I know I cannot understand personally, but I had a roommate back a few years ago for two years straight. I cannot remember the disease name for the life of me (it is very rare and she actually made it into medical textbooks because of it) but the disease will eventually kill her. She's 30 years old, and wasn't expected to live this long - now she's living day by day... but likely won't make it for too much longer. On my side of things, it was scary when she was constantly being admitted into hospitals because I'd be told that she may not be making it out - in the two years, she had numerous surgeries and quite a few different infections - including numerous blood infections (which can be quite easily fatal if not dealt with properly or quickly). On top of this, she had a couple other conditions and depression (which is pretty understandable). Same as you, her condition cannot be cured, and can barely be slowed down - with medication that is actually toxic and could kill her before the disease does! (Unfortunately that's what happens with some medications... the treatment could be worse than the disease at times)

She kept on living and tried to make the best of the time she's been given, for better or for worse. Yes, it does suck and NO nobody can understand completely what you're going through. But you shouldn't give up, even if there isn't a cure -- you still have a life to live and a contribution to make to society and are still a joy in the lives of those around you. Sometimes that is all we have.

I know I sound hopelessly optimistic and I may sound condescending (I'm trying not to be, but apparently I do sometimes) ... but I think you're a wonderful person whose life has positively impacted a lot of people's here and in your real life offline. We are touched by the fact that you're continuing to live and struggle with what you've got - and aren't laying down and giving up hope.

From my experiences with a permanent disability which cannot be cured... yes, I have the days of "why bother doing physio, why bother going to the doctor, why bother going for this procedure or that procedure or for this test or that test... It isn't going to change anything, I'm not going to be magically cured, and nothing is going to get better!"

During those days, I find something enjoyable to do. Even something simple. If you're chronically depressed over your conditions (understandable) - are you, or have you considered, trying antidepressants or therapy? I know you said you're waiting to see if you'll get on disability or not, but it's worth a shot if it's something you've not already done.

As for your current living conditions - I don't think that where you're currently living is good for you emotionally or physically in my opinion. Perhaps also a change of scenery, where you could also qualify for disability would be a better alternative? I don't know anything about US geography, but there has got to be a better place for you to be living that could make you happier. If not, you could always move to Canada. We may have wintertime a lot of the year, but we have pretty good social assistance.

For emotional support, is there any sort of support group you've found online or in person with others who are terminally ill, or struggle with a disease(s) such as your own? Sometimes having support from others in more similar situations can really help.

I'm sorry I'm not much help, but I wanted to let you know I care about you even if I don't truly understand what you're going through.