Saturday, December 17, 2016

Just because I'm used to it doesn't mean it hurts any less...

I haven't written a post since August...That's the longest I have gone without writing a blog post in a long time. I keep telling myself that I just haven't had the time with my first semester of college starting, (I had my last exam of the semester a few days ago.) but the truth is I have been all over the place emotionally. I have been trying to find some normalcy within all of these new symptoms and frustrations that have come about since the middle of August. My new symptoms coincide with the start of my freshman year of college and the many changes in my life over the last few months have become overwhelming, to say the least. I have been trying to make sense of it all to describe exactly how it feels... So here it goes:

Just because I'm used to it doesn't mean it hurts any less... - Unknown

November 16th, 2012. Four years (and one month) have passed since I had a feeding tube shoved up my nose for the very first time. I've spent the last four years of my life fighting a civil war, in which I will never be able to win. As the 1,490 days have piled on so have the diagnoses or battles in the war. Who knew something we thought was so simple could be so much more. To this day I still question how I got here. I didn't expect things to get this bad, but I don't think anyone can imagine "this bad." Most humans don't believe the worst would ever happen to them. I certainly didn't imagine being an 18-year-old who is fighting for her most basic human right: the right to her life. I was supposed to get better, but I never did and I can't tell you how upsetting that has been for me.
Oh yeah, I got a tattoo in October.

Many believe that because I've been through these symptoms and treatments once, twice or even a hundred times before that it for some reason makes it okay. They think it is okay because I have gotten used to the worst and that I am now able to handle the struggles in my life. However, I think that's the worst part about it all. The fact that I've had to get used to the unimaginable is what's wrong with the situation. How on earth is it okay for someone to repeatedly spend so much time suffering, while there are very few people who care enough to do something about it? I don't understand it.

All I know is one morning I woke up thinking I had gotten a virus or infection and thought I would be better in twenty-four hours, but I never got better. The pain and sickness never went away.  I have come to find my new normal and how to cope with the pain. I have learned to adapt to the life of a teenager with a chronic illness, but keeping up with everything that role demands is exhausting. There are countless medications I must remember to take, I prepare and begin IV nutrition and IV fluids nightly, and I must take the time to get extra sleep to help my body recover from everyday tasks most normal people wouldn't consider being high energy tasks, but to me feels like a marathon. The pain is still here and it is still just as hard to deal with it today as it was to deal with it on the very first day my symptoms came about. Yes, I may have been through these situations a million times before but they still hurt and it doesn't get easier. Often times, I feel like maybe it is even worse. I'm exhausted, I haven't had a day without feeling sick in more than five years.  I have knowledge of what's coming, how much it hurts, how I felt last time this situation happened and how I know I never want to feel that way again. This knowledge makes me dread going through treatments once a month and dread the symptoms I get when my body starts to crash again. I have to push through because if I don't then I don't get to see all of the beautiful things in life and I won't get to accomplish all of the goals I have set for myself.

Over the years there have been up and downs. I have gotten better and then I got worse again and each time I get worse that is the biggest blow yet. I had hope; Hope that maybe I was actually getting better for once. However, each time I got worse again and again and again... That hope of getting better has been repeatedly taken away from me. I thought I was getting better...But as it turns out that was far from the truth. I often wish that the times I did get better never happened. I wish that I had never gotten my hopes up to let them fall again because all that means is that I have to relive the nightmare of getting sick over and over again.

I've modified my life each time a blow to my health has come along. I've found what works better and that makes each day just a little bit more survivable, yet that doesn't mean it's not as hard as it once was. Often times, it seems as though I expect things to go wrong. Those things don't surprise me anymore, I always know they are coming just not exactly when they will hit. As I said, I never expected things would get this bad and each time things started to go right I have held out hope thinking I was going to get better until another blow would come along. It's sad to think that I now have to expect something to go wrong in order to better prepare myself for what is ahead.


Here's the updates:


Since August there were one too many blows that I didn't expect. First, it started out with a freak reaction to IV Venofer (IV iron) two weeks before my first semester of college started. This caused fluid retention that no one knows how exactly it occurred but even four months later it is still causing problems and I am unable to get my IV nutrition because I can't receive large amounts of fluid without having retention issues. This means I've had to try to increase my ability to eat orally and that was working out at first. I was doing okay for a while minus the increase of nausea and symptoms related to my Dysautonomia due to the lack of fluids.

The next blow came in the middle of October. Over my fall break, we had a wonderful weekend at the Mitochondrial Disease walk in Charlotte, North Carolina. It was our first year driving up to the walk and we had such a great time! That was on Saturday. Monday I woke up with a rash on my leg. Turns out I had shingles. That was not a fun experience. I was on oral antibiotics for two weeks and IV antivirals for two and a half weeks. For those who don't know antibiotics often slow down gut motility (How well the digestive tract functions.) As we all know my gut function is quite limited so this put a huge damper on the trying to eat all my needed calories orally (or by jejunal tube feeds) side of things. Although, the shingles went away all of the drugs combined with not getting any nutrition made me feel absolutely miserable. I didn't even have a week to recover before my body decided to take an even steeper decline...
Charlotte Mito Walk 2016

The day before Halloween like any other Sunday, meaning it is port access day for me. My port was a double lumen port that was only placed back in April after my last central line broke. We were successfully able to access one side, but we were unable to get the other so we decided we would wait until Tuesday night to try again. I had a visit at the cancer center the next morning and it saves time and is much easier if I have both sides accessed before we get there. Well, Tuesday night(November 1st) certainly didn't go as we had planned. After we had finished trying to get my port accessed I became pretty sick. I couldn't stop shaking, I was freezing cold but I already had a low-grade fever, low blood pressure, fast heart rate, I developed a massive migraine and I couldn't stop puking. I hadn't been able to run fluids in several days so I thought I would try that in combination with all my other IV rescue meds. I was able to get a few hours of sleep before waking up still feeling miserable. I made it back to bed and was able to ride it out till my appointment.

Upon arriving at Hem/Onc I had a fever over 101 and was taken back to isolation. I was so sick and knew something was wrong. I was admitted to the hospital. That was the 2nd of November. Turns out I was in septic shock. Cultures grew in less than twenty-four hours. Which is extremely bad because it typically takes 36-72 hours for cultures to grow bacteria. One of the amazing ICU nurses from the PICC team came by to deaccess and then reaccess my port. The insertion points from where my needles had been leaking pus. She refused to reaccess, (this was the right call) which was probably the best thing. They were able to start an IV and I went back downhill again. Things started moving pretty fast and the doctors came in and said they thought I would need my port removed. Which I already knew my port would have to come out, they didn't have to tell me. I was happy that they made that decision early because if not I would have been in the hospital for several extra days. Thereafter, they got me in for emergency surgery to get my port out. When the surgeon pulled my port there had apparently been a lot of pus and infection surrounding my line that they had to scrape out. They had to leave the incision open to let all the infection get out and it was quite painful. The meds they gave me ended up causing all my labs to be off and caused my blood numbers to drop to half of what's normal. So I got two units of blood (Inserts shameless plug to tell you to donate blood because less than 7% of the world donates blood and if you ask me something is wrong with that!) After that is when things started to turn around for me! By Monday my blood cultures had been negative for over 72 hours and I was able to go into surgery again to get a new central line placed.

I was discharged Tuesday and was able to vote for the first time that same day! We stopped on the way home from the hospital. I was on antibiotics for two and a half weeks following my hospital stay and these antibiotics also made me very sick. Even more so than the meds I was given in October. I got better for a little while but things haven't been the same since and eating is only continuing to get harder. I haven't had anything substantial to eat since Sunday. It's very frustrating and I feel miserable. All I want is to finally get better but these blows just keep on coming. I know I can make it through all this because I have in the past, but it's still difficult being down in the trenches even if you feel like you know what is ahead. I'm used to feeling miserable all the time, but each day I wake up feeling miserable is another day spent in pain when all I wish is to be feeling something so much more.

School wise things are going great! I've made some wonderful friends over this last semester! I was able to get caught up in all my classes fairly quickly from while I was in the hospital and I ended the semester with great grades. I got a 97 on my biology final and I was super happy about that. I am very happy that finals week is over and I can now relax and enjoy this break over Christmas. There's only a week till Christmas Eve and I am so ready for all of the festivities to begin! We will be flying to see our Dad in Iowa the day after Christmas so we will be in the midst of the holiday travel! We hope for smooth travel days and snow because living in the south we don't get to experience that very often.

4 comments:

  1. Sending you love as you travel your journey. I understand the idea of waking up hoping things will be better that day only to transition to making it through the day & waiting for when it's time to fall asleep because maybe tomorrow will be better. The fact that waking up the next day can actually cause a new normal, that life can literally shift in a day is mind boggling yet that's how mito seems to play its hand. Have you switched IV irons since your reaction to to the Venofir? I have had 2 anaphylactic reactions to it which caused them to switch me to FerraHeme (sp?) which takes a lot less time to go in surprisingly. (I had to double the time on the Venofir so it would take me 4 hrs to infus & 8 hrs to handle the symptoms so I could actually go home). My Dr had never had a patient react to the FerraHeme (she has now) but after the first time having an anaphylactic reaction, we now do 125 solumedrol (I know not all w/ mito can do this; I also have adrenal insufficiency so I'm lucky I can) as well as 50 benedryl then we double infusion time (40 mins vs 20). I still have to take done benedryl at home for the bext couple days but no major reaction this time; a victory in my world. Sending you love as you navigate these uncharted waters & prayers that your trip to IA is uneventful medically. I think you will definitely get your wish for seeing snow lol! I'm in MI & we have been in the cold snap that has been blanketing the north for most of the last 2 weeks. I can't complain though as we have had such beautiful weather up until now & the snow itself brings its own form of beauty. Wishing you & your brother a very merry Christmas & a happy (& stable!) New Years.
    Katie

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  2. Hi. I dont even know you. But i do read your post. So yeah im malaysian :) . I wish you speedy recovery girl. If you dont mind, i wanna be your friend. My first ever foreign friend. Do reply me if you read this later.

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