Arthritic Critic

Yup, 40 years. I've probably had RA longer than pretty much anyone else I know. That said, I probably look better than most people who have been diagnosed for 10 years. I spent most of my childhood in remission . Yes, that unobtainable goal of NO PAIN , and I enjoyed it, as much as a child can enjoy something that they think is normal. As life went on, things became more difficult. I was proactive and got on biological meds as soon as they came out when they didn't work I pushed harder. With my first try out I gained remission on Enbrel. Two remissions in one lifetime, I guess that makes 40 years of inflammatory arthritis almost bareable and then the Enbrel stopped working and the RA got worse and then Remicade gave me a bad reaction, and Humira didn't work, then Arava and Orencia and even methotrexate didn't work. Then I started to look like a real RA patient, one with a limp due to two ankle fusions. A gimp due to two back fusions, and thankfully a pretty easy elbow s...

I had a doctor pretty much tell me to suffer a few days ago as if my pain wan't important enough because it didn't require surgery (and believe me, I'm thankful for that...now if only the pain went away just because it doesn't require surgery.) The past few days on the RA boards I frequent I've read repeatedly about people being told they are malingerers. That's a lovely word for what people really mean... It's all in your head (ironically, right now it is in my head...and my neck) You're lazy... If you just got up and moved around more you would feel better.... Lose a few pounds and your joints won't hurt as much ... It's got me thinking, who would chose to be sick? I know there are those out there that take advantage of disability (though its hard to understand how they can get it when it's so hard for those with a disease to actually get it) payments. There are those that want to sit on the couch and have someone else do the work for them...

Up, down...somewhere in between. That's pretty much how my health is right now. We seem to have found a drug that finally works for my RA but trying to get the doctors to take my residual pain from previous damage seriously seems to be like a long bout of banging my head against a wall. I don't understand why some doctors act like RA is no big deal. I had my ankle eat itself in 3 months, what about that is no big deal...mostly it's that the pain is not located anywhere on the doctors body. Why would anyone make this kind of pain up. To me living my life painfree would be a blessing and if I woke up tomorrow painfree I would never pay another copay in my life, happily. If every time a doctor told me there was no reason for my pain it actually went away, life would be good. Unfortunately that isn't the way it works. All this to say I have a congenital fusion in my neck from when I was born. It's called Kippel-Feil's. It's a natural fusion between c2-c3. I have...

I have RA. It effects me all over. I have 10 different doctors. I'm sick and probably a little frustrated also. One of the things that I really like to do when I'm able is cook. As I start to cook more I realize what in my freezer I need and what I don't. So I put all of my frozen stuff in a bag and donated it to the local food pantry. Of course before I did that I managed to pick up the 30 pound bag from the freezer and hurt my shoulder. The shoulder that I've been working with my surgeon to get better for the last year. That shoulder that I've had 5 cortisone injections in, that shoulder that put me in the hospital from steroid induced adrenal insufficiency. I should feel horrible that I re-injured my shoulder but I don't. How the heck are we supposed to live a normal life if we can't lift a bag when no one else is around to do it? What happens when you need to vacuum? Or pick up your child? Do we live in a bubble because there might be a chance that we in...

The other day I was complaining to Joe as I'm known to do. When I started to moan and groan, "I'm 38 and I shouldn't have to be dealing with my body falling apart"....moan, groan...you know the usual things I normally complain about. After I said the "I'm 38" part for about the 5th time it finally occurred to me that I just celebrated a birthday and I am now 39. I looked at Joe and said, "uh yeah, I'm 39." He just smiled at me and kept his mouth shut. I guess he figured if he corrected me at that point he probably wouldn't have lived to see his 39th birthday....smart man!!

I've often heard people mention that people in wheelchairs are ignored, or that people don't make eye contact with them. In fact, because I've read this so many times I try and make a conscious effort to look someone in a wheelchair in the eye while I try to help them to the best of my ability in whatever way I can. This has been an interesting year for me. I have found myself wearing a corset, a couple of bone stimulators and a cam walker (a boot from my foot to my knee.) I haven't had the situation with people ignoring me, in fact, I have had the opposite and every where I go I get questioned. What did you do, what is that thing, what does it do, is it helping, how do you deal with the heat....until I pretty much feel like I have given every stranger within a 50 mile radius my life story. As I have gotten sicker my life has become much smaller and as you can imagine, I don't even want to tell the people I like about my health for fear of unasked for suggestions or...

As you may have notice by my lack of posting, I'm not doing so hot. I have a marathon of doctor appointment this week and it just keeps getting more and more depressing. Cortisone shot in my knee on Monday, sign up for a endoscopy on Tuesday, Orencia infusion and an appointment for an injection in my TMJ on Wednesday and I'm only half way through the week. I'm on my second infusion of Orencia and it doesn't seem to be doing very much. In fact, both my left elbow and my left knee are bothering me and I can barely get my mouth open. I'm feeling pretty lousy for having $8000 worth of meds running through my veins. Dr Angry managed to, well...make me angry this week. When I went to see him about my knee and asked for a cortisone injection (my knee is sticking...it gets stuck in the bent position) he looked at me and gave me a big smile and said "You know I don't want to do this, right?" I know it's stupid and petty to be upset about this but I really a...