curlywhirlycrippledgirly

[curlywhirlycrippledgirly]

I ended up taking leave from work. Which is really intimidating when you work a high stress corporate job. But the other day I was sitting at my desk and I realized that constantly feeling like I was one bad day away from having a complete mental breakdown was in and of itself a type of breakdown.

[curlywhirlycrippledgirly]

I’m pretty sure changing my hair has become one of my personal stages of grief. Along with inebriation, Googling, to do list writing, over discussing and under processing. With where I’m at right now I feel like I should start writing down how I’m doing otherwise (god forbid) I’ll need to actually talk about it with a real person.

I’ve never been very good with talking about my feelings. And even though I’m two years into regular therapy with an excellent support system, well managed medication, and a plethora of healthy coping mechanisms the thing I want to do the most is to find a way I can safely and anonymously trauma dump into the void without being concerned about repercussions.

This is where I would typically make some sort of joke about my suspected autism. My partner lovingly calls me a beeper, a spell and speak, an excel spreadsheet that learned how to love. None of that upsets me, mind you. I find it really reassuring that I have met someone who understands and embraces how I experience the world. But today I don’t want to make an autism joke, because one of the scarier genetic disorders I’m now being tested for has autism as an extremely common co-morbid diagnosis.

Here is what I know.

As of Tuesday I have officially been diagnosed as having a connective tissue disorder. Considering the first time I dislocated and needed to reset one of my own joints was before the age of ten it’s a miracle it’s taken me this long. The most likely diagnosis is going to be hEDS, but because I’ve also had some issues with my heart and other innards I’m being checked for some other scarier variations. If it’s vEDS my average life expectancy is 48. If it’s a different EDS I’m 87% more likely to develop dementia. Even if it is “only” hEDS it means that the daily, continuous discomfort that I have somewhat learned how to cope with on a good day, is going to continue to worsen over the rest of my life. Which is sort of intimidating if I’m going to be honest with you.

I’m planning to start a color coordinated list in my bullet journal of things the geneticist has suggested I start doing like taking salt tablets to prevent passing out when I stand up too quickly and compression shorts to keep pressure on my flimsy ass hips (and hopefully give my booty a little boost) I need to prioritize these for myself based on what issues I’m currently struggling with and then cross reference that list against how much I’ll need to invest in each quality of life improvement. Because god forbid I could make progress on figuring out the whole “my body is deteriorating at an uncomfortably fast pace” without also panicking about money, right?