After seeing multiple specialists and doing multiple health tests to rule out a million different things (Lupus, Celiac, tumor, Autoimmune Hepatitis, etc.) my PCP and I have finally managed to convince the local dysautonomia specialist that he should grant me an appointment. Apparently, he’s even interested in using me in his research study. But the appointment they gave me is in June, 2017.
I’ve been trying to tell this doctor that it REALLY REALLY REALLY seems like I have POTS and that it is ruining my life and will he PLEASE give me a tilt table test for most of this year. Now, unless I get called in for a cancellation appointment, and can arrange last minute child care, and find an adult to drive me home after the appointment (because driving post tilt table test is not a good idea), it’s going to be another six and a half months to even get a confirmation diagnosis, nevermind start treatment and see if anything will work to ease my symptoms. There are some lifestyle changes (like eating ALL the salt) that I can do on my own, but I also need to avoid doing anything that’s going to screw up the diagnostic process.
And I know part of it is just the result of him being the only doctor in this specialty in this half of the country...but I can’t help but feel bitter when I TOLD THEM SO. If they (he and his staff) had taken me seriously from the start, I would have already had an appointment by now.
I’m unable to work more than the couple hours a week I supervise the nursery at the local Unitarian Universalist congregation. My Etsy business is all but dead because taking care of my kids is the first priority and after that I’ve got no spoons left for designing/uploading/promoting. Without a diagnosis, I can’t even begin to apply for any sort of disability benefits. It’s not like I’ll qualify for federal benefits anyhow (because I was the SAHM while the ex pursued his dreams and unless you’ve worked a certain amount and paid into the system, you can’t get benefits) though I might qualify for something at the provincial level.
And I’ve got my ex putting me through divorce hell on top of everything else and subtly threatening to take the children away because of my illness. This year can just douse itself in kerosene and light a match (because I don’t have the energy to burn it down myself).
Never get a chronic illness.
If it doesn’t ruin your life, getting a damn diagnosis will.