The number one aim of moving to Philly with my younger sister was to find a doctor, period. In doing that, I hope to eventually get my pain managed well enough to pick up one of the adjunct positions in the city. Poorly paid, no benefits, but just right for someone who's trying to navigate and with luck, escape the poverty trap of disability.
It's so hard to be optimistic. Since my geneticist diagnosed me I've seen nothing but bad doctors. I was especially saddened that not even a doctor who had experience in treating EDS was willing to treat the pain. I could tell she didn't trust me, but what I couldn't discern was why. Is it even worth it to try to get to the bottom of it?
My instinct tells me that once I see a doctor who's fully familiar with EDS, things will go more smoothly. I hope. Because if I can't find a doctor here, I'll have no choice but to go slinking back to Ohio.
2 comments:
I really hope you can find a doctor there. I've had the same problems with finding decent doctors, and we're considering a move, too. But it's an intimidating prospect.
I've found that just because a doctor knows about EDS or has treated someone else with EDS, it doesn't mean they'll be able to treat you properly. I had a horrible experience with a physiatrist that my geneticist sent me to after I told them that I needed "pain management."
The pain management doctor I'm seeing now is my best doctor so far, and I had to find him myself and fight to be able to see him. He's by no means perfect, but he'll do for now.
I don't know why that doctor didn't trust you. It doesn't even matter, because when you find a good doctor, you won't have to deal with that nonsense. It's not worth trying to figure it out, either.
I really hope so too. Moving from one city to another wasn't really in my budget.
I'm trying to put my ex-Doomatologists (thanks for the term) behind me, but I really need a redeeming experience right now. From anywhere.
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