Within the first few months of our arrival at Charleston, our last base before the Mr retired from the service, I had to go see the doctor for something. I honestly don't remember what, but since I had had two surgeries in the year before that appointment, maybe that was a factor. Because of my husband's job on base, we were both assigned the flight medicine clinic, rather than the more general family practice clinic. The doctor I saw used to be the colonel in charge of this clinic, but had since retired and gone back to work in the same place as a civilian. He was a nice enough fellow, and fairly perceptive, but we didn't communicate well on that visit. In fact, it went so poorly, I didn't see him for a full year after that, even though I had plenty of things going wrong.
What went so wrong? He correctly recognized that I was a complex patient (and was too kind to properly term me a "hot mess"), and he suggested I go see the case manager down in a different section of the medical facility. I went down as instructed, past the crowded and depressing family practice clinic, to a small office down a hallway, and I spoke with a woman I couldn't remember clearly if the fate of the world depended on it. At no time did anyone fully explain why I was there, and that this was actually intended to be a benefit for me. I thought I was being punished, and pushed off to the purgatory where they send the complainers. I never called this woman again, and spent a year being offended and hurt that the flight surgeon refused to help me. It was only after I had to go in, as so many things were absolutely falling apart (injuries and diverticulitis), that I finally got to reattempt to communicate with that doc. We got along much better after that, but I think so much time was lost that it set back a lot of progress that could have been made. I believe he was on track to discover some of the autoimmune conditions, but the rocky start prevented it.
Over the weekend, I got a letter from my insurance company. They are now offering case managers in a new program, and they reached out to me to see whether I wanted one. A person would be calling me to ask whether I wanted to join the program. All that mental anguish of the first year in Charleston came flooding back. My first reaction was to experience fear that this would be a person specifically assigned to deny my coverage, because I see so many specialists. When she called on Monday, I expressed this fear, and she swore that was not her job. She is trained to handle complex cases, and is really there to help communicate and coordinate. And she said she wants to help me advocate for my needs. We arranged a longer conversation for this afternoon, and we actually talked for two hours. She had long surveys she had to go through with me, and none of them had easy answers. We covered a lot of ground, and it is a promising arrangement.
Near the end, I did sort of test the "advocate for you" aspect of it, and I discussed how I was pushed off and delayed when I asked my previous primary care doctor and rheumatologist about getting a handicapped parking permit. They both tried to say that would prevent me from being active, where I believe it is the opposite--if I have to park hell and gone from an event, I don't go to those events. I stay home to avoid wearing myself out in those situations. This case manager was on my side of it, and agreed that it would make me safer to have better parking access. When next we speak, she has promised to help me get with a physical therapist (or maybe she said exercise physiologist?) who can evaluate me and move on that process. You know, having someone assigned to go to bat for me might not be the scary thing it seemed like all those years ago.
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