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23 May 2015

Honesty: Life with a chronic illness

Hello friends and happy Saturday.
I hope this post finds you well.
I've blogged pretty much every day this week, which I think is a record for me, especially over the course of the last couple of months.
I've been playing around with this post in my head for a little while and I've briefly covered some of these points previously, but I wanted to share a better picture for my readers, and even for myself. There are times that I start writing a post with a basic idea in my head and it just grows into a life of it's own after that. We'll see where this post leads us, shall we? Please forgive me for how long this post is.
I've spent the last couple of years feeling like crap in some form or another. It started in 10th grade and has kind of beena roller coaster ride since then. I was sitting in a car for about 6 hours one day on my way to a camp for NJROTC when we stopped for some gas and some snacks. I went to get out of the car and suddenly found myself flat on my face. My left knee had popped and completely given out from under me and felt like it was on fire. We didn't know what was going on, but being the person that I was, decided to continue on with the short camp (I think it was like 2 weeks long). The staff was nice enough to go buy me a knee brace and make sure I had some ibeprofen when I needed it, because the pain didn't get any better from there. I wore a knee brace one and off throughout the rest of high school but I never thought much of it. Kids get hurt in high school all the time, right?

When I was 16, I was told that I suffered from anxiety attacks. It was blamed on the relationship that I was at the time and they told me that the cartilage that holds  my ribs and my breast bone together was irritated and when I stressed out it would tighten significantly, making it feel like I was being stabbed in the center of my chest, I couldn't stop coughing, and I had a hard time breathing. I found out recently that there is a name for it that I never knew before which is Tietze syndrome. This year seems to be the year of me finding names for chronic pain problems.
Then in 2010 during basic training, my knee pain got much worse and much more constant. I went to doctors on and off again every couple of weeks to ever couple of months trying to figure out what was going on. Running hurt worse then I ever remember it hurting, carrying all of my gear during deployment hurt worse then I thought it should of, and the pain was constant, with little reprieve. After a while, since there was no physical abnormality, my X-Rays and MRI's were normal, they pretty much told me that it was all in my head. They put me on a permanent profile in 2012 after our deployment that let me do things to my tolerence, but still nothing really helped. I think they only did it because I wouldn't leave it alone. Why would I? I just wanted answers. I am young, only 23 years old this year, and deal with more pain then most people twice my age.

I had been going to physical therapy for my knee and my hip since December of 2010 with little success. They originally blamed it on the fact that my left knee was weak. I just didn't understand because I had been so active as a child. I played soccer growing up, spent a year in Tae Kwon Do, had been swimming since 3rd grade, ran in ROTC and Cross Country, and I would go on 20+ mile bike rides with someone my mom used to work with on Saturdays. Basic training can be especially rough on females, all the running and ruck marching can do some damage.
In 2013 I was also diagnosed with Gastroesophogeal Reflux Disease (GERD) which is like acid reflux with a vengence. Once again I was experiencing something and had no explination, it occured out of the blue! It started with me just feeling really nauseous and it just kept getting worse. I would spend hours laying on the bathroom floor wondering if I was going to be sick or not without knowing what was causing it. Heart palpitations and raise in my body temperature would come with each episode and it was miserable. Let me just tell you how much I hate blood tests! Once this started in June of 2013, I have had more blood tests then I have ever had in my life. Finally I was told it was GERD and given some crappy medication that didn't help a whole lot.

Finally in March of this year I was sent to an Orthopedic specialist, who after running some tests, said that I may need to be sent to someone else because this might be something that was out of his realm of experties. He said it could be a nuerological disorder or something like fibromyalgia. So my Flight doc sent me to a Rhuematologist, which after asking me a bunch of seemingly random questions about my history and where I felt pain, gave me the diagnosis of Fibromyalgia... but first there were more blood tests. For those that don't know what that is like I didn't, it's a chronic pain illness on both sides of your body without any physical abnormailites. Other sysmptioms are iritable bowel issues, anxiety, depression, sleep disorders, headaches and migranes, dizziness, vision problems, pain in the chest wall, temporomandibular joint issues, among other things. There are like 18 pain points that the doctors check, your flexibility, family history, and your own medical history.
All of the seemingly unrelated issues I had been having for years were apparently actually related. The Tietze syndrome, the GERD, the weird headaches that I would get in small parts of my head that not much could really help, the swelling in my hands and ankles, and the pain. It started just in my left knee, but then moved to my right hip- but they used to tell me that it was overcompensation for my knee, I can't put my full weight on my left knee for too long before it starts to hurt and shake and just be useless. Some days the entire lower part of my left leg from the knee down just has constant sharp or throbbing pain that will last all day long. After that I could start popping my hip almost to the point of dislocation (and never by choice) along with sharp stabbing pain there. Then my left hip started hurting and my right knee started popping. Last year my back started to hurt, mostly my lower back, but occasionally my shoulders and the center of my back. During sit-ups my spine would pop in the most uncomfortable way. My resting heart rate now sits close to 100 bpm, I shake a lot more now, and I have a cane for when the days get really bad. I can't sit down or stand for too long, and I can't sit in the same ways that I used to. The insomnia got worse after deployment, which is also part of Fibromyalgia.

It's pretty miserable. I used to be such an active person. I was constantly going all the time, constantly doing something. In 2010, when stuff started getting much worse and not even ibeprofen would help (due to my job in the military I can only take certain medication and it was never what was strong enough to actually help and still allow me to do my job). My entire outlook on life changed, my entire way of life changed. Now instead of being so carefree, I have to actually think about doing activities and if it's worth the amount of pain I will end up in. I have to consider whether or not I will be standing or walking for long periods of time and whether or not I will be able to sit down or not. I have to consider if I have a backpack how long will I be carrying that and if it's worth the pain. I have to make sure that I always have my medication with my... and my bag sounds like a mini drug store. If I travel anywhere I have to take into consideration how long I will be sitting down without being able to move too much. I have to be careful what I eat and whether or not it's going to upset my stomach.
I write this mostly for myself. This blog is for me to document my life in a way that I have always enjoyed, with writing. I decided at the beginning of the year, when I knew that I would have a bunch of medical appointments, that I wanted to document everything to my best ability because I wanted to be able to remember everything. I apparently suck with scrapbooking so I can't document it like Jen from Sunlight & Air does her own stuff, but this is the next best thing for me. Writing helps me feel better, at least until it makes my hands hurt, so I try to write when I can.
After Christmas I spent a couple of months feeling really sad and lonely. I felt that I was alone in dealing with my pain, because most people don't understand. I couldn't really enjoy doing the same things that I used too because the pain had only gotten worse. It's partially because of all the flying that I had done at Christmas, the long car rides to and from Stuttgart, and just dealing with being in pain all the time. The headaches started getting worse, and work was such a nightmare. I didn't do a whole lot, after work I would just hang out in my room watching tv all the time, and on weekends I would go see friends, but I wasn't as happy or excited or as full of life as I was before. Things went kind of downhill for a while. I wasn't depressed per say, but I certainly wasn't as happy as I was before.
We're trying some medication to see if it helps the pain and the insomnia. It's hard sometimes because I really don't want to get up out of bed because of it all, but being in the Army, I don't have much of a choice. Days like yesterday where my head hurts so much that I just want to cry, even though I know it won't do me any good. The constant pain in my lower back, I have to constantly readjust how I sit before my knee and hips start hurting. When I get upset or emotional it makes my stomach upset, which is also never fun.
Next week I'm sharing a post about Fibromyalgia and the military, so stay tuned.