When I first realized that this Arnold Chiari Malformation thing was going to knock me on my behind, I had a poor concept of modern medicine. On one hand, I believed that doctors could give you a pill and solve things like pain. On the other hand, I believed that pain medication was inherently dangerous. My early doctors tried to help me and I resisted the help without realizing what I was doing.
My big thing was the fear of being awake all night alone and in horrible pain. Therefore, I decided that bedtime was the only time when I would take the medicine. When I started off, 30 day pain prescriptions would last me three or four months depending on how much was prescribed per day. I knew I was in for a long haul and I didn't trust my early doctors to get me through it.
The first important change came when I changed primary care physicians. From here on, I will be calling this doctor who has been so central to my life my PCP or the new PCP. First of all, I have to tell you that this PCP is a woman. I am one of the most physically shy people you will ever meet but my PCP has never once made me feel uncomfortable. She happens to combine two qualities I need in a doctor. She is tough but uses a soft delivery that disguises the toughness. The thing that makes her so tough is that she is smart and I know that she is exceptionally devoted to her patients. If she tells me to do something, it's for a good reason.
My PCP prescribed meds differently from the old one and the original neurosurgeon. The pain pills were not "as needed" because she knew I took that too literally. As needed seemed to translate in my head as "take when you think your heart might explode from the pain." Instead, her instructions read something more like "take once every four hours up to a maximum of four doses a day."
Another thing that makes my PCP tough is that she shows no fear. I was summoned into her office once because she thought she had given me more refills than she had. I thought I was being summoned to be accused of being an addict which happens to be a personal phobia. (I have a phobia about getting addicted and another about being accused of addiction.) She actually wanted to clear up what she knew was someone's honest mistake and to reset things so we both knew exactly where we stood. I learned a lot from her ability to let me express anger without letting it seem to touch her.
My PCP decided that she had reached the end of her knowledge of pain control meds and referred me to the pain doc. The pain doc is a pseudonym that I use for any number of doctors who belong to a particular practice. Despite some early false starts, my pain doc and I meshed quite well. The pain doc restored my holistic view of pain control. I was given "as needed" medication along with meds meant to be taken regularly. The pain doc praised my outlook that pain control is like a machine with many knobs. Turning two or three knobs to the right spot is better than attempting to dial one up all the way.
There are also some truisms that got "official" medical approval. Mental state is a big part of pain control. You will hurt more doing unpleasant tasks than during pleasant activities. If it hurts, you should stop it although there are many exceptions to that rule. Stress increases pain so measures taken to reduce stress can reduce pain. The ability to meditate is a powerful stress reducer but anti-anxiety pills are another way to turn the stress knob down.
Finally, my neurosurgeon has done all he can for me at the moment. He managed to save me from likely death by undoing the mistakes of the previous neurosurgeon. He also did an amazing job stopping the progression of the symptoms we believe are directly related to Chiari. When medical science progresses far enough, I expect contact from a nurse at his practice to let me know.
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