Wednesday, May 31, 2017

Four more days until Toronto with Dr. Joaquin Farias

In my never-ending quest to get better and have a greater sense of normalcy in my life I am going to Toronto, Canada next week to see Dr. Joaquin Farias. Dr. Farias is a world-renowned specialist in the treatment of all types of dystonia using movements to heal the body. He holds workshops for several types of dystonia and am I excited to meet the other people who will be attending. He said the groups usually range from 8-10 people. I am hopeful that he can help me manage my symptoms along with the combined efforts of all of my other doctors. 

My primary goal is to avoid Deep Brain Stimulation surgery. I have seen how amazing this surgery works for some people and for others it has not. If it comes down to being my last option I will definitely try it. In the meantime I am at week 6 of my Botox injections and have been able to do a little more activity with rest in between. Walking my son to the park and watching him play is like a dream come true. The Botox is like a mean trick. It fools you into thinking you are getting better, but it is just a temporary reprieve from the insane pulling and twisting of the dystonic muscles. It has still been a HUGE help in making my days a bit more bearable and giving me the ability to do my therapies with much more ease and range of motion. I do not think of suicide as often as I used to. I feel a bit more hopeful. I have smiled. Not the usual "putting on a good face" smile, but really smiled and felt truly happy for the first time in over 3 years. It is fleeting but I'll take it and hope that it blossoms into better days ahead.

I also had my disability hearing last week. That was the most physically and emotionally draining thing I have done in a long time. The reality of accepting that I am unable to work or drive a car along with everything else I used to do was tough. I knew it was coming. Being under scrutiny and people questioning if your condition is "real". It's freaking real all right. It's the hardest job I have ever had.  I work so hard every day in the hopes that I may be able to enjoy all the activities my family and I used to share. Snow Skiing, Frisbee, Swimming, hikes (you get the picture...I was active). 

My beautiful family. 

(And Botox at it's peak-Head straight!)