KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.<blockquote>
Below the squiggle for what I managed to pull together.
So I'm late, I just lost the diary I had written:
When nothing is working about an illness...your health insurance says no, social workers say "What about a nursing home for two months" and you blanch and say **ck NO!, what about an illness that means you now pretty much know your endgame even if you aren't technically terminal..secondary lymphedema is incurable and a consolation prize from having cancer twenty years ago....and at the same time you have to learn how to own LexiTheMiniatureSchnauzer fulltime, and have to start hiring or firing home health aides....
When inpatient treatment is fine, but you can't get sane outpatient care to save your life.....
Nurses won't treat you correctly "It's a non-skilled service." Home health aides would like to, but they aren't permitted, "It's a liability issue..."
Lymphedema in the short of it (remember I'm late and I lost the diary) is swollen legs and an immune system that is no longer 100% capable of carrying infection or dead or unused cells out of the system. Both legs are heavy and swollen and you are told to elevate at least two hours daily, do physical therapy...
And get a really cool massage twice a week. No kidding....it's comfortable, and non invasive and non painful...starts at the neck, then the shoulders and the hip creases...and the legs themselves. A wonderful encouraging lymphedema therapist does this for me two times a week on an outpatient basis.... It wakes the lymph nodes up and gets the fluids that are backing up in the legs moving
Let's make this an open thread, about this impairment, or any other or pie...shall we...because the diary is inadequate and I won't be back till later (about seven. to answer...I know it's rude not to stay around and I apologize in advance...I'll check in and back I want to hear what KosAbility folks are doing :) I'll pass out mojo I promise!
Update II Yay for Nurse Kelley for setting up the Open thread :)