Debra, that sucks. It's wrong for Medicare to make people wait so long after being granted disability to begin using Medicare benefits. Most people by then aren't covered by their employer any more and can't afford COBRA premiums. I guess that's why the new health care plan passed, although I don't think issues like this will be solved or made better.
Medicare may open some options to you. You could start looking for doctors now so when your Medicare coverage kicks in you'll have already made contact with providers. Know that fewer doctors, especially specialists, are taking Medicare patients because their reimbursements are being cut in 2013. If you start introducing yourself now and screening doctors, you'll have a better chance of finding the right doctor who will treat you because they care about you as a person. Let your pain management doctor be your guide to make suggestions about who you need to see since you have a good relationship. I know LV is kind of isolated once you get beyond city limits, but maybe you can find a specialist neuro, uro, rehab person that can help you. Medicare has a Welcome physical where they get a kind of baseline on your status to compare you to from then on. If you choose an Advantage program look to get that Welcome visit with a good GP and neuro who are willing to stick with you.
There is a state program in each state that can help you choose the right Medicare Advantage program to fit your medical and drug needs, usually found under your State Department of Insurance, or State Insurance Commissioner Office - in NC it's called the State Health insurance Information Program, or SHIIP. Because they don't sell insurance, they can give you an objective assessment of choices in the area you live that will cover the needs you have, the meds you need, with co-pays that are the lowest, for the smallest premium. You should be able to do this online, on the phone or in person with an Adult Social Services Worker in your County.
This is a starting place. I think it's travesty that it's such a problem for people to get reasonable medical care in our country, that it's so complicated, that it's such a big secret about how to go about getting care and paying for it, and that getting additional needs met like DME - power chairs for example, or in home caregiving aid - is just about impossible. It's wrong and sometimes it makes me furious, sometimes I feel deeply sad, and sometimes I'm a raging advocate. We don't have all the answers, but Debra, keep coming back here until you are able to get to doctors that help you at a cost that's reasonably affordable for you. And maybe someone else from the Las Vegas area will join in and let you know what doctors have helped them or resources that have made things better for them.