The 400 visits in the title is what it is because for seven years I went to the doctor's office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.
After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said "Why aren't you doing the injecting yourself?" A classic "Had I But Known" was my answer. If I had had the faintest hint that I could have been doing it on my own I would have.
That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.
Thinking of how many hours I wasted and how much money it cost the health care system was enough to turn me into an advocate for change. This number of unnecessary visits is a healthcare horror story. The lack of a short conversation not connected with direct symptoms, and a patient who didn't know enough to question the status quo produced this result.
Now I aim to be an empowered patient capable of managing most of my care with a minimal amount of help.
After making a major long term effort to educate myself, to learn more about my health issues and to find out how the healthcare system and people in it work I can manage this with some help and support.
A source of support I found in addition to my doctor is patient communities. They have been a good source of reliable information. One group I've been in for ten years has many experienced patients whose stories are similar to mine. As an example when I asked them about effective treatments for mouth sores they had good ideas. I suggested one of these to my doctor and although it was new to her after looking it up she prescribed it - a great choice and it worked almost overnight. It helped me to feel that I am now able to collaborate with my doctors.
The old me would have meekly gone home and tried the mouthwash she initially suggested that was actually contra-indicated because of my Sjogren's Syndrome. That would have led to a repeat visit.
Things are working well now but I fear starting over when my doctors retire (all of them are over 64) and I have to build new relationships.
