A picture is worth a thousand words

I had planned to tell my story in a sequential manner but life isn't always neat and ordered so why should I be any different? Kate(my daughter) was coming up to get the tires on her car changed for winter and I asked her to bring her digital camera. One of my road blocks in getting my problem diagnosed is that physicians can be too reliant on tests and some have let their clinical skills decline. When I practiced in Guam for 3 years we didn't even have echocardiograms so my ability to hear murmurs needed to be sharp otherwise I'd be sending patients on costly trips to Hawaii for the test. Rheumatic fever is fairly common in Guam so evaluating murmurs was an important task. I seek someone with similarly honed neuroclinical skills.
My medical problem is one of pain, weakness,irritability and, now, atrophy in various muscle groups. The latter is apparent on visual inspection, the trick is getting docs to really look. The thinness of my hands and feet is new and they don't match the rest of my frame. My left trapezius is hypertrophied to make up for the atrophy of my left shoulder girdle muscles. I see this every day in my bathroom mirror as I wash but showing others is a challenge. Clothes, including patient gowns, can hide a myriad of physical imperfections (thank God for long skirts). When I'm the patient it seems like physicians are loathe to look under the gown. My own doc has and she can easily see the difference. Others try to slide up the sleeve or cautiously open the back but that doesn't tell the story. That's where Kate and her camera came in- I decided to document on film what my body looks like so others can see what I see.
I'm sorry in some ways that Kate had to do the photography. She's busy with her senior year of college, mothering a toddler, and planning her wedding. That's a lot to handle at 21 and now I've added to her plate by letting her see so clearly the changes in my body. She had already been out of the house when I got sick so in some ways my illness was an abstraction to her- she was aware that I had limits to what I could do but I had tailored my activities with her to keep the problems from interfering with our plans. As we stood in the bathroom she saw my neck and upper back in a new light and it was distressing to her. Sometimes life is painful.
I'll put up the photos soon.