Reality

I had my last remicade infusion the first week of September. I wrote my last blog the week before. At the time I was back to my regular infusion schedule of every four weeks, but alas was at the point of needing to start flying to Denver and driving to my doctors office in Fort Collins, or taking the dreaded step of finding a new doctor where I lived...crazy idea, right?! I found it to be a horrible experience when we moved to Salt Lake City...vowing to not do it ever again. Well finances and a new knee took over. I needed to stay put, continue my recovery without a mini vacation every four weeks, and I needed to focus my finances on paying for my knee of course.


To the disgust of my orthopedic surgeon, the rheumatologist he highly recommended was currently not taking new patients...just my luck was my thought. I got in with one of his younger, quite green associates. I wasn't sure about him till he apologized for what became a scary reality for an RA patient that strongly desires to never feel as awful as she once felt.


By the time I was to receive my next infusion at the end of Sept, my new rheumatologists nurse had royally screwed up. I still don't know how it happened, but long story short, she did not contact my insurance or the hospital pharmacy until the week I needed my treatment. It turned out that Avera McKennan did not accept medication being mailed from a specialty pharmacy, which my insurance used. The had a strong no brown bag policy, which I've not ran into anywhere else. This meant no treatment for me. I flew into a full on flare, starting with my rheumatoid arthritis, then moving naturally into my fibromyalgia. That was a scary reality to be faced with, and as winter came early in South Dakota, my flares became worse.


I chose to start a new medication, approved for use in the United States in 2012, Xeljanz. It was a pill, twice a day. It seemed much better  then infusions or shots to me. It was the fourth biologic I had tried in three years time. I went back on prednisone. I felt awful, joint and muscle pain, inflammation and pure exhaustion. When symptoms are severe you begin to feel removed from your own life, grasping to have the energy to do the basics that must get done.


I quit blogging because I didn't have anything I felt was inspirational or helpful for anyone to read. My husband asked about a month ago why I hadn't blogged in so long. I share with him, and his reply made sense. He asked, 'don't you think it'd be helpful for people to read and know your reality, even if it isn't positive all the time?' This made sense. I certainly find many blogs that are inspiring and positive, and while that is my intention, I've come to the conclusion that real may be more helpful then nothing at all for myself, and perhaps a few readers.


The reality of living with rheumatoid arthritis and fibromyalgia is that you have to be strong and you have to fight, sometimes every single hour of the day to live your life. There are days, weeks and months for some of us with severe disease activity that everything hurts, every joint and muscle and every movement. Reality is that we can have extreme exhaustion and fatigue...nothing else I've experienced compares. Reality is that on top of it we feel weak. And a new reality this time around for me is that my memory has gotten bad. So bad that one night in bed, I turned to my husband and joked 'aren't you going to give me a kiss goodnight?' His reply, 'I just did.' Wow. I had no memory of it.


The severe disease activity I'm currently experiencing has crept into my new prosthetic knee, which I had no idea was even possible. Not good. While I normally stay very positive, there's not really an alternative in my mind, this week was tough. The news of why my knee has been swollen again for two months was quite a blow. 


I'm now starting my fifth biologic treatment in just over three years. It's called Actemra. As with all treatments, I'm hopeful that it will work. Results will be in around three months from now. In the meantime I'm back on prednisone, a necessary evil. The best recent news for me is that I convinced my doctor that my body cannot take anymore Methotrexate. The nausea from the shots was not fun. And so now my stomach is definitely feeling better:)


Be well and stay warm wherever you are currently reading from! Till next time my friends.