Friday was Shot Day. I have cervical dystonia, and to help relieve the muscle spasms I get 400 units of Xeomin injected into various sites around my neck and shoulders, as shown in this graphic. I have to do this every three months. The doctor uses an EMG machine to help guide the needle into the areas that are spasming the most. The machine squawks like a police radio while he’s doing this.
I’ve learned to breathe my way through the injections. I typically need a few days of downtime after the shots as I usually experience some post injection pain. This is my third time with this doctor and he’s still trying to fine tune dosages. It’s an art and a science to figure out how much and where to place this injection. This time I got 100 units alone into my right trapezius, the muscle I refer to as “the bad boy.”
This time was the first time in three years I’ve been able to drive myself on Shot Day. I mention this to the doctor and told him it was a good thing because my son needed to have his pacemaker checked. At this point I’m used to people being a little stunned and not knowing what to say to me, so I’ve kind of learned to just smile at the shocked silence.
I was even able to stop at Target on the way back and pick up a few groceries. I love to shop at Target but one thing I hate about is they do not automatically put your bags in the cart and I find myself having to wait a few minutes with all the grocery bags piled up, customers waiting to pay behind me and wondering to myself if people think I’m a prima donna for asking for help. Nobody has said anything yet. I’m not sure how obvious I look. I have some dystonia awareness cards to carry around with me but I keep forgetting to take them.
I planned on a quiet Saturday resting but our usual respite provider was not able to come and I had Nicolas in my room every 10 minutes asking if he could play outside in the 90 plus heat. By noon I was snarling at everybody. Things settle down after lunch and I sit in bed with my iPad. I track what is going on with #JusticeForEthan on Twitter, play some Candy Crush, join a few blog networks and discover 10 new posts written about Mrs. Hall. I mentally resolved to run a drama free blog and almost immediately begun wondering how long that would last. Finally settled in with the Kindle app and finished a book.
We were asked to speak for a few minutes at church on Sunday. I never liked public speaking before and now with my neck I have one more thing to be self conscious about. It went okay and I think I was probably pretty straight. I’m sure nobody listening noticed but this is the social anxiety I’ve developed since the diagnosis. You’d think being around the disability community as much as I am that I would have let some of my vanity go by now but that hasn’t happened yet.
I am still waking up at night thinking I am back at the beach. Come Monday I am vaguely considering returning to aqua zumba then the stiffness reminds me to give it a little more time….