*Originally published 12/9/16*
This year has been pretty bad all around. I started 2016 off with a new picc line and had just withdrawn from Salisbury.
I had about 2 weeks in July when I felt as though I could possibly be reaching remission, then everything went downhill. This is around the time I started getting chest pain and having a lot of trouble breathing. After 2 Saturdays in a row at the ER and a horrible picc insertion we found out I had a blood clot in my left lung-not your usual 18 year old’s final days of summer. Finally, I got the picc taken out,, but after 8 months with it I didn’t feel any better, in fact, I felt worse. This experience was so disheartening. When I had my picc line in 2015, it was a quick fix. After about a month on it I felt miraculously better and I was expecting that to happen this time, but it never did.
Amidst all the blood clot drama, I had signed up to take 2 classes at my community college so needless to say, I was freaking out that I would not be able to go back to school. I made it through the semester though, but not without trouble. About halfway through the semester we thought I might have to withdraw again as I was having horrible brain issues; I was having trouble getting my eyes to focus, remembering things, and just all cognitive issues in general. I missed quite a few classes, but luckily my teachers were very understanding and I was able to catch up in no time.
On a side not- the cognitive issues dissipated for a few weeks but now have come back in full swing so I apologize if there are a lot of errors in this post.
At the end of December 2015, I had my first bought of paralysis. Then in February of 2016, I had it again and I have had it at least once a month, and sometimes even once or twice a week. Not being able to move your body is terrifying. At times I could not even talk because I couldn’t open my mouth. It’s horrible having to rely on others to help you all the time; I’m so thankful for my amazing family who takes such great care of me. There were times when I couldn’t hold my own head up, go to the bathroom by myself, drink without assistance or even get the hair out of my face because I could not move. So when the ER doctors told me it was all in my head a few months ago, I was furious.
You are supposed to be able to trust your own body, yet I cannot. If you can’t trust your own body who are you supposed to trust? Doctors. Well what are you supposed to do when you can’t trust your body and the doctors think you’re crazy? You cry. You cry a lot.
Every time I go to the doctors I leave hopeful that we have a good plan, and every time I am left disappointed and still sick. When I came off the IV, we stopped antibiotics for a while and focused on getting my immune system built up more. Well when I had to stop driving three times in a five minute span because I forgot where I was going, we had to go back on antibiotics. Then we got blood work back, and somehow I now have 3 more co-infections.
We don’t know why they have all of a sudden shown up but that means a whole new set of symptoms I can get-just what I wanted for Christmas.
If you ask me if I am feeling better I will say no, however my mom will say yes. She says “well you don’t have (insert symptom here) anymore,” and I respond with “Well now I have (insert new symptom here).” That is part of the vicious cycle of Lyme Disease. One thing goes away, but another takes its place. I may not have tremors every day, but I have chest pain. I was going to continue with symptoms that are gone and new ones that took its place, but I honestly can’t think of any. I have extreme fatigue, insomnia, eye pain, cognitive issues, chest pain, air hunger, muscle pain, numbness and tingling, headaches, hot flashes, flushing, extreme nausea, stomach pain, all around pain, trouble breathing, ear pain, sensitivity to light, and some more that I can’t think of right now (see cognitive issues). I have zero appetite but I have to eat with my medicines, but when I eat my stomach hurts more and I get even more nauseous-vicious cycle.
I feel horrible all of the time. 2016 has been rough but hopefully it can only go up from here.
This year has been hard, but it has taught me a lot. At the beginning of the semester my advisor asked “where do you see yourself in 5 years?” and that really stumped me. If you would have asked me 5 years ago where would I be in 10 years, I would have said “out of college, engaged, living in DC with a great job and a few dogs,” now my answer is “hopefully with a degree.” 2016 has made me come to terms with the fact that my life is not going to go as I had planned and I have to accept that. I have watched 432 episodes of many different TV shows on Netflix this year. I also taught myself to crochet- basically I’m a 90 year old arthritic grandmother. But this is how my life is now. It is not the life I want by any means, but it’s what I got. No one should have to settle for their life.
I will be turning 19 in a few weeks, which means that next year will be my 5th year living with this disease. If I’m still sick this time next year, that means I only lived one year of my teens not suffering from this disease; that’s unacceptable. We need a cure. We need to be able to give people their lives back. We need to stop people from living in constant fear.
I’m afraid. I’m afraid that I will never get better. I’m afraid that people have forgotten/will forget about me. I’m afraid I will never be able to graduate college. I’m afraid that I will never get my dream life. I’m scared that my nephew will know me as his “sick aunt.” I’m afraid that I have missed out on so many great experiences of my adolescence and I will never be able to get them back. I’m afraid for my nephew to play outside because, god forbid, he gets bitten by a tick and suffer like this. I’m afraid to ever have children and pass this burden into them. But what I’m most afraid of is getting into remission and fearing the Lyme coming back at any moment.
No one should live this way. We must find a cure.
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