I have a mostly unknown, totally misunderstood, incurable, & very lonely condition called lymphedema (LE). Even the medical community don’t know much about it. Both my legs & feet, my right hand, left arm, & left breast are affected. My LE is inherited (but got worse after a fight with cancer in 1994). Family history says my mother & her mother suffered from “fat legs”. Growing up I’d wake to mom in the living room quietly crying & rubbing legs. She’d say “it’s a fat leg day can you cook?” Doctor after doctor would say she was fat, put her on a diet & diuretics. Then when she didn’t lose weight they’d tell her to start telling the truth that she cheated She stopped going to them. I went thru the same cycle.
LE is very expensive. I’m lucky my insurance covers more than most but wrapping materials are not covered, co-pays can add up, losing work, and added expenses kill me. I have to buy 2 pairs of shoes one wide for right foot one eee width for left. Short stretch bandages, lotions & antibiotics to avoid infection are not cheap and not covered by insurance.
LE is exhausting. Its like strapping on 90 pound ankle weights & never take them off. Then increase that weight when a flair up occurs. I don’t sleep well having to sleep wrapped like a mummy in compression bandages & garments with my feet above my heart. The fluid in my feet make me feel like I’m walking on rocks pebbles & broken glass. There are days I can’t wear my glasses because my face puffed up. I drop things sometimes when my fingers are sausage shaped stubs. I often stumble & fall because my ankle or knee doesn’t bend. My house is never clean -there are days when I can’t mop/sweep the floor, or stand to go dishes, or even make the bed.
It’s a lonely condition. It hurts too much physically & emotionally. Often I can’t walk around stores or I cling to shopping carts using them like a walker. I try to avoid crowds so I don’t get the fat slob looks & comments. Friends & relatives avoid me. I’m now left out of places/events that I used to go with them. I’m told “we would have taken you but you’d never be able to walk that far” or “we only had an hour so you couldn’t do it” My only remaining aunt has accused me multiple times of “making up a disease to cover being fat and lazy”. She refuses to have anything to do with me until I change my fat lazy ways.
I could go on and on. Please back the Lymphedema Treatment Act. Please help bring awareness to this condition.