May is Ehlers Danlos Syndrome Awareness month, and all month I have contemplated writing this post. All month I have procrastinated. All month I have listed reasons why I didn't want to do it: I didn't want it to seem dramatic, I was afraid of how people might respond, I feel awkward when people ask me how I'm doing, and overall it just felt vulnerable. So here I am, on the last day of May, doing what I have been thinking about all month, and realizing no magic words have come to me in that time.
A year and a half ago I was provisionally diagnosed with Ehlers Danlos Syndrome. My hips had been hurting a lot for several weeks, and I felt like if I could only get a good stretch in my hip flexors it would help. I looked up stretches online, but I have always been hypermobile, so any time I stretched it just kept going. I don't feel the deep stretching pull in a muscle until my muscles have far extended the normal range. Growing up this meant I had a lot of party tricks and circus acts! Here I am at the beach last year doing standing splits in the door frame with The Boy and my niece:
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The diagnostic criteria for the hypermobile form of EDS includes things like hypermobility, congenital heart defects (well, I did have one of those), skin hyperextensibility, bilateral piezogenic papules of the heel (upon googling what that means, I had those as well), atrophic scarring (well, I had that too), dental crowding (Lard, yes), and muscoskelotal pain, chonic joint pain, or instability of the joints (yes, yes, and yes). So I took notes on the symptoms of mine that seemed to overlap with the symptoms of EDS and took them to my primary care doctor, Dr. Martin. I said "I hate to be someone who read something on the internet, but I saw this, here are my notes of when my shoulder dislocated and my jaw dislocated, and that procedure I had at Emory to get my jaw back in place and my congenital heart defect and my dental crowding and look at my scars from my breast reduction..." I word vomitted all on her and asked her what she thought. Might I have EDS? She asked me questions, she studied my notes, and she consulted her computer. She said she thought I probably did, but she wanted to do some referrals. She wanted to start with physical therapy. I rolled my eyes. "I've done physical therapy a hundred times" I told her. She said "BUT you haven't done physical therapy with anyone KNOWING you've potentially had ehlers danlos." I agreed, under the condition that I could go back to Dr. Doerr, who is a back specialist who I've seen off and on for years. He also has a full physical therapy facility.
So I went back to Dr. Doerr, who I love and have known since 2003 I think. He was interested in my new diagnosis and said "you've always been a really frustrating patient." 😁He set out to get this diagnosis confirmed, and referred me to his best physical therapist, as well as a Rhumatology clinic, Neurology clinic, a bioidentical hormone expert OBGYN, and Emory Genetics. The last eighteen months have been filled with questions and more questions and doctor's visits and research. The rhumatologist ordered blood work and x-rays. The neurologist ordered blood work and a sleep study. The OBGYN ordered blood work and fancy spit-into-vials-multiple-times-a-day-and-ship-them-off-to-a-lab hormone testing. In the fall, Emory Genetics finally confirmed Dr. Martin's original diagnosis. I have Ehlers Danlos Syndrome. I was one part relieved to have a name for the things that we thought were a dozen isolated medical issues, and one part grieving that it was chronic and was not going anywhere any time soon.
What does EDS mean in my life? I am lucky that my EDS is pretty mild. Some people have serious complications, like feeding tubes and rods and screws in joints, and loss of mobility. So far I haven't had any of that. It mostly means that I have chronic pain in my joints, and a whole lot of fatigue. Some days I feel fine and can do anything I want to. Some days I do too much and then I have to spend time recovering, lying down because my hips hurt too much or because I am exhausted. Some days I start to do something basic like put groceries away, and I end up having to take a break or sit in the floor to put the produce up. Some days I am in good spirits and grateful for what I have. Other days I am pissed that my body can't do all the things my brain wants to. Pissed at my husband for saying "hon, do you think you're overdoing it? You're going to be hurting tomorrow" and more pissed knowing he's probably right. Mostly I am mad when I am not in charge, which probably says more about my personality than my medical condition. Last weekend we had plans to go tubing in Helen. It was The Husband's idea and he was excited. I was reluctant, saying I wasn't sure if I had the energy for it. He said "it's laying down! You don't have the energy to lay down?" and I grieved a little bit that he had chosen a recreational activity involving laying down and I didn't know if I'd be able to make it. We went and had a great time and the boys and I all napped on the way home. They were champs!
The other concern is for my kids. Because it's genetic, they each have a 50% chance of getting it also. We don't know yet, because diagnosis is really difficult in kids. Kid bodies tend to be hypermobile anyway, so many of the diagnostic criteria aren't relevant yet until they are a little older. BeYoYo has some chronic leg pain that might be growing pains or might be because his feet pronate inward. He has some prescription orthotic shoe inserts that he wears and that seems to have helped a good bit. AND there's no genetic testing for the hypermobile type of EDS. It's all about clinical presentation. For now, we're watching them closely and they are just fine playing and laughing and jumping and being 4 and 7. I try not to let myself get too far into the what ifs (okay, except that one time when I researched if BeYoYo could have a miniature pony as a service animal because WHO WOULDN'T WANT A MINIATURE PONY?) and just let us all live our lives and take it a day at a time.
There is much to be grateful for, and sometimes life is complicated and hard. And isn't that the truth for everyone all the time, diagnosis or not? As I continue this journey of figuring out the right balance of activity and rest, of reserving energy for things I want and need to do and not for things that are tedious and unnecessary, I am trying to remember to be grateful for a life so full that there are things to say no to.
To read more about EDS, start here: Ehlers Danlos Society
