Thank you everyone for your responses, I'm emberassed to say that it made me cry just to know that you guys are out there. I have felt so alone lately. I know a few people with similar problems, but no one talks about it, and for some reason they all seem to be doing better than me.
There seemed to be a lot of questions, so I will start from the beginning. I was on SSI partial disability from the age of 17, because I was diagnosed with bi-polar disorder. I had a good social worker, who applied and got it for me. I went through life, sometimes i worked, sometimes I didnt. When I didn't, I went back on SSI. Being on SSI automatically qualified me for medicaid, and I got to keep the medicaid whether I worked or not. As I grew up, I got better, made better decisions, etc. Anyway, I moved to St. Petersburg, Florida 13 years ago. Eventually I went to St. Pete Junior College (which is now a real college) and get an AA and an AS in graphic design. After working in the field for a year and a half, the lower back pain started. Small at first, but it wasn't long before it got worse, and worse, and worse... I still had medicaid from SSI, so I had all the specialists, and all the meds that go with it. I did traction, PT, trigger point injections, ESI, massage, and probably some other stuff that I can't remember right now. Some of it helped, but nothing made the pain go away. My Dr. said that working was making it worse, so I quit and went back on disability. For about 6 years I was on disability, on every med you could think of. Drs said that I need surgery but, "I would never do a 3 level disk fusion on a 30 year old." Five different surgeons said exactly that. I really thought that there was no reason to have that much pain while on all those meds. As time went on, I came up for review on my disability based on bi-polar disorder. I had a psychological evaluation, and the state declared me in remission. While I was happy that I was no longer crazy, (which I kind of already knew) that meant no more medicaid, or money. I tried to fight it, then I tried to get the reason for the disability to be switched to DDD and RA but I was denied. While I was in appeals with SSI, they kept paying me and covering me with medicaid with the agreement that it would be payed back if I lose the appeal. After aa year of this and a couple of denials, I owe social security ALOT!!! So, for the past two years I've been on my own.
In the past two years I have learned that nothing will get rid of all the pain, not even all the meds in the world. But I did learn that if I'm careful of how I sleep, sit, walk and stand, and keep my activities to a bare minimum, it can be somewhat bearable. I just cant do anything.
Lately, with my 1 year old, those activities are increasing and its become very difficult. My husband is in construction, which is a very bad field to find work in right now in Florida. When there are construction jobs available, they never offer insurance. I've tried the free clinics, but they all say that I have too many medical problems (I also have asthma and acid reflux) and that I need a primary care physician. They only treat my asthma. I applied for medicaid, they said that the income cutoff for a family of 3 is $300 per month.
Anyway, thats pretty much the whole story, sorry its so long. I want to thank everyone again for your touching and helpful responses. I think it might help to know that there are other people to talk to.
Degenerative Disk Disease, 3 deteriorated and 2 of those are also herniated in lumbar spine, also 2 herniated in C-spine. Psoriatic Arthritis, with the sholders, hands, left hip, and knees affected the most. Major anxiety and depression issues. Wishing I could learn to live with this.