As Molly can probably testify, I’m emotionally exhausted. Now that I’m back home, I’ve been tutoring some and have even tried to go back to work. Given how many things I dropped in a four hour period and the fact that I started crying when a coworker asked how things were going, I’ve concluded that I’m not being lazy just sleeping all day. I really need the sleep and time to unwind. That’s why I’ve been incommunicado recently.
What I learned at the Clinic of St. Jude (briefly):
- I have Ehlers-Danlos syndrome, (type III or IV). It’s not an absolute diagnosis, but I’m convinced. And I’ve decided that that’s good enough. It’s probably the cause of everything that I have.
- I suffer from hyperdynamic circulation. This is a direct result of EDS, and I now have scientific measurements for this.
- I suffer from extreme hypermobility. Not only do I meet most of the Beighton criteria, but I also have sacroiliac joint dsyfunction and have winged scapula. In essence, my body is simultaneously falling apart and holding itself together. My sister says that I’m a living jellyfish.
- I suffer from a central sensitivity disorder. My body is sensitive to things like sound, light, food, dust falling, who knows what and sends out major alarms. Some of these things are internal (like the GI symptoms) and some of them are external; some of them physical, some of them not. It belies simple logic.
The doctors have suggested physical therapy and moderate cardiovascular fitness (while wearing tight-fitting garb) to help with some of this. There’s not a good treatment for EDS yet, and they don’t know a whole lot about it.
I have several consultations scheduled over the next few months, so it remains to be seen what comes of those.
It’s been rough because they messed a lot of things up with scheduling and records transfer and the like. Half the time I felt like I was banging my head against the wall or trying not to throw a huge temper tantrum.
But it’s liberating to have a solid diagnosis and to know that I’m not making this up or that I just need to try harder. I did end up becoming more bossy that I prefer, but everyone agreed that that was to my absolute benefit. And Dr. Leo pulled through for me, advocating for me from afar. My coordinating physician at the clinic mentioned that he had talked to Dr. Leo over the phone and that he seemed “really on top of things”.
That’s the short story. When I’m less exhausted, I’ll probably write more.
Thanks for the continued prayer and well wishes. And happy rare disease day.