I’ve been having some awful nerve crap going on, where my body will literally BURN. Everything hurts lately, the fatigue is debilitating, and I havent been able to do any of my PT exercises because I end up pulling something out. Most of PT is spent relocating, trying to work out spasms, etc. My PT is determined to help me though. I swear she has been the most helpful person in this whole mess. However, today when she was working on my ankle told me that one of the major tendons is swollen and inflammed. Great. Now I have that to deal with. She used this laser treatment that uses infra-red technology to promote healing at the cellular level. I thought, wow, neato, very star-trek. (Yeah, I’m a dork…). Then came the ice… yeeeeoooow, is all I have to say. My whole leg started to hurt, but she wanted to get some of the swelling down. She just took a small ice cube and massaged the tendon for about a minute and a half. It hurt, though.
I just went thru a Pain Management Clinic fiasco.. in BOSTON no less. The first guy, pretty good.. the second guy, did a psych eval for opioid treatment, I passed with flying colors. Sweet. This last guy, the physiatrist, JACKASS. Didn’t examine me, scolded me for not wearing knee braces (if anything my knees are my best joints… ), then told me I needed to “get more exercise and sun” so that my “fibromyalgia” will improve and wouldn’t let me get a word in. I wanted to kick him in the teeth. Didn’t look like he even read my chart, then wanted to put me on Cymbalta, gave me Voltaren Gel which burns, then told me to go to this Pain Clinic an hour and a half from where I live. WTF? I can barely drive 15min let alone an hour and a half. Sigh. I was so upset. So, the next day I got a name of a Dr in my area that is affiliated with the Ehlers-Danlos Foundation and have an appt on Oct 6th. He’s an orthopedist, hopefully he can help. I need someone to oversee my treatment that knows something about EDS. Sigh.
Some good news, I was speaking with my therapist and told her how I felt about the wheelchair. After some thinking and talking, she stopped, then said: “I never really thought of a wheelchair improving mobility.” After I told her how I felt, that it would allow me to be able to do more. It would allow me to not have to worry about how far I will need to walk, or about fatigue, etc. She agreed. Having a wheelchair is not excepting defeat. It’s not giving up. I won’t be using it all the time, just when there is a lot of walking required, or for a really bad day. It will enable me to get out more, enjoy being out, and not worrying about a dislocation, what will I do if I get too fatigued. For some a wheelchair can mean freedom.
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Who am I?
I am a young woman with a rare genetic collagen disorder called Ehlers-Danlos Syndrome. I am also an avid knitter, crafter, & artist. I love to sew, bead, photagraphy, charcoals, pastels, etc. This blog is to raise awareness of Ehlers-Danlos Syndrome as well as show of my artwork and crafts! This is my life.
Blog Against Disablism
Genetically Incorrect 
OneSick
Good job coming out on the ED. Too few people recognize the damage the skinny sterotype can cause. When I lost 20 lbs a couple of years ago (due to meds) and was a physical wreck, a lot of people told me how “well” I looked. Because I was skinny. I actually looked like hell and I knew it. But one of my real friends flat-out said I looked awful. “you should not be able to see those bones from all the way over here. Your eyes are bugging out and your skin and hair look horrible”. I was grateful to her then, and am grateful to her now. More people need to follow that example and stop enabling poor body image in their loved ones. I am sorry the shrink was such an idiot. I get “fibromyalgia” a lot too. What is that about? I have never, ever been diagnosed with it. I don’t kow where some people get off…I hope the new place can help you a little better. Pain management is crucial for people like us. ((((hugs))))OSM
Katrin
Sorry to hear about the psych. I will honestly say that I have been entirely less than impressed with any doc even remotely related to a mental health field that works at any Boston hospital. I now have learned to stay far, far away and go to places outside of Boston, usually private practice.Good luck with the wheel chair, I hope you are able to get one and it does help.