I spent half the day at the Cleveland Clinic yesterday, getting poked and prodded and twisted and pulled. This is all part of my on-going research as to what the hell has happened to me in the last year and why am I so strange as a general rule. In order to catalogue my strangeness for this doctor in vascular medicine, I made a list of it. Starting at the top, I have or have had:
- three episodes of collapsing in the sun
- one vasovagal episode in which I collapsed in the shower the day after I gave birth to Isaac
- TMJ
- sinus malformations
- deviated septum
- 8 wisdom teeth (hence, twice as wise)
- hiatal hernia
- chronic GERD
- gall bladder removed
- bicornuate uterus
- 5 early miscarriages
- 1 22-week preemie lost to chronic placental abruption
- 2 high risk pregnancies that made 36-37 weeks, delivered by c-section due to transverse breech position
- hyperextending elbows
- bendy fingers
- hyperextending knees
- sore hips
- sore knees
- chronically dislocated lucky toe
- painful toe joints
- torn ligaments in ankle
and… last but not least… a year of dizziness, labyrinthitis, migraine and POTS.
So, what does it all mean? This is is still inconclusive. The doctor yesterday is in vascular medicine (vein-related) and was checking me over for Ehlers-Danlos syndrome, which can cause many of the above. She was especially interested in my purplish toes, mottled legs, and the "slow-filling" of the blood in my hands. She enjoyed my party tricks (bending my elbows inside out, etc.), and agreed that there was enough weird about me to check further. Apparently (I didn't really pay attention to this part), some people who do have Ehlers-Danlos syndrome, have a really bad kind, which can cause spontaneous rupture of major organs and instant death. Indeed, my ripe age of 43 leads her to believe I DON'T have that kind– "People who have it don't usually make it this long," she explained. Ah. Well, good news, I guess, because I'm still here. I think I really really don't have it. I asked whether there was any point in this exercise, and she maintained that there was. She said, "If we know you have it, we would approach you differently, avoid invasive procedures at all costs, and you would live your life differently too– you would not lift up the couch or lift weights or something like that, if you knew that something could really rupture." And then she mentioned a patient she had, with no symptoms and three normal pregnancies, who at age 36 suddenly showed up with bleeding inside a kidney. Okay, okay I'll check!
So she's referred me for a little more research. She wants me to get an echocardiogram of the heart to make sure I don't have a stretched out or messed up valve there. (I thought they checked everything back at the radioactive blood testing, but I was wrong.) And I'm supposed to go to the genetics department and get a blood test for this thing and rule it out for sure. There they will also go into my family history and comb through the weirdness and maybe get this thing pinned down.
On the other hand, I do wish I hadn't asked. Now I've generated more curiosity than I bargained for. At the same time, I'm curious too. … Why am I like this? Another reason to pursue it is my dear little boy Isaac. He's sort of weird like me– his elbows hyperextend. His fingers are much bendier than mine. He's just turned up with amblyopia (he needs glasses and will be so cute). He has asthma. As a baby he had a tight frenulum and a this little penile-scrotal webbing that I took as divine intervention to prevent him from being circumcised (Ben was for, I was against, the penile-scrotal webbing made it impossible.) Most importantly, he has the single palmar crease, which is very rare in the normal population, present in about half the people suffering from schizophrenia, and all the people with Down's Syndrome. Why does he have it? Is there something to do with all this I have? I don't know. Maybe the geneticist can figure it out. Maybe it's something else entirely– or maybe all this does gel into some sort of pattern.
Until then, I guess I'll just chalk it up to being a weird individual. Shrug. Who knows?