For the most part I left the rheumatologist office feeling high with an immense relief. No permanent joint damage was more news than I had expected to hear. As I said before, I think I prepared for the worst, and now I felt the burden falling off of me like a heavy weight that had forced me to my knees. There was a bounce in my step, a light footedness as I walked to the car and felt as if I was given a second chance at life. I looked to the heavens, winked at my guardian angel that must have worked overtime to protect me over all these years, and life was good at that moment. Life was very good and I couldn’t wait to share the news. One of the hardest things was not to tell you here on the blog, as I knew you needed the insight of how this all came to be first in order to understand.
The feeling lasted a few days until the insurance battle began and so said insurance didn’t want to cover medication X which was the pill form of the harsh drugs that were suppose to prevent the further damage, that mind you, never happened over the past eleven years. I had taken a few of the pills from the trial version the nurse practitioner had given me. The bottle was meant to hold me over until the refills kicked in and she had warned me that there might be problems filling the medication she had prescribed. I didn’t understand at the time, but know now that it is all about the money and the kick backs from the pharmaceutical companies. Two weeks later I received the notification from the pharmacy that medication X was not to be covered and that I needed to try medication Y first which were the syringe shots into the stomach or upper thigh. Only if I wouldn’t tolerate medication Y would there be a slight chance to switch back to medicationX regardless of that it worked for me already. I was to be put through the test to see if my body could handle it with little regard of the side effects. I wasn’t a fan at all and two appeals were filed from my doctor without success. Medication Y it would be or nothing at all.
Health wise I felt decent and I started to spread the pills out. First every other day and then in even bigger gaps. By now I haven’t taken any of medication X in probably 2-3 weeks, maybe even longer and I’m still holding. Medication Y was approved and the first shots arrived in November and another set of two just today. They come in a month long supply, one shot every two weeks. Both medications have about the same side effects such as cancers, heart failure, sudden death, infections, just to name a few, and believe me, the list goes on. I had already swallowed a few from medications X, but what got to me and did me in was the “Sharps container” that came with medication Y for the disposal of the syringes. The bio hazard warning on the box in-specific was what was especially disturbing to me. All I could visualize was that I was going to inject myself with bio hazardous waste. I know there is more to it, but I can’t go forward and at the moment the RA is back to being untreated.
I rescheduled my follow up appointment from December to February of next year and was hoping to have more clues by then. I’m not sure what’s ahead and if service might be denied completely since I’m not a good patient at this point and have gone against doctor’s orders. Luckily I am at a point where the pain levels are controllable, but what if it changes back again? I don’t really have the answers right now, I just know that the risks of the hardcore drugs to maybe remedy one problem are not worth to jeopardize so many other things. I feel with certainty that this is not my answer and I don’t care to slap a bandaid onto the symptoms. I want to treat the cause, but I understand that there is no money to be made off of me this way. So why would and should someone care? I’m not sure what the follow up visit will look like. One thing is different this winter, and it has been the least painful season ever since the onset of RA. The winters are usually worse and although there is still pain, it’s nowhere close to what I’m used to. I can’t help but wonder why this is. Am I just lucky and am I just catching a break? Have my prayers and yours been heard, or could it just maybe be that I’m starting to know enough about what I’m dealing with that there is a form of remission? That I’m putting some things into effect that are making a difference? I know it’s a big one, right….but I always said it “I’m a dreamer and without dreams there is no hope and without hope there are no miracles”. I believe that anything is possible…