I started this one out offending everyone, didn’t I?
I heard this one back when Glenn Frey died. For those who don’t know who he was, he was a member of the Eagles who died of complications of Rheumatoid Disease. He died of pneumonia, and his body couldn’t fight it off. (Or that’s the story I heard.) Suddenly there were all these articles discussing dangerous RD treatments, and ill-informed opinions from the comments sections saying that RD patients were completely stupid to let BIG PHARMA kill them for money. Dealing with the pain and not eating tomatoes and sugar is the obvious cure. (I’m not being sarcastic there. Tomatoes actually can make RD flares in some people. Not me, thank God. I’ll eat my weight in them.) Oh, and don’t forget the BLUE STUFF. (Blue Emu. It’s pretty amazing, actually.) I’ve also heard that turmeric cures everything. Probiotics. There’s a never ending supply of advice from non-doctors with anecdotes on how their mother’s sister’s cousin in law twice removed by marriage cured RD and everything else wrong with them.
Big Pharma. There’s a dirty word for you. According to half the US, Big Pharma is never trying to create a cure for anything, because they’ll run out of money. As I raised money for my parent’s cancer treatments, I know they are definitely out to make more than a few bucks off sick people. I’d like to think there are good scientists out there that are looking for better cures for us, though. Just because suffering is painful to watch, too.
But, I digress. I point this out because I wanted to show that while I don’t buy into all the hype about Big Pharma, I didn’t choose to take these drugs because I’m fooled into it. I chose to do so after careful research and discussions with my doctor, a wonderful woman who I fully trust to look after my best interests.
When I first got diagnosed, I said quite firmly that I would never take those “dangerous drugs.” I told my husband that I would rather deal with the pain of having RD than to suddenly die of something that I didn’t know was happening in my body. I hoped that I would take them to get control over my RD, and then go from there. I would be just fine in a few months.
Boy, was I naive.
The problem with this reasoning is that I was not considering the long game. I’ll venture to say that I was not even aware of the long game. I thought (hoped!) that limping around like I was would be how hard RD would ever be. Then the doctors dropped the bombshell: if I didn’t take these drugs, I would be totally disabled within 10 years. Unable to work, totally dependent on others. My immune system was attacking my joints at a very aggressive rate not normally found. I started the immune suppressing medications, with the hopes that maybe one day I could come off of them. Get into remission, maybe.
It didn’t, clearly. I had started to realize that the choices were to always take immune suppressing drugs, or to live a life in pain. I sometimes still wondered if I could handle it, until the VA in Atlanta stopped allowing me any treatment except Naproxen. Over the counter pain drugs. It was pure hell. When I walked, I felt like swords were being shoved through my body. I couldn’t climb stairs. Even lying down hurt, because I have shoulder damage. There was absolutely no relief from the pain. I felt like every bone in my body was broken. I became addicted to pain medicine. I sneaked behind my husbands back because I knew it was awful, taking ten Aleve in the morning and ten at night, along with any other pain medicine I could get. All of this just to be able to walk while feeling like I was being stabbed. When I didn’t nearly overdose on pain medication, I couldn’t walk at all. Over a year later, I began treatment at the Naval Hospital in Augusta, and they got me Enbrel again. I will never forget the first morning I got up and could walk without pain. I finally broke my addiction to pain meds, mostly. I still make Adam hide pain meds from me, and he gives them to me in safe amounts when needed.
I tell you this story to demonstrate that I know the results of my decision first hand. I can either live, or I can have life. There’s a difference. I had life off of immune suppressing drugs. Certainly my life span will be longer, if I refuse them. Having RD alone doesn’t actually shorten my life span. But is it worth it? I wasn’t even using a wheelchair to get around, because just the act of sitting up was painful enough. I would have been mostly confined to my bed. Most people think they can take a decent amount of pain. I’m here to tell you that you are deluding yourself, and I make no apology for such a strong statement.
I, and many other people with RD, chose to “be stupid” and take those dangerous treatments because we want to LIVE the years in that shortened life span. I live a fairly normal life. I use a cane and walker, sure. It’s honestly mostly for balance. But I get out. I go to school. I work. I take my nieces and nephew places. (I take them on rides on my walker, actually. People don’t know what to make of that!) I was healthy enough to travel for five weeks in Germany and Switzerland last summer. My husband and I travel. (We are going tubing next week!) I don’t live life in a bed, or feeling like I’m walking on shards of glass. Oh, and the doctor’s prediction of being totally disabled in 10 years? I’ve had RD for 20 now. I’m still living my life, and as I chose it.
In short….I take the chance on the “dangerous drugs” that shorten my life span because I’ve chosen to live. And I have an incredible, happy life.
Unapologetically Disabled 