Hello fellow nurses,
I just found this site--it's wonderful! And I have questions!
For those of you on SSDI disability, do you get presciption drug coverage at some point?
HOW do you approach your MD on the subject of disability??? My doctors know I can't work now, that I tried to work 2 days a week LTC and even that I can't do anymore; but somehow, even reduced to being unable to drive or barely walk into their office, I cannot seem to broach the subject of, "Will you sign disability papers for me?" And, although my husband is fairly healthy and works a low-paying job, can I qualify for any benefits at all if I presently have a working spouse? I need medicines more than money.
Here's my scenario: Ulcerative Colitis since age 17; am now 49, and have taken enough steroids to kill 1,000 horses. They did tell me my spine would start to fall apart one day, why not just have the colon out. As sick as I was, I didn't think I'd live to see that day...but I have. Around age 40 the newer medicines were keeping my UC so under control, that I decided to go to college. I got a general degree, became an LPN, worked, then went back and got my RN. Five months before the last day of school, I went to the ER after a day of clinicals with the worst pain shooting down my legs, and landed as an inpatient. I managed to get through several more days of clinicals (hey, with UC I had gone to LPN clinicals wearing DIAPERS) before the end of school so that I had exactly enough hours, and took pain meds and pillows to class to get through the remaining class hours. After graduation, I tried several nursing jobs, while still seeing the pain dr. getting expensive epidural steroids & nerve blocks, but it wasn't working. My last regular job was weekend RN at a nursing home, but I could not deal with that come Sunday--one day a week was too much for me! Presently I work 1-2 half-days a MONTH for an insurance co. doing assessments for LTC ins. The needles-in-the-back thing is going nowhere. I still take lots of UC meds, and I worry so that if my husband loses another industrial job again (it's looking that way, they have laid off some with seniority than him), he's not going to be able to find another, my $2000 worth of meds a month (we get for around $300 with ins.) will disappear, then he goes down the drain with me.
I have compression fractures in several areas of my spine. I am in awful pain (from 6 to suicide level on daily basis). Many days I need to be almost flat in bed. Now I do dog rescue transport via computer about 12 hours a day for distraction (did you know you can save dogs' lives via computer? I love it) but that has taken all I've managed to earn for the "extras" that go along with rescue--getting them neutered, vetted, and into an adoption facility. It's also all that keeps me going. I would like to have a job via computer that pays some money, but if SSDI is where the insurance is, I need to go that route so I don't drag my husband down with me. I am uninsurable under any other system--we tried the last time my husband was in a job that shut down and COBRA was $900/mo. and Unemployment Insurance paid $700 a month "income"--but I could not get insured anywhere. It had been 8 years since the last shutdown, so I was several months ahead on medicine; I took less as I could, substituted one for the other and made it through barely, with only having to buy 2 months of the 6-MP (chemo drug, also treats UC) and made it through by juggling the others.
What is your advice? I have been so depressed most days I can't even think about trying to do anything. But on the days I'm not too depressed, I still don't know where to start.
Ideas, please, on any of this! ~NH

So sorry to hear of all your medical issues. I have same ones, plus some, but not to same extent. Could probably write forever, but one thing now to put in front of you is that after you have been on social security disability 2 1/2 years you can get medicare. It is automatic in my sate, not sure if is with all. For me, the last job did not work out for me after 3 months (was fired), and SS called that a failed attempt to try something else, so the date for the start of my SS was B4 that last job. Having MDCR could take off some strain for you. It is independent of spouse. JW