On Thursday, February 16, 2023,
Mom and I traveled to Houston Texas and back. I had an appointment with Baylor Genetics. (THAT WAS A LONG DAY. Left home about 4:15 a.m. or earlier and got back around 4:30 p.m. at the latest.)
In July 2021, I got diagnosed with Marfans syndrome by Oschner in New Orleans, they wanted me to go to Baylor genetics as they are the “experts”.
it started with Mom and I leaving the house at 4 A.M. to drive all way to Houston Texas in time for a 9:30 a.m. appointment. at Baylor.
The appointment went okay- basically talked the same medical mumbo jumbo routine I have done my entire life at every doctor’s appointment. Talk about what Marfans affects, talk about the different features of Marfans, etc. Looking at my flat feet, my inverted ankles, my protruding chest bone, etc. looking at my surgery scars, blah blah blah…stuff I can probably do in my sleep as its such routine. They did a “Checklist” of Marfans features, I don’t know what the highest number is, but anything over a 7, they considered Marfans, I am an 8, so I barely made the cutoff
Afterwards, I had to become a human pincushion and give 2 tubes of blood for a more comprehensive genetics blood test as I have “a gene deletion” and they want to see what genes are affected or something like that.
I go back on March 23, 2023, to get the results of that genetics test.
anyway, of course it’s cold and nasty outside this weekend, so besides being sore from the long ride in the vehicle yesterday, I’m aching because of the weather outside too- Human Barometer Strikes again *insert eye roll*
It is so funny…well Ironic funny, not ha-ha funny…
Mom and Dad didn’t complete the genetic testing when I was little because the Scoliosis popped up and they focused on that instead, and they didn’t want my childhood to be stuck in doctors’ offices and to have a “normal childhood” as much as possible. Which I did and I am thankful for that.
But FastForward years later and most of my only socializing and outings is …wait for it…DOCTORS OFFICES!
Irony is soooo much fun, isn’t it? *sarcasm* God definitely has a sense of humor.
(February 19, 2023): “
Question of the day:
Why can I not wear spaghetti strap tanks or low-rise jeans without my back hurting?
So weird! Because in my good (less pain) years 2013-2017 I didn’t have this issue.”