So an update on what I would say to my doctors about my pain. I was just diagnosed likely with Ankylosing Spondylitis. My doctor looked at my scans and was like no wonder you have been in a lot of pain. (ummm yeah). My surgeon did not feel I needed surgery on my neck. My disks are bulging in my neck and there is obvious inflammation in my C3-C2 areas but if we can get the inflammation under control it will likely help and there is nothing touching my spinal cord as of now. So that is darn good. I do worry that there is a problem there, even though he didn’t think so, but I will just have to wait and see.
As far as the Ankylosing Spondylitis, I am not HLA-B27 positive. Because of this insurance does not want to cover my medications. I would like my doctor to fight for my formulary override. I am in a LOT of pain. His complain was that it is a lot of paperwork and to have to through it again in January is a pain. I was upset, because that is really 3 months out of my life—the holiday months–October, November, December. I would LIKE to feel better during those months and NOT wait until January to fight for them. I hate someone abdicating their duties because of work.
I get tired of insurance driven medicine instead of provider driven medicine. It’s sad that so much rampant over-prescribing and over/under treating has led to the insurance companies drawing lines in the sand. But for patients who have something lik eAnkylosing—they are truly messing with our entire lives, and I just feel like they feel those lives are dispoable. But they are not. Keep fighting no matter what. Don’t give up, if that doesn’t work, go to the supervisor. Get support, talk to a behavioral health person, hopefully that person will be on your side. It’s no easy at all.