SCAD week

This week is SCAD awareness week, and I got to kick it off with a visit to a vascular specialist in Atlanta at Emory. My heart rate has been unusual since about October, making it hard for me to do my normal stuff, like even manage the old-people gym. My energy has been pretty abysmal, and I’ve had to figure out a new way of managing my days as I crash out with so little exertion. It’s been a huge bummer. 

Every time I go to Atlanta now, it’s a quick in and out to see a doc or have organs removed or collect a new diagnosis. My new diagnosis this time is one I suspected, but I thought I was probably being ridiculous and a hypochondriac, plus I learned about this condition on my instagram, which is totally embarrassing. Because I read about it on Insta, I didn’t mention it to the doctor at all, but he asked some strange questions and then gave me a clinical diagnosis and I nodded and pretended I’d never heard of it before. 

I have Ehlers-Danlos, which is a connective tissue disorder, and associated w SCAD - kind of like an umbrella disease that houses all my other crap underneath it. It means that the connective tissue in my whole body is defunct - if connective tissue is like the glue holding the body and organs all together, normal people have good quality hardware store glue, and mine is like the cheap glue that comes in a tube in a craft kit, mostly dried out and watery-weak. There are 13 subtypes of Ehlers-Danlos, and the Vascular one is really bad and the Hypermobile one is the least bad. I have either the worst one or the best one, and don’t know which, and you can find out with a skin biopsy, but there’s not a lot of benefit to this as there isn’t much for treatment. It’s hereditary but it’s also very rare, and the kids so far don’t seem to have symptoms that would indicate they’ve got it. 

I want to say here “THIS IS REALLY NOT A BIG DEAL”, in that it is more likely a life-altering disorder rather than a life-threatening one. But it’s both a big deal and it’s just my body, I suppose. I will be scanned from head to hips to see if any of my other arteries are showing signs of crapping out. (Insurance was not keen - fingers crossed.) Usually, if some other arteries besides the heart are weakening and starting to show signs of dissection, it’s the carotids or the renals, so we will have a look at those and see if they’re holding up. If not, they can do some things to prevent aneurysms and strokes, like stents and draining. 

Sounds so fun. I’m told this is not common anyhow and that it’s likely that the scans will reassure. If something is found, it will be dealt with or monitored frequently. 

I keep reminding myself that I don’t have a new thing - I only know about a thing I've always had, which is good. Illuminating, maybe. I’m thinking a lot about this today and feeling quiet. Thinking about my health feels like bellybutton gazing, and when I think about it or talk about it, it feels really selfish. I’ve always thought about my body far more than I would’ve liked. I remember hearing at a church talk once that humility is thinking of yourself less often, thinking of yourself almost never. Thinking about my body feels like the most annoying, cloying kind of vanity. But possibly my body required extra thought because it didn’t seem to be functioning properly? Turns out, my body is built differently. More IKEA, more particle-board than other people’s bodies. I wonder if I’ve always been so bothered by it because it has felt like a lemon.  I’ve assumed my whole life that I was lazier, less social, and generally more complain-y than others and than I’d like to be. Inside, I feel like I would be someone cheerful and energetic, fit, social, active, but my body isn’t up for it, so I read, make art, get chubby, couch rot. Knowing that the construction is off is helpful, somewhat. Maybe where I’ve internalized the failures of my body, now I have an external reason, something to blame that really deserves the blame for my feeling sub-optimal. The body is sub-optimal. 

I feel really lucky that I was able to see a specialist, though I was sad in Atlanta and didn’t much want to be seeing a doc of any sort. I checked out some cool book and paper stores and ate good food (I really love chicken livers and they’re so good from this one place…) and tried to feel free and vacation-y, even though I was only in Atlanta for one day. My cardiologist at home had not seen a SCAD patient before (or, he had, but the patient had died, which is the first thing he told me). The question of how and why my heart broke and how I can keep it in better order is always on my mind, all the time, and it’s a dark kind of relief to hear that there is a disease process that likely caused this, with a name and some things I can do to learn to manage my energy and my body in an effort to help it along, but also that there is a disease at play that I didn’t cause and cannot do much about, and that I can lean into that and allow myself to deal kindly with the body I actually have. 

Seeing this now is a bit like adding a layer over my life before this - I can see it all with a wash over it that recolors the painting, gives it a different tint. Life is really very short, and I’m figuring out what I want to do with that constant nag. I ought to hurry and decide what that means for me. Some of the manifestations of Ehlers-Danlos are eye-opening. I’ve never gone into labor naturally and have wondered how that can be - that’s a mark of EDS! I’ve always been impressively flexible - totally nailed the Presidential Fitness Test in grade 6 - and this is actually because my connective tissue is lame and not bc I was a cool, stretchy ballerina. I can’t recover from anesthesia and take forever to come out of it. Another EDS marker.

Here I am, old-ladying. I’ve avoided writing, because the things on mind are not things I want to write about, but I feel like they’re clogging up the works. I’ve got to get these things out and … restore the flow. Health and some other heavier things, and maybe once they’re cleared away, I’ll be able to write more of the things I want to write. Good Lord, if you’ve made it this far, please get a nice cup of tea for yourself as a reward, maybe a snack, some cheese. Also, the Rehab post up next is funnier and better than this one. Maybe it’s a break from worser news and more alarming things you could be reading. Like I said, this is not a big deal, unless it is, and I don’t think I want to know that part.