It really makes me angry that anyone gives you a hard time. I mean, who in their right mind would CHOOSE to go through what you are dealing with?
I can't fathom living on 800 calories a day, which you've done. I can't imagine watching your mother die and knowing you have the same condition. I can't imagine a medical community that is so unhelpful. And I will write a letter to Medicare because I cannot believe they won't at least partially cover the bandages you need.
Just FYI, I have lymphedema in my right arm, but it's gotten a TON better. HOWEVER - it was due to radiation treatment for cancer, and I caught it very early on, so using compression garments, exercise, massage and modifying my diet as well as elevating my arm while asleep (not comfortable, though!) has worked and the swelling is gone in my forearm and hand, though my upper arm is still somewhat swollen.
But, here is what I discovered - and my disease was nowhere near as debilitating as yours - medical care for lymphedema is scarce. I called local specialists when my arm was so swollen I could barely write because my fingers were sausages and I wouldn't brush my teeth with that arm. There was a three week wait time! If it weren't for online resources, I would not have known what to do.
I am so sorry that your condition has progressed way beyond typical remedies. I am so sorry you need surgery. I hope you have an advocate who will go with you to make sure they take good care of you.
When I think of your aunt - man, that sucks. No one knew what the problem was so of course they blamed her instead of trying to help her figure out what was wrong. And the fact that this STILL happens... what is WRONG with people???
Obviously you are doing everything you can to deal with your situation. I am just so sad that you will have to go through so much and spend so much to deal with it, but I'm glad you are fighting on. I know your daughter must be very proud at the example you are setting for her. I hope you get through this and that your situation vastly improves.
