Arthritic Critic

Today I was going to post about my missing eyebrow but I just can't be funny because I'm sad. I got the results back from my CT Scan and they show that my ankle hasn't fused. When I went back to my surgeon it was with the thought that I would eventually be having surgery because the fusion was a failure. At that point I was told that it looked like there could possibly be some parts that had fused and that we could take more time and see if it would finish fusing naturaly. I was given hope I guess and I got used to the idea of no surgery. In fact, after I got over the shock I embraced the idea, and now, surgery. There are so many things just for me that I worry about with my health on top of just having surgery, you know my sanity falls in there somewhere, too. But I have a family that is over loaded at the moment and when they hear about another surgery, I just don't know where the energy and patience is going to come from. I'm just not sure there is enough, betwee...

I'm traveling by myself this weekend for the first time in something like 8 years.Uhm yeah, its freaking me out big time, you remember I put the N in Neurotic? Yes, Now I'm going to put my ass in a wheelchair. Yup, a really good friend of mine decided against my better judgement to move to Arizona and leave me behind (I told her I didn't accept it but dammit, she moved anyway). Every time I buy a plane ticket to go and see her disaster strikes (ok, so it's only happened once, the other time I was supposed to visit AZ with my parents and thankfully missed a horrible vacation...maybe that time worked to my advantage.) Anyway, the last time I had to cancel I ended up in the hospital a couple months later. So you can imagine that I made these reservations with the thought in my head of "am I jinxing myself?" (Yes, I talk to myself, at least I hope the voices in my head are myself.) So, slowly the days have been passing and I've been biting my nails, walking th...

Ignorance is bliss and denial is not a river in Egypt. Either way, I would like to remain ignorant, so then you might ask why it is that I scheduled a CT Scan of my foot before my vacation, apparently I'm a doofus . So today was the big day where they took a gander inside my foot, you know the one that was fused for the second time a year a half ago. Usually at an appointment like this I'm all about getting a copy of the scan, this time I wanted nothing to do with it. In fact, if I could have dropped my foot off and went about my day without it, I would have been good. And then I wouldn't have had to walk the mile to the door and then another mile to the CT Scan department. Uhm, seriously...I'm having a scan on my FOOT because it hurts and we're not sure if its fused a year and a half later, what part of let's walk a couple miles on it sounds like a good idea. Whatever, apparently I'm unable to ask for a wheelchair because they don't have one quite big...

For the whole two of you that are reading my blog right now, I thank you (and wonder why). I've appreciated your responses and I'm glad to be back, too. I thought I might give you a little explanation as to why all I keep writing about is my RA. I've been fighting a flare for 5 years now. We've made a lot of progress but it's come with a great price in my health. Sounds wrong, right? Here's what I mean...last year we managed to make a shoulder that hurt so bad it nearly drove me to the edge better with cortisone injections. Those injections drove me straight to the hospital for a 5 day stay because my adrenal glands shut down and I went into shock, my endocronologist said he had never seen levels as low as mine before. I'm constantly saying to my husband that my people (friends and family) don't get what it's like to live every day life with RA and it finally clicked, that's because no one talks about it, no one writes it down because it would ju...

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...