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 trip...it's just that life is busy. I truly respect all my friends who are moms and are stretched thin and I know our friendships don't change because we can't talk as often or see each other. I know it doesn't mean they love or think of me any less.
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 bed...it really blows my mind! I just think, "Wow! They took a shower AND left the house in the same day?" I cannot even comprehend all the other stuff they accomplished. To me normal is not leaving the house for months at a time except for doctor appointments. I know it is odd to write this, but I guess after years of dealing with my reality, my life seems normal to me. I know if I felt well then you could not keep me in this house! But, being sick and exhausted, when I think of all that my friends accomplish I am truly amazed! I mean, I haven't even been able to drive my car since July and that doesn't seem odd to me anymore. I guess because I went 2 years last time without driving and I'm not feeling up to leaving the house anyway. I will say that I do miss driving because sometimes when I want to go buy something, I realize I can't and I have to ask my husband or my mom to do it. I know it would make me feel like so much less of a burden if I could run a simple errand or make a quick trip to the grocery store.
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 www.aholyexperience.com 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 www.aholyexperience.com 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 us...how unworthy I feel of that kind of sacrifice! But, it reminds me that I don't serve a God who doesn't understand suffering...HE DOES! He just has His own plan for my life and I simply have to have faith and know that His plan is always the best plan, even if I am seeing only small, tiny, bits and pieces of it. He sees it all come together and He knows what is best for my life because He gave me that life - and I will love it day by day and refuse to hate it even when the toughest times hit. So, while I can't always control how my brain works, or what emotions it throws my way, I can cling to God and get through it. I needed to share what I go through because it was only as I listed what I wished I could say about my life that I realized how much those feelings were controling my view of my life. My life is no less important just because I am stuck in the bed. In fact, I know from my past experience of treatment and confinement, that all of this time alone has changed me for the better. I know it has made me see things differently and I know that if my life had gone the way I had planned I would be a different person - likely one who was more materialistic, less empathetic, and I would definitely not have the relationship with God that I have now. I have an amazing marriage and I wonder if life were different, if I would have ever been able to see and appreciate my husband the way I do now. So, a big thanks to Ann Voskamp for letting God guide her words and for God to steer me towards them just as I needed to read them the most.
Much love to you all! Thanks so much for the love and prayers!
K
