Thursday, July 11, 2013

28. My EDS Journey: Amber Lenius' Story

My EDS Journey

I got to my appointment 25 minutes early.  It'd been scheduled six months prior and I had driven 3 hours to get there.

I was too nervous to go in, so I rode the elevators. Eventually I meandered into the clinic. It was huge, holding offices for all the pediatric geneticists and their varied academic specialties. I sat in front of a giant fish tank and waited.

The office was busy. Loud. Filled with so many families. I wondered how many of them were facing life-changing news too. I wondered if they were scared. I wondered how it would feel to be sitting here with one of my kids. I wondered if I would ever have to. (Please, please no)

"Amber?" a pretty, blonde nurse called me over. Six months pregnant with a freshly broken tailbone, I waddled after her. Pulse 134, BP 150/95. She checked twice just to make sure. "Are you nervous?" "Yeah, kinda". (Get me out of here)

Dr. Trapane and her nurse, Anne, came in soon. They were so nice, so professional, I knew I came to the right place. We talked about my history. All of it. My entire family's history. All of it. She felt my hands and took my Beighton Score. Velvety soft and 9/9. She asked about my pain, my injuries. I told her how I can't go upstairs and my hips pop out of place. And my knees. And my ankles. And all of my fingers. And my jaw. And my shoulders. She looked at my flat feet and I told her about my plantar fasciitis. She listened to my heart murmur and I told her about my blood pressure and heart rate issues. She looked at my eyes and I mentioned how I can't even read my own t-shirt without glasses on.

 She looked in my eyes and I told her how no one knew what was wrong with me. How I'd been tested for everything from Lyme disease to multiple sclerosis and it all came back negative. I told her I was scared that I'd die and no one would know why. She told me she knew exactly what was wrong. That it was Hypermobility Ehlers Danlos Syndrome, that I wasn't crazy, that I wouldn't die. She told me there was no cure, but there were things they could do to help me. Anne gave me piles of papers and talked to me for almost an hour, answered my questions.

When I got to my car, I couldn't stop crying. I'd been sick for so long and finally here was an answer. It wasn't a very happy answer, but it was an answer. (I'm infected by your genetics.)

It's been almost a year and I'm still struggling with reality. I hate my crutch, I hate my wheelchair, I hate my pile of supplements, my braces, my orthotics. I hate the uncertainty and the way I can't plan anything anymore, but must plan everything. I hate EDS with every genetically-flawed fiber of my being, but I love my life regardless. My kids are healthy. My partner thinks my crutch is a good weapon and jokes about learning crutch-fu. They all love me even when my body aches in a way that makes labor seem desirable. At least that pain has a purpose. Maybe this pain does too. Maybe it's meant to teach me not to take the little things for granted.

And so I won't. Each day is beautiful in its own way and I'm grateful to have been given so many of them. EDS has shown me how to live in the moment and I'm so grateful for that. Having a chronic illness is difficult, but I won’t let it define my life. I > EDS.

(Photo (c) Amber Lenius. No use without permission)


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