Ehlers-Danlos mama trying not to twist things up *too* much!

Tuesday, July 12, 2011

When A Doc Gets It

Of course it's been nearly 2 months since my last entry...what else is new?!

In my defense, my computer was virus-stricken during that 2 month period. It just returned to me, thanks to my Ninja-Warrior Brother-in-Law who also happens to be a PC repairman. Here's some unsolicited advice (this is my blog, after all): Back up your files, especially pictures and videos of your loved ones. I managed to recover most of what I lost, but it was no easy feat.

When I last wrote, I was not-so-patiently waiting for that darn cast to come off. I'm happy to report that it was removed as scheduled and that I've been hobbling on two feet, assisted by my trusty walking boot and forearm crutch/es for some time now. Even better, at my 2 month follow up, my ankle appeared to be solidly fused. That was great news, as solid union wasn't really expected until about 4 months. I'm all for speedy healing.

I had a milestone birthday this year (complete with a fabulous surprise party), but I'm not too broken up about it. I don't feel any older than I did last year, and despite being a mama and hobbling around like an 85 year old great-grandma, I still have difficulty seeing myself as a real adult. (College students just seem younger each year—what gives? And high schoolers—don't even get me started!) So getting older didn't bother me too much. What did bother me that day was the news Cam brought home from the hospital about my orthopedic surgeon—that he was leaving the practice and moving out of state.

I spent the rest of the day with a lump in the back of my throat. Ortho-Doc has been my only specialist up until this year. I started seeing him the year after he joined the practice here, right after he finished his fellowship. In the beginning, he was very eager to fix me, to do for my right shoulder what no one had been able to do for the left. And while he always respected my wishes when it came to treatment, to surgery, it wasn't until my first (or maybe second) right shoulder surgery failed that he began to truly understand how I ended up with a left shoulder fusion at the ripe old age of 19. Since then, he's let me make all the decisions. When I want to go the surgical route, we come up with a procedure. When I want to try injections or pain management or physical therapy, he facilitates that. In a most un-surgeonly way, he actually listens and involves me in my own treatment. The thought of having to find someone else to deal with me (especially when many surgeons don't want to touch an EDSer with a 10 foot pole) was most unsettling, especially since I'm still in need of more work on my shoulder.

Turns out all is not yet lost. When I actually went in to see Ortho-Doc, he confirmed that he is leaving the practice, but he'll only be about 2 hours away. While I've been quite spoiled over the past few years by being able to roll out of bed ½ hour before my ortho appointments, I'll take the drive if it means not having to deal with someone new! Thankfully my new insurance covers out-of-state specialists. I'm angry and eternally grateful all at once...grateful that I have doctors who are actually willing to [try to] figure me out, treat my pain, and treat me with dignity. STILL, I am angry that this disorder and the thought of losing one of the members of my “team” reduces me to an anxious mess (on my birthday, no less) and that the anxiety isn't unwarranted!

Every doctor should be like Ortho-Doc. Every doctor should “get” it, should treat patients well, involve them in their own care. I'm finding that more and more doctors are at least minimally informed about Ehlers-Danlos Syndrome and are eager to learn. I've had fewer “Oh, so you're a circus freak,” remarks recently. I think we're getting there. Still, I'm going to hold on to the good ones I have!

Be well!

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