I Hurt

I Hurt

No not emotionally hurt, I have not been hurt by someone else, I hurt. My hurt is as a result of Rheumatoid Arthritis (RA) and this week my joints are in rebellion. My fingers, hips, wrist, knees and feet feel like someone took a sludge hammer and hit these body parts hard. Now I hurt almost all the time anyway. RA has robbed me of my stamina, my ability to work, to stand, walk, move, sleep or stay awake. It has robbed me the ability to travel where I love to go enjoy the park with my grandchildren or walk the dog around the neighborhood. The thing is RA like diabetes is full time job, except there are no daily injections.

I have a bit of a strange way of thinking about my autoimmune system; in both type 1 diabetes and RA it has been my autoimmune system that attacked my body. I imagine that one day back in 1974 my autoimmune system was sitting around looking for something to do. A group of my auto immune system formed a gang and for kicks they decided to go harass my pancreas. I know this is not true, but this is how I imagine it. Anyway, the gang attacked my pancreas and no one seemed to care much. In fact I masked their damage by taking insulin and pretty much went on with my life.

Well this gang, never disbanded, and for a few years they were content with causing some havoc elsewhere. Sure it was fun to focus on beating up on colds, while infection from cuts went on a rampage. The autoimmune gang had a good laugh when it allowed me to get measles 4 times, the last of which was when I was in high school. It was fun like spray painting walls in the subway. This gang painted some slogans around things like: good health go home or Kilroy was here. For the most part it was funny. Kind of a biologic side joke.

Then the gang had a meeting and they talked things over. The diabetes deal was a cool thing to cause. But they wanted another big score. After thinking about it one of the creeps suggested her now we are older let’s do an age appropriate deal. So they decided to attack my joints. They got some guns and RPG’s and a couple of inflatable boats and they attacked my joints. Oh no one noticed at first a little pain here a little there.

Then two things happened. First this guy they were messing with went on a college visit and he could barely get out of the car. His son toured the university without him. Then his older son brought home a wonderful brand new Trans Am. He was so proud of it and he was taking everyone rides around the block. Well everyone except this guy who could not stand folding his joints to sit in the car. So he passed. It was not my best moment.

Well anyway the autoimmune gang kept at it and they finally made life so miserable that I went to my diabetic endocrinologist and he did some tests, then he calmly referred me to someone called a rheumatologist. The Rheumatologist was amazed at how much mayhem this little gang had caused. So 15 + years ago I started taking TNF inhibitors. These drugs when successful were designed to hold the gang at bay.

Today I take a drug called Rituxan and since I can no longer take the TNF inhibitors, Rituxan is a CD20-directed Cytolytic Antibody. Since the TNF inhibitor no longer work, we have had to buy some more weapons. It seems every time the doctor gets a new drug, the gang gets new weapons. So today we are locked in an arms race, each side doubling up on the other. It is sort of funny really, an autoimmune gang fighting modern medicine. It seems that after about 15 weeks the gang starts to win and my joints get attacked. Thus today I hurt.

So on Thursday this week I get a new dose of Rituxan, and the gang will eventually be put back in its bottle. For a while anyway, because one can be 15 weeks from now, I will once again be hurting. After all anything mean enough to get my Islets and my joints cannot really be silenced. Yeah, today I hurt, a lot. So please don’t offer a college visit, I will have to sit that one out.

-30-

Rick

Hi Rick, I'm not as creative in thinking about my autoimmune system as you! A nasty gang, huh. Maybe relatives of jrtpup's gremlins?

I do relate to your title, "I Hurt". My RA, starting at 12 y.o., has been in remission since I was about 40. There remains damage and some pain, but clearly not the kind of pain that you're dealing with. Mine is kept under reasonably good control by Celebrex (and hot showers in the middle of the night). I do distinctly remember the awful pain in those early years. I'm hoping you'll find some relief for the pain soon, and particularly hope that you'll go into remission very soon.

Ahh Trudy me as well. My RA stuff is way worse than Diabetes. IT is a poor situation when you tell your spouse you wish you only had diabetes. This is my 5th biologic drug and number 4 had me in the hospital with a medically induced case of Lupus. Man I was sick. That happened last August or September I spent a week in the hospital and I truly felt I was at the end, Well of course I survived and I am glad I did. But man i was ill. So the beats goes on.

Hi Rick. Yes, I originally wrote to you that my RA was far worse than my Diabetes and then deleted it because after all, Diabetes is far more likely to kill someone. But for day-to-day pain and management, I'd take Diabetes anytime. My ironies are that my neuropathies are from Pernicious Anemia, not D; and my digestive problems are due to the PA and Celiac, not D. But my Juv. RA has done the most damage; a right knee replacement in 2000 helped me enormously.

Again, I am so sorry you are having so much pain and difficulty with the RA. I'm glad you survived, too! The drugs are certainly a mixed blessing; I hope your Drug #5 works out, and that indeed a remission waits in the wings. Your wife and my husband are the greatest!

hi rick & trudy sorry about your aches & pains