Phyllis was an avid gardener and was part of a Yahoo RA group called RA-Factor that I have been in for the last 10 years. Needless to say we have all grown close. People come and go depending on circumstances but many of us stay with it for the support, information and for the freedom to complain about RA to people who understand the issues and do not take it personally.
She was the first person to offer advice and she enjoyed telling stories about Mr. Sticky Fingers - her grandson, making tags for people and sharing advice with the group.
She started feeling unwell in general with a cough and a cold, a headache and back pain. Her doctor suggested bronchitis and gave her an inhaler and prednisone. It was not the first appointment she had that was inconclusive. With RA it's easy to assume that any issue is connected to the inflammatory disease. It turned out that she was fatally ill and died a few years ago.
So this is a reflective post. I remember reading about morbidity and mortality in RA on the American College of Rheumatology website years ago when I was avidly searching for information. That was depressing though I know the outlook is better now. I kept finding new complications and issues that might occur, but managed to keep my anxiety level low by doing what doctors call watchful waiting. So I watched and I waited and nothing ever developed. That was one good way to make the anxiety level drop, even though it took many years.
I think anxiety is a real problem with a chronic disease and knowledge is a good way to dampen it. Things have improved in access to information. When I was diagnosed 30 years ago if you wanted info the sources were magazines, newspapers or books. Of course doctors were a possibility but I was feeling so shocked that I had trouble absorbing what the doctor had to say.
The internet has been a big help to me. It has made me much more informed and has speeded up my treatment because now I know the vocabulary and which questions are the right ones. It also helps me to know the treatments and what to expect if the medications are working.
Pathways to Knowledge
Now there are so many pathways to find the information that you need. It's like going from the horse and buggy to a spaceship - from library books to 30 gigabytes. Our first computer was a Vic 20. That means the memory was 20K and I think it had 3K of RAM. We could play Pong and it was fun.
We still have one of these in the basement
Support and information is now available at any hour of the day or night. That alone is enough to help us all to feel a bit better.