When I first began writing this blog about my journey with cervical dystonia, my goal was to write one post a week. But as you have learned, the battles I fight on a daily basis with my neurological movement disorder make it impossible to plan ahead. I have to live every moment as it occurs, since I never know what my health has in store for me.
For people diagnosed with cervical dystonia, one of the few ways of managing our pain and spasms is to have a large dosage of a prescribed toxin injected into the spasming muscles. For me, the poison (not of choice) is Botox, so when I go in to get my injections, I never quite know what to expect. Sure, I know I will be in pain throughout the procedure as I feel the Botox sear through my body, over and over and over again. And I know Dr. D. will sit behind me, carefully touching the back side of my body, in search of the spasms he will soon be attacking as he gently prepares me for each one, “Poke.” The louder the static is on the attached machine, the more confident we are that a needle was inserted in the right place. We can actually hear my muscles oscillating! Lucky for him, he doesn’t have to feel them “dancing” too. The average number of injections I receive during one visit every 3 months is twenty, affecting everything from my lower back to the top of my head. My doctor knows I’m joking when I refer to his office as “the torture chamber”, but in many respects, that’s exactly how it feels. Fortunately, Dr. D makes me laugh, but I dread these appointments because they’re so painful. Yet, the suffering from the inoculations doesn’t end when I walk out of his office.
For the next two weeks, my body is at war with itself, which is why I can’t see my physical therapist during that time. The way she explains it, the boxer in the one corner knows that poison shouldn’t be entering my body so it fights to knock it down and eject it from the ring. At the same time, the Botox moves towards its opponent to duke it out because its job is to calm my muscles so they don’t spasm as much. As a result, going to therapy would be a waste of time. My PT would be the third boxer entering the ring, and she already knows she’s going to lose.
I’ve had mixed results with these injections, but for the most part, they haven’t been very successful in managing my pain. Then why do I keep getting them? I asked my doctor that very question two weeks ago when I had my last round of injections. Just a few days before my appointment, I had heard about a few other toxins that people in my Dystonia support group had used and gotten some relief from. After 4 1/2 years, I needed to initiate the discussion to find out if there was another medication I would respond better to, something that would provide relief from my spasms and pain, even if only for a short while.
In order to find out if I should be injected with something else, my doctor ran a test called an FTAT where he injected a small amount of Botox above my right eye. My left eyebrow was the control in this experiment. It was my job to look in the mirror for a week and raise my eyebrows to see if the right one weakened. Within two days, I saw many lines appear above my left eyebrow but only one line above my right, meaning I was not immune to the Botox. If I had been, that would have ruled out using any number of toxins within that class of medications. So even though that question had been answered, it led to the next item up for bid within those first two weeks, the side effects.
A few days after my injections, I was on a plane to Birmingham, Alabama, for a civil rights conference and the 50th anniversary of the March on Selma. Having just gotten a large dose of poison introduced into my bloodstream, I knew I would be feeling the battle within me. While I still made sure to care for myself by sitting against a wall when I needed to, lying down every chance I had, and having my neck pillow attached to me at all times, I knew I had to persevere, or I would miss this once-in-a-lifetime opportunity I was about to experience with 30 other members of my Unitarian Universalist congregation (an experience that will definitely be the topic of a later post).
Having only been gone for three days, I still knew my body would need some time to recover from the trip. However, I was not prepared for the side effects I began to feel just a day after my return. When I took a bath, I discovered that I couldn’t lift my head out of the tub. This struggle existed any time I laid down. When your head literally feels like you’re carrying one hundred pounds of bricks on it, it’s time to call the doctor. He told me what I unfortunately already knew. I will continue to have this side effect until the toxin begins to leave my body, a process that slowly takes place over three months. In the meantime, though, I’ve had to figure out the best strategy for lifting myself up. The secret to my success has been rolling over on my side so I can push myself up with my arms. All that work just to lift my head! Oye!
The other side effect I noticed was that I was dropping things. If only I’d found this out before I picked my I-Pad up off the stove. It fell onto the floor and shattered into hundreds of pieces as you’ll see below. Not only did the glass shatter, but some of the black frame pieces broke off as well.
While the glass can be fixed, albeit an expensive one for this gal on disability, I realized that I cannot. I will always have those black frame pieces that are missing, forming jagged edges on the corners of my device, making it impossible to fully protect my body from harm. Unless someone is wiling to fund the research for a cure, there will always be a boxing match taking place in my body, whether it be in my brain, at various points between my head and lower back, or in the form of emotional struggles (another topic worthy of its own post). I hope that dream will come true during my lifetime. But as I choose to live in the present moment, I will continue to learn how to live the best life possible now, making the most out of each and every day.
My Hope: Over the past few months, I have also noticed an increasing loss of balance, causing me to stumble into things, trip and/or fall. I can’t tell you how many times I have fallen or tripped in public, and no one has walked over to help me or ask if I’m okay. I’ve gotten far beyond the stage of embarrassment and advanced to the stage of frustration because no one has cared enough to help.
I hope that the next time you see someone stumble or fall, you will help them, even if it’s a stranger. Not because they may have a neurological movement disorder like me but because it’s the compassionate thing to do. Reach out your hand to pull that person up. Use your words to ask if that person is okay. Or lead that person to a safe place to sit to make sure he/she isn’t injured. It’s so simple to show you care, and I’m positive this is what you would want if you were in that person’s shoes. We all deserve to be lifted up, and it’s up to all of us to make that happen.