: #3d85c6;">The lament - it could be absorbed in love." - Ann Voskamp</span><br />
<br />
<span style="color: #351c75;">I wish I had half the talent that woman has with words, but wow, how very different I felt after reading both her March 18th entry I copied an excerpt from and the April 15th entry I copied that last lengthy excerpt from. So, if you need to read something that makes you open your heart and feel like God is right there looking at the computer with you...go to her site <a href="http://www.aholyexperience.com/">www.aholyexperience.com</a> I couldn't recommend a better one to read. </span><br />
<span style="color: #351c75;"></span><br />
<span style="color: #351c75;">As for me, I wish I could promise that I would write another update sooner than this, but I can't. I can't even promise to answer the phone if you call because sometimes I can't even handle that. But, I can promise that God knows what He is doing in my life and I have to remember every single day to hand my life over to Him and not to hate a single day that He gives me. Even the really rough ones. He understands frustration, tears, and all that we could ever spill a tear over and He hears our cries and prayers. He sent His beloved son to earth and allowed Jesus to experience pain and grief and suffering just to save us...how unworthy I feel of that kind of sacrifice! But, it reminds me that I don't serve a God who doesn't understand suffering...HE DOES! He just has His own plan for my life and I simply have to have faith and know that His plan is always the best plan, even if I am seeing only small, tiny, bits and pieces of it. He sees it all come together and He knows what is best for my life because He gave me that life - and I will love it day by day and refuse to hate it even when the toughest times hit. So, while I can't always control how my brain works, or what emotions it throws my way, I can cling to God and get through it. I needed to share what I go through because it was only as I listed what I wished I could say about my life that I realized how much those feelings were controling my view of my life. My life is no less important just because I am stuck in the bed. In fact, I know from my past experience of treatment and confinement, that all of this time alone has changed me for the better. I know it has made me see things differently and I know that if my life had gone the way I had planned I would be a different person - likely one who was more materialistic, less empathetic, and I would definitely not have the relationship with God that I have now. I have an amazing marriage and I wonder if life were different, if I would have ever been able to see and appreciate my husband the way I do now. So, a big thanks to Ann Voskamp for letting God guide her words and for God to steer me towards them just as I needed to read them the most.</span><br />
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<span style="color: #351c75;">Much love to you all! Thanks so much for the love and prayers!</span><br />
<span style="color: #351c75;">K</span>Khttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-19857083522250223382014-01-21T00:58:00.000-06:002014-01-21T00:58:39.740-06:00Anxiety that aboundsMy neurological problems that come along with Lyme and the co-infections I have (Bartonella and Babesiosis) cause an overwhelming amount of anxiety. I can't control my emotions or the directions my thoughts go in, not to mention that my brain feels like it is going 90 miles an hour at all times. This makes things very difficult when trying to prepare for any type of change. Especially when that change is getting another PICC line put in and starting IV treatments again. My doctor sent in the order for my PICC line last week and the date for the procedure is tomorrow (well technically today as it is past midnight as I write this) at 1:30.<br />
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However, the orders for the home infusion company have not been sent in yet. This is important because the day after the PICC line is put in a nurse has to come here and do a proper dressing change for the line. Not to mention that I have to have supplies delivered like the kit for the dressing change, the IV bags, the lines to connect my bag to the PICC line, saline flushes to keep the line open, gloves, alcohol wipes, etc. I have to have everything that a hospital or doctors office would have to do this at home. So, I have to call my doc's office as soon as they open to make sure all of this gets set up. Otherwise, I end up having to reschedule the procedure for a later date and I am ready to get started now!<br />
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The night before I scheduled the appointment, I didn't get to sleep until after 5:00 a.m. despite the many medications I take to help me sleep. That's what anxiety does...it keeps you guessing, keeps your mind rolling, and ends up leaving you zapped. Of course, the overall body pain I experience keeps me awake as well, but I know if I could control my emotions more that sleep would come easier. So, I'm not in the best mindset right now.<br />
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I feel so frustrated about having to go through all of this again. I feel like the past 9 years have been stolen from me, because I had to quit work at 30 and I'll be 39 this spring. This was when I had been planning on having kids and being a stay at home mom. My college degree is in Human Development and Family Studies with a focus on both early childhood development and marriage and family therapy. Basically, I majored in how to be the best wife and mother I could possibly be. It's what I always wanted to be and a dream that has so far been unfulfilled. That is hard and heartbreaking. <br />
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Today I was trying to clear out my bedroom to make room for the mini-fridge that has to be put back in to keep the bags of antibiotics chilled. So, I took a lot of stuff down to my storage closet downstairs. I had to reorganize some things and I ran across all these children's books I have kept/collected over the years. I started buying children's books that I loved back in high school. I added to the collection when I taught preschool and saw which books the kids really responded to. I kept college textbooks about all things kid related...titles like "Painting and Arts for Children", "How Play is Important in Childhood Development", "Discipline Techniques for Young Children"...the list goes on. I don't know what God's plan is for me in that area. I know He could bless me with a child, or push me in the direction of adoption. Yet, being human, I can only see the realities of the difficulty of having a child at an older age, having only one ovary due to losing one from these diseases, and the scariest being passing these diseases to my child during pregnancy. Lyme can also cause women to miscarry and I think of how hard that would be on me emotionally. However, when I look on what I've been through, I end up thanking God for not giving us children before all of this happened. Why? Because if I can't even take care of myself how on earth would I handle a child? With my sound sensitivity how could I deal with the noise that comes from a child playing, crying, or throwing a tantrum? The answer is I couldn't and I would beat myself up endlessly if I couldn't be the mother I always wanted to be. So, I try very hard to see my childless lifestyle as a blessing for right now. But, as I said, my brain is not working normally so it makes it very difficult to control my emotions about these things and I often cry over what I see as unfair. Anxiety makes me focus on what I feel I've lost instead of what I have.<br />
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Right now I feel the need to count my blessings. The biggest being how I have grown in my faith, even when I question things I remember God is in control. Another HUGE blessing is my wonderful husband who is my best friend, my biggest advocate, my confidant, my caregiver. The immense love he shows me daily by bringing my food to bed without even thinking of it as a chore is just one example. He listens to my ramblings, my questioning, my worries and he gives me such wonderful advice on how to cope with it all. Honestly, his love truly humbles me as he never complains about anything and assures me that we were meant to take this journey together. His view is that God knew this would happen to me changing his own life as well and that he sees the positives in how it has worked in our life together and even worked to make our marriage stronger. I named this blog, "Our Life In My Words" for the specific reason that it is OUR story, I'm just the one writing it. I am blessed with an amazing family who make sacrifices for me all the time. My mom is definitely my second biggest caregiver as she comes here at least three times a week to help with laundry, grocery shopping, and cooking meals. She selflessly gives and shows her love in countless ways. My dad would truly do anything to make me well! He wants to know every detail of how I feel, what the doc says, what we are trying next to hit this, and he gives up time with my mom so she can be here for us. I have support, love, and continual prayers from my in-laws who often deliver meals and try to find any way they can to help us. My sister, brother-law, nieces and nephews love me and pray for me even though I rarely get to see them. My husband's brother, my sister-in-law, and their two wonderful girls live in another state but they pray for us constantly. I count these as huge blessings because I know many devastating stories of Lyme patients whose families don't believe in their illness, some whose spouses often leave because the pressure is too much for them. Sometimes worse are the patients who can't even get treatment because of the lack of Lyme doctors and the fact that most aren't able to accept insurance because insurance companies don't believe in treatment for chronic Lyme. They seemingly ignore the abundance of studies showing long term treatment is key in getting people their health back. Many patients have lost all they have to pay for treatment and others have to quit before they're well because they have no money left to continue.<br />
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After typing all of that out I now see that I am truly showered in all the blessings that count. Those blessings outnumber the things I just wrote about being stolen by this disease. I may not have children right now, but I have no idea what the future holds for us and I cannot dwell on what I don't have if I focus on all the amazing things I do have. Honestly, this is why I write this blog. I do hope it reaches others, helps them deal with their own difficulties, but God reaches me through my writing to change my heart and my mood. Many people praise me for going through all of this with such strength, but that makes me very uncomfortable because I am weak and human and prone to selfishness. What may come across as my strength is really only the strength that God gives me. I write what is going on, I often whine, and yet He comes along and turns me around to show me His glory in my story. How can I not be in awe of that? If you truly knew the mood I was in when I started typing and the peace I now have in my heart, well, you would see God at work. There are so many people going through things much harder than this. How can I complain when I ask for peace and strength and God graciously gives it to my whiny, frustrated, anxiety filled heart. I do nothing to earn that. He gives it freely and I cannot adequately express my extreme gratitude for it. <br />
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I'm sorry that these entries are sometimes so very long. I wish I was the type of writer/blogger who could be more concise and to the point, but I'm not. As I said, this is written for me as God seems to teach me many things through my rambling writing style. I can't change the length of these entries, because sometimes it takes that long for God to grab my heart and change it from doom and gloom to hopeful and thankful. I appreciate all of you who take time out of your day to read this. I hope something I share helps you in your life, that God uses me reach others and show them how powerfully He works in my life. I pray today goes smoothly and everything falls into place, but if it doesn't I refuse to get upset over circumstances beyond my control. I choose instead to believe God's plan for me and my life is better than the one I had mapped out in my own head. I choose to trust Him because that is where my strength, peace, and much needed patience comes from. I shudder at the thought of going through this without His guidance. I pray He touches your life and you feel His guidance as well. Sometimes the best thing for anxiety that abounds is to realize you aren't in control of everything. You can only do your best, but without Him I know my best falls so short.<br />
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Khttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com2tag:blogger.com,1999:blog-6491588961853158395.post-91751509931232606472014-01-09T12:49:00.000-06:002014-01-09T12:49:03.849-06:00What to do when your life slides backwards...<span style="color: #38761d;">Okay, the title here is a big question that I have been pondering for months now. After I do as shortened a version of "catch up" on all of this as possible, I will come back to that question. For now, I need to catch people up.
After 27 months of daily IV antibiotics, which I completed at the end of September 2011, I felt a lot better. I was doing normal things like laundry, grocery shopping, cooking, and I was even beginning to start meeting up with friends again. Things went well for about a year. Then exhaustion started setting in around September of 2012. Not the typical "tired and wish I didn't have to get out of bed" exhaustion, but the literal cannot get out of bed without feeling physically drained type. We went to my doc and discussed that since I had 3 prior sleep studies which indicated narcolepsy, perhaps that was just something that wasn't going away and we treated it with the stimulant drug, Adderall.</span><br />
<span style="color: #38761d;"></span><br />
<span style="color: #38761d;">After 5 months, basically early spring of 2013, I started noticing neurological issues returning. I was having more difficulty balancing and bumped into things a lot, my memory was getting worse, and I was searching for words whether I was talking or just writing a simple Facebook status. I was scared that it was the Lyme and co-infections (Bartonella and Babesiosis) coming back, so I prayed for it to be anything else. We ran tests on my brain neurotransmitters, meaning we tested my levels of seratonin, GABA, dopamine, norepinephrine, along with others. My tests showed some abnormal levels so we implemented a supplement regimen to help try to get the levels back in the normal ranges praying this would solve the problem. But, it had little effect and I knew my brain function was getting worse. I would get out of bed and by the time I stood up, I would forget what I got up for. I would look to see if I needed water, no, check to see if I had been thinking of getting something from the kitchen, again no. I would stand there for 5 minutes sometimes before it hit me that I had gotten up to go use the bathroom. Conversations were so hard for me, my sound sensitivity was getting worse, and I was scared. Then, in early July the seizures came back. After over 2 years with no seizures, I was having grand mal episodes again. This news actually made me feel a bit better since I know that the co-infection Bartonella causes my seizures and I know that the antibiotic, Rifampin, is what kills off the Bartonella (in my case at least). So, we decided to do 4 months of oral Rifampin and we prayed that it would clear everything up.</span><br />
<span style="color: #38761d;"></span><br />
<span style="color: #38761d;">The Rifampin cleared the seizures up within a couple of weeks. I was so hopeful that I even went to my 20 year high school reunion in late July. My doctor and my husband advised against it, but I went anyway. Looking back, I think I was fueled by pure adrenaline from my desire to be there. My husband couldn't go with me because he was dealing with a stomach bug. I went by myself. There was a band there so I was dealing with the most noise I have heard since 2007. Luckily, they took a break for awhile and I just tried to visit with people I never get to see anymore. However, my central nervous system was going haywire! The combination of music, loud conversation, and trying to remember names and faces was so overwhelming. I know I talked too much to people at times because if I could focus on making myself talk, it helped drown the other noises out. There are some conversations I can't even recall and I am fairly certain I made weird comments, maybe said stuff that I wouldn't normally, or didn't make a lot of sense to people. When the band started back up I had to grab a close friend's hand and head out the door as fast as possible. I sat outside and took an Ativan troche (which melts under my tongue) to help with the shakes and had a severe panic attack. I had to leave, even though the fun had just started for most people. Somehow I made it home, crawled in my bed and cried my eyes out. It took 5 hours for my brain to calm down regardless of the arsenal of drugs I have to help do just that. It took a week for me to recover physically and I ended up wishing I had never gone because I felt like I probably looked like a complete nut job to some people. On the bright side, it helped showed me just how bad things had gotten and how seriously I needed to fight again.
</span><br />
<span style="color: #38761d;"></span><br />
<span style="color: #38761d;">Then, after a month or so of the oral Rifampin, I began to have extreme pain in my shoulders, back, and spine. This pain was so severe it would trigger a seizure. So, I started having seizures from pain instead of Bartonella. Nerve pain came back with a vengeance as well. As much as I hated it, I was back in bed and in the past 5 months the only times I have left my house have been to go to the doctor and my massage therapist. Rifampin is an excellent drug to hit Bartonella, but it does not hit Lyme. So, these other issues were basically the Lyme coming out in my body again and wreaking havoc. I finished my 4 month course of Rifampin and went back to the doctor to discuss options.
</span><br />
<span style="color: #38761d;"></span><br />
<span style="color: #38761d;">My case is close to a worse case scenario for a Lyme patient. My doctors traced my original Lyme tick bite to when I was 3 years old. I then had a 2nd bite when I was 29 that gave me Bartonella and Babesiosis. Despite seeing over 30 specialists, I wasn't diagnosed until I was 34. Basically, this means that Lyme had plenty of time to invade most of my organs and body tissue. So, while we knew that I was not "cured" after 27 months of IVs, we did hope we had knocked it out more than it appears we did. So, in mid January I will be getting another PICC line placed in my arm. That is a small tube that is inserted into a vein in your upper arm that feeds into the top of your heart, so it is not something that me, my husband, and especially not my doctor take as an easy decision. We knew in my case all of this could surface again, we just prayed it would not. To put things in a perspective that might be easier to understand how I feel physically, my immune system is overrun. Not just by Lyme and the co-infections, but by other "opportunistic infections". I have never had a negative mono test since 8th grade. I don't mean my tests just show past infection, they show extremely high titers indicating active infection. The last one was done in June and it was my 7th positive one. I have also not tested negative for Influenza in 5 years. No one has been able to figure out why I have run a low grade fever (99.5-101) daily for almost 4 years now. These smaller infections hang out because my immune system is a playground for them in a way. Weird thing is that I never give anyone mono or the flu, I actually don't get anyone sick, but I do catch whatever comes around! Also, you can't hit the small infections without getting rid of the larger causal infections, Lyme, Bartonella, and Babesiosis. All that said, when your choice is to continue to slide backwards and get worse, or to do whatever you can to fight, the decision will always be to fight.
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<span style="color: #38761d;"></span><br />
<span style="color: #38761d;">
For those of you who followed my blog through my first round of IVs then you will recognize the positives of doing this now versus when we started back in 2009. My heart is healthier, my pulse rate stays much more stable (rather than going down to 40 and then randomly jumping up to 200), I am now 117 lbs. instead of the sad 95 lbs. I weighed back then because I am absorbing food much better. So, while I am not near death's door like I was when I was first diagnosed, I am far from feeling nearly as well as I could be, or even as well as I was when I first stopped IV treatment. But, these positive differences in the 2009 me versus the now me are good signs for my treatment. I was too sick back then to be able to handle a cyst-buster medication (Lyme can go into cystic form where it is able to protect itself against the antibiotics) so we pray that a strong antibiotic combined with a cyst-buster medication will be very effective. Also, I was too weak to handle any drugs that target Babesiosis (which is a malaria like disease that attacks the red blood cells). We pray I can now handle some form of treatment for this. The downside for treatment is what is called the Herxheimer reaction - that is where the treatment causes your symptoms to flare and get a lot worse before they get better. So, there's always the chance that I have to go back on oxygen, or that my pain will be more intense, or my neuro symptoms even worse. It's the price you sometimes have to pay for treatment. Also, with Lyme you never know which antibiotic will work for you. Each patient has different outcomes even if they are treating the same bacteria with the same antibiotic. In short, what works for some does not work for all. This, plus a huge lack of real research into this disease, means that treatment is a guessing game when it comes to choosing what meds to use and when you know whether they are working for you. It's uncertain and uncertain can be scary.
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<span style="color: #38761d;"></span><br />
<span style="color: #38761d;">Now, scary brings me back to what do you do when your life slides backwards. You get scared. You wish things would change. For me, I wish things were "fair" and that after years of battling, I could be well. Yet, none of that is helpful. My brain doesn't work right so I get overloaded with anxiety and this is problematic when I am trying to be rational and calm about medical decisions. Yet, what eases this is knowing that fear is not from God. God has been seeing me through all of this and He will continue to guide me, even if what looks like sliding backwards to me is just the opposite to Him. It could be that I had to give my body time in order for my absorption issues to get better, or to rest my heart, and that now He knows it is a good time for my body to try stronger meds and treatment protocols. I just wouldn't have done it had it been up to me and my health hadn't declined so rapidly. But, it could be that God has a much better plan for my health than I was willing to fight for. I was just fighting to not feel like death...maybe His plan is to give me a much healthier life after this than I had dared hoped for. So maybe what looks backwards to us is actually very much forward motion to God.
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<span style="color: #38761d;">I know this has been long, and I apologize, but it is hard to summarize what all has gone on in 2 years. It is also hard for me to be concise when I spent most of my time writing this searching for the right words to use because I cannot pull them out of my brain easily. I do want to add something else that God laid on my heart when I was talking to Him about all of this. He gave me the thought about the difference between the words "deserve" and "accept". We often find ourselves saying that we deserve to take that nice vacation, or we deserve to buy a nicer house or car, and what do we give as our reason? We always say that we've worked hard for these things so we deserve them. Then there is the flip side when we think we, or someone else, don't "deserve" something hard or difficult in our, or their, lives. This brings me to the word "accept" or even "acceptance"...this is almost always used when something bad does happen in our lives and we find ourselves saying we are trying to accept the bad news, or accept the obstacles we are facing. Here's my thought on this. If you truly believe Christ died on the cross to pay for your sins, if you know that even when we turn to Him we are still such imperfect sinners, well, can we truly say we "deserve" anything when we look at it that way? Or should we all start realizing that we should accept everything in our lives because we haven't done anything to deserve God's blessings or even His love. He gives His love unconditionally, thankfully we don't have to "earn it" or we would never "deserve it". When good things happen in our lives and we are able to take a nice trip or buy a nice house, shouldn't we accept those blessings with gratitude, thankfulness, love, and with the utmost humility? And, when the bad things happen, and they eventually happen to all of us - just in different ways, shouldn't we accept those things with the courage and strength God gives us along with unwavering love and the CERTAINTY that God can work all the things we perceive as "bad" to His GOOD? So, as it looks like things are sliding backwards in my life right now, I trust God sees the direction I am heading as forwards. As much as I have those days where I think that awful phrase, "I don't deserve all of this!" or even, "God, how can I just accept all of this?", I am choosing to see that I truly don't deserve anything good or bad. I am just thankfully accepting all that God gives me in this life because He only gives His children good things. He didn't make me sick, but He has given me the strength to fight for this long and I know He will carry me through the hard times as He has always done. So, if you are reading this and going through a period of many blessings, accept them and humbly thank God for them. If you are reading this and going through trying times, accept them and call on God to help you through them. He will. Only through Him can we do more than we thought possible!</span>
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<span style="color: red;"><strong><em>"I can do everything through Him who gives me strength." Philippians 4:13 (NIV)</em></strong></span>
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</span>Khttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-23865659863386338642011-07-14T14:56:00.007-05:002011-07-14T22:20:07.840-05:00Beyond blessed....This is my longest entry to date, and that's saying a lot. BUT I have so much to write about in this entry and I’ve never been as excited to write an update as I am now. I also feel an awesome responsibility to convey this message as God would want me to, and by that I mean I need to PRAISE GOD for getting me to this place of blessing rather than praise any doctor, any medication, or even my own decisions about my treatment. So, right now, as you read these words please take a deep breath and give God the glory for where I am today. I waited to write this entry because honestly, I’m always a little nervous when I write about progress…as though it could be ripped away from me if I got too excited about it. Others who have battled Lyme, Bartonella, and Babesiosis will understand these feelings because we can have amazing days/weeks/months and then one of the infections will flare up again and we slide backwards. Well, that could very well happen to me BUT I refuse to let those fears dictate how I share my victories because to do so would be to rob God of the glory and praise due His name!<br /><br />About 6 to 8 weeks ago I was in the shower feeling pretty “poor, pitiful me” because I knew I was approaching the 2 year mark of treatment. As the water poured over me, I started to wonder when I was ever going to feel better. I basically have a running dialogue with God every day and I wasn’t really “asking” Him, but I was sharing my frustrations, which included my mind questioning when I would ever wake up and “feel good”. An answer hit me like a ton of bricks: “You have to FIGHT for it!” I got mad then because I thought, “I’ve BEEN fighting! I’ve been taking all the prescription drugs, seeing all the doctors, following the diet restrictions, and taking the vitamins and supplements! What else am I supposed to do???” The answer was clear again: “Trust in ME and start to push yourself!” I knew exactly what that meant. I’ve been scared to get back out in the world again. It’s understandable since for almost 2 years a seizure could hit just from hearing an unexpected noise. While I’ve been very grateful to be home and not in Kansas City, I had to recognize that I had made a virtual fortress of quiet here in my house. I understood then that if a “normal” person (or someone who hadn’t dealt with noise sensitivity as I have) had lived in my house of silence for a year, they would think the outside world sounded like a rock concert when they emerged. So, in that shower I realized I had to TRUST God and to hand Him my fears. I knew my noise sensitivity was much better than it had been just a few months ago and that I was ready to try more things outside of this house. My last real entry on here was entitled, “Life outside of Lyme”, and I had no clue then that it was foreshadowing that my life was literally heading OUTSIDE!<br /><br />There were other obstacles besides fear of course. I haven’t been out of the bed much at all for the past couple of years, but especially this past year since I started IVs at home and didn’t have to walk anywhere. My legs, feet, and my ankles were really not used to supporting my weight. I realized this more in hindsight because after walking around the house or just standing for any length of time my feet would hurt and when I tried to sleep those nights my legs and ankles would ache and keep me awake. I understood then that there was never going to be a day that I just “woke up and felt good” as I had talked with God about that day in the shower. Again, someone who hadn’t been sick but who had just been off their feet and in the bed as long as I have would have to work to get muscles back. This new “fighting” I had to do didn’t refer to the illnesses I have, it really was more about the physical rehabilitation I would have to endure to be able to function out in the world! So, I prayed and I pushed and I saw results!<br /><br />My first outings were with my mom going places during the week while most people are working so public places, retail shops, grocery stores, etc. aren’t as crowded or noisy. Every time we ventured out I saw more progress in what I could handle. I didn’t go as slowly as I thought I would either. I really DOVE into public life again going into places I never would have been able to handle before – like a department store! I was getting out of the house 2 to 3 times a week which, as you know if you’ve been reading this over the past year or more, is HUGE!!! Mom and I were giddy as we saw how much more I could handle. Just thinking about it makes me smile so much! I started supervised driving since it had been so long since I had a seizure. We started with back roads where I felt safe but eventually I ventured out onto the interstate and I did GREAT! Noise hasn’t been my only obstacle to the outside world – it was my biggest, but motion was hard on me as well. Seeing too many people or too many cars or too many of anything was so hard these past 2 years that not only could I NOT drive, at times I even had to cover my eyes while I rode in the car. So, it has been miraculous to get out there and really tackle these obstacles!<br /><br />Two weeks ago I had an appointment to see my doctor. For the first time in over 2 years I took a shower, dried my hair, put on full makeup, and got dressed not only in the same day but I did it within a two hour time span! Before now I have usually had to take a shower the day before I go somewhere because it exhausted me. This day I was getting ready and as I was putting the finishing touches on my makeup, I looked in the mirror and I was smiling and kind of bopping my head about as if there were music on. I stopped immediately and I took a deep breath, and I said, “This is what it’s like to feel good!” because I haven’t felt like that in YEARS! I’m 36 years old and I quit work when I was 30 because my health had declined that much. I can’t even remember the last time I got ready to go somewhere and wasn’t exhausted by the effort! Tears came to my eyes and, overcome with joy, I got on my knees and just repeated, “Thank you, God! Thank you, God! Thank you, God!” I went downstairs where my sweet husband was working and I said, “I FEEL GOOD! For the first time in years I can say that I feel GOOD!” Oh, the praises that were coming from my soul were overwhelming. Then I drove us to the doctor’s office at the hospital! To say I felt blessed doesn’t quite cover it!<br /><br />Then last week I had a rough time. My symptoms flare every four weeks but I had also tried to go up on the dose of one of my medications and it was too much for me. I was back in bed, exhausted, sick to my stomach, unable to eat much and with mouth ulcers covering one side of my top and bottom lips. My blood pressure was so low the nurse had to take it three times before she could get a reading and it was 76/48. So I had a week of feeling bad again. I was mad at first because it’s so hard to slide back but then God showed me that my “bad days” right now are like my “good days” were 1 year ago and like my “great days” were 2 years ago. I’m not sliding backwards now so much. Treatment started with 1 step forward and 2 steps back it seems. Then I got to 2 steps forward and 1 step back. I got to see that now it’s more like 5 steps forward and 1 step back. PRAISE GOD FOR SO MUCH PROGRESS.<br /><br />And then I cycled back this week to that wonderful place of amazing progress. Monday I actually drove myself to get gas in my car, went into Publix to get a couple of things, and then finished at Whole Foods and drove myself home. It has been 27 months since I have been able to drive anywhere by myself. Tackling those errands alone was like completing a marathon for me. I probably had a smile plastered on my face the entire time. I felt like I had a life again. For so long I have felt like a burden to my husband and my family since my mom comes and takes care of me 4 days a week. It was amazing to feel like I was able to be a help and actually run errands! Mom has been at the beach this week with my dad and my sister and her family. It was a much needed vacation for her but I knew she really was worried about leaving me. How wonderful it was to call her and tell her what all I accomplished! And I didn’t just run errands – I actually put the groceries away, fixed my lunch, did my afternoon IV treatment, and fixed dinner for M and I that evening! OH HOW HAPPY I WAS!!!<br /><br />This week I’ve done more cooking and with that I’ve been cleaning the kitchen. I LOVE music and before I got so sick I would always play it when I cleaned. I haven’t really been able to enjoy it because of my sound sensitivity the past couple of years, but I took my computer to the kitchen and had music playing while I cooked and cleaned. I stopped when I realized I was dancing to the beat some and I was singing along with the music! I was unloading the dishwasher and DANCING people!!! Oh how much joy there was in doing a chore that I used to hate! I actually just turned around and around in the kitchen with my arms spread out – kind of like little kids do – just enjoying the ability to move and I smiled and praised God for it all while I spun around! I have to go back to bed eventually of course – I’m not all the way there YET, but I know I’m on my way! I hope I have been able to convey just how amazing all of this progress has been to me and how grateful I am for it. I’m humbled by God’s graciousness, awed by His unmerited favor, and I feel beyond blessed!<br /><br />Now, there are difficulties ahead because the antibiotics are fighting all of these things for me right now and while that’s good, it also means that they have basically replaced my immune system. It hasn’t had to fight because the drugs are fighting for it. I will be tapering off of one of the antibiotics soon because it's been 6 months and we believe we have gotten all the benefits we can from it. Then once we stop seeing all of this progress – when I plateau basically – I will taper off the other drugs. So I am having to work hard to do what I can now to rebuild my immune system so that when I stop the antibiotics I don’t end up feeling bad again. To do that I’ve started working on the basics – like what I eat. I am eating all organic fruits, vegetables, and meats. I am keeping an eye on how many carbs I allow myself to eat and I have stopped eating refined sugar pretty much completely. I will allow myself a “treat” – like I had a piece of cake 1 month – but mainly I get my sugar from the fruits I eat and I eat A LOT of fruit! Pineapples, strawberries, and kiwi have been daily staples for their high levels of vitamin C and they help me to feel like I’m getting some “sweets”. My doctor and I are also discussing some IV vitamin/mineral treatments but those would have to be administered at his office and he’s not really set up for that. It takes having a nurse to check on you and the infusion usually takes 3 hours but he's really willing to try whatever we need so if we decide that's the way to go, I think he'll make it work! Basically, we are trying to boost my immune system at the cellular level and it’s true that you are what you eat!<br /><br />To those of you who have been reading my posts for over two years….thank you. From the bottom of my heart I thank you for your care, concern, and especially your prayers! I do have prayer requests still and what I write now will let you know the specifics of those requests. I have already said the difficult thing about Lyme, Bartonella, Babesiosis, and other tick-borne illnesses is that they do have a cycle and like I explained, they “flare up” at times. I also know some of you reading this are fellow patients so I always want to share what my treatment protocol is so that God may use whatever He leads me to do to help someone else. But, I must stress another problem with these diseases is what works for one person doesn’t always work for another. So, I’m not saying that if you take the drugs I take or do what I do that you will see the results I have seen. I just want to share insights as others have shared with me. I also want to educate people who don’t have a tick-borne illness. I want them to know just how hard it is to find a doctor who knows anything about these diseases or who takes them very seriously. I’ve seen more articles in mainstream media lately about these illnesses so I pray that more people will educate themselves on how to keep from getting sick or how to recognize symptoms if you do get sick. The articles aren’t great sources of information though because these diseases are so under reported by the CDC and doctors will say a 6 weeks course of antibiotics will take care of it. You who have followed me know that was definitely not the case for me. I believe the best information you can get is on the International Lyme and Associated Diseases Society website www.ilads.org . Please educate yourselves and seeing as how we’re in the middle of summer and everyone is outside PLEASE – I cannot stress this strongly enough – PLEASE check yourself, your family, and your animals for ticks!!! I pray for the day that I can look out at my backyard and simply see the trees and grass and not immediately have my mind think about how many ticks are hidden out there with various infectious diseases! I know that day will come and I want people to be aware, not scared.<br /><br />Now, some of you may be reading this thinking I’m crediting God instead of recognizing it was medical science that has gotten me to this point. But, the reason I know for certain that my progress is from GOD is because I’m the person who comes up with my treatment regimen and we all know I’m not a doctor. I say I come up with it, but really what I do is research and pray. I pray fervently about what to do next. I read and research and M and I talk about it and we both pray about what to do next. My doctor knows my research is based heavily on the treatment guidelines written by Dr. Burrascano who is considered one of the leading “experts” on tick-borne illnesses (these can be found on the ILADS website I mentioned). We discuss what I want to do and my doctor tells me what he thinks – if he thinks I’m on the right track or if he thinks it’s too much for my body. He is very good about keeping me from pushing too hard with the medications. So, with his guidance, I’ve learned that taking things slowly (starting with lower doses of the drugs, building up to a dosage that works for me) is better for me because I can handle things better and basically it keeps me from feeling as horribly as I did when I first started treatment back in Kansas City. I thank God for pairing me with an open minded doctor who is more results oriented than any other I’ve met. But, he will be the first to tell you he’s not a “Lyme doc” and he’s not. I think that’s part of the reason God has me with this doctor because I can’t see a long list of patients with tick-related illnesses that’s he’s helped cure! It makes me that much more aware that God is in charge of this. My doctor is also very careful to explain the dangers of long term antibiotic therapy – and believe me there are SERIOUS risks that come with this treatment. However, M and I prayed about that too and we know that in my case the risks have been worth the rewards. So, before I meet with my doctor, I basically figure out my top 5 worst symptoms and then I research to see which infection could be the main cause. For me, Lyme disease in itself has not been my biggest problem at all! My worst symptoms come from the co-infections of Babesiosis and Bartonella, which sadly most people and MANY doctors just aren’t familiar with! In January I wrote that I started IV Rifampin to target the Bartonella. Bartonella is what was causing most of my serious neurological symptoms. I did “herx” a little (where symptoms flare because you’re killing off the bacteria – you can look up a better definition if you want) and I had to deal with the side effects of the drug – like being absolutely exhausted. I’ve never been so tired. I was back on oxygen and still just lifting my head from the pillow was hard. Then we started B12 injections to help my red blood cell production and I started seeing good progress then. I knew I had to tackle Bartonella before I could really attack the Babesiosis, which is the parasitic infection – it’s a lot like malaria. It’s parasites that infect your red blood cells and it’s hard to get rid of, much harder than most medical research leads you to believe. I think Lyme suppressed my immune system so that when the Bartonella and Babesia hit me, I had no defense and they basically ran rampant in my system. Babesiosis is what had me close to death when I first went to Kansas City. It was killing my red blood cells and that’s what carries oxygen to your brain and it made my blood very thick so really starting the blood thinner, Heparin, was a life saver. So Babesiosis was my next target and after 6 weeks of Rifampin and 4 weeks of B12 shots I asked to add IV Azithromycin to my treatment regimen. While Babesiosis is a parasitic infection treating it with a combination of Azithromycin and an anti-protozoan drug (like Mepron) has shown the best results in most patients. But I knew I couldn’t take Mepron. We’re not sure if I have a bad reaction to the drug or if it’s that my Babesiosis is so rampant that I herx too much on the drug – we just figured out after many trials that I simply cannot take it. My doctor mentioned a year ago that we might try Tindamax as an anti-protozoan drug whenever we got me to the point of being able to treat the Babesiosis. So we prayed about that and as scared as I was to try this drug – and believe me there is fear about starting ANY drug because there are risks – I knew after much prayer that it was time to try it. I started it about 6 weeks after adding the IV Azithromycin. While I did have some herx symptoms, we know that God leading us to take that drug is why we’re seeing so much improvement in such a short amount of time! I have had to battle fear a lot during this process and I try to always hand it over to God, but we all know how hard it is to do so. I had to hand my fears about this drug over to Him, and oh how glad am I that I did! PRAISES!!!<br /><br />This has been so long, but I honestly couldn’t leave any of it out. I don’t know who will read this – there may only be 10 people in total that do – but if there is one person who benefits from anything I write, I will consider this a HUGE success. I would love to think that I helped someone to get a diagnosis, or that I helped a fellow patient through the hardest times of treatment, but what I would love more than anything is to think that God used me to reach someone to come to Him - that He used me to show Himself as LOVING, STRONG, MIGHTY, AND WORTHY OF PRAISE!<br /><br />Thank you all so much for your continued prayers. I have experienced the darkest days of my life during various times over the past two years and the knowledge that there were people out there praying helped me see God’s love in action, even from my sickbed. I ask that you keep me in your prayers as we continue this battle. We are not done yet and I have a LONG way to go still. I can stay out of the bed for 3 to 4 hours at a time SOME days, but I still live a lot of my life from the bed. It will take more time, but this wonderfully amazing LIGHT that God’s showing me at the end of the tunnel makes me feel more patient and more persistent at the same time. I will continue my fight but I do so more calmly now, resting in the peace that only God can give. I hope all of this makes sense. I pray I’ve done justice explaining all that God has done for me, but I can’t imagine having accomplished such a task! Oh…I almost forgot that I am adding my most recent picture so you can all see what I look like with some makeup and feeling stronger. This was taken a week or so ago after one of my trips out to Whole Foods. I do think I look healthier…but makeup does do wonders – HA!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin9KWn8ncn0v6cQyfDc4tFhtGvJA6UhvIE8KN0OS8OQiOJ2PldW41O2chMXOIjxG8O0NjH53vKN2TBMHSI_80thXfjDa69LsQ37f6XMP3D9zs5EvSaRZCe4tPmyQzic25EVVuEkBi-Eqhe/s1600/BLOG.jpg"><img style="WIDTH: 218px; HEIGHT: 310px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5629303942899595298" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin9KWn8ncn0v6cQyfDc4tFhtGvJA6UhvIE8KN0OS8OQiOJ2PldW41O2chMXOIjxG8O0NjH53vKN2TBMHSI_80thXfjDa69LsQ37f6XMP3D9zs5EvSaRZCe4tPmyQzic25EVVuEkBi-Eqhe/s320/BLOG.jpg" /></a><br /><br />Finally, I MUST share some of the very first verses I wrote on this site because I claimed these verses – I clung to these verses – and I feel all of them help me SHOUT what God has carried me through and what He continues to do for me:<br /><br /><em><span style="color:#ff0000;"><strong>“Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!” 2 Corinthians 5:17<br /><br />"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe." Psalm 61:1-3<br /><br />“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18<br /><br />"The Lord is faithful in all His words, and gracious in all His deeds" Psalm 145:13<br /><br />"The Lord will guide you continually, and satisfy your needs in parched places, and make your bones strong." Isaiah 58:11 (NRSV)<br /><br />“We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.” Romas 5:3-5 (NRSV)<br /><br />“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 41:28-31</strong><br /><br /></span></em>And last but not least…<br /><br /><strong><em><span style="color:#ff0000;">"O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1<br /><br /></span></em></strong>Oh, how I feel like a new creation, He has been my refuge and my strength, He was always with me – even when I was crushed in spirit, He was always faithful, He has guided my every step, He is making my bones strong, He has taught me through my suffering about endurance and hope in Him, He has renewed my strength, and I PRAISE HIS NAME FOR ALL THE MARVELOUS THINGS HE HAS DONE!<br /><br />Much love to you all-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com8tag:blogger.com,1999:blog-6491588961853158395.post-57924546687868831102011-07-10T12:08:00.002-05:002011-07-10T12:16:30.555-05:00Computer problems...I'm having computer issues so I haven't been able to update. I'm writing this on my phone, which isn't easy for me! Anyway, I feel bad that I haven't updated in so long and hopefully my computer will be fine in a few days so I can write all about the WONDERFUL things God has been doing in my life! I even have an updated picture to post and I'm actually wearing makeup - such amazing progress. The hymn, "How Great Thou Art", has been playing in my head for weeks now and I sing it everyday because I am "in awesome wonder" thinking, "My God how great Thou art!" And believe me, my soul is definitely singing. I can't wait to write more about it and hope to do so within the week. Thank you all for your continued prayers...they are working my friends and our God is great!<br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-57673227599272029372011-05-20T10:42:00.004-05:002011-05-21T11:20:53.052-05:00A life outside of Lyme...I know I haven’t written much on here lately. I had listed reasons for that in my past couple of entries I think. However, this time it’s not because I’m not seeing progress. And because I am seeing progress I’ve been baffled as to why I’m not on here praising God for it! Another friend who has battled Lyme was able to point out a big reason to me – I’m tired of my life being ALL about Lyme and the other diseases I battle. I’m just flat out tired of talking about how I feel all the time! I want a life outside of Lyme! I want to talk about other things! But, I feel I must update you all so that God gets the glory for what He’s doing in my life.<br /><br />I started a new drug, Tindamax, to hit the Babesia since I can’t take Mepron without horrible results. I started taking it almost 3 weeks ago and it has gone well so far. I only take it twice a day for 3 days in a row and then after 4 weeks or so I will try doing it 5 days a week. I have experienced joint pain with it, but in comparison to how other meds have made me feel this one isn’t all that bad. I’m still taking IV Azithromycin in the mornings and then IV Rifampin in the afternoons. I still don’t like the side effects of those drugs since the Azithromycin makes me feel sick to my stomach most days and the Rifampin makes me so tired, but I’m working through those and I think they aren’t as strong as they were to begin with.<br /><br />As for my progress, well, sometimes it’s hard for me to see because it’s slow and I get so very impatient because I want to have a “normal” life! However, when I saw the doctor a couple of weeks ago we discussed just how far I’ve come over the past year. I came home from Kansas City in late April last year and when he first met me I was a mess! I had to be wheeled to his office in a wheelchair - I was on oxygen - I had to sit in an exam room with the lights off with my sunglasses on - I had earplugs in and headphones on. Even with all of my precautions I still had a small seizure and I could barely speak to him. And now – WOW – what a difference a year makes! I can walk in under my own steam – I’m not hooked to oxygen – the lights can be on in the exam room – I don’t wear earplugs – and I’m the one who does most of the talking instead of M! Now, I still have to drug myself with Valium to handle ANY outing and after an outing I am worn out and my brain still deals with effects of being overstimulated. BUT, you can’t deny the progress when we compare me now to where I was last year. My doctor had honestly thought I wasn’t going to get much better since I’d already been on IVs for 10 months. He is happy to admit he was wrong now! I must say that every treatment decision that has lead to progress was made after praying for God to lead us down the right path. I’m blessed with a doctor who believes in that as well. He knows that the most progress we’ve seen has been from treatment protocols that I’ve come to him with after praying for guidance!<br /><br />Other praise worthy progress is that I’ve started getting back on the elliptical machine again. I don’t have any resistance set on it but it’s still a workout for me! I can’t tell you how good it felt the other day to be able to go for 20 minutes straight on it! I have to make sure my heart rate doesn’t go too high, but I monitor that and slow down when I need to do so. I have to build back the muscle mass that has just disappeared after spending so much time in the bed. It will take awhile, but the fact that I’m working on it is a big deal! Also, we’ve been able to get me out of the house at least once every 2 weeks which is a lot more than I had been able to do. We’re hoping to try for once a week as long as I continue to do well on the new medication. However, I still have big limitations. I can’t go anywhere that’s crowded, even if the space is small, too many people is too much motion and my brain gets overwhelmed. I am still very sound sensitive and some days are worse than others, so it depends on the day as to whether I think I can handle going into a store without earplugs. They are always right there in my pocket though, just in case!<br /><br />A lot of what God’s been working on with me is not dealing with my illness, but rather with my spirit. He has been placing things on my heart to think about. I don’t know if He wants me to share particular messages with you all, I think He mainly wants me to acknowledge that we aren’t just working on my physical and mental state of being – we’re working on my spiritual state too. It’s a battle to be positive about what I’m going through. It’s a battle to force myself to see the progress instead of only focusing on the severe limitations I still deal with. It’s a battle to realize that in just a few weeks I will have been doing IV treatment for 2 solid years and I never thought it would take that long. These battles are all part of a larger war that is going on inside of me. A war that will bring me out of this illness not just as a healthier person but as a spiritually stronger person – more compassionate, more understanding, more giving, and more willing to follow Him down whatever roads He leads me down no matter where they may lead.<br /><br />I watched a program that Beth Moore was on. She’s a Christian speaker, author, etc. and I love to hear her speak. She talked about the meaning of the Greek word "makarios" which means "blessed or blessing". She shared a definition that goes into greater detail and it was this:<br />"Biblically one is pronounced blessed when God is present and involved in his life. The hand of God is at work directing all his affairs for a divine purpose and thus in a sense such a person lives- Coram Deo (Latin), before the face of God."<br /><br />I have said this before, but it bears repeating – at least in my life – we get the definition of “blessed” mixed up these days. We think a person is blessed when good things happen to them. We often think of “blessings” as material things and possessions – but we are SO WRONG! We think to be “blessed” is to live a life with no problems and it's just the opposite of that really because in a life without problems we wouldn't have the same need for God to be so present in our lives! To be blessed is to have God working directly in our lives and in my case, well, He has used these hard times to bless me with His presence! Of course I am human so there are days that I cry for the life that I wish I had - one filled with children, or just one where I could drive a car or go into public places without worrying about how noise will hit me or if I will have a seizure. BUT on most days I know that this life is the only way I could have ever come to know my Lord and Savior as I have. So, what I have gained through these illnesses, I know for a fact to be far greater than what I may have lost. God has been working on me for a long time, but it's through this fire that He's been able to accomplish the most - and I still have a long way to go!<br /><br />For those of you who started reading this when I started it a little over 2 years ago – thank you for sticking with me and thank you for your continual prayers! They are working…they are working so very much! I may not write as often, but it’s because I’m preparing myself for LIFE OUTSIDE OF LYME!<br /><br /><strong><em><span style="COLOR: rgb(255,0,0)">"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1 (NIV)</span></em></strong><br /><br /><strong><em><span style="COLOR: rgb(255,0,0)">"But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble. O my Strength, I sing praise to you; you, O God, are my fortress, my loving God." Psalm 59:16-17 (NIV)</span></em></strong><br /><br />OH - I'm attaching a link to a song if you'd like to listen. The song is really good, but what makes it even better to me is that a friend shared with me that it was written by a woman who was battling Lyme Disease. It means even more to me now :)<br /><br /><br /><iframe width="425" height="349" src="http://www.youtube.com/embed/1gbBrlAVm20" frameborder="0" allowfullscreen></iframe><br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-85093886642104120782011-04-12T10:22:00.005-05:002011-04-19T18:23:33.261-05:00Yes, I'm still here :)It’s been a long time since I posted an update on here. I battle the fatigue that comes along with taking the IV Rifampin and I also have to battle the oddest side effect which is feeling emotionally numb. I’m not depressed but I’m not happy either. I feel like my emotions have been muted and that’s so strange for me. It’s also a big reason I haven’t written on here in so long. It’s hard for me to write when I don’t feel an urge to write. It’s also hard to know what to write because I struggle with how to explain things and then I just get frustrated and give up. BUT I know there are some very loyal family and friends who keep up with me by reading this and I wanted to report that I am indeed still here and still fighting!<br /><br />The main change since last time has been adding our second change in the lineup – IV Azithromycin. Taking two or three different kinds of antibiotics is important when you are fighting so many different bacterial infections. Lyme Disease is only a small part of what I’m battling. It’s actually “co-infections” of Lyme that really knocked me down and caused me to get so terribly sick – in my situation it’s the Bartonella and Babesia (or Babesiosis) that keep me down. The Rifampin is a great drug to hit the Bartonella infection and I can tell there have been a lot of improvements. However, treating the Babesia is trickier since it is actually a parasite that lives on red blood cells. The main course of treatment for Babesia is taking Azithromycin AND a type of anti-protozoa medication, Mepron. A protozoa is a single celled organism and, as I said, Babesia is a parasite so I normally refer to the medication for it as “anti-parasitic”. I’ve tried to take Mepron many times – starting a year and a half ago when I was in Kansas City. My body reacts pretty violently to it. The usual dose is 1 tsp. twice daily but that was more than I could handle and my seizures increased. The weird thing is that I probably had more seizures because the Mepron was actually working and ended up killing off too many red blood cells at a time depriving me of enough oxygen to get to my brain (red blood cells carry oxygen). We kept having to taper the dosage down until eventually I was down to taking a half tsp. on Monday morning and then another half tsp. on Tuesday night and that was it for the week. I still had trouble with that so we ended up stopping the drug. I tried it again this January and thought, “I’m a lot better than I was this time last year so I’ll try to take the normal dosage.” BIG MISTAKE! I took it for 4 days before M made me stop because I was reacting so horribly to it. The weird thing is that I don’t remember anything from the 4 days I was on it. Again, likely due to killing off more red blood cells than I could handle.<br /><br />So, for the past 5 months or so I’ve only been taking an herbal supplement that helps rid the body of several types of parasites. This supplement helps keep my Babesia symptoms at bay somewhat, but it’s not killing the Babesia off like I need. We’re meeting with the doctor again in a week or two and will discuss the idea of easing my body into a Mepron dose at a VERY slow rate. Like putting a few drops of Mepron in a glass of water and after a week adding another drop or two. Basically I want to keep from killing off those red blood cells so fast but I also want to make sure I’m getting rid of Babesia instead of just masking the symptoms with a supplement. Taking the IV Azithromycin has been hard on me as well. Halfway through the bag I start to feel extremely nauseous and it is a miserable feeling. Oddly enough it helps if I eat a pickle or two around that time because the vinegar taste overrides the sick feeling somehow. I don’t understand it, but I do appreciate it. But with the addition of the Azithromycin my treatment schedule is now more time consuming. I start the Azithromycin drip around 9:00 and it goes for at least an hour and a half to two hours. Then I take a break until 2:00 which is when I run a small bag of just IV fluids which takes an hour. Immediately after that I start my Rifampin bag which takes between 2 and 3 hours to finish. If I feel good I can get the drugs in a little faster, but when I start to feel sick, achy, or just miserable I have to slow them down to help keep the side effects at bay somewhat. So I’m tied to this IV pole for up to 6 hours a day and no less than 5 hours. It’s hard on my body to lie around in bed for that long even though I don’t actually feel like getting up to do anything. My body just aches a lot – especially my back and neck.<br /><br />NOW for some good news. I have gotten out of the house a few times for something other than doctor's visits – YAY ME!!! Once was a small trip to an outdoor shopping area and I went in a couple of stores and handled it without earplugs. Then I’ve made 2 trips to the grocery store and didn’t need earplugs either time – HUGE PROGRESS!!!! Those outings have occurred over the span of 5 weeks or so because there are still days that just standing upright will wear me out – but to have some really good days makes the really bad ones easier to bear. Of course I’m still not able to drive myself anywhere and I don’t do well out of the house for more than an hour and a half, but ANYTIME I can actually get out of the house is just such a blessing to me! So, we pray that these good days come more frequently because I do feel they are God’s way of showing me light at the end of this very dark tunnel.<br /><br />The last thing I’ll write about is not about my difficulty taking the medications, rather it's my difficulty in handing over all of my worries to God every single day. It’s almost ingrained in human nature for us to want to take credit for the good things that happen in our lives and then blame God (or someone or something else) for any of the bad things. With my emotions being so dulled I was having a really hard time sensing God around me and I was angry about where I am with treatment. This Friday will be my 36th birthday and I had started doing something we probably all do around our birthdays – I started to think about where my life is versus where I thought it would be by the time I was 36. Trust me when I say I NEVER imagined I would be acting more like an 86 year old than a 36 year old! I always thought I would have at least one child by now, maybe two, and that I would be a busy mom and wife. It’s hard to fathom just how far away my reality is from that dream. June will mark 2 years of IV daily IV treatments and I can’t believe it’s been that long! I mean, on one hand I KNOW it’s been a long time, but on the other, well, I am so cooped up in my bedroom that I don’t really notice how fast the days turn into weeks and months and years!<br /><br />So, I was thinking on where I wanted to be by now and then I got really angry with where I am. I once again made the stupid mistake of thinking I should get mad at God for letting me go through all of this. It took a couple of weeks and a couple of good online sermons to make me see how much I’m taking for granted. While two years is a long time, I can also see just how many improvements I’ve made during that time. My thinking is clearer, my body is stronger (or rather I can walk better and my hand strength is back), my heart rate doesn’t jump into the 180s when I walk to my kitchen, I’m not having as many seizures or tremors even, I’m getting better at handling day to day changes, etc. I prayed for God to make me healthier and He is doing just that. God has been the one directing my treatment plans by planting seeds of ideas in my head to talk to the doctor about trying. He has blessed me with a doctor who is willing to work with a patient who wants to be so very “hands-on” when it comes to planning out treatment protocols. He has given me a husband who wears himself out doing all he can to take care of me physically, emotionally, and spiritually and who runs his own business all at the same time. He has blessed me with parents who give everything to help us. My mom has been coming four days a week to help take care of me and on the days when I don’t need her sitting right with me she’s busy trying to do laundry, clean our kitchen, and make meals so that my sweet husband can set up more meetings outside of the house without worrying about me being home alone. My dad has not just given up having his wife around but he’s the one who’s there if my sister needs him to pick up her girls at school while she has to work. He also handles a lot of the things that mom would be doing if she were able to be at her house more! And my wonderful sister came to visit me this weekend and she lifted my spirits by just being here. Even though she only lives 20 minutes away, I haven’t really been up for visitors so it had been maybe 5 months since I had gotten to hug her and spend some one on one time with her. It was wonderful medicine for me.<br /><br />So, no, things are not wonderful. My life is not where I thought it would be by the time I was 36. I have a long way to go to get a life closer to “normal” and I get frustrated by all of that. However, I felt strongly that God is telling me that while I'm not getting to live a "normal life" or a mediocre life even, I also will not have a "normal" or mediocre relationship with Him. And when I think about it that way - when I see the vast difference in my relationship with God over the past 2 years, I feel stupid for overlooking such a gift. I do serve a great God who is faithful and who has never, and will never, leave my side. I may not feel Him as strongly sometimes, but I know He’s still there and He’s still working miracles in my life. For now, those trips out of the house are my miracles and He has plenty more in store for my life I feel certain. Basically, I will stop trying to beat myself up with what I don’t have at this stage in my life and I will try to remind myself daily of all the blessings God has given me – one of which is HUGE and that is all the wonderful people that keep on praying for me! Those prayers are heard and I can feel them so I appreciate all of you going through the past 23 months with me via this blog. It’s an easier road to travel if you have friends and family traveling it with you.<br /><br /><strong><span style="color:#ff0000;">“Bless the Lord, O my soul, and do not forget all his benefits – who forgives all your iniquity, who heals all your diseases.” Psalm 103:2-3 (NRSV)</span> </strong><br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-73218714722383270162011-02-21T10:08:00.003-06:002011-02-21T16:23:34.893-06:00Frustration versus faith...I get frustrated about what my life has been like over the past 2 years. I find myself questioning God a lot about the "whys" and "whens" and I don't seem to find answers. I watched a sermon online this week that reminded me of something important - God is sovereign over ALL things. I already knew that, but I needed to be reminded and maybe I need to focus on that more every day. I need to remember that if I believe that God is sovereign over ALL things, then I should trust that what I'm going through is necessary for God's plan. I cannot understand God's ways because I cannot see things as God does. We often search for answers in the midst of trials and heartache - answers that we try to cling to in order to get through those things. I know that for the past 2 years I have told myself that God's had me go through this in order to mold me into the person He wants me to be, and I believe that's true. I would also add on that without going through all of this, well, I know I wouldn't be as close to God. Our relationship wouldn't be the same. But my relationship with God is different because in the end, I always choose to believe in God's plan and to do that I have to have faith in God's Word.<br /><br />And while I can point to how my circumstances have lead me closer to God, the sermon I watched reminded me that I don't know the answers to WHY I'm going through this, and honestly, I don't need to know WHY. I have to trust God for WHY I'm going through this. As we grow older we can look back on certain times in our lives and see the benefits buried in bad times a little clearer. Can you think back and see that experiencing a heartache or a disappointment was necessary to shape you into a better person? Probably so. Of course, we might have experiences that left us bitter or angry. If we're honest, we would probably see that we have both. I believe the difference in whether we come out bitter or better is up to us. I think it comes down to our faith and trust in God. If we only sit back and think about how bad we have it, or how hard things are, we WILL become bitter. However, if we trust in God and have faith that even the worst times of our lives are part of God's plan for us, we can come out of hard times as a better person. <br /><br />The Bible tells us that God's plans are for us to prosper and to give us hope and a future (Jeremiah 29:11). That doesn't mean every day is going to be wonderful for us. I have had to grasp that in order for us to prosper and have hope, we have to trust in God completely. Easy to say, VERY hard to do. And I have to state the fact that our worldly view of the word prosper does not have the same meaning as the biblical meaning. To prosper may not mean complete healing, or financial windfalls, or even less stress. It may be that God's definition of prosper means our continuing to grow closer in our relationship with Him. Very often it takes hard times and painful experiences for us to truly come to God because frankly, we've tried everything WE can do and nothing has worked. We then throw everything to God and pray for Him to make a masterpiece out of the mess we hand Him. <br /><br />Each time God gets me through a really rough time I make the mistake of thinking, "Well, nothing can be as hard as that was!" WRONG - things can be worse, but the difference is that if and when things DO get worse, my faith has gotten stronger so I trust God to get me through AGAIN. And HE DOES! So, I've been sitting here thinking about my life, my problems, my worries, and once again I have to realize that handing things over to God isn't the only thing I can do - it's the only thing I should do.<br /><br />Now, for my health issues. Things are getting better slowly I think. I've "tweaked" my medications - how much I take, when I take them - to try and keep myself from staying so terribly exhausted. The <span id="SPELLING_ERROR_0" class="blsp-spelling-error"><span id="SPELLING_ERROR_0" class="blsp-spelling-error">Rifampin</span></span> is going to make me tired, but timing my other <span id="SPELLING_ERROR_1" class="blsp-spelling-error"><span id="SPELLING_ERROR_1" class="blsp-spelling-error">meds</span></span> around it differently seems to help some. The other physical symptoms I deal with are extreme nerve pain (esp. from my neck to my back), overall body pain, and not getting enough oxygen. I'm not back on oxygen every day thankfully, but I need it more right now than I had. The neurological symptoms I'm fighting are mental confusion, difficulty processing new information, changes in my routine, inability to focus on anything (even simple conversations sometimes), and mood changes. Treatment often causes some symptoms to flare and for now my back pain and inability to think clearly are the most troublesome. I know people read this, especially my Lyme friends who deal with the same symptoms, and think, "She doesn't have too much trouble thinking clearly or she wouldn't be able to write this!" However, I must remind everyone now that when I get a message out clearly these days, it's because GREAT effort and a lot of time have been put into writing it. Also, writing has always been what I loved to do and anyone who knows me well would tell you I talk all the time :) Although if you read this you probably already figured that out from my long, rambling posts! But whenever something comes out clearly I think it's God allowing it to happen. <br /><br />I do think we have hit upon a BIG thing that may help tremendously. I know I've explained that my red blood cell count is always low and so is my hemoglobin and <span id="SPELLING_ERROR_2" class="blsp-spelling-error"><span id="SPELLING_ERROR_2" class="blsp-spelling-error">hematocrit</span></span>. Red blood cells carry oxygen and hemoglobin is actually the protein molecule in the red blood cell that carries the oxygen. <span id="SPELLING_ERROR_3" class="blsp-spelling-error"><span id="SPELLING_ERROR_3" class="blsp-spelling-error">Hematocrit</span></span> is the proportion of blood, by volume, that consists of red blood cells. Now, for the past 20 months I have had weekly blood work done and every week those three things are low. We had been under the impression that I was dealing with iron deficiency anemia (there are several types of anemia) and I was put on iron supplements but somehow the numbers never got better. When I came to my doctor here in town he saw that my B12 was low - which we've known for a long time - and he suggested I go on a B Vitamin complex. Of course, at that time our first concern was how to stop, or slow down, my seizures so we didn't get around to the B Vitamin complex until this fall when the <span id="SPELLING_ERROR_4" class="blsp-spelling-error"><span id="SPELLING_ERROR_4" class="blsp-spelling-error">siezures</span></span> had improved. I tried to take the B Vitamins but they would make me feel nauseated, so I stopped. Then we dealt with the whole gallbladder issue and I thought perhaps that was the real reason I had felt sick on the B Vitamin. So, I tried again in December but no change. When I saw the doctor in January I happened to remember to tell him about it. He said we would try B12 injections. First we were to do weekly injections, but he said if I could feel a difference that I could give them daily. I did feel a difference after the first few shots so I started daily injections and this week, for the FIRST time in 20 months, my red blood cell count, hemoglobin AND <span id="SPELLING_ERROR_5" class="blsp-spelling-error"><span id="SPELLING_ERROR_5" class="blsp-spelling-error">hematocrit</span></span> levels were all inside the normal range. B12 is essential to the production of red blood cells and since red blood cells are what carry oxygen around and lack of oxygen is a big reason I stay exhausted - well, you can imagine how happy I am about what this could mean for me. We're not sure if I'm just low in B12 or if I have pernicious anemia which <span id="SPELLING_ERROR_6" class="blsp-spelling-error">occurs</span> when the stomach doesn't produce the protein that binds with B12 so it can be properly absorbed in the small intestine. If that's the case then B12 injections will be a life long thing. But, for now, that's not the issue - we just need to get my levels up and see if my symptoms improve.<br /><br />That's my big news and hopefully over the next few weeks we'll also see the shape of my red blood cells come back into the normal range. Mine are too large and are misshaped so they don't work as efficiently as they should. This could mean a lot towards me having more energy which means I might be able to try getting out in the world again. For now just walking to the kitchen is tiring. But through all of this I will trust that God leads me as we continue forward in my treatment. I know that He planted the question about Vitamin B12 in my head to ask the doctor because it wasn't on my list of things to talk about with him! Although it's hard to have improvements come so slowly and I want to be able to jump out of bed and get back into a normal life, well, my body couldn't handle that. I think that's where trusting God comes in. I have to trust that God isn't just leading me through the tough times, but that He has the exact timing of my healing and improvements mapped out! He is always working in my life - even though there are so many times when I can't see it or feel it. It's hard to be frustrated all of the time and I have felt that way a lot lately so I want to change it. I have just found that the best way to get rid of that frustration is to refocus on my faith in God.<br /><br />Thank you all for continuing to keep me in your prayers and know that God hears those prayers! He is working in all of our lives ALL of the time!<br /><br /><strong><em><span style="color:#ff0000;">"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11</span></em></strong><br /><strong><em><span style="color:#ff0000;"></span></em></strong><br /><strong><em><span style="color:#ff0000;">"Lord, let your <span id="SPELLING_ERROR_6" class="blsp-spelling-error">constant</span> love surround us, for our hopes are in you alone." Psalm 33:22</span></em></strong><br /><br />Much love to you all!<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com3tag:blogger.com,1999:blog-6491588961853158395.post-194945414064167322011-02-10T09:47:00.002-06:002011-02-10T10:41:53.911-06:00Tired times...I have wanted to write an update for weeks but I just can't think straight and I'm exhausted. After posting my last entry, which was a very heartfelt prayer to God, He answered within a few days. I can't really explain how He does things in my life, I just know when He is leading me somewhere. He led me to try the IV Rifampin again that Monday. I had really been praying to be able to stop the IV medication and get my PICC line pulled, but He wasn't leading me in the direction I WANTED to go in, but in the direction I NEEDED to go in. So, with a lot of "tweaks" to how I take the Rifampin, I've been able to handle it this time around. I do 500 mL of IV fluids before I start the Rifampin bag which is 300 mgs diluted in 1,000 mL of fluid. Then halfway through the Rifampin bag I stop it and take a break for at least 30 minutes and I run the bag slowly over 3 hours (not counting the break). This is the only way I can handle the drug. When I tried to go without the IV fluids beforehand and not stop the Rifampin for a break halfway through, bad things happened. I had seizure like episodes but would also scream and cry and generally look like a person possessed. All in all, it's just been a really hard time.<br /><br />Basically, symptoms I thought were related to my Babesia infection were really coming from the Bartonella. That's the one that really makes my neurological symptoms flare up. God allowed me to have a fantastic first week on Rifampin where I felt good and even was able to go to the doctor's office without earplugs or sunglasses by the end of that week. So, He showed me what the Rifampin could do - that it was the right drug for me to be on basically. Then the Rifampin side effects came on which is mainly exhaustion and flu like symptoms. I get so overwhelmingly tired that holding my head up off the pillow is too hard sometimes. I had to go back on oxygen a few days last week and my energy improved - well, that sounds misleading, basically I was simply able to sit up in the bed instead of lying flat all day.<br /><br />Next week will mark 20 months of IV treatments. In those 20 months I have had bloodwork done every week. In all of that time there have only been 3 times when I had a normal red blood cell count and a normal blood level - normally they are low meaning I stay anemic and that can cause exhaution as well. I have been taking an iron supplement this entire time which was supposed to get rid of that problem but it hasn't. In a CBC test (a complete blood count) they don't just count red and white blood cells and blood levels, they also look at the size of your red blood cells. Mine are always large and they don't carry oxygen to other parts of my body well. I have known my B12 levels were low and I tried to take a Vitamin B complex but it made me feel sick to my stomach. I happened to tell the doctor that on my last visit (God put it in my head I feel certain) and he wrote me a prescription for B12 injections I can give myself. I had not tried them out because I wanted to see exactly what the Rifampin would do as far as side effects, but once I was just knocked out by the exhaustion I knew I needed to start the shots. There is a type of anemia called pernicious anemia which is caused by a lack of B12. It can cause your red blood cell count to be low and for the cells to be large. I'm praying that is the type of anemia I have and that the B12 injections work very well for me. I do know that I took a day off the Rifampin last week and then the next day I did my first B12 shot and by the next day I was able to go into the kitchen and get my own bowl of cereal. Doesn't sound like much, but it's really a big deal compared to how I have felt. I don't know if it will help raise my blood pressure in the end, but I pray something will because it's staying around 70-80/45-60 and that's really low and is yet another thing that adds to the exhaustion.<br /><br />I believe we are on the right track - I've just been frustrated that the fight isn't over yet. I'm ready to pull this line out of my arm and be able to get out and about in the world. It's not quite time for that yet and I have to realize that doesn't mean God isn't answering my prayers. In fact, it would have been so much worse if I had asked for my PICC line to be removed before God showed me I needed more IV meds! We have been blessed to have a doctor who works with us so well and allows me to be so active in coming up with a treatment protocol. We are really just blessed to have a doctor here in town AT ALL! I could still be stuck in Kansas City! God answers prayers every day. It's just when you're in a battle for this long it can be easy to just give up and get mad. I have to allow God to work in my heart every day and keep me from feeling hopeless. He is my strength and my shield for certain. <br /><br />Oh, the other thing about the Rifampin is that I can't focus as well while I'm on it. It makes updating on here so difficult! So, if I don't write often that's why, but know that I'm still waging war on these diseases. I feel God will see me through all of this, it's just exhausting to go through and sometimes just exhausting to even think about. It was nice when I was on the Gentamicin and I was able to get out and about and see what progress I was making. However, I also realize that the one upside to my kidneys not filtering well was that it caused my blood pressure to go up. I was around 100/60 for a couple of months and that was HUGE! I felt so much better. So, keep praying that God leads us down the right path for my treatment and I pray that I will have enough energy to keep updating on here! <br /><br />In these tired times verses like these help so much:<br /><br /><strong><em><span style="color:#ff0000;">"Indeed we call blessed those who showed endurance." James 5:11 NRSV</span></em></strong><br /><strong><em><span style="color:#ff0000;"></span></em></strong><br /><strong><em><span style="color:#ff0000;">"I will send down showers in season; there will be showers of blessing." Ezekiel 34:26 NIV</span></em></strong><br /><strong><em><span style="color:#ff0000;"></span></em></strong><br /><strong><em><span style="color:#ff0000;">"God is the strength of my heart and my portion forever." Psalm 73:26 NIV</span></em></strong><br /><br />Sorry if this has been rambling or confusing - but I did my best :) No proof reading though, I'm simply too tired! Sending much love to all of you and lots of appreciation for your love and prayers!<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-72598484741317558902011-01-13T13:19:00.002-06:002011-01-13T13:33:20.780-06:00My prayer to God todayI normally don't post my prayers. In fact, I rarely type out my prayers. But today, God made me see that by typing out my prayer I could focus more. Basically, I would be less likely to have my thoughts wander off, as mine are apt to do when I pray. So here it is. No editing - just a prayer:<br /><br />Dear Lord,<br /><br />Prayers to You should start with praise and I have much to praise You for. There for awhile I was beginning to remember what a “normal” life felt like. I was blessed with the ability to take care of my husband after his shoulder surgery. I was able to cook and clean and I felt like I was lifting burdens off of my husband’s shoulders. That felt wonderful. I praise You for all of those special moments. I praise You for showing me what everyday “miracles” are – the ability to do things I once complained so much about – like going to the grocery store, cooking, doing laundry. I saw such progress in such a short amount of time and I was beginning to taste what my future might hold for me in regards to my health. I thank You for giving me that time and for giving me a husband that understood when that strength left and I was battling everything so hard again. I thank You for sending me a man who knows my struggles and simply jumps in to take care of whatever is needed without so much as a sideways glance to make me feel badly about being too sick to do things anymore. I have many praises for You, Lord. I praise You for mine and my husband’s parents who try to do all they can for us and who constantly keep us covered in prayer. I praise You for the friends I have that keep me in their prayers as well. I even thank You for the friends You have removed from my life during this tumultuous time because they proved themselves to not be “true friends”. I thank You for the people who stepped up to be my “true friends” – some being friends I hadn’t spoken to in years, others being new friends I made during my time in Kansas City. Old or new – the one thing that my newly created circle of friends has in common is a thriving love for You and a desire to know You more, to love You more. They have lifted me up with Your word so many times. When I was low, You gave them the words to say, the messages to send that lifted me up out of the darkest of pits. You used so many people in so many different ways to touch my life and I am truly thankful and now realizing how humbled I should be that You would do all of this for me.<br /><br />Now, I must confess several things that I haven’t done well. I confess that I constantly try to guess at what Your plans for my life are and how I can get to the “good parts” faster. I do not know what plans You have in store for my life, so I need to stop questioning. I confess that I frustrate myself daily when I realize what little time I have allotted for You on some days. I am confounded by the fact that I don’t continually keep my focus on You because it is on those days that I see and feel the miracles You are working in my life. I look back on journal entries and am astounded at how many times You carried me through dire circumstances and You kept fear from my heart as You did so. I confess that I get angry about where I find myself at times – physically, mentally, and especially spiritually. I confess that many times that anger is directed at You. I lay here thinking, “He could so easily heal me. Doesn’t He think I have learned enough from these years of living through my own personal hell? Why does He continue to carry me through horrible times when He could just stop allowing the horrible times to happen?” I have so many questions but You are the only one with the true answers and they are answers I may never know until I reach Heaven.<br /><br />Just over a month ago I was seeing that promising “light at the end of the tunnel” and I was so happy. My heart overflowed with joy and I couldn’t stop seeing “little miracles” everywhere I looked. Doing laundry felt so good, washing dishes and cooking seemed like mountains I had finally climbed. Going out into the world was more like a dream come true and I saw that there was more of a “life” ahead of me than I had expected.<br /><br />Then things went downhill again. My Babesia flared and that is the one that really changes my mood. It creates mood swings that happen so fast my own head spins. I feel like it is during those flares that I find myself not embracing You, but rather avoiding You because I feel let down and angry. I confess that is not the way I should behave and I acknowledge how very often I find myself doing it anyway. I have cried out to You from the depths of my soul and I take refuge in the fact that You hear those cries – You hear them and do not shut them out. It shouldn’t be that I cry out to You only on my “worst” days, but that I should cry out to You every day. I should sing praises to You for all you have done and simply trust in the plan that You laid out for my life before I was even born. Lord, I want my circumstances to change, but I am unsure as to what You want me to do in order to change them, or what I must figure out how to do in order to move through this oppressing sickness and life of bedridden solitude. I pray about medication and treatment plan changes. I constantly question if I am doing the right thing. I pray that I am only following where You lead me in this battle. The hardest part about this battle is that these diseases manifest differently in every patient and every patient reacts differently to every drug. What works for some may do absolutely nothing for others. That’s where the FEAR comes in – that’s where Satan does his best work – by confusing , which leads to fear, which leads to doubt in each and every decision I make.<br /><br />Lord, clear out the confusion from my mind and allow me to feel where You are leading me in my life. Give me the strength to continue this fight and the knowledge of what move to make next. Give me the courage to go wherever You may lead me, even if it’s scary or full of fear – let me put my WHOLE TRUST in You. Work on me and in me, Lord, and give me peace where there is worry, patience where there is doubt, and love where there is overwhelming sadness. Allow me to feel the fullness of Your Spirit in me and to follow You in all that I do – even if the steps I make have to be made in blind faith.<br /><br />I love and adore You Lord, and I know to put my full faith and trust in You. But, I have to ask that You continue to give me the strength to do exactly that as each day presents its’ own trials and heartache.<br /><br />In Jesus’ holy name,<br />Amen<br /><br />Thanks to all of you out there who are praying for me. Please keep me in your prayers as the past few weeks have been so hard. My blood pressure is staying low so I'm in the bed a lot. Also, my body aches painfully because of being stuck in this bed. I can take the physical part much easier than I can the mental symptoms. I can become completely irrational, then cry for no reason, then get angry to the point where I throw things, then cry again because I see just how irrational and crazy I'm acting. It's like I don't have control of my emotions, or even my entire brain for that matter. This too shall pass. God's gotten me through much worse and I trust His plan will lead me out of this rough patch as well. I am just so ready to have a "grocery store outing" kind of day. I look forward to my next one!<br /><br />Much love to you all!<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-68588775522650646132010-12-31T12:56:00.003-06:002011-01-01T16:59:21.117-06:00Ringing in the New Year quietly, but with GREAT cheer :)In my last entry I wrote about all of the things I’d been accomplishing lately – working on Christmas cards, cooking, cleaning the kitchen some, driving to the grocery store with mom. God’s been doing great things for me. I re-read that entry and it helped me deal with where I am today. Today I’m on day 3 of no energy and feeling stuck in bed again. I’d been feeling very down about it. God got me to read that last entry and I realize the things I’ve been doing that are causing me to feel so tired. A big one is that I want to jump out of this bed and just start back to living full force, but I can’t. Being sick, weak, and living in bed for over 2 years means I need true physical rehabilitation to get back to living. My muscles need conditioning – just basic walking and stretching exercises. I need to be patient with my body and with my brain. On Wednesday I had what I term a “mini episode” type of seizure. No grand mal seizure activity but started out crying for no reason – which often happens right before a seizure – and then it was like I was crying so hard – not sobbing – but crying from the depths of my soul. It was one of the few times in my life where the crying was so intense it was as if I were listening to someone else cry – like it couldn’t be me making that noise. In a way I think I was crying out to God. I had to put an Ativan in my mouth and M put my oxygen on me just in case. It went away within 15 minutes, but afterwards I was exhausted and slept for 2 hours, ate dinner, and then slept some more. My cries to God may be as simple as a three year old who needs a nap but hasn’t taken one. It was also God’s way of showing me that I must slow things down, as much as I hate to do that. I’ve simply been so excited about all of my improvements that I have been pushing myself to get up and do even when I feel so tired and cranky. I keep thinking, “Just get up and do a few things and you’ll be in a better mood because you’ll feel good about accomplishing something.” That’s not true all the time – in my case, well, it just was too much pushing and not enough resting.<br /><br />We’re also going to run tests to check my hormone levels. Two years before I was diagnosed with Lyme, my estrogen level was almost non-existent, as were my progesterone and testosterone. The doctors had even put me on synthetic hormones to get me on track with my cycle. They never worked. Now it’s like I’m a teenager going through puberty almost – my oil glands are more active, I’ve had this craving for anything with vinegar on it (from salad to pickles), my mood swings aren’t as “violent” but they cycle much more rapidly, and I will cry for no reason. I think all of these things indicate a possible hormone imbalance. I think as I start to get well my hormones are finally trying to work and they may be overcompensating after all this time. Women who suffer from seizures are close to 3 times as likely to have a seizure during their monthly cycle (best way I could say that where men wouldn’t go – “ewww” – hahaha). BUT, I so many of those symptoms and feelings also happen when my Babesia flares. I’m supposed to take my anti-parasitic drugs 6 days a week for 3 weeks and then go off for a week. This happens to be my week off and I have gone downhill more as each day passes without taking them.<br /><br />All of this points us in the direction we feel God has been leading us – to start treatment on the Babesia again. Not just the anti-parasitic meds, but the Mepron (a prescription drug normally used to treat malaria) and start Azithromycin – both standard forms of treatment for Babesia. I had been on both while in K.C. but I was on so many other drugs that my body was too overwhelmed to handle those as well. And as much as I’ve been hoping to have my PICC line pulled in January, we’re going to talk to the doctor about oral Azithromycin versus the I.V. form because there’s some data showing the I.V. form to be much more effective. However, I am SOOO READY to get my PICC line out of my arm. The thought of taking a normal shower without having to wrap my arm and worry about it getting wet – well, that seems like a dream come true!<br /><br />And, although I was back at home this Christmas instead of being in Kansas City at the IV clinic last Christmas, I still didn’t get to spend it with my family. If you live in Birmingham, Alabama then you probably feel like I do – everyone in this town is sick with something! The flu, strep throat, bronchitis, and other bacterial and viral infections have been making the rounds. One of my nieces had strep throat one week and then the next week was down with the flu. The week after that, my mom had a viral infection and the doctor put her on Tamiflu even though her Influenza blood test was negative. I say all of this to explain that as much as I wanted to go to my sister’s house Christmas morning and visit with mom, dad, my sister & brother-in-law, and my nieces and nephews – well, my immune system couldn’t chance it.<br /><br />And here at my house it didn’t feel very “Christmasy” either. Neither M, recovering well from his shoulder surgery, nor I were up to the task of decorating the house and I knew I wouldn’t be up to cleaning up the decorations after the holidays were over. With the great expense of my medical treatment, M and I were once again not exchanging gifts with each other, or with any other family members, so I wasn’t even online shopping, much less going out to shop. The only thing I did that differentiated this time as the Christmas season was sending out Christmas cards. It’s a big task because I like to write inside each card and I hand address every envelope. I was proud that I got them done and that my shaky hands were able to complete the task! However, when Christmas morning arrived, I felt depressed. No tree, no presents, no family visits…nothing. I wondered why I felt more depressed this year here at home than I had last year while in K.C. and I realized it was because last year I did celebrate Christmas, at least a little, with my treatment friends. Here it was just me, M, and our furry, 4 legged baby, little m. I was disappointed. I was pouty. I was feeling sorry for myself – note to self, this could have been the hormone issue or Babesia talking, haha. Then I went to the kitchen and saw it was snowing. We haven’t had a white Christmas in Birmingham in, well, in the last 35 years that I’ve been alive. The snow was nice but I almost overlooked it because there was no traditional Christmas breakfast, so I was still pouty in the kitchen. It took me until that afternoon to realize that God had “stripped down” my Christmas to show me some very important things. First, and most importantly, was to realize how much the commercialism of Christmas has become what I equate the holiday with. We may use the saying, “Jesus is the reason for the season”, but honestly, without decorations, gifts, traveling to be with family, and the other rituals, you may have felt just like me, disappointed. So, I had to focus more on the true GIFT of Christmas – God’s gift to the world – JESUS. God’s son sent to earth to pay the ultimate price for our sins. I thought about just how BIG that gift is. It’s not just a gift at Christmas – it’s a gift we benefit from every day on this earth. And I felt ashamed that I hadn’t seen that sooner. Then I realized all the wonderful gifts God has given me, especially lately, as I am beginning to see the possibility of a much more normal life for myself. I re-read my last entry and thought, “K, how in the world could you think you hadn’t received gifts this Christmas? God’s been giving you gifts every day of the month!” So, I needed to be reminded and halfway through Christmas Day I realized how blessed I was to have my sweet husband, my baby dog, my loving family (even if they weren’t with me), and getting to see snow falling was my Christmas present. Weeks ago I had told M that the only thing I would miss about being in K.C. for Christmas was the snow. Last year was the first white Christmas I had ever experienced. Then here I was at home and God was covering the ground with a fine white mist of snow. It made me realize how stupid I had been. Maybe I needed this “stripped down” version of Christmas to really change my perspective on Christmas as a whole. I wouldn’t have realized just how many other things I think of, Christmas trees, Christmas music, decorations, parties with friends and family, when I should put more focus on what Christmas is really about. It’s Jesus’ birthday party! That’s what we should be celebrating! Thank you God for reminding me what Christmas is truly about – which is celebrating Jesus and thanking you for the most amazing gift the world will ever know – a Savior who would die for all of mankind’s sins. I’m not saying that I won’t buy Christmas gifts next year or that I won’t think being with family is important. I would like to think that God likes the so-called “Christmas spirit” of being kinder to one another, thinking of what others would like to receive, having family and friends close to you. It’s just that this year, well, I got to see what it would be like without all the muss and fuss!<br /><br />Now I’m going to spend the last day of 2010 in the bed with great hopes that 2011 finds me out of this bed much more often! I feel that God is leading me out of this tunnel and I just have to keep my focus on Him to find my way out of here. The light at the end of the tunnel IS God and His plans for my future. I can’t wait to see what happens next!<br /><br />As I lay in bed, wanting so badly to get up and out of here, well, that “mini episode” reminded me of something. Only GOD knows when it’s time for me to be up and out of here. So, after thinking on that this verse seemed very fitting:<br /><br /><strong><em><span style="color:#ff0000;">“Be still, and know that I am God!” Psalm 46:10<br /></span></em></strong><br />I wish you all a wonderfully happy and healthy New Year!!!<br />Much love to you all!<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-1686536778251132712010-12-13T13:28:00.001-06:002010-12-13T13:29:54.431-06:00God's Perfect TimingI marvel at how God works so often. In my own life’s journey I find myself wondering less about the miraculous things He does, focusing more on what I want Him to do. I think everyone is guilty of that. However, there are times when God does something in your life that reminds you that His plan is ALWAYS the best plan. I’ve had that happen a lot lately.<br /><br />In my last entry, I shared that my sweet husband was about to have shoulder surgery and how worried I had been about the both of us being “patients”. I also explained that once I started back on the anti-parasitic medication that I started seeing so much improvement in my symptoms – even getting out in public and I rejoiced about that. It was definitely God’s perfect timing because when my husband needed me – well, I’m happy to report that I was able to handle taking care of him. Now, we had A LOT of help from our wonderful families. M’s mom took him to have his surgery and kept me updated by phone calls. My mom stayed with me at the house because sometimes being nervous can trigger shakes or seizures – although it’s been almost 6 months since my last BIG grand mal seizure that lasted a long time. Funny thing is while I had anticipated feeling nervous, I was actually quite calm. God’s sense of peace I think. M’s mom also took him to his physical therapy appointments and generally offered to do anything else we needed done. Both of our moms offered to cook for us and I let my mom bring some of her spaghetti.<br /><br />However, what was simply amazing is that I was able to do some cooking. The day before M’s surgery I had mom come over while I cooked a real meal. I wanted her there in case I started feeling weak or faint then she could take over. But, I made a chicken Caesar salad with a white wine vinaigrette dressing for M. It’s one of our favorite recipes and it doesn’t take long at all. Just long enough to brown chicken strips in some olive oil on the stove. I cannot tell you how wonderful it felt to cook for my husband again. For those of you who know M, well, you know that he LOVES food. It’s always nice to cook for someone who is so appreciative! He was very proud of me for trying and thrilled that I succeeded. My mom and I were beaming about it as well! I went on that weekend to make chili and I did that all by myself. I even cleaned the kitchen!<br /><br />So, back to God’s perfect timing. I was able to cook a meal for the first time in almost 2 years the very day before my husband’s surgery. That was God letting me know He was giving me more strength than I dreamed of to get through M’s surgery – to be able to help take care of my husband who has been taking care of me for years! I can’t begin to tell you how wonderful that felt. Since M was “out of commission” so to speak, I desperately wanted to do more around the house. Mom came over that Monday, December 6th, to run to the grocery store for us. I had called her that morning because I felt God was telling me to go with her. Believe me when I say I did NOT want to go to the grocery store. With the bright lights, noise, motion, and aisles of food decisions to be made, well, it’s like seizure heaven. But, I felt God pushing me. Mom was running late and my fever (which I still have daily) was going up. I sat in the floor thinking, “Well God, it’s not my fault she’s late. I mean, I can’t go to the grocery store when my fever’s going up!” But God kept pushing me. So, I got up and got dressed. I put on makeup – I didn’t just throw on clothes either, I picked out an outfit! I was still nervous. I took my Valium and said, “Okay God, I’ve got my earplugs and my seizure meds. If you want me to go, then I will go!” Mom showed up and was surprised to see me looking like a normal person – ha.<br /><br />Whenever mom takes me anywhere she drives my car. I mean, for the past 8 months it’s just been sitting in the garage so we try and drive it when we can. However, my mom doesn’t park her car in a garage and she worries about how to pull out of my garage with her car in my driveway. I have always been able to do it with no problem, so mom asked me to talk her through it. When I felt that she wasn’t going to be able do it, I said, to my own surprise, “Can I do it?” My mom said, “Well, okay.” and she smiled. I haven’t driven a car in a year and 8 months. I am a person who has always LOVED to drive. I have a great sense of direction and have always enjoyed road trips – even those I made alone. So, I backed my car out and, like they say, it was just like riding a bike. It all came back to me and I got a big smile on my face. Again, out of nowhere, I heard myself ask, “Do you think I can drive to the grocery store?” and mom answered, “Do you want to try it?” and I decided I should try it. It’s a 5 minute drive on back roads with lots of side streets where I could pull over if I needed to and have mom take the wheel. The fastest speed limit is 30 mph and I felt like God had been pushing me for this very reason. To once again try something I was scared to do. But I did it. I DROVE!!!! It was amazing, liberating, exciting – it was BIG PROGRESS!!! I drove us to the grocery store and then I put my earplugs in. We went in the store and I got a buggy. The earplugs only made the noises sound closer to what normal people would hear. It was still very loud but I was handling it just fine. Mom and I went up and down every aisle. I picked out food to cook. I picked up some cookies to surprise M with. I was grocery shopping and it was AWESOME! The hardest part was checking out with the scanner going, “BEEP, BEEP, BEEP” as every item went across. The bag boy was talking loudly and I had to just focus on putting items on the belt. When there are too many things stimulating my brain, it’s best for me to put all of my attention to one task. I was able to get through it, pay by myself, and wheel my groceries to the car. I know mom and I probably looked like lunatics because our eyes were wide with excitement and we had huge grins on our faces! Then, I prayed for just a second before telling mom I could drive us home. I did that and then helped bring in groceries and I was able to put them away. In just one afternoon I got to experience what it feels like to be a housewife again. I got to do a chore that poor M has had to do for the past 2 years. GOD SHOWED ME AMAZING PROGRESS! Now, it will be a good while before I come close to driving by myself. Doctors say 6 months after my last seizure, but I want to make sure I am in NO WAY endangering others just so I can feel independent and drive. But, oh how amazing it felt to be the one driving – see there’s my “control issues” coming back…haha!<br /><br />That week I kept doing things – writing Christmas cards, cooking, cleaning the kitchen, etc. I got to feel like a person again instead of a problem. Friday I cried as I was rinsing out dishes – I was crying tears of appreciation and love to God. I was telling Him thank you for every little thing I was able to accomplish. Not to mention that 3 of our neighbors hired a tree removal service and Friday was filled with the sounds of chainsaws, leaf blowers and big trucks having logs dropped into them from a crane. Just 4 months ago that would have sent me into a seizure. It would have honestly been a nightmare for me. I would have been screaming, crying, shoving earplugs in, basically I would have been freaking out and likely seizing off and on all day. But not Friday – and I thanked God for the ability to handle that noise. I did have to take a Valium, but those work differently in my brain. They help my brain filter through the excess noise and stimulation. Basically they make my brain work more “normally” and they don’t make me tired nor do they make me feel spacey or loopy. Even though they are a “depressant” drug, they actually make me feel “up” because they help my brain to drown out all the excess noise.<br /><br />God’s perfect timing again – He has been doing amazing things for me. I am so very thankful for all of it. But then on Saturday I didn’t feel well. I was basically exhausted. As much as I want to get up and start living again, I can’t ignore the fact that my body has been bedridden for a long time. It will take a while before I can stay out of bed all day. I had pushed a little too hard and I had to stay in bed. I was upset about it. I felt like crap after feeling so good. It was depressing. Later on I realized it was my 4th week. Let me explain. Lyme and it’s co-infections seem to cycle every 4 weeks meaning that your symptoms pop up more during that 4th week. Sunday I was back to having mood swings, my feet hurt when I walked, my back hurt, and I basically felt crazy. But once I put it all together and understood it was my 4th week, I was better able to handle the symptoms. If all I ever get is 3 weeks where I can do chores and stay out of bed at least 8 hours of the day, then have one week where I’m tired, well, I’ll take it! I’m getting glimpses of better times to come. God’s answering my prayers. I wrote last time about how I had started giving up my life dreams and telling God I would settle for less, but in the end I figured out that’s not how God works. God does BIG things – He can answer BIG prayers – His plan for me is good and I trust in it. Please thank God for all He is doing for me. He’s answering my prayers and the prayers all of you say for me. I feel honored and humbled by all that He’s done. I now cry more tears of joy than tears of pain. I get teary eyed now just thinking on what He’s done for me in the past few months. I thank Him every day. And the next time you drive to the grocery store, try to do it like I did – smiling like a lunatic so happy to do a chore! We all have to recognize the blessings God gives us every day. I may not go to the grocery store every day, but He blessed me with my husband, my family, my friends, even my baby dog! I may not have ALL that I dream of, but He’s not done with me yet, is He? He’s not done with any of us yet. He works on us every day of our life if we allow Him to do so. I’m sitting in silence more lately. I’ve been sitting with beautiful Christmas music on as well. My mood improves greatly when I step away from the television and put myself in a situation where God can speak to my soul and my soul can speak to God.<br /><br />In our Christmas cards I have put the following verse because it is so fitting for our lives this past year:<br /><br /><span style="color:#ff0000;"><strong><em>“Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:18</em></strong><br /><br /></span>I’m focusing more on trying to give enormous thanks and to try not overlook even the smallest things God does for me. I’m not perfect so many days I completely miss seeing what God wants me to see, but that’s why He works on us every day of our lives.<br /><br />I hope all of you are enjoying this Christmas season. I got to work on Christmas cards while watching snow flurries outside my window. That was commonplace when I was in Kansas City, but in Alabama, well, it’s pretty much a gift from God and I enjoyed it thoroughly!<br /><br />Much love to you all-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-10010804163637268522010-11-30T12:09:00.002-06:002010-11-30T12:13:12.554-06:00To be perfectly honest...I need to come clean. Often times, when I write these entries, I write because God is giving me a message or teaching me a lesson that I feel He wants me to share. That’s not the part I need to come clean about though. When I follow God’s direction I find myself feeling more upbeat and positive about the things I’m going through. I realized that if someone reads this they might think I have the best attitude about my situation, or a sunny outlook on the frustration and disappointment I so often feel. Now I believe that God has having me write this entry and not spare any of the details. So, I’m going to take you where I find myself so often, in a pity party feeling confused, hurt, angry, and hurt. Don’t worry though, God won’t let me finish without writing about what He is doing to change all of those feelings that weigh down my heart. <br /><br />When I started to feel better taking the IV antibiotic Gentamicin, I rejoiced! I wrote about all my improvements and I know many of you rejoiced with me. Then my kidneys stopped filtering the medication well. I had only been on it for close to 3 months but I was seeing so much improvement that having to stop it broke my heart. I’m just now realizing that it broke so much more than that. The longer I was off the medication the more I seemed to slide backwards with old symptoms flaring up again. This broke my belief that I was nearing the end of this painfully difficult time in my life. Instead of the hope I had been feeling, I started to believe that I would never feel any better or make any more progress. I resigned myself to accepting what seemed to be fact – that I would never be able to lead a “normal” life. I stopped asking for big improvements and instead asked God to just heal me to the point where I could do household chores, cook for my husband, etc. Basically, I told Him that I didn’t have to be able to leave the house and deal with the noise of the outside world. I told Him I was letting go of the dream of having the life I really wanted. I even began to give up the idea that I would be blessed with a child and get to experience motherhood. I started trying to focus on the positives of not being a parent. You know - how everyone says they would travel more if they didn’t have children, or take a job they loved instead of one that paid the bills because, well, we all know it’s expensive to have kids! I was trying to give up all my dreams thinking that they just weren’t in God’s plan for me and that I needed to accept and appreciate what I was given instead of focusing on what I couldn’t have. I stopped believing that God had great plans in store for my life. I began to think He just had some sort of “good enough” plans. In short, I had gotten mad, then felt hurt and broken hearted, and finally I started trying to be in an “acceptance” phase.<br /><br />There’s a part of that logic that is rational. If I focused solely on what I wanted out of life, or where I thought my life would be by the time I was 35, then I would be horribly depressed right now. It was depressing enough when I tried to ask God to take away my desires and show me how to be thankful for the life I had. In fact, when I asked God to do that I didn’t feel any weight lift off of me like I normally do when I try and hand something over to God. That’s when I got really frustrated and angry with God. I questioned why He would give me such desires in my heart if He was not going to bless me with them. I started letting God know how upset I was and then some days I just didn’t talk to Him at all. All of this just made me feel horrible.<br /><br />You see, I thought it was God who was directing me to what IV antibiotics I should try. First I tried Doxycycline but the side effects were horrible. Did you know that heavy doses of antibiotics can cause mood swings? I didn’t know that until I started to go through all of this. So, we stopped the Doxy. Next was the one I wrote about last – Rifampin. It’s a very strong drug, as I have written before, and mainly used to treat tuberculosis and some types of meningitis. I started it and all seemed well until day 3 when my mood changed dramatically. I felt so despondent. I would lie in my bed and just cry uncontrollably. I had no idea why I was feeling so depressed. I couldn’t find the good in anything. I decided to call a friend from treatment in Kansas City who had been on Rifampin before. I wanted to know if the depression was a side effect, or if it was truly what I was feeling, or if it was part of a Herxheimer reaction – where symptoms will come up because of an overload of toxins in your body. When I told her how I had been sobbing crying she immediately said, “That’s the Rifampin.” So, on day 5 we stopped the Rifampin and within a 24 hour period there was a change in my attitude. After 48 hours I was beginning to feel more like myself. After 4 days off the drug I knew for certain that it was the culprit behind the emotional change and I knew that I would not be able to take that drug.<br /><br />I realized there weren’t many other IV antibiotics that would be helpful for me. I’ve been on 6 so far and 3 of those I wasn’t able to take due to side effects or allergies. I already know I have drug allergies that keep me from trying many of the other antibiotics, so I started feeling helpless again. I felt awful – both physically and mentally. Spiritually speaking I was at a low point too. I felt like I had been following where God was leading me regarding the medication changes and when they didn’t work I felt let down. To top it all off, my sweet husband has to have shoulder surgery on Thursday. He injured it 4-5 years ago and kept being told to do physical therapy for years – which he did but got no relief from the pain. We finally just asked our doctor, the same one who treats my Lyme, to order an MRI for M’s shoulder. It showed a torn muscle around his rotator cuff along with a cyst and bones spurs that need to be removed. So, I’ve been having to see my constantly loving caretaker in constant, miserable pain and I felt more angry at God. We all know the saying that God will never give you more than you can handle. Well, I have heard people add “I wish He didn’t trust me so much!” after that comment as a joke. I truly felt that way though. I was mad that God would add yet another hurdle for us to jump over. Sometimes I forget that we don’t have to jump those hurdles on our own power – that makes them almost impossible to get over. When we allow God to work in our lives He will carry us over those hurdles. It doesn’t make the hurdles go away nor does it make you feel that there are no hurdles in your life, but it does get you over them – even the highest one. I guess by now you can see that God has been working on me again.<br /><br />When the Gentamicin started to affect my kidney function I started to take myself off as many of my other medications as I could to ease the burden of my kidneys having to filter so much. This weekend God put something in front of me. It was a bag that held my anti-parasitic medication. I had taken it to my doctor’s office to show him, since I had gotten it from my Kansas City doctor I wanted him to see what it was. We came home that day knowing that I couldn’t take the Gentamicin and I sat the bag down in another room. So, this weekend I was in there and saw the bag and thought, “Hmmm. I wonder if I should get back on this since I’m off the Gentamicin now?” I decided to try it. Within 2 days I was feeling stronger and better. The anti-parasitic medication hits the Babesia. I have Lyme, Bartonella and Babesia. The first two have to be treated with antibiotics but Babesia is actually treated like a parasite with drugs and supplements that are normally used to treat malaria. But, I don’t just credit those anti-parasitic medications for how much better I feel. I credit God because I cried out to Him. I was already down because of how I felt physically, but on the Rifampin I cried out to Him like never before. I cried for Him to carry me, to heal me, to get me through all of this. God is good and He sure did answer.<br /><br />His answer started to form in my brain. I knew God was pushing me to try and get out in the world again. I felt a tug to get out because I felt God was going to show me what He was doing for me. So, yesterday I decided to have mom take me to the photo shop to print out my Christmas pictures. I had my earplugs, headphones, and seizure meds in a small bag with me in case I needed them, but I was going to try and brave it without them. We went into the photo shop and I was able to download my picture on their computer and fill out the order form. We were told they would be ready in about 3 hours. I didn’t want to go home though, I wanted to see what God was doing for me physically. I had a pair of jeans that I needed to return, so we went to the store and I exchanged them. Then I decided to really push it and go out for lunch. Now this is huge because I haven’t been in a restaurant since March of 2009. Most people don’t notice just how noisy restaurants are – people talking, forks and knives scraping plates, chairs being pushed away from tables, music playing, etc. But we went. It was loud so I put my earplugs in. That made it sound like it would to someone without supersonic hearing – haha. It was a lot of visual “hustle and bustle” too. I have a hard time with a lot of motion around me but I was handling this very well. Mom and I ate and I was absolutely giddy about being there. We left and I took a Valium to calm my brain from all the commotion. Then mom went in the photo shop to pick up my pictures because I knew I had reached my limit for sound sensitivity. I came home and was so happy but so exhausted! Mom helped me get back into my pajamas and into the bed. I hooked up a bag of IV fluids and promptly fell asleep. I was so tired that my husband had to physically shake me awake! I’m a little tired today, but not as much as I have been in the past after short excursions.<br /><br />You have heard people say, “God is good all the time. All the time God is good.” Honestly, it is true. But, you have to seek God and when you do so, you also have to be silent so you can hear or feel what He is trying to teach you. I had been trying to drown Him out by watching mindless television shows all day or playing on the computer – basically anything that would keep me from communing with God. But, finally I turned everything off and tuned in more to Him. Through my experience yesterday I learned that He is asking that I trust Him more, and give Him credit for the medicine instead of just crediting the medicine itself. I learned that His plan for my life requires that I break myself free from the depression and heartache that the devil loves to use in our lives. I learned I have to tell myself repeatedly that God IS good ALL the time – ALL the time God IS good! I learned that I will always be working on trusting Him and living by faith. We all have to work on our faith constantly because we are human and will fail so often. We must step out in faith more often so our trust and belief can grow even stronger. We do this and through it we begin to have a more mature relationship with God. I’m working on how to literally “live by faith”. I have no idea what God has in store for me, but He has taught me over the past month or so to stop selling Him short! I was putting a limit on what God would do in my life. I wasn’t praying for BIG things because I didn’t believe I would get them. I may not get everything I had in mind for my life, BUT God may have all of those things, and maybe more, in store for me. I have to learn to trust in Him more and more because right when I think my prayers have gone unanswered, He shows me how much more He can do for me – much more than I even prayed for.<br /><br />I got OUT and I was able to do something I haven’t done in almost 2 years! I ate at a restaurant and I can’t tell you how great that feels. God is working, even when I’m in doubt, or mad, or frustrated – He knows how I feel and He is working. I just have to step out in faith. I was hesitant about getting out – but He pushed me. I was concerned about how loud the restaurant would be – but again I felt Him pushing and I went! I serve a wonderfully loving and amazingly strong God and I am thankful for ALL that He does for me.<br /><br />Personal sidenote for those of you who know me well and get my Christmas cards every year: The picture on the card of me, M and my little baby dog, well, it came across as a big lie to me. Why? Well, because it took me three days to get ready for it. Taking a shower, painting my nails, fixing my hair, putting on full makeup – even lipstick and having nice clothes on for the first time in 6 weeks or so – well, it sure isn’t our regular day life!! We sat on our deck and used a tripod and self timer to take the pictures and took about 15 before I was ready to collapse – and we all know I don’t go outside often! In the picture I am doing what I instinctually do when a camera is around – SMILING BIG! When I looked at the picture on my computer I laughed so because I look so healthy and happy with my life. The reason that is so comical to me is because right after it was taken I came inside and just laid on the living room floor. M had to take my cardigan off me and my shoes. I looked at him from the floor and said, “This should be my Christmas photo – it’s a ‘true life’ shot!” Now I think perhaps that picture isn’t a “lie” – it may be a picture of what God has in store for me– good health and much happiness!<br /><br /><strong><em><span style="color:#ff0000;">“I cry aloud to the Lord, and he answers from his holy hill.”<br />Psalm 3:4 (NRSV)<br /><br />“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NRSV)<br /><br />“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” 1 Corinthians 2:9 (NIV)<br /></span></em></strong><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com3tag:blogger.com,1999:blog-6491588961853158395.post-53870882633577742362010-11-13T09:34:00.003-06:002010-11-13T10:20:31.528-06:00Just asking for prayers...I am healing well from the surgery. However, all of the symptoms haven't gone away. We had my post-op appointment with the surgeon yesterday and she said some people experience the nausea, lack of appetite, etc. for more than just one week so we're praying it all passes soon.<br /><br />We need many prayers right now. I started the Doxycycline and after 3 treatments I had to stop it. Something I never knew before going through treatment is that IV antibiotics can have really weird side effects - physical and mental - or maybe these type of side effects are just for people on long term therapy, or perhaps they just do these things to Lyme patients, I have no idea. What I do know is that the Doxy started making me horribly depressed. I would have accounted it to just having had surgery, or pain medication, etc. but the mental feeling I got was exactly how I felt when I was on Doxy in Kansas City. Back then I thought it was the stress of treatment or from being away from home that kept me depressed. Now I can say with certainty that a majority of that depression came from the Doxy. I was on my third treatment when I started crying for no reason, had bad mood swings and felt so angry all of the sudden. I cried and said, "I'm stopping this bag!" - basically turning the line off so that the Doxy wasn't going into my veins anymore. It only took about 15 minutes for me to start to feel more like myself mentally. I may have been able to handle those emotions more when I was in treatment with other patients who became close friends, but now that I spend most of my time alone I don't think it would be healthy to try and put myself in that mental state every day.<br /><br />I saw some improvement on Doxy back then, but I was on it for 7 months and I think I got all the benefits I could from that drug. Honestly, we were only trying the IV Doxy because I have been scared to try IV Rifampin - it's a strong antibiotic that is usually only used for treating tuberculosis. It can be hard on the liver and it is the color of orange Gatorade when it goes into your vein which is just kind of creepy. We were going to try IV Doxy and oral Rifampin to see how I handled it instead. We know Gentamicin is responsible for 90% of my improvement but my kidneys can't tolerate it. It is one of the 4 IV drugs recommended for Bartonella, I'm allergic to one of the other drugs, one is only available in injectable form and I need something stronger than that, then there's Rifampin. The improvement I saw from the Gentamicin let me know what I already suspected - Bartonella is my main problem. So, now me and M are back to the drawing board once again. We are praying about how to proceed. We are praying to lift my fears about our next move. We are just asking for guidance as we make our next big decision. We discussed IV Rifampin with the doctor last time and he is okay with prescribing it to me, but he didn't want me to feel scared about starting it.<br /><br />The main problem is that I am sliding back down to where I was before. It's hard to explain but it takes long courses of antibiotic therapy - sometimes 3 years - for some Lyme patients to "get their lives back". When we go off of antibiotics our symptoms will return until we reach a point in our treatment where we've killed enough of the bacteria and bugs to feel somewhat normal without the antibiotics. I was hoping I would be further along by now, but I clearly still need some form of antibiotic therapy. Good news is that I haven't had a seizure yet - which is a miracle since I've been off antibiotics for close to 3 weeks now. The bad news is that my sound and light sensitivity are back, I'm unable to handle anything very well - I get upset easily, can't think clearly, etc. I was on 40 mgs of Valium a day while in Kansas City to help with my seizures. On the Gentimicin I got to where I didn't need ANY Valium which was GREAT! However, I've had to start taking it again. Yesterday I took 30 mgs which is the most I've taken in 4 months.<br /><br />Sliding backwards is hard on me and watching it happen is really hard on M since he so wants to snap his fingers and make everything better for me. It's easy to start to feel sorry for myself or for us both to feel as if the rug is being pulled out from under us. It's easy to question and cry and to be mad. But none of those feelings is going to help us - we know from experience that they will only make things worse. So, we're asking you all to pray that God will lead us in the right direction in terms of my treatment. We are open to stopping IVs and trying to just do oral antibiotics, but we don't want to pull the PICC line until we know whether my body can absorb the oral medications well. We just want to go in the direction that God leads us with no fear, feeling strong and absolute about our next steps. We need to make a decision soon though before I get much worse. We will be talking to the doctor on Monday and hope to have a game plan by then.<br /><br />I appreciate all of your thoughts and prayers and will update as soon as I can about where we go from here. A couple of quotes from the book, "100 Days in the Secret Place" seem quite fitting for my current sitution. They help describes why it's so hard to give up trying to control your own life and how we must stop making our own plans instead of following where God wants us to go:<br /><br /><em><span style="color:#993399;">"Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally."<br /><br />"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inner silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give."<br /> -Archbishop Francois de Fenelon written in the late 1600s</span></em><br /><br />Much love to you all-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-78631365172451542832010-11-07T12:33:00.004-06:002010-11-07T14:03:15.802-06:00Post surgery updateSurgery went well. However the ultrasound didn't show the <span id="SPELLING_ERROR_0" class="blsp-spelling-error">adhesions</span> from my gallbladder to my kidney. It also hadn't shown how swollen it was. But, good news is that it is out! The surgeon said I may still experience some symptoms for the first week or so after surgery. For instance, not being able to eat normal portion sizes of food without pain. I do know that the horrendous heartburn is already gone and my back feels better. My incisions did bleed for a bit after surgery and my white shirt is now stained with blood. I think it makes me look tough - <span id="SPELLING_ERROR_1" class="blsp-spelling-error">haha</span>. I also had a wonderful surgeon and great nurses who let me keep my sunglasses and headphones on until the anesthesia kicked in and they were back on when I woke up in recovery. I'm very thankful for that because the bright lights and noises in recovery could have easily caused a seizure! So, again, the Lord always goes before me and this time was no exception!<br /><br />The bad part of the whole ordeal was the pain medication. After having passed over 100 kidney stones and having had 20 surgeries, well, I've developed a high tolerance for pain medications. The nurse in recovery couldn't believe how much I was still hurting after two doses of morphine. There are many instances where someone could fake pain just to get pain medication, but you just can't fake pain when you're coming out of anesthesia so they know it's not that you WANT morphine, it's that you need it. They ended up having to give me a 3rd dose and then later switched to a dose of <span id="SPELLING_ERROR_2" class="blsp-spelling-error">toradol</span> (another strong pain killer). M talked to the surgeon about my problems with pain medications and told her we still had some <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Fentanyl</span> pain patches from a kidney stone 7 months ago. She wouldn't be able to prescribe such a strong drug to me for a minor surgery but she went over with M what medications I could take while on <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Fentanyl</span> and what to avoid. I tried to just take the <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Lortab</span> pain pills she prescribed because I honestly HATE pain medication, but I got no relief at all with the pills. After 36 hours of watching me wincing in pain and crying out each time I moved, M finally told me he was going to put a pain patch on my back. I was hurting too much to argue about how I could "tough it out" so the patch was put to work. It works wonders and my incisions are now just sore and I can walk to the bathroom without bending over double!<br /><br />Oh, my kidney function tests showed improvement this week. We actually didn't know if I would be able to have the surgery on Thursday since they wouldn't operate if my kidney function stayed the same or worsened. So, again - THANK YOU LORD - because I was desperate to have that gallbladder removed. My kidney function even improved enough for me to start on IV <span id="SPELLING_ERROR_7" class="blsp-spelling-error">Doxycycline</span> this week - <span id="SPELLING_ERROR_8" class="blsp-spelling-error">YAY</span>!<br /><br /><br />I just wanted to thank you all for your kind thoughts and sweet prayers! I know that God has gotten me through all of this and I continue to lean on Him to get over the next hurdle. I pray that you all feel His love and protection as you go through your own hurdles in your life. I feel very groggy from medication right now, but I feel more blessed than anything else. I can see that God is still leading me down a path and He has wonderful plans for me! I just have to be patient and keep leaning on Him to get there!<br /><br />I know I've posted these verses before - but I don't think one can ever hear them enough:<br /><br /><strong><em><span style="color:#ff0000;">"I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord." Psalm 40:1-3 (<span id="SPELLING_ERROR_6" class="blsp-spelling-error">NIV</span>)</span></em></strong><br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-40363990400803650942010-11-03T10:05:00.003-05:002010-11-03T11:08:19.867-05:00Out with the bad...My surgery to have my gallbladder removed is scheduled for 10:30 tomorrow morning. This will be my third laproscopic surgery so the good thing is that I'm not nervous about it. The bad thing is that my blood test from last week came back and my kidney function was actually worse even though I had been off the antibiotic for 2 days before my blood was drawn. Until my kidney function gets back to normal, I can't take ANY antibiotics. And, the longer I'm off the antibiotics, more of my symptoms come back. Going to consult with the surgeon on Monday was very difficult. My noise sensitivity was bad and I had to go back to wearing my earplugs and even my headphones. After thinking about all the progress I've made I was able to notice more of the psychological symptoms that Lyme and Bartonella cause. I knew my mood swings had gone away - no getting angry for no reason and then crying because I couldn't figure out why I was angry. I recognized that I was able to think more clearly and was not as confused as I had been. I also noticed that I've been less anxious as well. <br /><br />Those are things you might not notice until they start to come back. I am having more difficulty thinking, although I believe that could also be due to the fact that I've had to be off of my blood thinner in order to have the endoscopy and the gallbladder surgery. No blood thinner means less blood flow to the brain which equals more difficulty processing even the most simple of thoughts. I have a hard time completing sentences without stopping in the middle to think of the next word. In fact, writing this entry has taken forever because I keep having to stop and think so hard about how to explain things. There is good news though. First, I don't feel those mood swings coming back. I thank the good Lord for that because they make you feel absolutely insane! Also, I'll be back on my blood thinner medication within a day or so of the surgery and after a few days of it I believe my ability to think clearly will come back. <br /><br />However, the anxiety has started to creep back in. It's anxiety over the smallest things - like going to an unfamiliar place, having to meet someone I don't know, or not be able to expect what's coming next in my day. I know noises can trigger my seizures and I felt that again as I was in the hospital and surgeon's office the other day. After spending months without the unexplainable anxiety, I now believe that the more anxious I feel the worse my sensitivity to sound becomes. The anxiety also seems to put my brain in a state where seizures are more likely. I've been noise sensitive for a long time - long before starting treatment in Kansas City. And while it definitely became much worse, I think the way noises startle me might cause my seizures more than the noises themselves. It's always been easy to startle me because my "fight or flight" response, which comes when you get scared, doesn't work very well. The horomone that is released by the adrenal glands to respond to situations where you get scared or startled is cortisol. My cortisol levels were sky high when I first got to Kansas City. So much so that the doctor said it was as if I were being chased by a tiger all day. I stayed in a state of nervousness and anxiety well beyond what would be considered normal. My cortisol levels are lower now, but my adrenal glands still don't work as well as they should. I think on the Gentamicin my anxiety lessened as did most of my other symptoms and my adrenal glands started to function better. My anxiety is not nearly as bad as it was before the Gentamicin. I believe God allowed me to have a break from so many of my symptoms in order for me to understand them better. Once you better understand the reason behind the symptoms, you can understand how to treat them more effectively.<br /><br />I've probably rambled on more in this entry than in others because well, I just can't think very well right now. I do trust in the fact that God has wonderful things planned for my life and that He will get me through all of this. I am looking forward to seeing how much better I feel after my gallbladder is removed. The surgeon said I might see a big difference in many of my symptoms, but that I should definitely have less back pain and stomach problems. I'll just be happy to eat again without getting sick and being able to get rid of this horrible chest pain. But, I must admit, I'm excited to think about what other symptoms may be related to my gallbladder that I haven't even thought about. God is good and He's proven that to me time and time again. I look forward to having this surgery behind me and for my kidneys to function properly again so we can get back on a treatment regimen and keep pushing forward. <br /><br />I appreciate all of your prayers and would of course appreciate some as I go through my surgery and recovery. I'll write an update as soon as I can. Thank you all so much for keeping me in your thoughts and prayers!<br /><br /><em><strong><span style="color:#ff0000;">"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14 (NIV)</span></strong></em><br /><em><strong><span style="color:#ff0000;"></span></strong></em><br /><em><strong><span style="color:#ff0000;">"O Lord, you are my God; I will exault you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1 (NIV)</span></strong></em><br /><br />Much love to you all!<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-61778609665261546882010-10-30T08:19:00.007-05:002010-11-03T11:11:16.358-05:00The ups and downs of it all...I have noticed a pattern since I've been on treatment. It seems like I'll be making progress, feeling better, have more energy - or some other positive thing - and then BAM, something knocks me down again. I'm quite tired of it to tell you the truth.<br /><br />I'll give you some recent examples. The Gentamicin was showing me the most improvement by far in my treatment! I didn't just go out into the world For the past 2 months I had been experiencing what I thought was horrible acid reflux or bad heartburn every day. The doctor put me on an acid reducing medication and it seemed like it helped at first. Anytime I tried to stop taking it though I would end up nauseated and getting sick. I figured it might be a side effect of the Gentamicin and thought I could deal with that side effect if I had to because I was seeing so much improvement in other areas.<br /><br />I have blood work done every week - I may have written about that before. Anyway, I have all of my labwork results from June of 2009 to now in chronological order. The results are mailed to me each week. I had noticed that my creatinine level was climbing for a few weeks, but it was still within normal ranges. Creatinine is a waste product in your blood that your kidneys filter out. Testing creatinine levels basically tell you whether your kidneys are filtering properly. I was concerned that it was getting higher, but not too concerned - until it went outside of the normal range. Sometimes when you're on IV antibiotics there are times when your kidneys just seem to "slow down" in their filtering process. I had times where this had happened while I was in Kansas City and the levels went back to normal within a couple of weeks. When my creatinine levels was high for the 3rd week in a row the doctor and I both knew it was time for a meeting.<br /><br />I knew that we would have to stop the Gentamicin because you just can't push your kidneys like that. We were basically meeting to discuss what other antibiotic choices we had and what we thought would be the next best thing for my treatment protocol. Since I was there I decided to tell him just how HORRIBLE my acid reflux was. I only did this because I had stabbing pains in my abdomen on Sunday and I was generally feeling worn down and nauseated all the time. He scheduled an endoscopy (where they put a small scope down your throat to see inside your esophogus and top of your stomach) and a couple of tests to check out my gallbladder.<br /><br />Wednesday I had an ultrasound on the gallbladder and then a test that basically checks the function of your gallbladder. They inject die into your system and then take scans of your abdomen for an hour (but you get to lie down so it's not bad). They then inject an enzyme and see how your gallbladder handles it. That part made me nauseated and feeling weak. The next morning I had the endoscopy done and the doctor said everything looked fine - no damage to the esphogus or hiatal hernia, etc. The lab results for the gallbladder test weren't coming back until Friday.<br /><br />In the meantime I was feeling like crap! I was so ready to find the problem and fix it! I was actually praying they would have to remove my gallbladder because that would be an "easy fix" compared to trying to treat yet another symptom. So, I was happy to find out yesterday that my gallbladder will have to be removed. It has about 25% functionality and is the reason for the heartburn, severe pain in my abdomen and my upper back. We meet with the surgeon on Monday afternoon for a consult and to set up a date for the surgery. She performs surgeries Wednesdays through Fridays so I am praying we can get in on Wednesday because I'm VERY tired of not being able to eat without excrutiating pain and attempts to throw up!<br /><br />I stopped the Gentamicin this past Monday and so far have been impressed that I am still functioing well and not having seizures, etc. I did exceptionally well out in public at the hospital for the tests and I didn't even wear earplugs - YAY! Last time I took a short break from the Gentamicin I ended up having a small seizure by day 4 so I was very worried about having to get off of it. But I think God is showing me that it is HIS plan to have me off the Gentamicin. I still have a hard time with control - I want to control my situation but I cannot. God is showing me that He is in control and He can do great things - like giving me the ability to go out in public with no earplugs! I was worried about getting these tests done as soon as possible and to schedule my surgery as soon as I can. It wasn't just for the pain factor, but also because that being off the antibiotics could mean the seizures might start up again, and for the simple fact that I can't start a new antibiotic until we get all of this done. I was hoping I could start one this week, but my blood work from this Wednesday came back showing I still have high creatinine levels. We can't start ANY antibiotic therapy until my kidney function improves - praying my levels are back to normal this week!<br /><br />I'm forcing myself to think that this may be God's way of leading me down a different road in my treatment process. There will be a day, hopefully soon, where I'll get off of the IV antibiotics and just continue on orals. I have prayed that God will make it abundantly clear to both M and I as to when that change needs to happen. For now the doctor says we should stick with IV meds until we stop seeing improvement. So far we haven't stopped seeing improvement - we keep seeing MAJOR improvement - thank you Lord! When I went in to see my doctor on Tuesday I pushed myself to put on FULL makeup - foundation, powder, mascara, lip gloss, etc. I went into his office without the earplugs like last time, but for the first time ever I went without my sunglasses! I am handling flourescent lights better - still not great, but for short periods of time I can deal with them. It's the first time his staff has even seen my full face! Outside of a very quick eye check a few months ago, it's the first time my doctor has seen me without my sunglasses! He had to hug me twice because he was so happy for all of this progress! He just beams when he sees me - no oxygen, no wheelchair, no earplugs or headphones, and now - no sunglasses!<br /><br />So, while I may feel like there's a pattern of 1 step forward then 2 steps back in my treatment, well, that's just not true. I hate that there's a couple of wrenches in the works - like poor kidney function and the gallbladder surgery. BUT when you think about where I was a year ago, or even just 3 months ago - WOW - I have come so very far! God might not have taken all the pain out of my life. He may not have made my path to recovery a smooth one - but He is healing me! I am just being impatient - or rather, being human. This has seemed like a very long journey to me, but I stop and think about how it might seem to God. I imagine that close to 17 months of treatment go by in a blink of an eye in God's time table. When we pray most of us ask God for something to happen. I know people who are praying for a job, or for their children to do well in school, or just for some peace in their lives, and when it doesn't happen within a few weeks we all think, "Well, I guess the answer to my prayer is just NO." We are so silly aren't we? I have just been praying for healing and I have been trying to tell God that I just can't take all of this anymore! But that's absurd since God's the one who has been carrying me through all of this anyway and He can get me through much more. Sitting back and comparing where my life was one year ago to where it is now - well, I have so much to be thankful for because my prayers are being answered. I may still have a ways to go, but sometimes if we step back and focus on our "big picture" we see that so many of our prayers have been answered. I know I've seen so many problems that I've prayed about all work out just fine.<br /><br />So, yes, I do have to have another surgery and yes, I hate that I have to go through another set back. I hate that I have to go back to the drawing board as far as coming up with a new antibiotic treatment regimen. I hate that my kidneys aren't handling this very well. BUT how much happier am I that I can see such amazing progress? When I started writing this I did feel a little, "poor me...having surgery again" (that should be said in the voice of Eeyore, the donkey from Winne the Pooh - he has a great complaining voice). However, by the end of typing ALL of these thoughts, God has shown me that He is ALWAYS working - no matter if we can see it or not. In my case, I am getting to see His work - His healing me - and I am humbled to be so very blessed. I'll get through that laproscopic gallbladder surgery just fine and I will find out how much better I REALLY feel afterwards! I bet it'll make me even more thankful for what He has done!<br /><br />Oh, and of course, I am always thankful for all of your prayers - they are being answered! I'll try and write on here to let you know when the surgery is going to be and again as soon after the surgery as I can. I can't wait to see what's in store next!<br /><br />And, since it is time for trick or treating I thought I would post a picture from last Halloween where the patients in the clinic dressed up for Halloween. I'll post a picture of me from then and compare it to a picture taken of me this past week and you'll see the big difference!<br /><br />Oh, and I'm a big fan of sarcastic humor - or in finding humor in sitations that aren't really humorous so last year I dressed up as Lyme Disease:<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe8DdjmbYrKGPh4XfPbqqxIGc1oLMbhekeu9B-LxtVgvcqoP85-M85AgeG_woYHio9l_S-3F732sL8x3bPaS4vYyN2Ca6HcKrSsfPLpw4aS1mUoYFZFEgYRNVQHm66vchorV85Lp6ByWHT/s1600/Me+pushing+Benny.jpg"><img style="WIDTH: 240px; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5533864163813317714" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe8DdjmbYrKGPh4XfPbqqxIGc1oLMbhekeu9B-LxtVgvcqoP85-M85AgeG_woYHio9l_S-3F732sL8x3bPaS4vYyN2Ca6HcKrSsfPLpw4aS1mUoYFZFEgYRNVQHm66vchorV85Lp6ByWHT/s320/Me+pushing+Benny.jpg" /></a><br />My shirt says, "I have Lyme. You got any tequila?". The lime green spirals of ribbon on the top of my hat symbolize the Lyme spirochete bacteria which are shaped like corkscrews. The two green monsters on my hips stand for the Lyme co-infections Bartonella and Babesia. Like I said, I find humor in the things most people don't find funny at all. But, honestly, wouldn't you rather laugh than cry? Or maybe cry laughing??? Also, I may feel like total crap, but when there's a camera around...well, I smile - haha! Oh, and that's IV Benadryl that I'm pushing into my PICC line.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeIl3k4FMnch5ZodXGoSNitpq6Ag4O5B5-5hcNuxSrdg6mZ6ve9j4S-DjuLvnHTVFS95fOLICWccVVD2EOwhoVal-uoUA_mqKHlP5ndhGpqj1k17ZFEqmzq6ryNKE4BjPVtkx7WmIm1WxU/s1600/Profile+pic+larger+size+for+blog.jpg"><img style="WIDTH: 184px; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5533865657196628738" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeIl3k4FMnch5ZodXGoSNitpq6Ag4O5B5-5hcNuxSrdg6mZ6ve9j4S-DjuLvnHTVFS95fOLICWccVVD2EOwhoVal-uoUA_mqKHlP5ndhGpqj1k17ZFEqmzq6ryNKE4BjPVtkx7WmIm1WxU/s320/Profile+pic+larger+size+for+blog.jpg" /></a><br />Now - this picture was taken on my deck this past week before my doctor's appointment. I'm 15 pound heavier, have the ability to stand up longer, am outside without sunglasses (well, just for this picture anyway but it's a start) and I'm even wearing shoes with heels instead of comfy tennis shoes because the severe pain in my feet is not there anymore! God is SO good!!!<br /><br /><strong><em><span style="color:#ff0000;">"Who is as mighty as you, O Lord? Your faithfulness surrounds you." Psalm 89:6 (NRSV)</span></em></strong><br /><br /><strong><em><span style="color:#ff0000;">"I lift up my eyes to the hills - from where will my help come? My help comes from the Lord, who made heaven and earth." Psalm 121:1-2 (NRSV)</span></em></strong><br /><strong><em><span style="color:#ff0000;"></span></em></strong><br /><strong><em><span style="color:#ff0000;">"Pray for one another, so that you may be healed. The prayer of the righteous is powerful and effective." James 5:16 (NRSV)</span></em></strong><br /><strong><em><span style="color:#ff0000;"></span></em></strong><br /><strong><em><span style="color:#ff0000;">"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17 (NIV)</span></em></strong><br /><br />Much love to you all!<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com2tag:blogger.com,1999:blog-6491588961853158395.post-52578826371881342472010-10-14T13:05:00.002-05:002010-10-15T13:07:05.394-05:00Appointed and DisappointedI’ve been feeling disappointed lately. When I first started the IV Gentamicinin in late August I saw so many improvements in my health and my ability to do things. I started expecting more and more improvements and imagined what I’d be doing by now, the middle of October. I had plans basically and have been disappointed that I haven’t been able to follow through with them by now. I wanted to be getting out into the world by now, but my sound sensitivity is still so bad that I have yet to venture outside of the house. I’ve been in the house for 2 months now and I’ve been in a hole feeling sorry for myself about it. That leads to me being disappointed in myself for how I’m handling all of this. I feel like I’m not appreciating the things I can do, that I wasn’t able to do 2 months ago. I want the whole process to speed up! I’m disappointed that it I haven’t gotten well FASTER. I’ve just been disappointed.<br /><br />I was thinking about being disappointed. I can’t watch much television or be on the computer too much because it zaps my energy, and I’m alone most the time so I have a LOT of time to think. I went from thinking about my being disappointed to thinking on the word disappointed. I thought about the many words there are in the English language that mean one thing and then if you add the prefix “dis” to the word its’ meaning is the opposite of the original word. For example, you can assemble something – put something together – and you can disassemble something – or take it apart. God was leading me on a “thought pattern” which is when I have no idea He’s showing me something – I’m just thinking, not wondering if there’s a point. These “thought patterns” lead to some of my most important observations, or rather they lead me to something God wants me to learn. God put it on my heart to share this with you so I wanted to explain that what you’re about to read is laid out exactly as it happened in my “thought pattern” so there will be some twists and turns as I get to a point…nothing new there I guess.<br /><br />So, as I thought about the word disappointed, I started thinking about the word appointed as well. I think God wanted me to “research” those words. When I looked up the word appoint in the dictionary it listed multiple definitions or ways this word could be used. One definition was “to name or assign to a position” and it gave examples of how we use that word in this day and age, such as “to appoint a judge to a bench” or “to appoint a new treasurer”. But, the last definition was listed as “archaic” which suggests that many years ago, or even centuries perhaps, the word had a somewhat different meaning. That definition was “to order or establish by decree or command” and the example was “laws appointed by God” and that’s the definition I believe God wanted me to understand.<br /><br />Then I looked up the true definition of disappoint and read, “to fail to fulfill the expectations or wishes of”. Another definition explained the meaning as “to defeat the fulfillment of (hopes, plans, etc.); thwart; frustrate”. If we use our modern day definition of appoint and disappoint we believe that the word disappoint would be to fail at a job or task we were appointed to. However, I think God had me read these definitions for the purpose of understanding that disappoint could also mean to fail at a task appointed by God or a command given by God. So if I feel disappointed then what task or commandment given by God am I failing at or not following?<br /><br />When asked what the greatest commandment in the law was, Jesus replied saying, “Love the Lord your God with all your heart, and with all your soul, and with all your mind. This is the first and greatest commandment. And the second is like it: Love your neighbor as you love yourself.” (Matthew 22:36-39) Jesus later gives all Christians a task – often referred to as “The Great Commission”. Jesus said, “All authority in heaven and on earth has been given to me. Therefore go and make disciples of all the nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you.” (Matthew 28:18-20). So I had to think if I was not doing those things, not putting God first, not sharing God’s love, or not sharing God’s word. I realized I was failing at all of those things. I believe that is the real root cause of my disappointment. When you put your hopes on circumstances, things or people, you will most likely end up disappointed. When you place all your hopes and your trust in God you can’t be disappointed.<br /><br />I realized that I had I had been focusing on getting well more than I had been focusing on God. I was placing more importance on what I could do to get well rather than what I could do to get closer to God. I was not loving my neighbor because I was too focused on how other people’s lives seem so much easier than mine – I was envious instead of loving. I also realized I had been shying away from writing entries on here, so I was not using the one way I have of reaching the outside world to spread the love or the word of God. Basically my priorities had gotten turned around again.<br /><br />Then God hit me with something very hard. If I put the archaic definition of appoint with that second definition of disappoint the result is scary. The combination of those definitions would be “to thwart” the “commands or laws appointed by God”. Not just fail at the tasks and commandments, but to actually get in the way of them. It would mean to try to DEFEAT the fulfillment of God’s commands. WOW. I then thought, “I don’t get in God’s way!” – but after thinking on it I realized that I do get in God’s way. I get in His way every day! I was failing at the two greatest commandments AND the Great Commission because I was too busy blocking out what God wanted me to think about by focusing solely on what I wanted to happen in my life. He wants me to love Him with all my heart and yet too often I find that my heart is focused more on getting well and not on God. I hate to admit that I’ve also put things I want before Him at times, but I have. I’m letting my thoughts focus on other things rather than God. It’s not on purpose, but I can control it if I constantly bring my thoughts back to God. And when I’m busy feeling disappointed about what my life is like or feeling frustrated with my treatment I’m missing the opportunity to share God’s love. I’m even missing out on feeling God’s love for me. What’s even worse is that I find I might do these things several times a day!<br /><br />We can all interfere with the instructions and commandments given to us by Jesus without even knowing what we’re doing. Keeping all of that in mind, we must realize that when we feel true disappointment it may actually be because we have thwarted or gotten in the way of God’s plans for us. We may have unknowingly defeated ourselves. We often pray and feel as though we get no answers or that God doesn’t hear us, but that’s not the case. I believe we are often too focused on what WE want to happen that we may completely miss what GOD is doing in our lives or where He is trying to lead us.<br /><br />I don’t want to focus on my health instead of God because I will only end up frustrated. I’m doing all I can to get well, and that’s all I can do. I don’t want to be envious of other people’s lives because in all honesty I have no idea what their lives are like, they could be dealing with huge problems I don’t know about. I definitely don’t want to miss out on sharing God’s word with others because I know how important a true relationship with God is. My relationship with God is not only what gets me through all of my health obstacles – it’s what has kept me sane and pushed me through the hardest days! I want everyone to ask Jesus to live in their hearts and to ask that God direct their paths. Why do I want that? It comes back to those two words – we are all appointed to love God, to love others, and to share God’s word with others. If we fail at those things, well, it’s no surprise that we would feel disappointed in our own lives.<br /><br />I’m going to share something about focusing our thoughts on God from the book, “Jesus Calling” by Sarah Young (the missionary who was in treatment with me in Kansas City). She writes the daily devotionals as though Jesus were the one speaking:<br /><br /><strong><em><span style="color:#6600cc;">“Make Me your focal point as you move through this day. Just as a spinning ballerina must keep returning her eyes to a given point to maintain her balance, so you must keep returning your focus to Me. Circumstances are in flux, and the world seems to be whirling around you. The only way to keep your balance is to fix your eyes on Me, the One who never changes. If you gaze too long at your circumstances, you will become dizzy and confused. Look to me, refreshing yourself in My Presence, and your steps will be steady and sure.”</span></em></strong><br /><br />She references two verses as well:<br /><br /><strong><em><span style="color:#ff0000;">“Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.”<br />Hebrews 12:2 (NIV)<br /><br />“But you remain the same and your years will never end.” Psalm 102:27 (NIV)<br /><br /></span></em></strong>I wanted to share one more verse that hit me today:<br /><br /><span style="color:#ff0000;"><strong><em>“I waited patiently for the Lord; he turned to me and heard my cry.” Psalm 40:1 (NIV)</em></strong><br /></span><br />I have to remember that a lot – to wait PATIENTLY on the Lord because He does hear my cries. And guess what…as soon as I finished this entry I went and put on some clothes. Then I brushed my hair and my teeth – I even dabbed on a little bit of makeup. I’m headed out the door of this house – I don’t know how I’ll handle being out in public, but God has given me the strength to go find out. You don’t get somewhere by sitting around. When we feel God pushing us, well, we have to push WITH Him instead of against Him to go forward. I’m going forward in about an hour. I’ll let you know how it goes as soon as I can!<br /><br />Much love to you all-<br />K<br /><br />***10/15/10 - Editor's Note***<br />I went out yesterday and it was WONDERFUL! I went to a bookstore and didn't have to wear earplugs. I wore sunglasses but not for the entire time I was in the store. My mom then took me to a clothing store and the music was SO loud. I put in my earplugs but it was still too loud. Amazing thing is that I didn't drop down and have a seizure! We went to another clothing store where the music wasn't as loud, I kept my earplugs in and I even bought a pair of jeans! It was about 2 hours of being "out and about" and it was GREAT! I took some Valium before I went but only 1/4 of the amount I used to take every day in Kansas City. I never even felt like a seizure was coming on :) I can't explain how excited I was to be out in public and how great it was to feel a little normalcy in my life. We're going to try and get me out of the house a couple of times a week for an hour or two at a time. But I also know that there will be days I won't feel up to getting out and I can't let those days kill the joy of my really good days. I am thanking God for such a wonderful day!Khttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com2tag:blogger.com,1999:blog-6491588961853158395.post-6746839879055258872010-09-30T13:30:00.001-05:002010-09-30T13:32:44.705-05:00How to get out...Have you ever found yourself in a situation where you thought to yourself, “How did I ever get here?” I know there’s been plenty of times, and lots of different situations, where I’ve asked myself that question. In reality I should have been asking myself, “How do I get out of here?” I have found that when things get hard it’s a lot easier to sit and think about what could have caused my problems than thinking of an actual solution to them. Over the past few years I have asked myself how I ended up in this bed countless times. This particular situation is different in that I couldn’t help being sick, but the logic is the same. I focused on how “unfair” things were. I thought about how other people had much easier lives. Basically, I felt sorry for myself and I kept thinking about how bad things had gotten. What I didn’t do was stop myself from that train of thought and think, “What do I need to do to get out of here?” because that is the more important question.<br /><br />I think God has allowed me to go through all of this for many reasons, some of which I will never know. However, I do know some of the things it has made me think about and often times work towards changing. Just for starters, it has changed who I am, how I act, what is important to me, what kind of life I want to lead, and what kind of people I want to surround myself with as I go through this life. Quite simply, I will look back on this time, on these years of sickness, and I will say, “That is when my life changed for the better.” Might sound odd, but I know that I was supposed to go through ALL of this in order to figure out who I was and more importantly, who God wanted me to become. I have to hope and pray daily that I am getting closer to becoming who God wants me to become because honestly, it’s so easy to fall into the trap of feeling sorry for myself. Even when I see so many improvements I often wonder why things aren’t happening faster. I’m like a child who can’t appreciate all the wonderful toys I already have because I’m too busy wanting the toys I don’t have. So, I pray that I am sticking to the physical AND mental course God has set for me so that I don’t skip over anything. God wants me to see how many prayers have been answered for me and some days I am overcome with just how many He has answered. But, I’m human, so on other days I focus on the prayers He hasn’t answered for me. Silly thing to do since you never know what prayers God will answer or, maybe more importantly, WHEN He will answer them.<br /><br /><em><span style="color:#663366;">Robert Frost wrote, “The best way out is always through.”</span></em> I’ve thought a lot about that quote over the past week or so. I’ve wondered if I’m doing what I need to do, if I’m doing all I can do, to get better sooner. When I’ve suffered a set back, I would feel as if the world was ending and would get so upset. That’s when I thought about the quote from Robert Frost. There is no way to speed things along, there is no magic potion that will have me up and out of this bed and leading a “productive life”. It took years to get that sick, it’s taken a year and a half of treatment to get me feeling half-way human. It only makes sense that I won’t be able to jump up tomorrow, get dressed, and go drive myself somewhere. So, it’s not that the “best way out is always through” – it’s that “through” is the ONLY way out! So, I continue to fight to get better. The fight is getting easier, but sometimes that makes it more mentally frustrating. I am feeling stronger – I do want to go and do a million things – but I simply have to wait and slowly build up my strength. I still have other diseases to fight. I will get there, but not by force. I will get there by faith. I know God can do anything and I know He has led me through all of this. He has not stopped leading me nor will He ever give up on me. I need Him every day. I don’t just need Him for getting me through another day when I feel horrible. I need Him on good days too. But, I always thank Him for getting me through those MISERABLE days. I need to focus more on thanking Him for the “Hey, I don’t feel like death today” days as well.<br /><br />I’ve had some set backs lately. The anti-parasitic medication has not been easy on me, but I’ve been through much worse for sure. I’ve had more of the fevers again, felt weaker, had to slow myself down and keep myself from trying to “push through the pain”. But, I’m doing so much better than I was 2 months ago. I have to keep reminding myself that it doesn’t happen overnight. It takes time and that’s okay. I need to realize that God has always had a plan for my life and while I may think things are taking too long, He’s always had the timeline planned out. I need to stop thinking about “how I got here”, to stop feeling sorry for myself, to stop comparing my life to the lives of others – in short, I need to just trust God. I guess that’s something we all have to work on doing every day. We like to think we are in control of so much, but in reality, God’s in control and we need to seek His guidance as to how to get through each day.<br /><br /><strong><em><span style="color:#ff0000;">“I will bless the Lord at all times; His praise shall continually be in my mouth.” Psalm 34:1 (NRSV)<br /><br />“He is not far from each one of us. For in him we live and move and have our being.” Acts 17:27-28 (NIV)<br /><br />“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.” Psalm 4:8 (NIV)<br /></span></em></strong><br />I again want to thank you all for your prayers and for just keeping up with me. The computer is my way of staying connected to the world and I’m glad there are people who want to read my ramblings as I journey along.<br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com1tag:blogger.com,1999:blog-6491588961853158395.post-71612621399186562382010-09-24T14:01:00.002-05:002010-09-24T14:25:12.493-05:00Quick updateI feel bad for not upadting sooner. Just wanted to say I've been doing well - getting out of the bed a lot more, building up muscle mass in my legs! Just being able to do a few things out of the bed perks me up so much! There are still days where I don't get out of the bed - today being one of them - but I feel I'm improving slowly but surely.<br /><br />The bad thing about these diseases is that once you start feeling stronger there's always another disease you need to hit! So, since I'm tolerating the Gentamicin IVs so well we started me on the supplements Para Cleanse and Colon Booster. I know it sounds weird to say I'm killing off parasites in my body, but did you know over 80% of people have some sort of intestinal parasite? Most of those people never even know they have them because their immune systems can handle things like that. But, when you put parasites with other illnesses that weaken your immune system there is a problem. So the past week or so has been difficult. The toxin level in my body has risen due to the die off of some of the parasites. Pair that with the toxins from killing off the other diseases with the IV anitbiotic and you get someone who's very tired and weak feeling. I force myself to get up and do things some days, but some days I simply can't. I also know I push myself way too much some days, and that ends up with me in the bed for a few days. BUT, it's a signal of SO much progress that there are days when I CAN push myself. Before I may have had the desire, but not the physical ability to get up and do anything. I am improving, it's just a slow process.<br /><br />I don't know if I ever mentioned this on here but I have daily fevers. I've had a fever every single day since March. Most days they go anywhere from an elevated temperature 99.5 or so up to 101 degrees. However, since my normal body temperature is low (usually 96.8) even going to 99.5 is hard. I've been seeing some improvement in the fevers lately. They haven't gone away, but they aren't going as high every day. That's a really good sign. But, if you want to know what a "good day" is for me, imagine having the flu, mono, a fever, and a stomach bug all at the same time - well, you get the idea...haha. The Lyme, Bartonella, Babesia, etc. take such a toll on me that a good day is when I feel "half-way sick" but I am improving and I am praying that soon my good days will actually be closer to what healthy people's good days feel like!<br /><br />I'm working on another post but God's not done letting me know what to say. So, in the meantime, I figured I would let you know what's going on with me health wise. I'm improving, I'm still fighting, and I'm still in need of prayers to get through all of this. I appreciate each and every one of them!<br /><br /><strong><em><span style="color:#ff0000;">"God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so tht you may be able to endure it." 1 Corinthians 10:13 (NRSV)</span></em></strong><br /><br />He has not tested me beyond my strength, He has provided relief to me, He has carried me through these things, He is faithful and will provide a way out for me. God is good all the time, all the time God is good. <br /><br />Much love to you all-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-37200895557941519802010-09-08T14:38:00.002-05:002010-09-08T14:45:40.441-05:00Climbing up from the valley...I haven’t written any updates lately because, and yes I realize how ridiculous this sounds, I haven’t wanted to (you guessed it) “jinx” it. When will I learn to just trust God and understand that I can’t “jinx” anything? Another reason I didn’t write about some of my big improvements is because the diseases I have are different than most in the fact that you can go from really good to extremely bad very quickly. I guess I felt like people might not understand if I wrote about feeling better then had to turn around the next week and explain that I felt bad again. I struggled with this entry more than any other I think. However, after talking with God I realized I have had so many wonderful people praying for me and they needed to know how many prayers were being answered. I also realized that the people who have continued to read this would understand if I had to come back and explain that things had gotten bad again. God made me see that if I didn’t write about my progress then He wouldn’t get the full glory He so rightly deserves and none of you would get to feel that amazing feeling that comes when you see, or read, about prayers being answered. So, to God be the glory for what He’s done for me.<br /><br />In my last entry I wrote about doing laundry and accomplishing a few other tasks that made me see how much better I was getting to be able to do any of that. However, I also wrote about how frustrated I got when I realized that I wanted to do MORE and I couldn’t because my body has been in bed for almost 2 years straight. I also wrote about how hard treatment itself is on the body. I wanted to get up and do more but in all honesty, I couldn’t because I don’t have the muscles to do things anymore. My calf muscles feel, and look, like they aren’t even there. I understood that my body couldn’t do more because of what all I’ve been through.<br /><br />I prayed and just talked to God about how I would get some strength back. After thinking about what all I’ve been through I realized I basically need physical rehabilitation. So guess what…I started my own rehab! I actually got on our elliptical machine downstairs and went for 3 minutes one day. Of course, I didn’t have any incline or resistance turned on but still – I was in motion for 3 minutes! Then I started to slowly increase. My husband would laugh at that last sentence because my version of slowly increasing was to go from 3 minutes to 7 minutes then to 15 minutes. I am so OCD about how I work out on that machine. I mean, the screen tells you how long you’re on, how many rotations you’ve done, how fast you’re going, how many carbs you’re burning – who wouldn’t start staring at numbers and pushing harder and making goals instead of just doing 3-5 minutes every day – haha! I have to keep my pulse oxymeter on to make sure my heart rate doesn’t go too high but that’s really the only number that will stop me! I’ve said before that we won’t know the extent of my cardiac damage for probably a year or so after treatment. My heart still has to work hard just for me to stand up since my blood pressure bottoms out when I stand up. If I stand up and stay in one position I will pass out the only question is how quickly it will happen. SO, I am watching my heart while I start this rehab process. My heart rate when I’m sitting is usually in the high 60s to low 70s but when I stand up it’s around 120. I don’t want to push it too hard so I make sure that it doesn’t go above 140 when I’m on the elliptical machine.<br /><br />I am still having to deal with some emotional herxes from the IV medication. I find myself frustrated easily so I know I need to keep bringing all of this to God. Some days it’s hard though. It’s as if my mind wants to be mad at God for all I’ve had to go through, but my heart knows that He’s bringing me through all of this. He is the reason I’m getting anywhere. I have to stop thinking, “Why did I have to get so sick? Why did I have to miss out on the past 5 years of my life basically?” and I have to start praising God for all He’s doing and what I know He will continue to do for me. I am such an impatient person and I am so ready to be healthy and “get on with my life” that I have a hard time thanking God for each and every improvement. But I’m trying to praise Him more and question Him less! I think most people probably have a hard time with that! There are so many questions we have about the bad things that happen in this world that we often overlook the multitude of wonderful things God does for us on a daily basis!<br /><br />I’m going to be honest and explain that just 2 months ago things were extremely bad with my health. There were a few nights that I worried I just wouldn’t wake up in the morning. I had such horrible pain and was on oxygen almost all the time. I was too weak to walk the 5 steps to my bathroom and would have to support my weight on furniture or walls to get there. It was one of the darkest times of my life. I told my husband that over the past 5 years I’ve gotten used to continuing to fall lower and lower. It seemed like I was going downhill and each time I would think I hit the bottom, well, I would fall even lower. So, for a long while I think I had fallen off the mountaintop and had found the deepest part of the valley. I walked with God there for a long time, or rather God carried me through that valley for a long time. I have always believed that you learn more from your time in the valley than you do from time on the mountaintop. When you’re on the mountaintop you don’t feel that deep need to lean on God for every single thing. But, when you’re in the valley God is the only thing you have to cling to and your dependence on Him grows daily. I would not be the person I am today if not for my times in the valley. As much as I hate to look back at all the times in my life when I was unable to do things because I was sick, well, from my current perspective I realize those were the times that God was working on me the most. His greatest work in me has come in the past 3 to 5 years as I have struggled so much but learned to lean on Him so much more.<br /><br />Now, here I am with good news. Here I am walking around my house, taking showers, doing laundry, getting on the elliptical machine – can you believe how fast God has started to bring me out of the valley? But I must admit I had another thought about getting out of the valley. Falling down from the mountaintop did not take work – it just happened. However, climbing out of the valley is another story. God will be the one who gets me out of the valley but I must be active in my own rescue – I must push myself to take the next step. I must force myself to remember what it was like to have a “real life” where I could function somewhat normally. Falling down happens to you but getting up is something that requires effort. Of course I am not alone in this effort! God is with me as I climb up the side of the mountain just as much as He was when I was falling in the valley. The difference to me will be how much more I appreciate the view from the mountaintop after spending so much time in the valley.<br /><br />I have another story before ending this long entry. While I was in Kansas City I had the pleasure of meeting another patient there named Sarah Young. She and her husband have been missionaries for over 20 years. I must say she radiates God’s love – it just shines right through her. And as much as I hate that we had to meet under such horrible circumstances with both of us going through IV treatment, getting to know her was a blessing. If you’re wondering why I’m using her full name it’s because she’s also an author who has written a wonderful daily devotional book called, “Jesus Calling”. She gave me the audio CD version last August after I had gone through the emergency surgery where I lost my right ovary. I was too sick to be able to read but she knew that listening to it might help me. She had been sick for a long time too and this book came out of her personal writings in her prayer journals. As years went by she started focusing more on listening to God and writing down what she thought He was trying to share with her rather than just writing down her own words. She’ll tell you that her writings are not inspired as Scripture is, but they helped her grow closer to God. I started to listen to this book again lately as I went through my morning IV treatments. As I’ve seen improvements in my body each day, the book started to take on a new meaning to me as I listen to it this time versus when I listened to it at this time last year. I didn’t realize that lately I started asking God not only, “Why me? Why do I have to go through this?” but also, “When is this going to end? Will there ever be a day when I can say I’m healthy?” So, one morning as I listened, I heard the devotional for that exact day and it hit me hard. I wanted to share it with you:<br /><br /><em><span style="color:#993399;">“Grow strong in your weakness. Some of My children I’ve gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. Your fragility is not a punishment, nor does it indicate a lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.”</span></em><br /><br />She wrote that after reflecting on the following verses:<br /><br /><strong><em><span style="color:#ff0000;">“Now listen, you who say ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’” James 4:13-15 (NIV)<br /><br />“Trust in the Lord with all your heart and lean not on your own understanding.” Proverbs 3:5 (NIV)<br /><br />“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:28-31 (NIV)</span></em></strong><br /><br />I used Isaiah 40:31 in my August 21st entry after being able to go without the wheelchair to my doctor’s office. I use that verse a lot. It’s one I cling to and love to read. I now have the hard copy of Sarah’s book as well and lately I either read or listen to the CDs most every day. I read it knowing that she wrote it during the time in her life when she was sick and could not find help. I read it knowing that as a missionary of 20+ years, she was hit by the same diseases that I had been hit with. I read it knowing that we will never know the answer to “Why me God?” and that our belief in God and our works here on earth do not keep us from experiencing bad things. However, our belief in God does help us get through those bad things and sometimes those bad things inspire us to do great works here on earth that can help others. Finally, I write this as I struggle to climb out of the valley and I know I must continue to lean on God as I begin my ascent. Thank you dear Lord for blessing me with so many improvements in my life!<br /><br />(Side note: To those who know me personally and who want to comment on one of my entries please do not use my full name. I have left this blog open to the public so that anyone could read it whether they know me or not and that is why I use “K” when I write or “M” when I talk about my husband. I have pictures on here and I think that’s as much as I feel safe sharing. I’m sure you all understand and I truly love when I get comments! Also, if your comments have been deleted it is because my name was used so please don’t take offense.)<br /><br />Much love-<br /><br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com4tag:blogger.com,1999:blog-6491588961853158395.post-27507183330528988772010-08-28T12:53:00.001-05:002010-08-28T13:06:21.473-05:00Thanking God for laundry...I am so very human and God made that crystal clear to me this week. He showed me just how impatient I am. We all know the “give them an inch and they’ll take a mile” phrase. We use it to describe people who are never satisfied with what they have. People who ask for something and when they get it they immediately ask for something else, something more. We can easily spot that in someone else but we rarely notice it in ourselves. This week God showed me how I too want to “take a mile”. I raved about the progress I got to see last week when I went to the doctor’s office. Then I had a few really hard days where I went back down and I was crushed. In my last entry I explained that I believed God let me have that really good day so that I might see a light at the end of this long tunnel. However, I am human and after that really good day I wanted MORE. I wanted to get up and clean my house, or better yet to get out of my house. I wanted to go out in public and not be bothered by noise or lots of people moving around. I wanted to drive my car. It’s been almost 16 months since I have driven at all. I wanted to be a “productive member of society” again. I simply wanted MORE!<br /><br />This week I got a little taste of MORE and I liked it! Since I have been on the Gentamicin I am happy to report that I have not had any allergic reactions or seizures during treatment. I haven’t had a full grand mal seizure in a month! To God be the glory!!! I asked M if I could try to go without a “baby sitter” since treatments were going well. I haven’t been able to be stay home alone for almost 2 months. I get tired of feeling like people have to arrange their lives around me. If M had a business meeting my mom would have to give up her day to come here and take care of me. I wanted to see how I did staying by myself. So, we decided that when M went to the grocery store I could stay home alone. I did very well. I felt up to the challenge of taking care of myself for longer periods of time. So when M had 3 business meetings scheduled Tuesday I stayed at home alone. But this time I actually did something – I did LAUNDRY!!!! I washed 3 loads of laundry over a 7 hour period. I would put some clothes in the washer and go rest for awhile and then when I felt up to it I would go put those in the dryer and start a new load in the washer. I knew that if I happened to wash some and then not feel like putting them in the dryer that M could do that when he got home. I was so very happy when M got home and I showed him that not only did I wash 3 loads of clothes – I hung them up and put them away! I felt productive. I felt like a help and not a burden. I felt GOOD! The only bad thing was that getting up and moving showed me that the past 2 years I’ve spent in bed have taken a serious toll on my body. I have no muscle strength at all! I know it will take time to get that back, but I did laundry and I was pretty amazed that I did it! That night I had some really bad muscles jerks and spasms, but it wasn’t a true seizure. I realized that if I was going to be up and moving I needed to get back on some Valium so my brain wouldn’t go on overload and start misfiring signals at the end of the day!<br /><br />Now we get to the part where I’ve been given an inch but want to take that mile. Wednesday I took the Valium and then changed the sheets on the bed and put the dirty ones in the wash. I then proceeded to take a shower and wash my hair. That’s really why I changed the sheets because after my shower I wanted to climb into a clean bed! I even washed the blanket on top of the bed! I didn’t move around as much that day and I did get tired much faster, but I felt good about what I had accomplished. The Valium did the trick and I didn’t have any seizure like muscle jerks that night – HOORAY!!! On Thursday I took my Valium and swept, well “Swiffered” actually, the bedroom floor. I eased into the hallway and by that point I realized I was pushing too hard and needed to get back in the bed.<br /><br />I did get back into my bed, but I was frustrated. I wanted to clean the floors in the whole house. I really wanted to clean the whole house. That’s my problem. For years I have battled with alternating “good days” where I could do lots of things to “bad days” when I would have to stay in bed unable to do anything really. Living like that caused me to really push myself on a “good day” because for all I knew the next day would be a “bad day” and I could be stuck in bed for a week. I noticed I was back in that mindset this week. I had to stop and tell myself that I physically could not handle my old routine. My body has been through so much over the past year or two. While I am seeing amazing progress, I have to force myself to take things slowly or I’ll make things worse! So Friday I stayed in bed. I really didn’t have a choice because my body wasn’t feeling like doing anything that day. Again I was frustrated. In my heart I want to go to the grocery store, I want to cook dinner, I want to clean the house. Simply put I want to be a good wife and take all of those burdens off my husband’s shoulders. I want to be productive.<br /><br />That’s when God got to me. He made me realize that I was making HUGE strides from where I was just two weeks ago but I wasn’t being truly thankful for them. He was answering my prayers and I was able to do things but instead of being thankful, you guessed it, I wanted MORE! God made me stop and realize that while I may not be able to take ALL of the burdens off of M’s shoulders, I did remove one of them. I did laundry. Then I did something I never thought I would do – I thanked God for laundry! I used to hate doing laundry and I complained, sometimes out loud and sometimes just in my head, any time I put a load in the washer. God showed me how grateful I should be to do laundry. Doing laundry requires some things we probably all take for granted. First, being physically able to complete the task is a blessing and I never thought about that until now. Second, most of us have washers and dryers that do the majority of the work themselves which is a blessing when you think of all the people in this world who don’t have such luxuries. Finally, doing laundry means we are blessed simply by having clothes to wash.<br /><br />I remember telling God that as I healed I didn’t want to take anything for granted anymore – even the little things. But, as I said, I am human and while I did thank God for having a couple of good days and feeling accomplished, I quickly got frustrated with not being able to do more. Now God has shown me just how amazing my week has been. I did laundry, I took a shower and washed my hair, I changed the bed sheets, I “swiffered”, and I was able to stay home by myself! Thank you dear Lord for giving me that strength! Glory be to God for the healing He is performing in my body! I’m tired today but I’m happy because this week I did laundry. Only God knows what my body will feel up to doing this coming week. He’s showing me how to appreciate what I can do and not worry about what I can’t do. This journey of healing is on His time table, not mine. Instead of being frustrated by that I should be comforted by it because I prayed for His will to be done and His ways are the best ways. He also made me see the fear I have about healing. You may be wondering what there is to fear about being healed. Well, I didn’t know myself until He made it clear to me. Basically I have been sick for so long that I don’t know how to live like a healthy person. I told M I had no idea what I would do when/if I got well. The doctors say that I need to take a year to allow my body to detox from all these drugs and to let my body rest from the beating it has taken during treatment. God made me realize I was getting ahead of myself. If I pray for His will to be done then I should not be worried or fearful about my future. I should rest in the knowledge that He will show me what to do as I forge ahead and He will lead me into the next phase of my life. I have no idea what His will entails, but it could very well be that it involves me feeling better than I ever have before. Wouldn’t that be amazing? No matter what though, He’s told me to be thankful for laundry. So, from now on, every time I load that washer I want to make sure I stop and thank God because He’s blessed me so much!<br /><br />Finally, I wanted to share the following excerpts from the book, “100 Days in the Secret Place” which were written in the late 1600s:<br /><br /><em><span style="color:#993399;">“Do not waster your suffering. Let suffering accomplish what God wants it to in your life. Never get so hard that you suffer for no reason and for no purpose. Paul says, ‘God loves a cheerful giver.’ How much He must love those who cheerfully give themselves to His dealings.” – Archbishop Francois de Fenelon</span></em><br /><br />I need to focus on cheerfully giving myself to God and what His will is for my life. Focusing on today and not pushing towards what I want for tomorrow.<br /><br /><em><span style="color:#993399;">“When you seek God’s will alone, you find it everywhere, and you cannot go astray. Wanting what God wants always puts you on a straight path. The future is not yet yours; it may never be. Live in the present moment. Tomorrow’s grace is not given to you today. The present moment is the only place where you can touch the eternal realm.” – Archbishop Francois de Fenelon<br /></span></em><br />And finally one simple verse that I should read every single day:<br /><br /><strong><em><span style="color:#ff0000;">“Give thanks in all circumstances for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16</span></em></strong><br /><br />Much love to you all –<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com3tag:blogger.com,1999:blog-6491588961853158395.post-24228248810349858222010-08-21T08:15:00.001-05:002010-08-28T13:11:11.241-05:00Walking without fainting...So far I’ve been tolerating the Gentamicin fairly well although getting back in the routine of twice daily treatments has been difficult. I had been questioning whether or not we made the right decision to go back on the IV antibiotics. Don’t you hate when you make a decision based on rational facts and then turn around and second guess yourself once you act on your decision? I usually don’t do that but the IV drugs make me question just about everything I think, say, or do. I know that M and I made this decision because we both felt God leading us to resume treatment so I hated feeling like I wasn’t trusting our decision. I think those thoughts were also mixed up with being scared of going back on treatment. Treatment is a catch 22 basically. When I stopped many of my symptoms returned or got worse. However, going back on antibiotics can also exacerbate symptoms. Then I also have to worry about side effects of the drugs as well as the ever dreaded “herx” reaction. For those who haven’t read much of this a Herxheimer reaction occurs when the antibiotics kill off a lot of bacteria at once which creates a build up of toxins in the body. Many people think a herx can only manifest physically causing headaches, muscle and joint pain, fevers, etc. When I was in Kansas City I found that it’s possible to also have mental or emotional herx reactions. These can cause of severe mood swings, horrible depression, anxiety, confusion, and even rage. Basically it doesn’t matter if you’re on treatment and killing bacteria or off treatment and dealing with recurring symptoms because all in all Lyme, Bartonella, Babesia and other co-infections suck the life out of you.<br /><br />There is good news to report and I’m so happy about that! Monday we had to go see the doctor and I felt like I needed to try to push myself to “be normal” by not wearing ear plugs or headphones. I brought them along just in case I needed them though. I also told M to park in the parking deck rather than use the hospital valet service because I wanted to try walking instead of using a wheelchair. I didn’t even feel very anxious about going. I wasn’t pushing M to leave 20 minutes early nor was I pacing around making sure I had everything I needed. I felt that was God giving me the courage to try and venture into the outside world. For the first time in over 10 months I walked outside without ear plugs and headphones. The noises were loud but I wasn’t ready to scream or have a seizure. I walked into the hospital and didn’t jump at the sound of people’s voices or even the beeps of the elevators. Notice I keep writing, “I walked” because that in itself was a major deal! We entered the doctor’s office and his nurse didn’t even recognize me! I still had on sunglasses to deal with the lights but for the first time the doctor and his staff saw me without a wheelchair, without headphones, and even without an oxygen tank! I was simply giddy about my progress! I now realize how bad things have been when going to the doctor’s office without the aid of a wheelchair, oxygen, or noise cancelling headphones makes me so excited! After the appointment M and I were smiling from ear to ear because these were such huge steps for me to take.<br /><br />I knew God was responsible for showing me such progress. I believe that even though I couldn’t tolerate the Vancomycin, it did kill off some bacteria and the small amount of Gentamicin in my system had helped as well. I started thinking about the possibility of having some kind of life again. I dreamed of getting out of this house and going places. M and I felt like we were seeing a small bit of light at the end of this long tunnel! That’s why the herx I started having on Wednesday brought me down so low. I had just seen progress and 48 hours later I was feeling so sick and unable to even control my emotions. I was crying and asking M repeatedly if I could just quit treatment. It’s so hard to wrap your brain around the concept of how making progress in killing off bacteria can make you feel so horrible. The emotional side of a herx is the worst part for me. I can handle feeling like crap but being unable to stop irrational thoughts, anxiety or anger is extremely frustrating for me and I know it has to be so very hard on M! By Thursday I was very depressed. I wanted to feel like leaving the house again. I wanted to catch a glimpse of “real life” again. I didn’t want to go back into the hole so to speak.<br /><br />Then yesterday I realized something. God didn’t allow me to have such a good experience on Monday just to cruelly strip it away from me a couple of days later. I believe He showed me progress on Monday so that I could see what I was fighting so hard for! Perhaps He knew I needed to make such strides in order to handle the next 2 to 3 months of IVs. I’ve been on IVs for 14 months now and I want to be off of them so much! I am simply dying to get this PICC line out of my arm as well! But I have to hold on and ride out the rest of this journey if I’m going to be able to function in the real world again. God is with me and I know He will pull me through the next few months. The doctor said I should stay on Gentamicin for as long as we see progress. I’ll take a break for a day or two after a few weeks and see how I feel then. I pray I’m able to do even more by then. Although being outside without headphones was a huge step, I want to be able to be out in the world and not be aware of every day noises. I made it through without headphones but I was very aware of every noise I head. God could be showing me that His plan for me might possibly include me feeling better than I ever have before. I pray that is the case.<br /><br />So, I write this as my IV bag drips away. I write this as I try to control my thoughts and cling to hope. I write this as I continue to be a huge “work in progress”. I write this as I feel such thankfulness for any and all improvements. I write this in awe of how God works in this world and how much He is working in me. This process has taught me so many things but one of the main things has been to never take anything for granted. I pray that as I improve and after I’m done with treatment that I don’t forget how lucky I am. I want to feel fortunate when I’m able to walk instead of using a wheelchair or when I’m able to hear everyday sounds and not immediately have a seizure. I want to remember what it was like to be stripped of everything so that I fully appreciate whatever I am able to do when I stop treatment. That’s a hard thing to do because I know just how easy it is to take things for granted. I know because even in my situation I am so human and don’t always thank God for what I do have. I may still be going through the hardest time of my life but God has still blessed me beyond measure! He has given me a loving family and good friends who pray for me every day. Not to mention I think I have the best husband on earth and feel extremely fortunate to be able to spend my life with him. We both feel as though we have gotten a good lesson in the meaning of the marriage vow to love each other “in sickness and in health”! And finally, I’m thankful for you. I am thankful for anyone who takes the time to read my rambling thoughts, who prays for me, and who lets me know they are with me in spirit as I go through all of this. Thank you from the bottom of my heart!<br /><br />Finally, one of the verses that I love so much and cling to throughout all of this:<br /><br /><strong><em><span style="color:#ff0000;">“Those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:31 (NRSV)</span></em></strong><br /><br />And I did just that on Monday – I walked and I did not faint. That, my friends, is no small miracle and I will not take it for granted!<br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com2tag:blogger.com,1999:blog-6491588961853158395.post-13133220207322419232010-08-11T09:52:00.000-05:002010-08-11T09:53:17.823-05:00And then there's Plan B...I wanted to write an update sooner but was not able to do so. I had a bad reaction to the Vancomycin every day that I tried to take it. When my lips and tongue started to swell we knew I had to stop the drug. This was so frustrating to me because I want to be able to get back into “treatment mode” and get these IVs over with sooner than later. For now I just have to use what has become the mantra in my house lately – “It is what it is.” There is nothing I can do about setbacks and getting upset won’t help anything so it was back to the drawing board to see what we would try next.<br /><br />We did our own research and the doctor did his and we came up with trying Gentamicin which is another antibiotic that fights Bartonella well, but it’s not in the same class of antibiotics as Vancomycin. We think it will be easier on my body but, as with all IV antibiotics, there are serious risks with it as well. When you are on these drugs, no matter which ones, you have to have weekly blood work done. I have a basic CBC (complete blood count) , a chemistry panel (tests levels of sodium, potassium, liver function, kidney function, etc.) and a test checking how quickly my blood clots to make sure I’m on the right dose of blood thinner. Now that I’m on Gentamicin I will also have a weekly test to check the levels of the drug in my body and I THINK this is due to the fact that it can cause kidney problems, but I’m not sure. Treatment is hard because it’s a very fine line between taking enough drugs to kill the bacteria but not so much that you overload your body and cause damage. It is definitely a balance of risks versus rewards. I started the Gentamicin on Monday and started with one dose a day until today. I’m taking my morning dose as I type this and in 10 hours I will take my second dose. We’re praying all goes well as I start into my new drug and new routine.<br /><br />My body is tired. No, my body is actually exhausted. I’ve been hitting it hard with all of these drugs and it’s just worn out. I wish I could rest more but sleep eludes me. My central nervous system is so overloaded and out of whack that my brain simply won’t allow me to rest properly. I’m still fighting off seizures and I have excrutiating nerve pain that feels like an electric current is running through my body. I’m tired of this fight but I know it will be worth it if it leads to my healing. I won’t know how much permanent damage has been done to my brain, heart, nerves, etc. until I’m off of treatment and even then it can take up to a year for my body to recover. I may see a lot of improvement in the first few months after stopping treatment, but I will have to wait for a year to see what all treatment has done for me or done to me. My prayer is that I can handle this new IV antibiotic for 8 to 10 weeks then switch to IV fluids for 6 weeks and hopefully see enough progress to finally get my PICC line pulled and switch to oral medications.<br /><br />I know God is with me all the time. I know that He is aware of every ache and pain in my body just as well as He knows my heart. I try to focus on that fact. I try to see all of this immense pain that I go through as part of a much bigger plan. I want all of this to make me a better person. But, at the same time, I’ve been crying out to God a lot. I’ve been trying to put my foot down and tell Him that I just cannot take anymore. It’s humorous that I try and “put my foot down” with God isn’t it? People have told me that reading about all that I’m going through and seeing me cling to God during this time has reached them. They say it’s made them see how to get through their own struggles. I am aware though that if people draw closer to God because of what I write, well, it’s because of God not because of me. When people tell me these things it humbles me. It humbles me to think that God is using my life to reach others. I do admit that there are many days when I’m going through the pain that I ask God, “Are you sure there isn’t another way for me to reach these people? Is it a requirement that I go through this to do so?” and I also say, “God, I know it’s selfish, but I’m beginning to not care about reaching others. Can’t you just heal me now and let me tell people about the awful years I endured and how You were the single reason I got through it all?” I feel so bad about that. If God is using me in ANY way shouldn’t I feel honored?<br /><br />I wish that I could handle these trials like Job handled his or like Paul handled his. Paul talks about how he is content NO MATTER the circumstances because he can do everything through God who gives him strength (Philippians 4:11-13). He wrote that while he was chained in a jail cell for teaching people about God and how His son, Jesus, walked the earth and then died for our sins. He was in JAIL because he was trying to reach out to people and was willing to risk his life to spread the gospel. We have never known what it would be like to be persecuted for our faith because we live in a country where everyone is free to practice whatever religion they believe in. What’s sad is that even though we don’t have to risk anything to tell people about Jesus most of us don’t do it very often. I lump myself in with that group because before all of this happened, I had a relationship with God but was never sure how to talk to others about Him. I praise Him more when I write this than I did before. I realize that I praise Him more BECAUSE of what I’ve been through and what I continue to go through. Hmmm, I may have just answered my own questions. I simply don’t praise God enough for the good things in my life while often blaming Him for the bad things. I should simply be thankful that while I may be going through a lot, He has yet to give me more than I can bear. There have been a couple of times lately where I’ve been in a lot of pain and have cried out to Him, “God I cannot handle this pain on top of everything else. Please take this from me!” and right away one of my pains will ease. I’m not miraculously healed completely, but He definitely lifts whatever my current burden is and I feel Him lift it from me.<br /><br />I feel like God has plans for my healing. Honestly I feel that it won’t be long until I do see some major improvements. Maybe a few months but that’s not long at all compared to how long I’ve been suffering. I do believe He has good things planned for me. I’ve said many times before that God reaches me the most through my writing. It’s when I write that He shows me things. So I guess even my entries on here serve to help me just as much as, or perhaps even more, than they might help or reach any of you reading them. When I start to write my updates I often think, “I’m just going to write about what’s going on physically and not put the pressure on myself to write about God.” What’s funny is that those are the entries that end up getting the most responses. That’s when I know it’s God that worked through me and that reaching those people was definitely not my own doing. I’m starting to see now that while what I’m going through may be very hard, I’m not stuck going through it alone. God is the one who lifts me up and sees me through. No matter how bad things may get in my life, or in your life, if we call on God to see us through, He will do so every time.<br /><br /><strong><em><span style="color:#ff0000;">“Do not fear, for I have redeemed you; I have called you by name; you are mine.” Isaiah 43:1 (NRSV)<br /><br />“The Lord will be your everlasting light, and your days of sorrow will end.” Isaiah 60:20 (NIV)</span></em></strong><br /><br />Again I thank you for your continued prayers and support. In fact, I can’t thank you enough.<br /><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com0tag:blogger.com,1999:blog-6491588961853158395.post-66639391363949505502010-08-01T16:08:00.000-05:002010-08-01T16:09:40.892-05:00Pushing on and going forward...So we’ve got a new treatment plan. My symptoms flared while I was off the IV antibiotics. We knew that I needed to get back on them but we weren’t sure which one would work best for me. During this time God led me to talk to M about our being more active in creating a treatment regimen for me. We both started to research more and more about Lyme, Bartonella, Babesia, and other co-infections. While my doctor in Kansas City thought the Babesia was the likely culprit of my seizures, our research pointed us in a different direction. Lyme and Bartonella both attack the brain. They wreak havoc on the central and peripheral nervous systems. Bartonella in particular can cause seizures. This made more sense to us because my seizures never went away when I was treating the Babesia. We ordered a book that included treatment plans of 13 Lyme literate physicians. They discussed everything from proper antibiotic treatments to supplements to diet plans. We began to see a pattern in their treatment protocols. Then I told M we should really look into the treatment protocol of Dr. Burrascano who is considered one of the 3 pioneers in research of these diseases. He helped found the International Lyme and Associated Diseases Society. He’s also the author of the group’s treatment guidelines which he first wrote in 1984 and has updated 16 times to include the latest research findings. M and I both poured ourselves into research. Through Dr. Burrascano’s guidelines we found the two antibiotics he prefers to use in treating Bartonella but I’ve had serious side effects on one of them and the other is an antibiotic I had a slight allergic reaction to the oral form so we didn’t want to chance that with the IV form. We then went back to the drawing board and found that he uses Vancomycin when other IV antibiotics can’t be used. Vancomycin is a great antibiotic to fight infections but has a high level of toxicity and therefore is a “last resort” for some patients. We decided that it would be the best drug for me to use and in order to keep the level of toxins down we planned to do “pulse therapy”. Pulse therapy is when you do IV antibiotics for 4 days of the week and then IV fluids for the remaining 3 days to help rid the body of toxins. We had discussed with my doctor that we wanted to research some treatment options and then discuss them with him to hear his thoughts. He talked with M at length and agreed that while Vancomycin does have risks, my situation warrants taking those risks.<br /><br />Having the antibiotic plan down we then researched supplements and diet plans that other Lyme doctors use. I’m now taking a Vitamin B complex, Vitamin D, and Vitamin K. I’m also taking an Iron plus protein pill to help keep my red blood cell count up. I take Iodoral to help my thyroid and Curcumin to help with cognition, memory, and to help inflammation. Then there’s an Omega 3 combination pill to help with heart health and inflammation. Finally, there are 2 different herbal drops taken orally which help the body get rid of neurotoxins. A buildup of neurotoxins can cause seizures so the drops are especially important. As for the diet, well, it stinks as most diet plans do I guess. However, it’s been proven that patients who are strict about taking their supplements and following the diet plan along with the antibiotic therapy have much more success at regaining their health and they do it at a faster rate so I’m trying my best. The diet is yeast free, glueten free (free of wheat), and free of refined sugars and corn syrups – which basically leaves me with meat, chicken, eggs, vegetables and a few fruits! The problem comes from my body being so out of whack with all of the diseases that I actually gag and have to force myself to eat those things. I can hardly stand red meat anymore and chicken isn’t great either. I love vegetables and fruit but they don’t fill you up. I was on a yeast free diet for a year before going to Kansas City and I was very strict about it but I was also able to go to Whole Foods and find a lot of the items I could eat and I was cooking the meals. Since I can’t do those things anymore poor M ends up having to do it all. My mom will cook whatever we ask her to but most of the dishes are best served freshly cooked and we don’t want her having to come over every night and cook dinner for us! We’re going to find a way to do all of this the best we can.<br /><br />I started the Vancomycin this past Monday and did great on it until the end. I ended up turning red from the chest up. I was flushed, looked like I had a sunburn, and my lips and cheeks were numb. It’s a side effect only seen in patients taking Vancomycin and they call it “Red Man Syndrome”. It can be controlled with IV Benadryl, which I had taken at the beginning of treatment and again halfway through. I was worried that this side effect would mean the doctor would take me off of Vancomycin. I told M that 47% of people who use the drug have this side effect and sometimes it only occurs with the first dose. The doctor agreed I could stay on the drug but that I should only do one treatment daily for the first week and then try our plan of twice daily treatments. I didn’t have the reaction again so I will start the twice daily treatments on Monday. The drug has to be given 12 hours apart so that means I’ll be taking it from 6-9 a.m and 6-9 p.m. Those aren’t my ideal times, but we have to do what we have to do. Our motto for the past year has been, “It is what it is.” and it’s true once again.<br /><br />God has been with me in so many ways over the past few weeks. I know He is always with me, but there are times when His presence is so overwhelming that you simply can’t mistake it for anything else. I want to write more about the things He’s done and the things He is doing in my life but haven’t yet found a way to describe it all. I pray that He will help me find the words to share it all in the coming week. The hard thing about going back on the antibiotics is that the drugs make it difficult for me to think and write very well. I’m hoping that doing twice daily fluids Fridays through Sundays will help me to feel well enough to keep writing. God will allow me to write when He’s ready for me to do so. I just get impatient about sharing what He’s doing but He’s the one who leads me in what to say. Since I can’t find the words yet I think He’s telling me to wait. I can say that some of my symptoms are already going away with just 4 days of antibiotic therapy. That’s good news but as I start twice daily treatments I will likely deal with a lot of side effects from killing off the bacteria. I’ve said before that this treatment is somewhat like chemotherapy in that you feel horrible when you’re on treatment but you go through it to feel better. I even had a woman comment on one of my posts who had been through chemo and she said my treatment sounded a lot like what she went through and she was sweet enough to say she would be praying for me. It’s a weird treatment because while some of my symptoms flare when I’m off the antibiotics others will flare when I’m on antibiotics. Once again, it is what it is.<br /><br />I want to thank everyone for their support and prayers as I go into my 14th month of treatment. I knew this wouldn’t be a “quick fix” and that it would likely take 2-3 years to “get my life back” but I had no idea how hard it would be. I didn’t mind the time frame but I was ignorant of how that time would be spent and what physical trials awaited me! I want to also say that M and I know that God led us to the proper research materials and gave us the wisdom to come up with a treatment protocol we believe to be best for me. We know without His help none of this would be possible. These aren’t easy times but we feel that God is working in our lives more now than ever before. We know that He has a plan for us and we believe that plan includes my healing. Things are difficult for both of us but we trust in God’s plan for our lives and pray only that His will be done in our lives. That’s the best any of us can do isn’t it? Just to trust God, humble ourselves before Him, and pray that His will always be done in our lives. Again, thank you all for your prayers because we truly think they are what hold us together some days!<br /><br />Here are a few verses that I’ve seen on my calendar and felt were very fitting for my situation:<br /><br /><strong><em><span style="color:#ff0000;">“I lift my eyes up to the hills – from where will my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2 (NRSV)<br /><br />“He will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21 (NIV)<br /><br />“For he will command his angels concerning you to guard you in all your ways.” Psalm 91:11 (NIV)<br /></span></em></strong><br />Much love-<br />KKhttp://www.blogger.com/profile/17669570708270588765noreply@blogger.com2