Editor’s Note: This post was last checked and updated 414/19. Thank you.
I’m finally going in for autonomic testing. When I first went to my vascular cardiologist, he didn’t want to bother, because my symptoms were so pronounced that he felt he should just treat me for them. Since my symptoms haven’t been responding as expected, he changed his mind and I’m going to UC on Friday to have a tilt table test, sweat test and a few others they haven’t really explained yet. In order to do the testing, I have to go off most of my meds for a few days beforehand. I also have to travel 60 miles to complete the testing and without all the medications and my oral rehydration salts to keep me propped up, I’m definitely not going to be in any shape to get in the driver’s seat. Hell, I’ll be supremely lucky if I can manage to walk from the car to the exam room.
What really has me bummed is that Valentine’s Day is my wedding anniversary and I talked my husband into taking time off for it. Now, instead of enjoying his vacation time, I’m going to be spending it dizzy, nauseous, sleepless, and more than likely grumpy and stressed out. Wednesday, the first day I will be without my meds, we will be attending a show at Playhouse in the Park called Million Dollar Quartet. Hopefully, I won’t be too POTSie that first day, but even missing a single dose of ORS or midodrine can cause me dizzy spells on standing, so the odds really aren’t in my favor. As I scheduled the tickets before I scheduled the testing, I reserved regular seats, so I can forget about relying on my wheelchair. Besides, I always end up in so much more joint pain when I use my chair; probably because I’m stuck in one position for so long and it’s not a particularly comfortable one, despite added padding. By the time of the performance, I will have missed a dose of florinef, all three doses of my midodrine for the day, and my whole liter of ORS. I won’t even be able to wear compression socks. To make matters worse, I’m also barred from taking any and all antihistamines, so I will be out in the world of perfumes, air fresheners and cleaners with absolutely no protection. If I actually manage to make it through the performance, it will probably be a miracle.
I can’t even imagine where I’ll be by Friday. It’s been so long since I felt that bad that I can barely contemplate it. The brain purposely protects us from being able to fully recall such experiences. The symptoms were crippling and the primary reason I was bedridden for so long. It seems inconceivable that I’d visit that place again voluntarily, if even for a few days. I don’t want to go back there for even a few moments, which is why it took the doctor a year of pestering me into it. What’s kept me from saying yes, is that he never could provide me with an answer as to how these tests might provide me with a better outcome. But I want to be a compliant patient and I want to make sure we have all the right answers and the right solutions to go with them. So here I am, all signed up for more torture, two days after our anniversary, during my husband’s vacation time so he can take me.
Anyway, I’ll update on how the whole thing went once I manage to get myself straightened out from the whole ordeal. I’m going to try to get some pictures of the equipment and that sort of thing if they’ll let me, but you know how they are with privacy laws and all that. In the meantime, keep your fingers crossed for me that I’m being a pessimistic worry-wart for nothing and that everything turns out just fine.