Wednesday, November 24, 2010

invisible illness

I don't normally talk very much about depressing or "bad" things going on in my life on this blog (okay, I don't normally talk very much, period), but I just needed to get some things off of my chest.

(image via weheartit)

I don't think I've ever mentioned it here before, but I have rheumatoid arthritis. I have had this disease since I was a little girl, and it sucks. Before you tell me, "My grandma has that!", let me explain something. Rheumatoid arthritis and osteoarthritis are two different diseases. Osteoarthritis is the one you get when you're old, usually. It's just caused by the wear and tear of living life, and it wears out your joints. Rheumatoid arthritis is an auto-immune disease in which the immune system goes haywire and thinks that your joints aren't supposed to be there... so it attacks them and eats away at your cartilage constantly. It causes pain, stiffness, inflammation, fevers and fatigue, among other things. Imagine that you broke your ankle, and then just picture having that pain constantly, all day, every single day. Imagine someone kicking you in the knee, all day long. This isn't even describing half of the pain. Lately, it has been robbing me of a normal life.

I take 3 different medications to manage this disease.
  • Methotrexate: this is a chemotherapy drug. It was originally used to treat cancer, but it's been used for treatment of RA for a long time now. It has tons of scary side effects. Bloody stool, liver failure, miscarriage, extreme sensitivity to sunlight, fever, loss of appetite, body aches and flu-like symptoms. I take 6 tablets of this every week.
  • Voltaren: this is an anti-inflammatory medication that helps with pain. It doesn't really cause many problems with me, but it gives me heartburn and it makes me a little nauseous when I take it. I take this twice a day.
  • Humira: this is an injectable medication that suppresses my immune system. I run the risk of getting sick more often because this weakens my defenses, but it also stops my immune system from attacking my joints. You can't win, can you? I inject this into my stomach twice a month.
It's hard to explain this disease to someone who doesn't know me. Some days, you can't even tell I have it. On days where I've worked a long shift, though, I can't walk when I get home. Sometimes my ankles get so sore and swollen, I can't put any weight on them at all. I have to crawl on the floor to get to the bathroom, and Cade has to help me do everything. Sometimes I struggle so much to move only to the next room. It's frustrating. It makes me feel completely useless sometimes. I don't look like I have anything wrong with me, most of the time, so people don't usually know I have anything wrong with me. The most annoying and frustrating part that bothers me is when I am at work, and I am limping. Yes, I limp. All the time, basically. And I know this. It really pisses me off to be asked 1000 times a day "Did you hurt your foot?" "What's the matter with your leg?" etc. But the worst is when they just say, "You're limping!"... no. shit. Really? Thanks for pointing that out to me, I had no idea!

Another misunderstanding that people have gets on my nerves even more. Picture this:
Stranger: "Oh, did you hurt your foot?"
Me: "No, I have rheumatoid arthritis."
Stranger: "Ah, yeah... I have that in my knee." or "You're too young to have that."

Osteoarthritis is the one that you get usually when you're old. Rheumatoid arthritis strikes at any age, and it is a whole body disease. You don't just "get it" in your knee. I am in pain 24/7. I don't talk about it much because I don't want to be known as "That-Girl-That-Complains-All-The-Time". Or the crippled girl. You know, once last month, a customer actually asked me, "You crippled or somethin'?". What do you even say to that? Yeah, I didn't know either.

Some days, I can walk around just fine with a barely perceptible limp. You can tell by my hands that I have something wrong with me, and I hate showing my hands to people. My fingers show the tell-tale signs of RA. Other days, I can't move. I can't stand up at all. I have such horrible fatigue that I can sleep for 12 hours and still be exhausted. It's not fun.

A new, more recent frustration has been my medication. We had a change to our health insurance, and my Humira injections now cost $1,760. Per month. Yeah. I have applied for assistance throug the drug company, and they are covering $500 worth of the drug, but that only takes it down to $1,260. I spent 3 weeks trying to get assistance through another company only to be denied yesterday. I haven't had this medicine in 2 months almost. They did tell me to call if I needed help with anything else, though. How kind. Since I've been off of it for so long, I am having a horrible, painful flare up. When I get home from work at night, I can't move. I lay there trying not to cry and making Cade go back and forth bringing me drinks and reheating my heating pad in the microwave. I can't walk at all. Or crawl, because my knees hurt so bad. I have to wheel around the apartment in the wheely computer chair. There's honestly got to be something that can be done about this, but I am just so freaking mad and frustrated that I don't even know where to look first. It really burns me up that customers at my work (I am a pharmacy technician) can get this drug for $20 bucks. WHY CAN'T THAT BE ME? What did I do? What?

Finally, my mom broke down today and just charged the damn shots to a credit card, thankfully. So hopefully I'll be feeling better soon. I have had just about all I can take of this, that's for sure.

Normally, I don't really talk about this to other people. I keep the pain bottled up inside most of the time, and I don't let on that I just want to scream and cry and have my legs amputated. It seems like that would be preferable, most of the time. I don't like to complain or be treated like I'm diseased. I just wish people knew a little more about the struggle I am going through. I know it could be so much worse, and I could be dying of some horrible incurable disease. But at times, I do feel like I am dying of a horrible incurable disease. Right now there isn't a cure for RA, and it can take 10-15 years off of your life expectancy. It's hard to stay positive sometimes when your entire body is radiating with pain, but I am so grateful that I am at least alive.

So yeah... now you know, I'm crippled. It sucks. But I do have a handicapped parking tag, which comes in handy sometimes.

Thanks for reading, and please remember this info if you ever come across someone else that suffers from RA. They will love you for simply understanding their disease.

(THANK YOU, if you read all of this. I appreciate you!!!!)


  1. I am so sorry you have to go through this. I've never experienced this myself, but I have met people here and there who have had this 'invisible illness' and I know how frustrating it would be to have an illness that people couldn't physically see or understand at all.

    I can't BELIEVE how rude people can be/are. "You cripple or somethin'?" That is RIDICULOUS. I am so sorry.

  2. I'm so sorry :( I'm going to pray for you since it's all I can do :(

  3. Hey Emilie,
    Maureen at work was telling me about the meds. I guess you Mom was talking to her. Does your Dad's insurance cover anything????? Maureen and I are trying to cook up a plan to help out....stay tuned!
    Love ya

  4. Hey Coleen!  
    How are you?  My mom payed for the meds for me last week so I finally got some. It was $1260 =\ but I am glad I got it. I am going to be trying to find some other type of assistance through the drug company. They paid $500 of it but we still had $1260 to pay. Hopefully next month I'll have found an set up something else to help pay for more of it. 
    My dads insurance has a $5000 deductible so we have to pay that out of pocket and then they are supposed to cover all but 10% of it after that. Hopefully, that's what they said anyways. 
    What did you guys have in mind?  I am looking into anything I can find so any ideas are great!



  5. has been having a really awesome giving streak lately, especially with the upcoming holidays. I think you should post your story there. Someone may be able to help you.

  6. Emilie,
    Send me an email so I have your address and I'll let you know what I was thinking.

    accrisanti at yahoo dot com

  7. I'm sorry people are so ignorant. I actually have the "old lady" osteoarthritis - got it when I was 18 due to a freak accident and several surgeries. It really sucks, but I know it's NOTHING compared to RA. I'm sorry you're having so much trouble, and I hope it starts looking up soon!