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I agree with your whole post. While I am doing fairly well (not too much pain), I still struggle with fatigue, depression, and the feelings that no one understands. I am single and the biggest reason that I really don't want to "get out there" is that I know my disease is going to get worse, so why bother. Is this the best time in history to have RA? Maybe, but it would be nice to have a cure.
Mallen: I have had OA and RA for years. I met and married my hubby after the disability was there. Be kind and gentle to yourself. I can tell from reading your comments, etc that you are beautiful..inside and out. Yes, many people don't understand, but some do. Smile..MissDazey understands, so does Kelly.
PS: To everyone..there are many days I don't understand it myself. hehe
Understand or not, we are in the same boat together, so at least we know the score!
Mere,
And I agree with your whole comment, too. ;D
Why don't you know that I prayed every night for 10 years, begging to have RA at this time in history!!!!!! Sarcasm intended, of course. What really floors me is that when there is a drug trial, if X amount of patients have 20% reduction in symptoms it is claimed as a successful drug for RA!!!??? Do what???? I know I want more than 20%, how about everyone else?? Excellent blog as always Kelly. Please take care of those fingers. Maybe a voice recognition program would be helpful for you even if you only use it when the fingers are at war with you!! Hugs to all,
Jamie
Hello Kelly,
Kind of makes you excited that we are so fortunate to have RA doesn't it! I understood, after I was diagnosed, that I could no longer do a lot of the things I once did, or if I could do them just not at the same level of intensity. This has been the hardest on me always being active playing football, baseball, working out, racing my mountain bike and motorcycles. I have adapted, not felt sorry for myself and gone on being happy with what I can do from day to day.
But, in my opinion, this is just an insulting statement to all RA patients. Just a marketing campaign designed by someone who does not suffer with RA day in and day out.
By the way, Jamie is right. When I went to school, 20% was an F, not a success!
Jamie and Tharr,
"20% is an F" – BWHahahaha. ;D Thanks for the laugh.
I think it is totally ridiculous for ANYONE to claim that there is EVER a BEST time to have a disease. So I guess if my son goes to college one day and ends up with Meningitis and his life is saved with modern drugs but he is disabled the rest of his life that is because it is the BEST time to have had Meningitis? Maybe a boy who loves soccer, cross country running, and is a guitar prodigy would not consider a life where he could do none of those things worth living. Quality of life is important. I tell you, my grandma had disabling RA with very twisted fingers. She died in the ’80’s when I guess it was not the “BEST” time to have RA. She really only took meds for pain, she used to paint with oils and sometimes she drew with pastels. She had real talent. She could not even read a book at the end. I really see no difference today in women. Sometimes I think it is because we are women. Good article, like always! I will be saving to OneNote. Maybe my family will realize I am not lying when I tell them I am really tired. :cat2:
Tamye,
Very well put. I couldn’t say it any better.
As someone who’s had RA for over 14 years and has needed to go to the next level of meds many times, I think our treatment choices are much better than 20 years ago. I have three REPLACEMENT PARTS-hip in 1999, knee and shouder in 2005!! I know I’d be in a wheelchair stuck in some nursing home helpless and dependent on other peoples caretaking without the new surgeries available. Somewhere/sometime in my 50’s. Even though I’ve been on Social Security Disability for 3 years and need bi-monthly help with housework, I AM FREE! Living independently in a senior apartment complex using lots of handicap helpers (bars in bathroom, raised toilet, easy door handles, emergency call necklace, etc.)
I can still take care of myself joyfully! Choose my own schedule, grocery shop, drive…all the day-to-day options I didn’t have during my post-surgery sentences to Rehab/short term Nursing Homes from 2 weeks to three months (broken ankle from a fall).
Thank you God and many medical pioneers for all the efforts made to help us Rheumatoid Warriors of 2010 and beyond.
Hi Bernadine, I’m glad to hear you are free to do more because of the wonderful technology of joint replacement. That is a very good point for anyone reading! Thanks!
(Please don’t worry about your comment not posting right away. I will go ahead & delete your duplicate comment. It was very late here & I had fallen asleep. The comments post as I approve them. This helps eliminate spam.)
I was diagnosed 8 months ago with severe RD. My doctor was almost in tears when he told me what was wrong with me.
The last months have been hell just trying to not only deal with the excruciating pain but in some ways the total fatigue and the emotions that come as well, weaping at the drop of a hat.
I agree with you that the after Orencia is better but is not the full answer by a long shot.
After being a very active person to being slammed with this has been very difficult to get my head around.
A year ago I was literally walking out of my shoes in Australia and New Zealand and Hawaii (had to throw my shoes away when arrived home) a day later I was in so much pain, fatigue I did not know what to do.
It took about 4 months and extremely high blood work results (RF over 3000 and CRP around 500) to give me a diagnosis, which only now is giving a little relief.
Sorry to be rambling just have not found anyone to talk to that seems to understand the way I am feeling, nothing in my life right now can I recognize anymore as being the me I have known for 65 years.
Sorry just needed to vent a little to someone who may understand.