Monday, April 28, 2014

Things I wish I could say...

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 :)

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.
Day 1

Day 15

Day 30 (the last one I took)

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.

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.

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.

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.

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.

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. 

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. 

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.

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.

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.

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.

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.

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'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.

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.

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.

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 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.

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 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:

"I am free forever from any condemnation
and I know that all things work together for good
and absolutely nothing can seperate me from the love of God
and I have been established, anoited, and sealed by God, hidden with Christ, and I am
unshakeably confident that the good work God has begun in me will be perfected, that I have not
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 ---
I am born of God, and the evil one cannot touch me!
(Romans 8:1-2, Romans 8:31-34, Romans 8:28, Romans 8:35-39, 2 Corinthians 1:21-22,
Colossians 3:3, Philippians 1:6, 2 Timothy 1:7, Hebrews 4:16, 1 John 5:18)"

"The bottom line, Lie-Crushing Truth is simply this:
(*note here that her entry was refering to crushing lies we believe that come from Satan)
I am loved ... because I am chosen by Jesus
I am known ... because I am named by Jesus
I am fearless ... because I am safe in Jesus
I am brave ... because I am always with Jesus." - Ann Voskamp

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.

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: 

"And our God is not a God to merely believe, but to experience,
not to only believe in, but be held by.
A God who not only breaks for you but breaks with you,
a God to not only have creeds about, but to have communion with,
a God who not only dies for you, but who cries for you,
the God who touches you and binds you and blesses you and heals you
and re-members you because He let Himself be dismembered
and He is the God we not only believe in - but we know.
We know - know beyond a shadow of doubt, death or despair.

He has touched our tears. He has cupped our broken hearts with His scars. He has whispered to the howl, "I know, I know. And I've come to begin the making of all things new." We believe. Because we know. He knows our grief. We know His goodness. And the truth is - we don't need an explanation from God like we need an experience of God."

(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:)

"And that is exactly what we get.

We get that experience of God when He stretches open His arms on that Cross and cries.

'For you. For all your regrets and for all your impossibles,
for all that will never be and for all that once was,
for all that you can't make right and for all that you got wrong,
for your Judas failures and your Peter denials and your Lazarus griefs,
I offer to take the nails, the sharp edge of everything, and offer you myself because I want you,
to take you,
you in your wild grief,
you in your anger and your disappointment and your wounds and your not-yet-there
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.'

The thanks, the yes- it could come like sweet relief.

The broken hearts - they could re-member.

The lament - it could be absorbed in love." - Ann Voskamp

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 I couldn't recommend a better one to read.

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 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.

Much love to you all!  Thanks so much for the love and prayers!

Tuesday, January 21, 2014

Anxiety that abounds

My 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.

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!

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 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.

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.

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.

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.

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.

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.

Thursday, January 9, 2014

What to do when your life slides backwards...

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.

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.

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.

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.

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.

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.

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.

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!

"I can do everything through Him who gives me strength." Philippians 4:13 (NIV)

Thursday, July 14, 2011

Beyond 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!

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!

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!

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!

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!

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.

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!!!

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!

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!

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 . 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.

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!!!

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!

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!

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:

“Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!” 2 Corinthians 5:17

"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

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18

"The Lord is faithful in all His words, and gracious in all His deeds" Psalm 145:13

"The Lord will guide you continually, and satisfy your needs in parched places, and make your bones strong." Isaiah 58:11 (NRSV)

“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)

“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

And last but not least…

"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

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!

Much love to you all-

Sunday, July 10, 2011

Computer 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!

Much love-

Friday, May 20, 2011

A 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.

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.

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!

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!

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.

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:
"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."

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!

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!

"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)

"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)

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 :)

Much love-

Tuesday, April 12, 2011

Yes, 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!

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.

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.

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.

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!

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.

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.

“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)

Much love-