Saturday, December 15, 2012

Flaring Up Once Again

      I barely ever use my full diagnosis. My full diagnosis is acute polyarticular juvenile rheumatoid arthritis (or acute polyarticular juvenile idiopathic arthritis). Five words is four words too many. I only use that diagnosis when speaking to medical professionals or my teachers. Here are all the terms I use to tell people what my disease is:
- Acute polyarticular juvenile rheumatoid arthritis
- Polyarticular juvenile rheumatoid arthritis
- Juvenile rheumatoid arthritis*
- Juvenile arthritis
- Arthritis
- JA
     When people ask me a question that points to my arthritis (eg. "Why do you wear braces/splints?" or "Why do you bring your laptop to school?") I usually say, "I have this disease called juvenile rheumatoid arthritis." I then tell them a little bit about the disease and refocus on whatever I was doing before the question was brought up.
      People often ask me which term they should use. I tell them that it's fine just to call it "arthritis". There is really no point in making it more complicated than it has to be. But in all honesty, I prefer "JRA". I have a form of arthritis, but more significantly, I have JRA. I do not have injury-related arthritis, ankylosing spondylitis, or osteoarthritis. I have JRA.
      It's still fine with me if you just use "arthritis". Just something to think about.
      I feel like a lot of my life is telling myself a lie over and over again to try and make myself believe it. The only lie that has worked so far is "if I keep lying to myself I will believe it". That's really quite pathetic. Anyway, a few of these lies relate to methotrexate. It starts on Friday. On Friday, I tell myself "I will get my methotrexate tonight. I will not procrastinate it. This is a serious medication, and I will keep myself on a schedule with it." Anyway, that almost never works out. I get tired and I don't feel like being poked with a needle and sometimes I forget about it. Then I wake up on Saturday thinking "what in the world have I done my joints hurt so bad". I finally get it (most of the time) on Saturday nights. Then I convince myself that I will have enough energy on Sunday and Monday to be productive. I never do. Sundays are pretty brutal. After MTX, all my body wants to do is sleep for the next two days.
     I do not want to sleep for the next two days. Sleeping makes me feel lazy and useless. I like to think that I have some amount of worth and purpose. So I lie to myself again, saying "I will have enough energy for everything I want to do." At the end of the day, I just don't. 50% arthritis fatigue and 50% methotrexate fatigue gives me 100% fatigue; that's simple math. What's even worse is that people don't understand that I'm actually trying. When I say that I'm tired or exhausted, I really am. I'm not using that as an excuse to not have to do something. My body literally feels like it is collapsing on me. I have fallen asleep at church (not IN church, AT church) and at the lunchroom in school. I am exhausted and fatigued and I need to hibernate.
     Every Tuesday, Wednesday, and Thursday, I lie to myself by saying "I am strong enough to go without methotrexate. It just makes me feel terrible anyway." I'm not strong enough. I need that medication like I need orange juice (I really love orange juice). I'm flaring up again, and it's just a real bummer. I got out of my summer flare and was doing pretty well except for side effects, but not so much anymore. I had to go home after only one class period Monday because pretty much all of my joints were hurting, especially my elbows. My elbows and knees have been the worst lately. Did you know that elbows are the hardest joints to treat? That's what my pediatric rheumatologist told me at my last appointment.
      My elbows have also lost a lot of range of motion. It's really insane how fast things can go downhill. This last week has been miserable. I summon all my strength for things that are important to me, but sometimes it doesn't work out.
      There are things about my arthritis that I will never be okay with. Things that will never fail to disappoint me, even when they happen a million times over. I don't know if that is a weakness of mine or if it just goes along with having JRA.
      Never knowing won't kill me, but it sure is tough.


  *You cannot say only "rheumatoid arthritis" because that's an adult disease that is separate from JRA. 

1 comment:

  1. Sorry to hear how the Methotrexate is treating you. I used to take it and then switched to Enbrel, which has been much kinder to me. I did both Methotrexate shots and pills, a year of each. Maybe you can ask if the pills would be better since you can split the dose over a couple hours?


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