If you choose to read this, please understand it is hot a happy piece. I am not going be light-hearted or make jokes. I never blog to gain pity, although it will be given. As an advocate for my disease, I share this so you understand the harsh reality of living with CD. In one of my recent pieces, So Today Sucked, I blogged about my February 2017 appointment with my neurologist. Here’s what I couldn’t say at the time.
So, I have been living in denial. And it has been blissful. I was in such denial, I was actually looking forward to visiting my neurologist. I eagerly anticipated telling him what a great year 2016 had been. It really was. This is by far the BEST my body has been since my diagnosis of cervical dystonia in my early thirties. However, I am living on borrowed time.
The first question I was asked is a common one for anyone who suffers from chronic pain. “Have you had suicidal thoughts or thoughts of self-harm within the past year?” Uh-oh. I forgot I was going to be asked that question. How could I forget that? I’ve struggled with chronic depression since I was a teen. My neurologist took me off my anti-depressant years ago and won’t let me take another. So, yeah. I wasn’t going to lie.
In August, I was in 100% remission and enjoying my stress-free, hot summer in the sun. No grading papers or planning lessons; yet I had a complete and scary breakdown. It was bad. Let’s just leave it there. And so two minutes into my annual appointment, I wanted to go back home. I wasn’t so eager anymore.
The second question, “Are you ready for Botox yet?” I anticipated this one.
No way. I came with my impenetrable brick wall built and quality tested for durability.
“You realize you are living on borrowed time?”
No… My neurologist kicked a hole through my brick wall. Damn. DAMN. When I peeked through the hole, I saw the enormous piles of denial behind it. My current treatment plan: several medications, physical therapy, and 4-5 daily massages made my symptoms manageable. However, Valium, the drug that keeps me on my feet and allows me to continue working full time is destroying my body. I knew that. I chose to ignore it. Valium will weaken my muscles over time, and unless I abandon it, the damage will be irreversible. And the damage will likely be severe. Valium also messes with my speech and memory BIG TIME. I mix words up and cannot grasp nouns. What you don’t know, is how hard I work to form sentences every day. But, I figured a tiny price to pay for feeling so good. At least, that’s what I told myself. Did I also mention I am a walking zombie? It’s a sedative too. The large amounts I take daily, cause me to live with never ending lethargy.
B-U-T, Valium allows me to work full time. I maintain a steady stream of the medication in my body at all times. When I move on to other treatments that won’t be the case.
Then on the back burner this visit, I was also diagnosed with essential tremors. Which I also was aware of, but chose to ignore that one too. Funny thing? There is a good chance the Valium is currently suppressing my tremors. Go figure. So, no Valium in my system could lead to big tremors. And Botox won’t fix tremors.
After much crying and pity partying, I can’t deny my life is about to change big time. It is all a question of when. I am thinking this summer. There are many negative questions floating in my head. “What if this is the best thing that could happen to me?” is not one of them. I am not trying to be pessimistic. I understand the benefits and I know the shortcomings. I also understand how adding in vestibular neuritis makes my condition unique. All my questions tend to head down a path ending with, “Am I going to be a 40-year-old who ends up on disability for the rest of my life?”
I guess we will see what June brings.