August

hello!
August. sigh. What's up with the heat? I am happy to report that this has been an unusually cool summer here in my neck of the woods. Which is good. Because I melt in temperatures above 70 degrees. Evidently, one of the muscular dystrophies is very heat sensitive. When the temperature goes up, I get very weak, woozy, double vision, numb on one side of my head, and much more. My Neurologist wrote me a prescription for a Cooling Vest (MS patients use them, but so do race car drivers and mascot costume wearers) and I'll be asking my insurance company to see if it could be covered under my medical plan since the vest I need has a baseline price of $300-not including the accessories. Evidently, there's quite a bit of science involved in these cooling vests! You want 58 degrees, and long lasting without freeze burning yourself or overcooling the outside of the body and the inside temperature then paradoxically rises to compensate for the low skin temperatures. I hope the insurance will pay.

I started volunteering, and it's so much fun. I volunteer 2 hours a day, four days a week. I've been doing it since mid-May? Anyway, I've had 12 sick days and an excess of 21 doctor visits and 1 ER visit in this time. I can't imagine starting back to a paid job right now, as I'd probably lose that job lickety-split with all that time off for illness related problems.

Hmmmm, what else? I can't feel my right leg. It starts from the top of the hip to the sole of my foot. I've had patchy numbness on both legs for years, but this one runs deeper. It is so bizarre and I don't like the feeling.

You know what I'm especially thankful for? My family and friends that take the effort to try to understand and there are even quite a few now that can sense when I'm struggling! So, thanks everybody! You help keep my spirits up!

More later