Please note that this was written in November 2013. In August 2014 I discovered that my estranged sister was experiencing the same symptoms as me. The neurologist that diagnosed me doesn't believe that I have tardive dyskinesia any longer. On October 1, 2014 I saw a different neurologist that diagnosed me with Psychogenic Movement Disorder. I do not agree with this diagnosis due to the fact that my estranged sister and mother have similar symptoms.
In 2006, I was mis-diagnosed with Bipolar Disorder which started me on the road of a million teeny, tiny multicolored pills. Anti-depressants, antipsychotics, benzos, and sleeping pills were just a few meds that I took. Every color of the rainbow was represented. I was told by all my doctors that this was the road to wellness. They fucking lied.
I took those psychiatric drugs for four years. Three of those years I was on antipsychotics. A question that I hear often from doctors is how I can be so sure that I don't have bipolar disorder. I laugh humorlessly and then answer, "Because I'm sane without the pills." In my head I add, "Duh. What a dumb fuck this doctor is!" Every medical problem shouldn't be answered with a pill. Pharmaceuticals are plant derivatives, but they're mixed with chemicals. Medication is not an exact science. I can't tell you how many times doctors have told me that, "What works for one patient may not work for another." It makes me shake my head when I hear it. How did I ever let myself become a guinea pig?
The antipsychotics that the psychiatric nurse gave me for my misdiagnosed bipolar caused my brain disorder that's called tardive dyskinesia and it has continued to worsen ever since. I finally got my official diagnosis just earlier this month after having this disorder for three years. It actually felt like a fucking relief to hear it. There were too many goddamn doctors that told me this shit was all in my head. I knew they were full of the shit they were referring to. I wasn't crazy. I was never as crazy as the pills made me. Why couldn't those doctors just admit that they didn't know what it was? It's not common. I get that it can be difficult to diagnose. I've seen a dozen doctors and only ONE doctor said he didn't have a clue, but he sent me to another doctor who added another piece to the puzzle. I had just about given up when I met Dr. Wendee, a chiropractor in Austin. She was convinced that it was the antipsychotics that had done this to me. I agreed, but I drug my feet in going to see the neurologist that she suggested. Most doctors are idiots.
The neurologist gave me a diagnosis and then directed me to another neurological movement disorder specialist. She gave me my official diagnosis of Tardive Dyskinesia. I didn't know whether to laugh or cry when she gave me the diagnosis that I've suspected all along. What will become of me now? What is there left to do medically? If I don't take the pills or let them inject botox into my neck then I will live the rest of my life in pain. Tardive Dyskinesia is not a good diagnosis, but it's mine nonetheless. I may own it, but I'm still a long way from acceptance.
My disorder has progressed more than Dr. Varga likes. She said that most people who have this disorder only have it for a little while. Great. Does this mean I should prepare to become another guinea pig? She wants me to take a medication that will make it almost impossible for me to live without drowsiness and other side effects. I would be lying if I said that I wasn't still considering it. I don't want to take more pharmaceuticals, but I don't want to be dependent on others the rest of my life either.
To be honest, I feel a little lost on what to do. I can't live with this pain, can I? Can I live with this daily pain? It's more than that. I have variations of pain levels throughout the day, but I am always in pain. Always. What I wouldn't give to turn back the clock and tell my past self not to take the antipsychotics then I definitely would, but that's not something realistic that will help me. I'm not sure if there are any real solutions here. The only two solution I've thought of are to learn to control my mind and investigate cannabis oil further. Perhaps it's time to truly consider moving to Colorado where marijuana is legal. Not only does it help with pain control, it could be the one thing that heals me.
One thing that I know for sure is that I have to live without stress every single day. Stress aggravates my disorder. I have to learn not to give into my fears, the inevitable depression that comes with illness, and self doubt. It's a tall order, but I need to learn how to do all of the above. I need to live one moment at a time and not worry so much about the future. That's a very tall order, but a necessity. I have too many fears due to my diagnosis, but I can't let them rule my life.