maroldc@mediaone.net

My name is Caroline and I am 53; aka Duckie, a name I received as a result of the Ohio Gimpfest. :) See page 27 of the photo journal and scan to the bottom. I was suppose to be a dove but well....
community/photo/page27.html
I am a wife and mother of one child who was born in 1976. She is no married to her childhood sweetheart and they are getting ready to make the move to CA.

I have serum-negative Polyarthritis with rheumatoid tissue at surgery [basically RA], OA, Fibro, and I am the Iritis Queen. I also am epileptic and have high blood pressure which all have their own sets of medications but that is for another story at another time.

My first recollection of pain was at about 7, sitting on a brick wall with the rest of the neighborhood kids, leaping off with them all and being frozen to the spot with sharp pains rising from both feet up and out the top of my head. All the rest were already running but I had to wait to catch my breath before I could follow. This happen several more times before I told my mother. Pediatrician said it was growing pains.

I think I was 22, during the first year of my marriage, while visiting my in-laws and sleeping in a way too soft, saggy bed that I first woke up, frozen with stiffness and unable to move because of the pain. I had to wake my husband to lift me from that nightmare. Saw doctors on and off for years -- most of them chalked me off to being crazy. My favorite nut case even told me that 'when my sex life improved, I would feel better'. I entered my 30's using a cane.

By the time I was finally sent to a RD, I had a pretty sizable chip on my shoulder and was self medicating a 14 aspirin a day habit. My father had AS and that was the dose he was given. Not exactly a good idea but I also had his iron stomach, thank heavens. Of course, those iron stomach days are now past.

That poor RD. I think I scared him but he was the first to finally take me seriously. So in my mid 30's, I finally had a diagnosis and was given Feldene to replace my aspirin. That diagnosis has been given different names with the retirement and subsequently new RD's. The good news -- the treatment was still there.

That treatment started with a simple NSAID but when I lost my first wrist to the disease and then one finger joint, gold injections were added. Those gold shots made me feel better overall for many years but did not stop the progression of the disease. [It is still my opinion that my Fibro pain was better on gold than anything else -- minutes after that shot, lumpy knots would just melt and stay away until about a week before the next injection. I wish there was confirmation of that with research for others.]

Off and on during the last 25 years, I have had bouts of Iritis,
inflammation of the Iris of the eye. Sometimes in the left, sometimes in the right. When those were finally becoming chronic in the last few years, I was taken off gold and put on Arava to see if that would help. No was the answer.

The dosing of Pred Forte [steroidal eye drop] over the long term cause a cataract in my right eye. It got so bad that the ophthalmologist could no longer see behind it to the back of the eye. The cataract had to come out but no operation could be done until the inflammation was under control and stayed that way for at least 3 months. My body did not cooperate. I had met and seen every resident [on call on the weekends] and nearly all of the ophthalmologist in the department. Finally the immunological ophthalmologist [Sarkis H. Soukiasian, MD at Lahey.org] did a bit of poking around research with doctors using the latest drugs on the market to stop uvitis. He found one man out west who found Enbrel caused JRA patients to flare with uvitis even when they had never had a previous case and was using Remicade instead as that did not seem to have the same result. The choice being made -- we just needed to convince my ultraconservative RD. He whined and but went along with the decision and I changed RD's. hehehe The new one is great and is very aggressive in treatment and cares about me and the rest of what is going on with me. He is a keeper.

So is Remicade. Wow, do I love this drug. I started it last May, 2001 and by June was sitting in the lawn on my knees gardening. This is what I did last summer http://home.attbi.com/~maroldc/garden/garden.html
My DH said Remicade was going to kill him. He was so used to me sitting.