It has been a little over a year now since I started trying to wean myself off my seizure medicines. I did all the tests my neurologist asked me to do and we considered all the facts: the last 10 years of being seizure free, the levels of my medications at the time and the likelihood that I might actually be able to be medicine free as well.
The possibility was very exciting to me. I had been taking about 1200mg of barbiturates a day for the last 22 years. I was so excited to try it out I wanted to start the minute my doctor told me that she thought it might work. Her approval came with many warnings that it might not work, that I may need to be on either a smaller dose or a newer medication. I accepted that fact and that I would not be able to drive and that I had to cut out all alcohol, even my beloved microbrews. I was ok with all of those rules. I was just so excited that it was even possible to attempt to see if I could be off medicine.
Keri, on the other hand, was not so excited and I don’t blame her. She went to my appointments with me and asked all her own questions. She was very apprehensive about the whole process. She was going to be the one that had to, consciously, deal with the stress of experiencing my seizure. Which we have talked about at length and I understand, now, how hard it is for her to feel so helpless. I have never witnessed a seizure. I have only experienced them on an unconscious level, which by the way, is certainly no picnic either.
I really appreciate Keri for putting herself in a vulnerable position for me and the possibility of something better for me, even though it was risky. I appreciate all the things she did for me during that time and all the people that supported me through that process. The ones that volunteered to administer the emergency medication, if I had a seizure, the ones that gave me rides, the ones that picked me up at random bus stops in the pouring rain and the ones that offered support and words of encouragement on Facebook. I am very grateful for all the awesome love around me.
The weaning process took three long arduous months and I did wean completely off ALL my medications. I was totally med free for a whole month. Then one day, I woke up sitting in a chair, in the admissions department of the ER.
That was a very strange experience.
Keri was there with me, of course, and I was trying,… to,… figure,… out,… where we were,… and,…what,… we were doing,…And then I began to cry,…
All that excitement, all that effort and all that hope right out the window. It still saddens me to reflect on that moment of defeat. BUT, and that is a huge but, I am still alive. My seizures are controlled by medication AND I was 100% successful in reducing the amount of medication I take. I only take 500mg now and I can drive.
I, often, think about that part of my life and just take a deep breath. I am very grateful for what I have, plus I earned the privilege of being a permanent honored citizen.
Thank you Tri-met! I am grateful for your buses and I am grateful I don’t HAVE to ride them every day.