I know it has been an incredibly long time since I've written - I'm really struggling with chronic fatigue. but I needed to do a quick update:
1) I WAS APPROVED FOR DISABILITY! This was disheartening, as it meant I really truly had to accept the fact that I am a physical mess, but now I have Medicare and my pension from Actors Equity and enough coming in from SSDI that I don't ned to panic.
2) I'm assembling a bigger medical team! I've added a Sports Medicine doctor, a new PT who is happy to work closely with my Pilates teacher who is in turn happy to work with her, and a podiatrist who I am discussing foot bracing with. I'm going to the Marfan's Clinic at Mt. Sinai (they lump all us connective tissue disorder peeps together) where I should be able to pick up a cardiologist. Just slowly building a team who understands that I'm "complicated".
3) I had to fight the co-op I live in with Rick to allow my tandem bike as a piece of physical therapy equipment, as they were trying to limit the bikes to 1 per apartment. I actually sent them a letter from my doctor, even tho I'm not supposed to have to prove my disability to get an accommodation. ADA anyone?
4) I've discovered that the Pilates has made my muscles very strong. It's frustrating to realize just how much is done by tendons and ligaments, because I still feel very weak and tired. But I'm plugging away!
5) Several disabled people are suing Access-A-Ride! Rick and I have a trip coming up in September, but when I come back I'm gonna get in their faces again. I really want access to the taxi program, because it's hard for me to get to several of my specialists on public transportation - just too many stairs and not enough elevators in this town.
Well, that'll do for now. Back when I have more energy.
1) I WAS APPROVED FOR DISABILITY! This was disheartening, as it meant I really truly had to accept the fact that I am a physical mess, but now I have Medicare and my pension from Actors Equity and enough coming in from SSDI that I don't ned to panic.
2) I'm assembling a bigger medical team! I've added a Sports Medicine doctor, a new PT who is happy to work closely with my Pilates teacher who is in turn happy to work with her, and a podiatrist who I am discussing foot bracing with. I'm going to the Marfan's Clinic at Mt. Sinai (they lump all us connective tissue disorder peeps together) where I should be able to pick up a cardiologist. Just slowly building a team who understands that I'm "complicated".
3) I had to fight the co-op I live in with Rick to allow my tandem bike as a piece of physical therapy equipment, as they were trying to limit the bikes to 1 per apartment. I actually sent them a letter from my doctor, even tho I'm not supposed to have to prove my disability to get an accommodation. ADA anyone?
4) I've discovered that the Pilates has made my muscles very strong. It's frustrating to realize just how much is done by tendons and ligaments, because I still feel very weak and tired. But I'm plugging away!
5) Several disabled people are suing Access-A-Ride! Rick and I have a trip coming up in September, but when I come back I'm gonna get in their faces again. I really want access to the taxi program, because it's hard for me to get to several of my specialists on public transportation - just too many stairs and not enough elevators in this town.
Well, that'll do for now. Back when I have more energy.
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