The past 6 years with RA
Six years ago my life changed forever. At seventeen I was diagnosed with juvenile rheumatoid arthritis, and it has taken me six years to fully understand the disease and it implications. At seventeen, I hadn’t a clue how much this would affect the rest of my life. I almost feel as though I were stronger then, maybe because I was much more innocent and naïve. I was forced to become a fighter, whether I wanted to be or not. I can remember the early days when life as I knew it slowly slipped through my fingers. My junior year of high school was spent in limbo of what was “wrong” with me. Countless tests concluded it was JRA, and so the treatment(s) began. Concoctions of pain medicines, anti-inflammatory drugs, steroids and injections were part of my daily routine. On the plus side, we knew what was “wrong” with me, on the negative side; it will most likely never go away. And I had a long road ahead of me.
As we all know, any medication comes with the dreaded “side effects”. Those words alone make me cringe. You see, while all my medication used to target and combat my RA, they also wreaked havoc on other parts of my body; stomach ulcers from my Naproxen, horrible dreams and weight gain with my prednisone, instantly vomiting from my Methotrexate, you get the idea. And due to my suppressed immune system, I contracted a staph infection a few weeks before my senior year of high school. I was hospitalized for two weeks, ten of those days spent in ICU. There was a good chance I wasn’t going to pull through at one point, drawing my entire family together in a hospital room where I lay incoherent. When I finally started coming back around, it had been day number 6, and I was in for a long road to recovery. You see, staph is sneaky, and does not show up in your blood until it’s too late pretty much. It made itself home in my right thigh, and in its beginning stages, flesh eating bacteria was laid on the table as to what it was. Biopsies were taken from my thigh as a last resort before amputating my leg. By the grace of God the staph infection showed its colors, and I was able to keep my leg. (Although fun fact: six years later I still only have about 60% of the feeling in my thigh). During this as well, my blood went toxic and my lungs filled up with fluid, causing yet another mess with my body. So when I came back around on day 6 in ICU, I immediately had to start fighting yet again. Because of the fluid that filled my lungs, I had to build up my breathing, (essentially re-learn how to breathe in my opinion). It was such an accomplishment for me to even be able to sit up, or hobble over to the recliner by my hospital bed. I will never forget how happy I was to be able to take a shower, or to use the bathroom by myself. And I will never forget feeling the sunshine on my face in late August as I was released from Children’s Hospital to start my recovery process. (Long story short, the next few months included antibiotic injections in my pick line, packing the huge holes in my thigh with gauze, and swimming in my clothes since I had lost 30+ pounds because of this ordeal). The one good thing about my horrendous account with staph was that it ran its course and WENT AWAY; my RA will never go away.
Here I am at 23, going through a flare up that has lasted a few weeks now, and I can’t help but break down. I do not have insurance, I cannot afford insurance at this time, and even if I did I am so subconsciously afraid of starting over again with another doctor. I try to not think about my past health issues unless it is necessary because of what a terrible time it was to fight my body while it was fighting itself. Do I want to be on a bunch of prescriptions again? Hell no. But do I want to feel normal? Yes.
At 23 I am much more aware of my body than I was at 17. At 17 I did not take the time to really research my disease. Since I have been hurting for quite some time, I have turned to research and articles and information that I guess wasn’t as big of a deal to me to read when I was younger. What is hard for me is that any dwindling hope that I was misdiagnosed is gone. When I read symptom lists and people’s first hand experiences with RA, it is as though I am looking into a mirror. Just to name some of the major RA symptoms that I personally struggle with, here is goes-
• Hair thinning/loss-between mass amounts of meds and my RA in general; I have lost at least 1/3 of my hair since I was diagnosed.
• Anxiety/stress-my face wrinkles at 23 shows this perfectly.
• Weight loss- dropping weight when you are sick isn’t as awesome when you actually lose it on your own.
• Brain Fog-it’s real! I am not just slow or dumb.
• Fatigue/sleep disorders- especially during flare ups, but fatigue is a daily struggle with me. Waking up exhausted day after day wears on you.
• Pain/swelling-my pain does not just stay in my joints alone, it shows no prejudice and I hurt from head to toe at times.
• Depression- because I am human and not being able to ever be 100% or live my life how I wish I could creeps up on me more than your average person. Especially at 23.
I could go on about every symptom but wanted to touch base on the few that really stick out to me so people may not only better understand RA, but me as well. Living day to day with an autoimmune disease is a battle in itself. So here’s to getting through the last 6 years being ill, and thank you to everyone along the way that has pulled me out of the darkness and has comforted me. I have rheumatoid arthritis, but rheumatoid arthritis doesn’t have me.
When was your last flare?