Once again, I haven’t been writing very much because I have been in a flare from hell! Much like my last flare, this one was also induced by my menacing medication changes…initially anyway. Pain med changes are a necessary evil of having chronic pain. The evil part being the in your bones kind of pain and don’t get me started on the exhaustion, cold sweats and muscle spasms! My hair even hurts, well technically my scalp, but you know what I mean.
I’m sure it wouldn’t be nearly as bad as it is now but I am stressed, frustrated and ultimately just disappointed. I filed for disability a little over two years ago. It’s a long, drawn-out, stressful process but I always had hope, held onto it like a lifeline. I had hope that eventually I would be approved and be able to receive Medicare because I just can’t afford the labs, treatments and surgeries I need.
I would talk about Obama Care or state funded insurance but, I seriously don’t want to go on that rant (trust me, you don’t want me to either!) So…I waited, patiently over the past two years. I had faith that my medical records would speak for themselves and the hearing would just be a “formality”. I was so very wrong!
A few days ago I received an email from my attorney letting me know my case has been denied by the judge. We would have to wait for the official letter to know the reasoning. I couldn’t believe it! My attorney’s Theory of Case letter was pretty damn compelling with a myriad of medical tests, imaging, doctor’s opinions, etc. to prove his theory!! What more do they want?
During my hearing, the judge brought up my pain doctor. He was investigated and charged for over-prescribing opioids and fraud and had several patients who ultimately lost their lives, I believe seven total. It is a tragic situation for sure!
Anyway, this judge brought up the case against him and asked if that is why I was on such heavy duty pain medication. When I answered no, it is because I am truly in a lot of pain, she seemed dismissive. I honestly believe that is why my case was denied but we will have to wait for the official decision. It’s just devastating really because I know it will be two years or more before it can be reviewed by the appeals board because there’s only one of them in the entire United States that reviews hearing decisions.
All that time, I held onto that little glimmer of hope that I would be approved and be able to get the appropriate care that I can’t afford currently. Now that hope is gone! I keep a smile on my face and try to get through my day but every day since, it is getting harder and harder to do.
This additional stress has made my current flare even more intense and much more difficult to handle because I know there is no relief in sight anymore. But like I said, I try to not let it get the best of me. So now, I not only battle my body but this feeling that all hope is lost. It’s hard and it sucks but there’s no other choice. I have to keep moving forward and keep pushing for someone to listen to me. Someone to understand that I need these procedures and treatments and I’m not just trying to beat the system.
I have to constantly fight against the judgment of society who seems to view me as a “slacker” or “pill popper” as well and I am just so exhausted!! I don’t know how much more fight I have in me but that’s all I know…keep fighting. It shouldn’t have to be a fight though. I shouldn’t have to fight for “affordable” health insurance. I shouldn’t have to fight to make the Social Security Disability office realize that I am truly suffering and cannot work.
I don’t know how many times I have cried, sobbing because I just want my old life back! I just want to go back to work and live my life because this “surviving” that I am doing is not living. It is a soul-destroying exhaustion! Today is a bad day for me but I have some faith left that better ones are somewhere in my future so I will wipe my tears and continue surviving to meet each new day because one day, it will get better.