Well, hello there...
It's been a long time...
a really, really, really long time.
As I sit here, sipping on my peanut butter whiskey (made by Screwball, go check them out - I hate whiskey, but this stuff tastes like the inside of a Reese's peanut butter cup!) I realized that I haven't posted in forever and in these crazy times, what else am I gonna do? It's not like I don't have the time...I might not have the motivation or the talent, but when has that ever stopped me before?
It has been really interesting to go back and read thru my earlier posts and some of the comments that I missed. Sorry folks, if I had seen them, I would have actually responded.
I could post how many different ways that this year and last year have sucked, but quite frankly I don't have the energy. I am thankful that I have my family, a roof over our heads, food in the pantry and that the hubs and I still have our jobs.
One of the major standout life sucking items tho - the girls and I got an interesting diagnosis the end of 2019 that we were trying to get our heads around before the ol' poo hit the fan. My youngest has had various issues over the years involving her joints and chronic pain which led us to a geneticist and the verdict of Hypermobile Ehlers Danlos syndrome.
Fun fact...it's genetic...another fun fact, I gave it to her...and her sister...kind of...
Went to that appointment with the geneticist armed with information - paternal history, photographic proof and prior doctors appointment, ready to prove that the hubby (long story and prior visit to geneticist) did this to her...karma - you are indeed a bitch and you have very big teefs.
While this has connected a lot of dots for them and myself about different issues we have had over the years, it just fucking sucks.
As I continue to research and go down the google rabbit hole...articles, videos, support groups...it doesn't seem to get much better.
Rare(ish) disorder - check (1 in 5,000, thank God we don't have the vascular kind!)
No known cure or treatment other than management of symptoms - check
50% chance they can pass it along - check
Anxiety, depression, early onset osteoarthritis, osteoporosis, dysmenorrhea (painful periods), chronic pain, chronic fatigue, ETC...(these are some just our "main" symptoms). - check and check
It's like the gift, that keeps on giving.
Meanwhile for the oldest one...not quite hEDS, but undetermined Hypermobility Spectrum Disorder with 4 out of 7 markers for Marfan Syndrome - Marfan Body Habitus.
Good news- everyone one had an echocardiogram and everyone's hearts look good!
Bad news - we still have a connective tissue disorder with semi-defective collagen...collagen that just happens to make up 30% of the human body...
Ok, enough of the pity party. Just needed to grab the festivus pole a little early and air this grievance.
