“And still, I wait in the Void between an in-breath and out, snared and tangled like a Shade who sees life all around but cannot touch or sob or walk back into her life.”
As I read this description of the main character in Gail Strickland’s fantasy, “The Night of Pan”, I felt like someone was finally describing me. I’ve been stuck for 6 1/2 years with my Cervical Dystonia diagnosis. However, since my appointment at the Mayo Clinic in August, I have never felt so lonely. A prisoner in my body and in my own home.
Why would I feel even more trapped now than I did before? On that fateful day, the neurologists said they weren’t sure that I had been diagnosed correctly. While this really shouldn’t surprise me, since many of us hear these words at one time or another, it really hit me hard. If Mayo Clinic doctors don’t think I have Cervical Dystonia, what have I been suffering with all this time? What if the treatment of my symptoms back in 2010 actually created my “disorder”? Grappling with the possibility that I may have been robbed of these vital years of my life due to a misdiagnosis, it knocked the wind right out of me.
In order to help them make a proper diagnosis, I was told to do two things: take 3 tests (an MRI of my neck and 2 EMGs) and taper off all my medications. With the help of my U of M doctor, I’ve been slowly weaning off my prescriptions. And that’s exactly what has turned my life upside down, making me feel like I’m not anywhere close to living a life I once cherished.
So what happened? I got myself off the Klonopin without significant withdrawal symptoms. But once I started removing Tramadol and completely stopped taking the medicinal cannabis, my days became a life sentence. You see, when I was taking all 4 of my painkillers and muscle relaxants, I had to nap in the morning and afternoon because I was so tired each and every day. Now each minute drags out. What am I supposed to do with all of this time on my hands?
My neck pulses with a burning pain. That same pain sears through my shoulders and upper back, with no medications to help manage the pain. I thought living with an average pain level of 7/10 was difficult. And that was with 4 medications! Hating the site of my bedroom, I twist and turn after crawling into bed, unable to find a “comfortable” position. Every night since I stopped taking medicinal THC and Tramadol, the pain has woken me. So I do what we’re not supposed to do. I continue to lie in my bed, hoping that I will eventually go back to sleep. Waiting. Wishing. Praying that I’ll finally be able to stop hoping and start sleeping. Yet, I don’t. Do you know how frustrating it is to not sleep at night or during the day? This pain and inability to sleep is compounded by having daily headaches that are different than they were before. But just as painful. While this insomnia caused by my chronic pain isn’t a new issue as I’ve already seen 3 sleep disorder doctors, I’d started getting 7 hours of uninterrupted sleep during the month I was taking the Medical Cannabis. So I’m left waiting. Again.
I long for things to do. For people to interact with. For Someone to be with me so I can be a better mom to my furry kids. For someone who can give me some answers. For the ability to yawn. For a life with purpose. If each one of us has a purpose, I’m dying to know what mine is. I can’t imagine it’s constantly trying to figure out what to do with my time. Read, go outside, listen to the radio, watch TV, repeat. This isn’t the life I wanted, nor is it a life I’d ever wish upon someone. If anyone thinks this sounds great, I’ll gladly trade places with you. I’d give anything to have my life back.
This may all sound depressing. It is. I don’t have a lot of hope right now. Two-thirds of the tests I can’t have done until October because all of the Botox from my July injections has to be out of my system. Given the fact that Fairview and my insurance company won’t approve a return visit to Mayo, how am I supposed to move forward once I have the results back from my tests? More waiting until I can change my insurance plan?
Instead of my usual hopes, I’ll leave you with this, a song I’ve been listening to a lot these last couple days. I truly hope each of you is living in the light because I’ve had enough darkness to last a lifetime.