Wednesday, June 28, 2017

more things about my EDS

I have been photo journaling on good days.
So now i can actually see my hyper mobility and "prove" the brighten score without having the physically do it every time.

I've opened up to some people at work and told them about my newest DX (fibromyalgia and hypermobile joints with a referral to see a geneticist).
They have been fantastic about it!

At this point, i'm treating my body like it is hEDS, because i'm pretty sure that's what it is.. possibly with a cEDS overlap.

One thing i will say about my Dr..
He has been open so far only on some details that i've shared with him.. showing him the hypermobile fingers, talking about possible cardio issues because of my family history and possible heart palpitations. He does understand that there are so many things that go with EDS, that it's like a big pie, and over time we're going to chip away things that it isn't in order to find out what it is, and everything that goes with it. (he actually used that analogy, i stole it) ;)

The thing I didn't like is that when i mentioned the possibility of cardiology and neurology appointments (different shooting pains, possible nerve problems, told him about the weird radiating shooting feelings i've had on the right side of my head twice now, that my fingers and toes get cold easily- bad circulation?), he didn't see to care as much about that right now.. which to me, at least cardiology would seem important, since it deals with my blood pumping muscle. Am I wrong to be concerned about that at this point?

Also when i showed him my varicose veins and told him about all my stretch marks, he said "well, the thing about those is lots of people have them". So does that mean i'm not supposed to be concerned about them?

I think maybe he could be overwhelmed with me as a new patient. ;) He knows about EDS and, of course, has seen many of them himself. So i could be his guinea pig.. who knows. Going to give him the benefit of the doubt.

Just so many things I'm thinking about.
Thanks for listening!

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