Tuesday, August 21, 2012

The Unknown

    When people think of arthritis, they think of joint pain. Rightfully so, if I may add. After all, arthritis literally translates into "joint" (arth) and "inflammation" (itis), and that equals pain. But what most people, even well educated people, don't know is the hidden side of arthritis. I thought I'd speak a little about that today. This post is more aimed towards people who don't have arthritis and could benefit from a better understanding, but also for people who have arthritis and can stand with me and go, "I know, right?"
    Haha, so to the point.
    First of all, let's talk a little about immunosuppressants. If you don't know what an immunosuppressant is, it is a medication that attempts to break down your immune system, which fights off germs and viruses and basically the "bad guys". When someone has an autoimmune disease, their immune system is attacking the wrong thing (in the case of JRA, the joints). To slow the attacking, immunosuppressants are given to weaken the immune system. While it can make autoimmune disease better, we also have less germ-fighting ability.
   Being on two immunosuppressants, I have to constantly sanitize and wash my hands, be careful what I touch, and avoid people who are sick. Petting zoos, hugging a person who's not feeling well, and sharing drinks/food are all off limits. Even if I'm in the petting zoo vicinity and not touching anything, I must still be very careful to wash my hands really well afterwards. If I want to share my food, another person's utensil cannot touch anything that I am going to eat. For example, if I'm having pasta, they either need to get a clean fork or I have to use my fork to put it on their plate. It just goes along with being on immunosuppressants. People on immunosuppressants tend to get sick more easily and get sicker than a normal person would.
   You know, it sounds like I must always be thinking about this, but it's just a way of life now in the same way that being a vegetarian is. I'd rather be safe than be sick.
    Secondly, we shall talk some about medications in general. Let's take two examples: NSAIDs and methotrexate. These are the two most common JA medications, so we'll skip biologics right now and just stick with these. NSAIDs tend to rip the stomach apart when taken consistently for long periods of time. Whenever my stomach hurts, it's usually from NSAIDs. They suck, but they reduce the pain about a one or two points on that 10-point pain scale, so I guess that's worth it. I don't know how many other kids with JA experience this, but I've tried a lot of NSAIDs that gave me severe and annoying ringing in my ears. Meloxicam was the worst about this, but I'm on Naproxen now. I remember one time in sixth grade when I was in science class and it was just awful, the ringing and everything. It was giving me a headache and it was sooooooo loud! I'm so glad I got off that terrible Meloxicam, but if it works for you, so be it. Naproxen seems to be working out alright for me. I still have the ringing, but it's not quite as bad.
    Then there's methotrexate. If you ever find yourself in a scary situation in life, when someone asks you to give an example of a love-hate relationship and you can't think of anything, say methotrexate. Seriously, it's the best example ever. First of all, methotrexate is pretty much the only medication that makes my JRA most of the time livable (which really stinks, since there's a shortage and everything). Let's begin with the injection (some kids take it orally, but most of us get the weekly injection). Injections are not fun. I don't freak out and I don't think they're the worst thing ever, but they're not fun, and that's just that. Then, the next day, I usually feel pretty darn crummy. Some days, I feel like going into Dr. Rheumy's office and screaming that if I am ever prescribed more methotrexate I will run to Antarctica, grab some icebergs, run back, and start destroying things and launching ice chunks at people. Then, on other days, I feel like giving him the biggest hug ever because I know my pain could be a gazillion times worse.
    Third, we have the ever-so-popular fatigue and exhaustion. Fatigue affects a lot of patients with JRA. I don't have fatigue, but I do get exhausted really easily. I use my wheelchair when we're in situations that require prolonged amounts of walking, but if I even get up to walk around a single store, I am extremely exhausted afterwards. The littlest things suck away all my energy. We arthritic people have to use our time wisely. This goes along with the spoon theory (which I'm not a fan of, but I understand).
    Lastly, we'll take a trip down Uveitis Avenue. Uveitis affects an alarming percentage of kids with JA. It can even lead to blindness, which according to Arthritis Today happens in about 45% of cases of uveitis. I don't have uveitis myself, but a lot of my friends from the JA Conference in St. Louis did. Kids diagnosed with JA will usually see an opthamologist once every six months to check for warning signs and symptoms of uveitis. Catching it early can make all the difference.
    I hope this blog post provided some insight on some of the more hidden things that come along with arthritis, and if you can think of any more please leave a comment or email me at thekidwitharthritis@gmail.com!

Love,
Rachel 

2 comments:

  1. I was on Meloxicam for 3ish months and the ringing in my ears was TERRIBLE! I don't want to say I'm *glad* that you had the same thing, but I'm just glad that I now know I wasn't crazy! ;-) LOL!

    I get tested for Uveitis every 6 months and I also get my fields tested because I'm on Plaquenil... It's really a pain in the butt, but I feel so blessed that I don't have to deal with that on top of my joint pain and fatique.

    My medications and different therapies generally tire me out really quickly... Shopping is a whole nother ball game! I'm pooped out after the first store. I also get really nauseated when I'm exhausted... I think a lot of it is sometimes my loss of appetite (from the meds) and taking my meds on an empty stomach... Which just starts the nausea all over again!

    Really liked this post! Going to pass it on to some of my other friends.

    Xo,
    Kenzie

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  2. I took Celebrex once and it was awful. I got switched to Mobic and it works really really well for me. It's funny how having the same condition doesn't mean we all take the same meds ^.^

    But I totally agree about metho. I take the pills. and i HATE it. i hate. i hate it. i haaate it. but it helps sooo ;o the nausea and hair shedding drives me insane but it manages my arthritis so i gots to suck it up!

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Feel free to comment or shoot me an email - thekidwitharthritis@gmail.com I'll try to get back to you either way!