This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.
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.
Anet has had rheumatoid arthritis for 30 years. She spent the last 20 working full time in market research. Now health advocacy and the quality of life with chronic illness are major interests. “It’s great to have time to blog and tweet and go out for lunch”. Follow her on Twitter @anetto
- More from Here’s Your Gold Watch – Rheutired
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This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments. 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 Read More…
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