You're Doing Great!

Me with one of my besties, T, livin' it up in Israel
(before dysautonomia)
A few days ago, I spoke with a friend of mine (read: ex-boyfriend) who practices medicine in Israel. He started reading my blog and reached out to me to see how I'm doing. I was a) stunned because he read my blog; and b) shocked because he cared enough to reach out. As I went through my symptoms with him he reminded me that I'm lucky I received a diagnosis as quickly as I did (about a year) - for most people, it takes three or more years to get diagnosed. It's a diagnosis of elimination - it's not this or this, so let's see if it's this other thing.  It's my own private version of hell.  Tests. Exams. More tests. CT scans. Blood work. More blood work. More CT scans. More Exams.

At the end of our conversation, my friend said "you're doing great!" - he meant that I'm holding up well and using this blog as an outlet to educate and get my feelings out there. He's right, though. I AM doing great - so far on this journey, I've been my best advocate and I haven't killed anyone - so that's a start! But honestly, I know it could be so much worse. While walking into work today, I read a few updates to FB group I belong to: Dysautonomia Divas. Two women are in the hospital - one is fighting for her life. I read a statistic once that said 25% of people with dysautonomia die. Holy shit: 25%! That's a lot of people. That statistic didn't tell me how many of those people committed suicide vs. dying from dysautonomia-related complications. But still. 25%.

Yet, I'm not in the hospital (right now), my vitals are relatively stable. I may need to take a break and lay down for a bit when I get really exhausted but that's usually the extent of it. Well, aside from feeling sick, that's the extent of it. Either way, I am doing great - I'm doing well. I have my good days and my bad and I know it could be much worse.


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