Sunday, April 27, 2008

My Road to Health

Friday's appointment with my doctor in Tulsa went very well. Although I didn't see him until one hour after my scheduled appointment time, he took me seriously and spent quality time with me. He agreed to the Antibiotic Protocol (AP) and even ordered Minocin at my request, even though he recommended doxycycline. When I told him I had "broken up with my rheumatologist," he wrote a replacement prescription for my prednisone and didn't criticize me for the difficulty I have had in lowering it's dose. He recommended some vitamins and herbs, which lifts him up a notch in my esteem; our bodies need more than man-made chemicals whirling through them. When I requested another blood test that he thought was unnecessary, he still agreed to it. Finally, I'm on a path that will lead to the road I think I should be traveling.

Bottom line: Dr. B. considers himself the "coach" in my health care, while I'm the "team captain." That's exactly what I want. Some people want their doctor to tell them exactly what to do so that they can follow a series of suggested steps with minimal (if any) study or research. The doctor knows best. Not me. I spend hours, days, weeks reading books and scanning the Internet. I make my well-known lists and answer my own questions. By the time I finally see a doctor, I know the route I want to take. I want the doctor to consider that route and give me insight, not dismiss my extensive research.

The rheumatologists I've seen dismiss AP. They only want to prescribe strong medications that knock out my immune system while they gloss over the fact that those same drugs greatly increase my chance of cancer and death. I'm glad to find a doctor who will consider a different route, even if I have to travel two hours to see him.

In all this posturing about my medical decision-making prowess, I recognize that my decisions have not, to this point, led to health. My mobility is severely limited and my stamina is stuck at an all-time low. Somehow over the next year I hope to find a crossroad between idealism and realism. I'm hoping and praying that this new road will be the road back: back to vitality, movement and spark; to living instead of merely surviving.

5 comments:

Anonymous said...

good for you ... taking charge! hope it all works well for you. kathleen :)

Angela said...

Thanks! I hope I'm on the right track. Time will tell...

Jopper said...

Hi I am a teacher working in Canada and I am currently teaching special education. I am trying to find out information about teaching accommodations for children with Dandy Walker and I have not been very successful. I have read your blogs about Hannah and have picked up some strategies. I am creating a seminar for other teachers about Dandy Walker and would really appreciate any information you can share with me.

Thank you in advance,

Julie

Angela said...

Hi Julie-
I'm not surprised that you have had difficulties. The severity and symptoms of Dandy-Walker vary immensely from person to person, so one specific program would be tricky. Do your students/potential students have hydrocephalus? How old are they? Do they have any other diagnoses? Or are you just trying to come up with a general program that you will then tailor to each student? How many students?

If you e-mail me privately at solomongirls@yahoo.com I can go more in depth than a blog comment allows.

Also, I've found that the members of dandy-walker@yahoogroups.com are very diverse and informed.

I look forward to hearing from you,
Angela

Tara R. said...

That is fantastic! Sounds like you found a good partner in your RA treatment. Good luck!