Yesterday was my 32nd birthday. I celebrated with a lunch with my dad, a special sushi dinner with my husband and kids, and cake from my boss at the bakery.
And a clinical diagnosis.
I drove several hours to see a geneticist, and after a full family and personal medical history and physical exam, I was diagnosed with Ehlers-Danlos Syndrome – Hypermobility Type.
Part of me is relieved. I broke down in tears as the doctor told me, “This is real. Your pain is real. You’ve been told all your life that you don’t look sick, that you seem healthy, that you must be exaggerating. You’ve brushed it off and thought it must be normal. It’s not.” I have been in chronic pain for years, but have always just dealt with it for the most part, thinking that it was just something everyone had and that I shouldn’t complain. In recent years, the pain has gotten bad enough to inhibit sleep and daily activities, and I started looking for answers. Turns out that my whole life has been leading up to this, and that there is no cure. I have been doing everything WRONG for my joints, and it’s not going to get any better. I can manage my pain and hopefully work on building some muscle tone to stabilize somewhat, but the harsh reality is that some changes are going to need to be made.
No more ballet. It encourages my joints to stretch beyond what they should. I have to really think about everything that I do. Is there a way that I can do this without putting pressure on my joints or without stretching? Is there a way that I can minimize impact? My exercise is going to be mainly water aerobics, swimming, biking (with wrist support) and walking. I have to go get an echocardiogram done to make sure my aorta isn’t dilating/stretching. I have to assemble a medical management team of a rehabilitation/sports medicine specialist, physical therapist, and occupational therapist. I have to tell every dentist and surgeon I am treated by about my disorder so that they can accommodate. I will continue to degenerate.
It’s not going to get better. My kids all had a 50/50 chance of having this disorder. I’m pretty sure that Nine and Three have it. I’ll get them tested, too. While I’m relieved that at least for them, I can minimize damage done early and keep them as pain-free as possible for as long as possible, I feel incredibly guilty for giving them something that is going to cause them inevitable pain in their lives, sooner than it should.
No one should have to live with chronic pain. I am hoping that I can get a treatment plan in place to keep me as active as possible as long as I can be. I am hoping that this disorder does not get in the way of my life. However, it is looking like I’m going to have to think about things like more braces (I already wear braces on my hands) and assistive devices as well as getting my boys to chip in more around the house. I’m going to have to consider the layout and design of my kitchen remodel to help me navigate it with as little trouble as possible.
I’m still coping with everything and coming to terms with this. I am sad about the changes that I’m going to have to make, but glad that I’m still young enough to make them, and that my kids are young enough to avoid things, too.
bloom. 