One thing I wish every day is that everyone in the world could read the priceless emails from other warriors I receive every day. If everyone treating or researching this disease could read them, comprehension of the disease and care for it would improve. Family members could have greater understanding. Employers and friends could begin to grasp how Rheumatoid disease affects the lives of people.
That is what led me to start the Onset Story project. It is invaluable to other patients searching to find out whether anyone is like them. But it also allows people to tell the world their stories – the good, the bad, and the ugly. There is never any sugar coating or editing down the experiences. (List of already published stories here.)
Here are two notes I got this week.
Sometimes I get a note that tugs at my heart like these words from Monica:
One of these days I hope I will have energy to figure out things like leaving a comment, or tweeting, or sending you my onset story! For now, I just have to say I saw your feet and a tear rolled down my cheek. That’s what my feet look like too. I am guessing they feel about the same…
Want to know what Dr. Horrible the rheumatologist in Chicago said to me this summer, when I showed him pictures like that–of my hands, wrists, elbows, feet, etc.?
“Those are just pictures. They don’t mean anything.”
I am so ill. I have been severely ill since March, in and out of the hospital. I FINALLY found a rheumatologist who would treat me—my fifth since March, seventh of my life. Someday I will write about him too–an angel…
Sometimes, I get a note from someone like Kathy who wants to help in the fight by sharing her own battle.
Does reading it bring out common themes to you? Waiting for a new treatment to be approved because everything else has been tried? Doctors who “can’t do anything” for you. Or symptoms that stubbornly continue even with a long list of medications…
Many thanks to Kathy for sharing story. And her feet.
My name is Kathy & I have been reading about your fight for RA. I am attaching a photo of my foot after surgery. I had the surgery on both feet. Some bones were removed in the toes & a pin (placed) in the big toe. I had a hammertoe that was taken out. All my toes were dislocated from this disease. I now have one toe that is turned all on its side. I just turned 61 and have been battling this since I was 42. I also have had surgery on my hands. I get lots of nodules. They are still swollen & the base of my fingers is all swollen on both hands. I have tried every new thing that comes out. It either doesn’t work or I am unable to take it. I am now on Actemra, Arava, 4 mg of prednisone, Neurontin, Flexeril, Cymbalta and Restoril for sleep. I try to always keep a positive attitude and it does help. I keep going through the pain as I walk on the treadmill each night. I am hoping I get a chance to try the new med coming out & hope it will help. I think my feet are beyond repair now though. The big lumps on the bottom are coming back. The surgeon said he couldn’t do anything for that because it is inflammation & you can’t be cutting into that. I have pain in my back & hips also. Feel free to share my photos & story. I am sending another photo of the bottom of my foot before surgery. I am reading all your info & appreciate all you are trying to do. I do have an understanding rheumatologist.”
- Painless Meme for Rheum Mates
- Ann’s Rheumatoid disease foot story
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- 20 Facts About Rheumatoid Heart Disease