I’m stockpiling illnesses like they’re canned goods and I’m at Costco right before the apocalypse. I was going to say that I’m stockpiling illnesses like I’m a Newfie girl who just found a grocery store shelf full of mustard pickles, but I assume most of you won’t get that. And I don’t even really like mustard pickles, so I’m not sure why I thought of that.
I went to see my lovely doctor yesterday, and after we had a chat about how much we love the musical Hamilton, I got to telling her about some of my weird joints and how a number of my symptoms just don’t feel like they fit under the lupus umbrella. There’s the hypermobile joints, the ridiculous muscle weakness and fatigue, the soft and kinda stretchy skin, and now the paralyzed tum-tum (that’s the more well known medical term for gastroparesis). Right away she said “you’re thinking about Ehlers-Danlos syndrome, aren’t you?” And I’ll admit, I was impressed. I have some bendy blogging friends with EDS who have had to wait YEARS to find a doctor who even knew what it was or I guess had the ability to spell it so they could check google. My doctor was like “oh yeah EDS…that old thing…” as if it’s as common as the cold. I’m lucky. So we had a chat about it, and she said that it seems to fit a lot of my symptoms. She said I would have Ehlers-Danlos syndrome type 3, which is the hypermobile type, and is less severe than the other types but is still a complete douchebag of an illness (she didn’t use those words, that’s all me). She gave me a “working diagnosis” of EDS and is putting in a referral for me to see a specialist who could officially diagnose it. The specialist in question will be a geneticist. I assume it will take 7 million years to get in and see one here in Newfoundland but in the meantime I can see a physiotherapist and an occupational therapist about my wonky body, so hopefully things can get a little less painful for me during the wait.
So now I’ve got 4 diseases on the punch card. I’m pretty sure if I get a 5th it comes with a free foot long sub, which will just make me sick because it’s too much food for my paralyzed stomach to digest (there are definite kinks in the system). Funnily enough, all of my friends’ reactions to this new EDS development is the punch card joke (and you know, checking to make sure I’m okay). My response to the punch card joke is “damn it I was just going to say that!” And my response to “are you doing okay?” is to tell people that I’m falling apart, but instead of saying it I kind of sing it because it makes me feel better about the whole thing.
I know a teensy bit about Ehlers-Danlos syndrome but I’m not an EDS guru the way I’m a lupus guru. Hopefully soon I will know more and can write an actual informative blog post raising awareness of this rare disease, but for now I only really have the Coles notes version. I know that it’s a connective tissue disorder characterized by loose joints and chronic joint pain. I know that there isn’t enough collagen in your body to make your joints and other things do the jointy things they are supposed to do, so it’s easy to have dislocations and hyperextensions. I know that it can cause a lot of gastrointestinal problems. I know it can be hard to use your joints a lot, and I have experienced this often. In university while writing my essay exams I used to have to tape my pen to my hand so I could hold it, because my hand got so tired after writing about 5 lines that I couldn’t close it around the pen any longer. And the joints in my lower body get super exhausted if I’m standing for too long. There are many other examples that I can’t think of right now because these things happen like 17 times a day for me. I know that, like lupus and many other chronic illnesses, some people can be minimally affected by it and others can have a more severe form of it. Ehlers-Danlos syndrome is a lot of other things too, and I’m still trying to figure that out. I know that people with EDS often refer to themselves as zebras, which I think is cool because I like zebras, but I’m not entirely sure where that comes from yet (someone help me out with that)?
If you have EDS type 3 and you like educating people on what EDS is, please please please educate me in the comments below. I would also love some links to blog posts about EDS. And also maybe we can be internet besties. Thanks!