Saturday, December 29, 2012

I Won't Surrender

     "I won't surrender, I will fight better." - This is War, by Ingrid Michaelson.
      The first time I heard this lyric, I immediately thought about my arthritis. Now, I will admit that a lot of things make me think of my arthritis. But that is only because I live with it, deal with it, and feel it every moment of every day. It really kills me when people think that the best way to handle a chronic illness is to ignore it. I have arthritis. It's there. And yes, I do think about it. But I don't dwell on it. I cannot ignore it when I am in a lot of pain, but it's not the center of my world; in fact, it's far from it.
      I am not done in my fight against arthritis. My strength has been depleted and most days leave me feeling beaten down and somewhat conquered, but I am more than arthritis. I play piano, I am a Christian, I am head-over-heels in love with biology, and I have a little bit of an obsession with tea parties. I am not juvenile arthritis.
I am fighting this disease.
     I do not plan to stop now. It would simply be unfair to stop fighting. It would be unfair to myself. I would be discrediting all of the work I've done so far. It would also be unfair to my friends and family who have been soldiers in the battle. Even if I lose nine days out of ten, I'm not stopping. 
     I'm very interested in whether or not my JA and RA friends find that their joints hurt worse when they're sick or not. I've been sick since Christmas night with a coughing, headache, stomach, and fatigue thing, and I've been running a fever too. My body has just felt really terrible even aside from the arthritis. But the sickness has caused my joints to be ridiculously unbearable. They are constantly stiff and I woke up many, many times two nights ago with a throbbing wrist and freezing from my fever. However, some people that I've spoken to have said that they experience great relief from their arthritis during unrelated sicknesses. The thought behind this is that the immune system gets "busy" working on attacking the sickness and doesn't worry about the joints. I sure do wish I was one of those people! 
      I'd also like to use this post to say welcome back to my back. After some really tough rounds of methotrexate and Enbrel, my back pain pretty much disappeared. This was wonderful, as I gained back some flexibility and it stopped bothering me so much. As of about two weeks ago, my back pain has slowly been creeping back in, and now it's like the pain-free period never happened. It's at its worst in the car. I'm just thankful that I don't ride the bus to or from school! I can't even imagine the kind of discomfort that would bring about. Even cars hurt, so larger vehicles would probably be brutal.
     I don't want to be the blogger or friend who tells the world that chronic illness is easy, or that optimism isn't a struggle. I don't want to dress up arthritis and make it seem like less of a problem than it is. I want this blog to be honest. Arthritis does hurt, and very much so. Arthritis is the kind of thing that can pull you down further and further until you realize that you're Alice, sucked into a hole that you stumbled over. Some days, the hole is dark and frightening and you simply wish that you'd never fallen in. But until we get out, we might as well discover Wonderland.
     "A cheerful heart is good medicine, but a crushed spirit dries up the bones." (Proverbs 17:22). This verse has been at the bottom of my blog (along with a couple of others) for a while now, but I felt that it was necessary to bring it up in a post. We have reasons to be cheerful that have nothing to do with our health.

Love,
Rachel

Friday, December 21, 2012

I Do What I Want

       Every day feels like a year.
       But flares can be pushed through, and battles can be overcome, and good will prevail. It's just been a long week. The kind of week that leaves me miserably exhausted. Predictably, I replayed my stupidity and didn't get my methotrexate.
       "I do what I want."
       I don't know how I got to using this phrase so much, but I do know that it's SUPER helpful. If you ever can't think of a response for something, just throw out an "I do what I want" and you're set, I promise. This started for me in school. I have a terrible habit of walking out of a class and forgetting what my next class is. Not wanting to stand stupidly, I pick a direction and just walk until I can remember. Most of the time, life likes to mess with me by making the decision that I randomly picked completely and tragically wrong. So I do what I have to do; I turn around. Of course, then I'll walk up to a friend and start talking with them and they'll say something along the lines of, "What were you doing, cause you, like, turned around right after you started walking." 
      "I do what I want." It honestly works perfectly. How can anyone argue with that? People just give an uncomfortable nod and another topic works itself into the empty chamber of conversation. I've discovered that this works well in a medical sense, too.
      "Why did you stop your Enbrel?"
      "I do what I want."
      Yeah, I stopped my Enbrel. It was giving me headaches and just making me feel generally crummy.  My pediatric rheumatologist said that it usually doesn't come with side effects, but it did this time! He's actually going to contact the FDA about it, because apparently he had another juvenile arthritis patient who stopped Enbrel because of headaches as well. I'm glad to be off the Enbrel, because my headaches vanished and I sure don't mind not having to be stuck three times (now it's only once for the methotrexate). If anyone else has had headaches along with Enbrel, please send me an email, I'd love to discuss it more and try to do a little detective work.
      I was a teensy bit worried (okay, a lot-a-bit worried) that my doctor would be frustrated with me for stopping the Enbrel. I have a sort of "silence" problem in hospital rooms. I go into appointments angry and desperately needing to explain my current situation, but then once I'm in there and in pain I just don't say anything. Then, I walk out without the results I want just because I couldn't bring myself to speak up. At my last appointment though, I was clear and articulate and he was not upset at all (probably since stopping the Enbrel has not affected my joints at all). Actually, he was very understanding.
     I hate medication. It is a terrible and ungrateful thing to say, but I really do. I oppose the whole "baby aspirin a day" thing and only take my medicine when I feel like I need it. I'm not one of those people who completely rejects all medications and believes that herbal leaves or a special diet or more self-confidence or God will cure me, but I just don't like extra stuff floating around my system. Especially if it's not crucial. Of course, that ends up backfiring a lot, when I take NSAIDs too late and feel awful because my arthritis is not being controlled.  
     Sometimes, with my arthritis, I wonder if I'm good enough. I often don't have the energy to go out with friends. Does that make me a bad friend? I don't always feel well enough for church activities. Does that make me a bad Christian? I have to email all of my notes and do a lot of things with accommodations. Does that make me a bad student?
     There are so many things about arthritis that I never prepared for.


Love,
Rachel

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
- JRA
- 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.

Love,
Rachel

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

Thursday, December 6, 2012

Break The Rules

     The more I think about it, the more I think that "Don't Speak" was a bad post. However, I still think that it's accurate. I'm still going to leave it up, I'm still going to refer back to it, and I'm still going to be okay with it. But I want to use this post to dive a little deeper into it. Hopefully this will bring about more understanding. Please go ahead and accept that this is going to be a perfectly honest post, whether you like it or not.
     I have a theory that the title of "Don't Speak" has been taken very literally by many. Sometimes people just don't say anything because they don't know what to say. I understand that. But I think that sometimes people don't say anything because they're afraid they will say the wrong thing.
    To be honest, sometimes you are going to say the wrong thing. Sometimes you're going to be talking to me and I'm just going to be thinking to myself "stupid, stupid, stupid" or "are you seriously saying that" or "haven't you learned anything". I do appreciate the effort though, believe it or not. I am level-headed enough to comprehend that you are trying, and that you're giving it your all. So please, just say something. You don't have to be generic either. Just say things that you mean. I would hate to think that I missed out on a piece of insight by writing a judgmental post.
    As people with arthritis, we need to understand that others don't understand. How could we expect them to? Also, we have no right to lash out at others when they do say something stupid. We simply keep our grace, educate, and forgive. There is no need for harsh words or a long lecture. This is something that I would say that I do well. I do not get overly angry, I just get a little aggravated. For example, here is a typical conversation:
    Me: "My knee hurts because I have arthritis."
    Other Person: "Really? I think I have that too, my hands hurt when I write."
    Me: "Actually, that's a little different. I have polyarticular juvenile rheumatoid (or idiopathic) arthritis. It's an autoimmune disease."
    There is no point in being like "actually you have no idea what you're talking about" or "would you just shut up already because you don't get it". Grace. Class. Patience. We deal with arthritis; we can deal with other people. We do not raise our voices or lose our dignity. We press on with that much more gentleness. We are sick, but we will not let our sickness affect others. Perhaps that is one of the most important things to think about. We will not let our sickness affect others. 
    I'll be the first to admit that I'm not the nicest person when I'm in pain. However, pain is never an excuse for lashing out at someone. Pain shortens my temper, rips away my sense of humor, and shatters my happiness. Pain is no fun. But everyone has struggles, and if everyone lashed out, the world would be a very sorrowful place.
    I've heard everything on the "Do Speak" list before. That's why it's on there. There is really no need for everything to be repeated unless it is truly meant (though I suppose it could be helpful if dealing with someone who is newly diagnosed). Before you want to talk to someone with a chronic illness, you have to accept a crucial fact:

There is nothing you can say that will fill the void in a sick kid's life.

     No matter how hard you try, your empathy or comforting words can never balance out the pain. Broken relationships can be repaired with enough effort, time, and commitment. Mistakes can be forgiven, because God is just good like that. Most stress can be talked through and resolved. But words cannot fix a body that is constantly attacking itself.
     I'm now officially recommending that everyone stop trying to follow the rules and start following what they feel. Of course, you should probably still keep in mind what could be idiotic. But remember, every person that I've spent a decent amount of time with has said something stupid about my arthritis, something that did not help me at all, something that made me really question how clear I was being. Get over it. I'm not keeping a tally here, or replaying every little dumb comment in my head. Believe it or not, I have better things to do with my time.
     You can't be there for someone if you don't speak up out of fear of saying the wrong thing. If you really know someone well enough to the point where you're having a conversation about their arthritis with them, you ought to at least say what you're truly thinking and stop going over the mental checklist. You are not a robot.
     It is okay to mess up. People mess up all the time. Us JA kids are not expecting perfection out of everyone. We simply desire sensitivity and a genuine effort. It is exceedingly tough to talk to someone about arthritis who never brings up the arthritis themselves. No sick kid/teen wants to introduce such a painful and upsetting topic. Chronic illness patients just need someone to say something.
     In an email from one of my arthritis friends, Corrine, she wrote, "The best people don't wait for you to run to them, they run to you knowing that you need them."*

Love,
Rachel


*Thank you for letting me quote you, Corrine.