Since my visit with him last month he had received the visit notes from the geneticist which diagnosed my Ehlers Danlos Syndrome. Prior to this I was only diagnosed with joint hypermobility syndrome so I think he was still assuming that my POTS had an unknown cause and wanted to do some further testing.
He walks into the room today and says, "Ehlers Danlos huh." His voice and body language spoke defeat. Not his own, that he couldn't use me as some mystery case lab rat, but rather mine. He had such empathy in his voice as he spoke about how young I am and that there is really nothing more that we can do other than what we are already doing. Unfortunately what we are doing is not really helping much.
The young part is relative. At 41 I am not young per say, but in the grand scheme of life I could have a really long time left to live with this. I try to think of everyday as a new beginning and hope for the best in each one. But, that is a whole lot of possible bedtimes hoping that tomorrow will be a better day and that I can muddle through. A daily dig for the diamond in the rough.
He had doubled my beta blocker last month and that was NOT working out at all. The side effects were more than I was able to deal with. I felt like I had zero blood making it beyond my knees and that is not good if you want your brain to have even a random firing, not to mention the endless chest pain. I did learn during that time that I am better off if I take my dose at night instead of in the mornings. It helps knock a bit of the top off of the early morning symptoms when I am usually having my highest heart rate issues. Small progress is still progress. Any little bit helps.
Since my DNA is not going to be recoded anytime soon and I will continue to produce crappy collagen, I might as well just get use to this craptastic syndrome infested body of mine. I suppose I had better just pull up my big girl "compression stockings" and get on with it.
It is never a real joyful hope-filled experience to have it reconfirmed by yet another specialist that this is ~ Forever. However it is helpful in making me realize that I need accept my limitations and tackle them head on. Okay, tackle might be a little overambitious. See what I mean, limitations are so hard for me. How about slingshot rocks from the couch.
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