Thursday, September 22, 2011

Into the unknown

Fear, is quite possibly, my greatest road block.  My initial instinct is usually to run away, shut down, hide.  It has gotten in the way of me achieving goals, taking care of myself, and maintaining healthy relationships.  It has, at times, consumed all of my thoughts, and left me feeling completely disconnected and empty.  Over the past year especially, I have begun to take baby steps towards conquering fears.
In many ways, I have turned some of my fears into my biggest motivators.  My fear of having a permanent head tremor has motivated me to become my own advocate.  The fear of never being diagnosed led me to call every doctor I could find, so that I could get treatment.  Fear of being told "no," motivated me to keep asking until I heard "yes."  The fear of being judged, helped me find ways to inform people.
For the last 16 months, I have been "satisfied" with treating the "tardive myoclonic cervical dystonia," with six rounds of Botox.  I was content knowing I could continue Botox, every three months for the rest of my life, to slow the tremor, even if the effects only last  6-8 weeks at a time.  But I still have felt the fear and uncertainty, that no doctor, specialist, or expert, has been able to definitively find the cause.  I've been informed there are a host of possibilities.  An adverse reaction to medication, an autoimmune response, a permanent side effect of medications and/or electro convulsive therapy, a reaction from an infection, a predisposition to a movement disorder.  The list is vast.  Regardless of why I had this reaction, my ultimate motivator is that I will do whatever it takes to make living with this, just a little bit easier.
Recently, I have been discussing with my team, the possibility of going inpatient again, to do a complete medication washout.  Because I am still on some of the medications I was when the tremor first started, my team and I agree that it can't hurt to try eliminating possible contributors.  The idea that the tremor might slow, or even stop if I go off all medications, is thrilling.  The fear of having to go back into the hospital scares the bejeezus out of me.  Although I would not return to the hospital where the tremor first started presenting itself, but rather a private institution, I can't help but feel the fire of anxiety burning in my chest when I think of my last hospitalization.  Granted, I was extremely more depressed, and had not honed many coping skills at the time of my discharge.  But I have to make clear, that part of the reason I have been able to come out of such a deep depression, was because of the careful balance of medications.
I'm choosing to use this fear as another motivator.  Reminding myself that by voluntarily admitting myself to a well researched facility, with clear goals in mind, my "team" completely supporting me, and setting boundaries clearly before I go off all meds, means I may be one step closer to easing, if not curing, the tremor.  I know that I have a much broader range of coping skills to help, should I start to slip into the abyss of depression.  And I am aware that there is a possibility that I may end up back  where I am now, with a tremor that is treated with Botox every three months, and a daily regimen of medications.  It is an unknown I am willing to step into, with fear, but also with hope.

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