I recently took a trip back to Vermont for my Grandfather’s memorial service. He was a good man. I miss him. He taught me to fish and to be patient; I still try to use one of those things every day.
While I was there, I saw my cousin for the first time in a long time. And she saw me, trying to push through the day. She contacted me online after I got home to pass on some medical information in case it was helpful…she’s been going through all the same things. Pain, mystery symptoms, long pursuit of diagnosis. She’s a few years older than me, and she’s been living with it a little longer. She finally got her real diagnosis, though. EDS. Ehlers-Danlos. It’s genetic.
So now, I get to go back to my rheumatologist and yell. My official diagnosis has been “fibromyalgia, hypermobility, heart valve dysfunction, B12 deficiency, POTS, etc., etc., etc.,” and doctors telling me that it wasn’t all connected. All of these things are symptoms of EDS, which the rheumatologist said I “probably didn’t have, it’s so rare.” Now that I have an established family history, I have more confidence to self-advocate. And yell. And replace doctors, if necessary.
My reaction to all this? Hell if I can put it into words. There has been a lot of crying and some laughing at the absurdity. It does change my treatment plan going forward, but my doctors can either get on board or get out of my way. As long as I keep my heart function monitored, it’s not likely to kill me anytime soon.
This will hopefully be my last medical blog for a while. I have some closure; Knowing why my body is falling apart means that I can move on to living my life to the best of my somewhat disjointed ability.
See you next time.