Well…That Explains A Lot…
Greetings, squadlings.
First and foremost, I am not making this post to get sympathy or have people feel bad for me. I’m honestly writing it so I can look back and remember this, and see how it progresses.
When I was a kid in school, I would always show people my “weird elbows”. I can turn my whole leg around so my foot faces backwards, and I can walk like that. My thumbs are essentially 90 degree angles. That’s just how I grew up.
When I became a dancer my freshman year of high school, things got worse. I was constantly injuring myself: dislocated hips, sciatica, sprained ankles, bruised knees…Sure, that’s typical for a dancer, but for me, it was an almost everyday thing.
As time as gone on, other things have started happening. When I was a sophomore in college, I cut my leg while shaving in the shower in my dorm. I trailed blood all through the bathroom and the hallway. I bled through six Band-Aids. The poor resident assistant had to clean up my blood, and my pencil-tip-sized cut had to be covered with literal gauze by a pre-med student down the hall. I bled through that, too.
I’m nauseous 24/7. Literally all day, every day. I have chronic headaches. Don’t even get me started on bowel movements. All of this, I blamed on Endometriosis. And sure, that was part of it, but even then, it wasn’t an everyday thing.
And then, last December, I went to an ophthalmologist.
This ophthalmologist diagnosed me with something called “Keratoconus”. Basically, my cornea is misshapen. Here’s a picture for your viewing pleasure.
Keratoconus is caused by a collagen deficiency. Which led the ophthalmologist to ask: “Has anyone ever told you that you might have Ehlers Danlos Syndrome?”
No. No they had not. But since then, three other doctors, though not qualified to give that diagnosis, have told me I most likely have Ehlers Danlos Syndrome.
And then, this week, I saw a doctor who is qualified to give that diagnosis. And he did.
Well, that explains a lot.
There it was: the past 23 years of my life, answered. I know why I’m nauseous 24/7: it’s because my freakin’ stomach doesn’t work. I know why I pass out all the time. I know why I have headaches, and gastrointestinal issues, and why I have random bruises, and why I bleed all the time, and why my body functions like it was possessed by Satan himself. Because I have Ehlers Danlos Syndrome.
I should clarify: there are thirteen types of Ehlers Danlos Syndrome. I have Hypermobile Ehlers Danlos Syndrome, also known as Ehlers Danlos Syndrome Type III.
When I first got this news, I was actually relieved. That’s a strange reaction to being told you have a rare genetic disease, but that’s how I felt: I had an answer. I finally had an answer.
And then the fear set in.
Now what?
Now, I have to get an echocardiogram to make sure my heart is unaffected. The doctor who diagnosed me thinks my heart will be completely fine, but he needs to make sure before he can make that call. I don’t know what an echocardiogram entails, and I’m nervous for that, to be honest. (Shoutout to Shay for telling me that an EKG and ECG are the same thing and forcing me to edit this post at 11:30pm)
And honestly, I wish Aunt Meg was here. She was a worrier, and admittedly, she’d probably be freaking out over this diagnosis. At least we could freak out together.
Overall, even though it sucks, I’ve been dealing with this for 23 years. I can handle this. Like my dad said when I told him about the diagnosis, “it’s just another chapter”.
Be well, squadlings.
https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes
https://www.webmd.com/a-to-z-guides/ehlers-danlos-syndrome-facts#1
sennajandy 