4 3

So I left at 5am and it was torrential downpour the entire way to kansas city. I left with an hour and a half extra time to get there, and was still 5 minutes late.

I hydroplaned a couple times, really scary when it was in bumper to bumper traffic. My car almost didn't stop, and the force of one quick stop broke the bolts on my exhaust pipe, so I have a dangle pipe needing bolted. Parking was like a nightmare, plus they charged me 3 dollars despite my handicap placard :/

Doctor Butler the Geneticist was unbelievably thorough. He asked about my entire ancestry like 6 generations. My aunts, my cousins, my uncles, my great uncles and aunts and their kids. Then he examined every single inch of my body. My head is the perfect circumference! He scored me 6 out of 8 for the hypermobility test, though I'm more hypermobile than that test, but it only checks certain places for hypermobility.

He said he's 98% sure I have eds, but 100% sure I have some sort of connective tissue disorder. That's a relief because I'd heard from others in the local EDS forum that he was mean and didn't believe in EDS, but he was quite pleasant and listened well as well as took me seriously.

He said I have enough clinical evidence to claim medical necessity for insurance to cover the test and he's testing 26 genes (normally it's 20)

So now my saliva is off to california, the only part of me that'll ever see it, it seems.

Torrential down pour halfway home, with a rattling crunchy pipe hanging off my car.

Stopped at cracker barrel because Papa and I used to always stop at cracker barrel after doctors appointments and whenever I'd go to missouri I'd eat it with uncle shorty, so now it's kinda a tradition.

Got home and took a nap.

Ta daaaa

LadyAlyxandrea 8 Aug 23

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Glad you are getting help! And your adventure quotient is quite high - hugs from all of us here to you.

Ohub Level 7 Aug 24, 2018

I am glad to hear that you are doing better. That you are having tests and that it was a pleasant talk with the Dr. I am concerned for you and the EDS I hope all works out for the best.


Yay! Good job.

I saw my pain specialist today and mentioned my niece who has EDS and she said "Oh we have several patients with that" which was nice to hear - they actually know what it is. However she's at a loss as to how to treat the pain from it. Which is awful.
But at least she admitted that.

My head circumference was a bit larger than normal - but they were pretty sure it was my hair and they weren't going to shave me bald to find out. lol

I enjoyed getting my genetic testing. All the tests. I keep hoping we'll find out in the future what the gene is that causes breast cancer in my family. (For the next generation when maybe they can do something for it!).

He is checking my breast cancer genes, too lol

I'm excited for my results. 1 to 3 months.


I have hydroplaned before is one of those things that should be an amusement park ride. Always nice to have a doctor that cares with a good bedside manner.

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