As I’ve mentioned quite a few times, I have hypermobile joints. This is due to faulty production of or structure flaws in collagen. It’s something I inherited. It’s something that can’t be cured. It’s something that impacts my daily life. It’s also something that isn’t always well understood by medical professionals. Case in point, the family practice clinic of UAB understands little about the condition in general. As it relates to me, they understand next to nothing.
The Wellness Center sent a medical release to UAB for my doctor to fill out. I’ve been working with my doctor to figure out how the condition impacts my health & daily life. Was it my doctor who filled out the medical release? No. And did I get the medical release? No.
I did get a call from the clinic telling me that the release was denied because I have a “skin condition” that causes my skin to “tear so easily”—an aspect of the disease that isn’t that bad for me.1 It’s an aspect that isn’t really in my chart at their practice, so I figured that they googled it and went with what Google says it is known for; ignoring that the most common form mainly involves joint hypermobility. I told the person who called that I was joining to continue to practice my physical therapy exercises. I’m essentially going to treat the disease and to attempt to prevent future surgeries.
I know the types of exercise that are safe for people with Ehlers-Danlos: low resistance, high repetition. Recumbent stationary bicycles, regular stationary bicycles, pool exercises, Pilates.
More importantly, I know my own limits. I have to. My safety, my life depends on my ability to recognize what my body can go through safely.
But a doctor who I have never met, who has no familiarity with my condition or my history has decided that I can’t do something that I need to do.
Oh, but I can get a new release form from the Wellness Center & I can schedule an appointment with my doctor to get the release approved. Of course I have to call back at a later time to do that because they couldn’t transfer me to scheduling. In the meantime, I get to pay for something I can’t even use.
Oddly, yesterday I was happy that someone unfamiliar with my chart was making calls on my care.
Yesterday, I tried to schedule an appointment for another 3 month prescription for my birth control pills. Because of my increased risk of clots, they require high risk medication appointments for the prescription. They decided to call it in instead of see me. I thought the idea of appointments every three months was silly to start with, so I assumed that they’d changed their minds on it. Now, I’m guessing that someone didn’t review my chart properly.
I guess a high risk of blood clots is safe to ignore, but if I might tear my skin or, more likely, tendons & ligaments, then must be stopped. Something that could literally kill me is safe, but something that could happen if I just walk across the room is too risky. Welcome to Bizarro World.
My skin does tear more easily than it does for people without the condition, but my level of skin involvement is mild compared to many who have Ehlers-Danlos. ↩