I have realized lately that for the past 14 months I have gone through a grieving process with my Dystonia. When I first went on the offending meds last August I remember blogging about the side effects and trying to research what the hell was happening to me. My psychiatrist was useless in her response and management of the condition. In my dark moments when I think I am unable to live like this I write ugly things to her in my suicide notes.
The worst part of my early research was reading that Tardive Dystonia or oro-facial dystonia has no cure and the condition can last for weeks, months, years or forever. FOREVER? What the f*ck? I cannot live in this much pain that long. Looking back I see how I have truly gone through the process of grieving in the loss of a part of my health and quality of life. Initial shock and denial are stage 1. This simply can’t be and I won’t accept it and I will find a way to get rid of it. I will not have this disability and if drugs caused it then I must find other drugs to get rid of it.
Stage 2 was anger. Anger at Cruella de Renata the psyche, anger at the non-move to Singapore which was the straw that broke my back after a few shit years of stress resulting in zero serotonin and high cortisol. At the time I even felt proud of myself for crawling up off the floor and seeking help. My anxiety has spiraled to the point where I would get lost driving home because my brain was just finished. I was finished. I needed meds to get me over the hump and back on my feet. I was angry at myself too. I was angry I had to go through a hectic brain op with 22 ugly metal staples in my skull and still the Dystonia stayed. It felt damn unfair.
Oromandibular Symptoms
- clenching or grinding of the teeth (bruxism)
- spasms of jaw opening
- sideways deviation or protrusion of the jaw
- lip tightening and pursing (addicted to lip-ice)
- drawing back (retraction) of the corners of the mouth
- deviation or protrusion of the tongue. Constant spasms of the tongue
- jaw pain, extreme palate pain
- difficulties speaking (dysarthria). (At the end of the day I can hardly read my daughter a story)
Sadness and Depression come in at 4 and tend to reoccur every so often. The pain is debilitating. I have got used to dealing with my chronic back pain. I am on Celebrex daily which is an anti-inflammatory and I have facet blocks once or twice a year so I manage the pain. But my mouth? And FOREVER. That’s a fucking long time. Imagine downing a cup of boiling hot water, well that’s how my mouth feels on a bad day. I felt like I couldn’t possibly live in this much pain forever which means I clearly had to take myself out. Oh wait, I have kids, a husband and a family. I am not allowed to take my own life which means I am stuck in this. For another 40 years. That’s so scary long!! What is also scary is that I am clearly unable to handle any psychotic meds so no anti-deps or anti-anxiety meds for me.
And finally at stage 6 we have Resolution and Acceptance. What the hell can I do about it? I will try different meds, approaches, therapies, alternative healing but currently there is no cure for Dystonia. Stress makes it 10 times worse and many people with Dystonia are unable to work. Unfortunately my studies make it worse but I refuse to give it up. I want to earn my degree and I want to have a career and earn my own money even though this will only happen at age 47. Many people have accidents in their lives that change things forever and so many are worse off than me. I am grateful for many things and the fact that I can still exercise is huge. People with cervical (neck) dystonia are often very restricted. I am currently on day 6 of new meds and I think they help a little. I did have 2 intense days of stress this week and it was so clear the immediate effect on my mouth to the point where I had bitten holes in my bottom lip. The storm has kind of cleared, stress levels reduced and my tongue spasms improved. I will still continuously ask God to reverse this but I accept his answer of not now or maybe never and I will handle it. I am handling it.
