| Thanks for your several thoughtful replies. I'm certainly engaged with my medical professionals. I see about 7 docs routinely! Saw my primary care physician just this morning. I'm more engaged now that I'm married (nearly 2 years now), before I mostly grin and bared it. I also have a genetic condition that affects my liver, but thankfully so far, it's just a monitor it quarterly or so. For, me, at only 38, my cervical and thoracic arthritis has been my greatest challenge. My genetic condition doesnt cause me problems day to day, and can be easily managed with diet, and if need be, scheduled phlebotomy. The arthritis, I cannot control. Most meds dont work, and the ones that do put pressure on my liver. Opiates wouldn't even really help me, I think, because I dont think they help with nerve pain which is about 95% of my problem. I have a sufficient pain tolerance I can ignore a constant burning sensation along my spine. I cannot ignore the very sharp shooting nerve pain I get that travels down an entire side of my body. I can cope with that to an extent when it's constant. Where it really gets bad is when I get random sharp stabbing pains in my arms and legs. Bad enough I've bruised my knees hitting them against my desk from reflex. Like I said, I'm working with my various docs to manage things, but its tough.
Medically, I see:
Primary care
Gastroenterologist (also his nurse practitioner)
Hematologist
Neurologist
Orthopedist Point is: I'm trying to make things better, but what a lot of what afflicts me cannot be made better, and has to be managed, and I'm trying. Not always succeeding, but trying. |
I was fortunate to be diagnosed late in life with a relatively mild form of a serious genetic disorder. This meant I had my own mental models already for what was going on in my body before I got a label.
It allowed me to bring fresh eyes to the problem space and I've healed a lot when doctors say that cannot happen. The only real downside: The world is quick to act like I'm making that up and call me crazy.
I've had good results healing nerve damage where I had issues like numb spots in my feet, so I'm convinced a lot more is possible than is currently believed to be possible.