In the 80's many doctors still used the old treatment pyramid.
The bottom step of the pyramid (behind the camels) consisted of Aspirin and you had to go through all of the less useful drugs to get to the top and graduate to an immune suppressant drug or DMARD like gold or methotrexate. This meant that by the time you were prescribed an effective drug, you already had joint damage. This approach is now obsolete.
Now with (ideal situation) early aggressive treatment most of the people I see in rheumatology clinic waiting rooms look quite healthy.
Maybe not as healthy as the Canadian women's winning hockey team shown above but now, when I am at a rheumatology appointment I look around and wonder if the people I see are patients or healthy friends who are waiting for patients.
Back to the First Class Care Team
In 1982 when you started on a "dangerous" drug for a serious illness like RA you were often admitted to a hospital, as much for the education as for the monitoring, and that is where I met the team of health care professionals who have done so much to keep me going, even as they changed over the years. Future posts will go into more detail on the various types of help I received.
The physiotherapist stressed exercise and also introduced me to paraffin wax baths for the hands. She acted like a cheerleader some of the time and helped with hope and optimism. The occupational therapist told me about resting splints and wrist braces to help with the pain, and introduced me to devices for help turning keys and knobs and opening doors, and also for help in the kitchen.
A right angled knife is my #1 kitchen device
The pharmacist talked to me about the new drug regimen and precautions to take. I was sent to a foot clinic where I got orthotics to help with my sore feet. Without orthotics I limp, so I always wear shoes. I met a social worker for advice on how to proceed with work and life.
Later I realized that a nutritionist would be a big help also and she solved a problem that I had even before I developed RA.
It's wise to find an excellent dentist and a dental hygienist you can trust. Having a long term consistent relationship means they will spot changes you might not be aware of, and they'll spot signs of Sjogren's Syndrome early. In fact there is a suspected link between rheumatoid arthritis and periodontal disease.
You're the one who owns the chronic illness, so you'll want to be on the lookout for good professionals to help you deal with it. If that is not affordable there are websites where you can get specific advice and tips that are general. I'd suggest using the advice and tips you can get from the self management courses to find resources. The official sites of the organizations that deal with problems you have are also learning areas. I'm thinking of The Arthritis Society ,the National Institute of Health ,the Sjogren's Syndrome Foundation and the Sjogrens Society of Canada to name only a few possibilities.
They're not all like Dr. Kildare
Of course your doctor will have a starring role on the team and may have good suggestions for other health professionals and resources that will be useful to you. You can't just leave it all in his hands though - you need to be as proactive as you can manage to be and work on educating yourself about your health.
You have to be the captain (or co-captain) of the team and also assemble them, with help and advice. It's great to count some family and friends as team members, but watch out for the negative ones, or those who say you should just get out more to feel better.
I would also like to mention the support of online groups and forums as well as Twitter as a potential big help. If you pick the right support group you may make friends for life, and they know exactly what you're talking about when you are having trouble dealing with symptoms.
Friends hanging out near the hospital