DENY, DENY, DENY

As you know, Steve and I made the decision in May of 2019 for me to resign from my position as BIST Consultant. The company was gracious enough to give me an opportunity to try working part time; however, my pain level did not cooperate.  This decision was based on my increased pain level, the low quality of life once home from work every day, and my mental mindset.  I was plagued with grief from losing my old self. Not to mention, I hadn’t been offered any type of treatment since the middle of 2018.  Tramadol was supposed to be the cure all. Guess what? It wasn’t.

At the end of October 2018, the orthopedic doctor I was seeing referred me to a pain management doctor. As usual, I waited and waited and waited for approval. FINALLY, a pain management doctor was approved. Could this be what I’d been waiting for to help me feel better? HA! Nothing has ever been that easy in this journey.  While the doctor wholeheartedly agreed I had CRPS, he wasn’t sure how to treat it, so he sent me off with Tramadol. He said, “Now if you do some research and find proven treatments, fax me the information and I will request it for you.”  SAY WHAT? Isn’t that what this doctor was supposed to be doing? (Suggesting treatments to help me manage my pain or get rid of it?) I cried all the way home thinking I want my old life back. I can’t do this anymore.

While working full-time as a BIST consultant that year, I would spend the little time I had feeling ok, researching, asking questions on message boards, and contacting a CRPS website called rsdsa – supporting the CRPS community. When I’d read a medical journal with credible resources, I would print and put in a file. As surprising as it sounds, there are some things that can be done in the medical community to help patients who are suffering from CRPS. They aren’t cure-alls, but the research shows they’ve helped other patients manage their pain. Once I felt I had enough “reliable” research and data, I would fax the treatment information to the doctor. He would then write a referral to the powers that be and then we’d wait. WAIT, WAIT, WAIT…

Still we’d wait, wait, wait… I would call frequently to see if the doctor had heard anything, but the answer was always, “Nothing yet.”  Eventually, I would get a phone call from the doctor saying the treatment wasn’t approved; it was DENIED. So, I’d go back to my research and fax another type of treatment. And again, I’d wait and wait, and finally get the phone call it wasn’t approved; it was DENIED. I know I’ve said this before, but I truly believe I should have my Google medical license.  : – {   The words DENY, DENY, DENY reverberated through my mind. Again, this went on for at least 10 months. I was losing hope quickly. Trying to work while in pain and being a researcher and doctor was proving to be far too much.

It was at this time, I really started grieving the loss of myself. I’d tried to go back to work. I’d tried getting the help and treatment I needed for my pain. I did everything I knew to do to help manage my pain, but I failed. I failed. I failed to keep the strength I knew I needed to get by every day. I failed to stay hopeful about my pain magically disappearing. I failed at believing my situation would get better. FAIL, FAIL, FAIL. There was nothing else for me to do. That’s when I starting thinking about the old Stephanie.  The old Stephanie would have continued fighting, would have been positive, would have known she could get through anything, and would have had the strength to make it through this time of denial and failure. The old Stephanie had dreams and goals.

But I wasn’t the old Stephanie. I was the new Stephanie who lived with excruciating CRPS pain and who had a large amount of limitations. I was weak, tired, confused. I had only one dream and that was to be pain free! I was the new Stephanie who didn’t have any medical team to help deal with the pain. Although I continued doing everything I knew to do from praying to physical therapy to mindfulness to ibuprofen and Tramadol, the pain just wasn’t subsiding. It had been a little over 3 years since my fall, and I was still dealing with the repercussions of playing a game of kickball. I honestly felt I was living in a nightmare that just kept repeating itself over and over and over again.

Then something happened. In July 2019, something changed. For the life of me, I still can’t believe it took something so simple to get people to want to listen. The problem was although they may have listened, would they follow through with what needed to be done? Or would it be DENY, DENY, DENY all over again? If you’ve kept up with my journey, my guess is you may already know the answer.