Health Organization for Pudendal Education

After a year and a half of living with PN, I realize that my pain level is such that I cannot survive without help.

I've lived on my own for a few months (away from my spouse and children) and found that I'm insanely exhausted and increasingly flared by adding onto my plate all of the "little" things my husband (who happens to have enough energy for 3-5 ordinary people) does for me on a daily basis. My husband needs to start working full-time and I need HELP. There is no way I can live on my own for another stretch or be at home without steady support and do anything besides survive.

I receive SSI (which is better than nothing, but honestly ludicrous), but if I could earn too much for SSI, I'd be super duper happy. I am trying to improve my quality of life and hopefully start a teeny business or something that will help my family financially and give me something to do (besides survive!).

Has any one gotten this kind of support covered? Or is this crazy talk?

Appreciate any advice on:
- how/where to apply for assistance like this;
- what this kind of help is called (I don't know the lingo);
- whether or not anyone has ever been able to get funding for a helper; and
- how successful this kind of partnering may be.

Thank you!

Grace I know someone with PN who has home health aides who help out in the home for several hours a day and I'm sure this person doesn't pay for it himself. There was some trial and error in finding the right fit on aides but the ones he has now are great. If you have an SSI caseworker maybe they can help you with this. I'll try to ask this person how they managed to get it paid for.

Violet