As the rain came down and we were headed to see my neurologist at the University of Penn, I was very encouraged and excited to see what the next steps would be on my journey with this funny disease.
I had taken a nap in the car and felt very good as we got to the hospital, the detour of the South Street Bridge was finally done and Dave was ecstatic that he could drive to the garage unobstructed (anything that involves getting Dave there quicker is always a bonus!) The walk from the parking garage to my doctor's office was long and I was really glad that I found a bathroom and had my wheelchair.
I love my neurologist and was so happy to see him. As I began to tell him about how my symptoms had progressed, I began to cry...he asked, are you sad?...I said no I really love my life, it was then that he noted that my crying was neurological and an additional symptom to add to my others. We then talked about how my symptoms have increased and are more frequent. I now get hours of being normal instead on days. As we continued to talk, I began getting episodic, my speech began to slur and I was unable to walk. This may seem to most as a bummer, but my doctor and his intern were so excited. To see a patient in full episode and see it come on is great for diagnosis.
As we talked about my diagnosis, it was determined that I do not have Episodic Ataxia but another form of ataxia that progresses at a different rate called SCA6. As my doctor put it, you won't die from this but you will die with it. We talked about my quality of life as my symptoms continue and how we can manage it. There are still only 2 medications that are approved for ataxia, I have used both separately and am now going to try a combination of the two.
For those of you who know me, I always held out hope that I would improve even in some little way. Well today, that was made very evident that this is not going to happen.
I have always said "who am I to tell God that He is wrong in allowing me to have this rare disease." Because if I really believe that God is sovereign then I can't talk out of both sides of my mouth and say that God should not have given me this rare disease.
Well as I left the hospital, I must admit that I was struggling with the fact that God was not going to make me better and not only was my thought process going to have to change but the way I live had to change as well. Wheelchair ramps, bathroom issues and other things that will help me and my family struggle much less. I am not sure when these changes will happen, but for the first time I am admitting that they must!
I was listening to one of my favorite artist, Rich Mullins, and was reminded by this song as I am not as strong as I think I am:
"Our hells and our heavens are just inches apart, we must be awfully small and not as strong as we think we are."
These were words that I feel every day, I often fell the inches between my heaven and my hell and it is then that I know that I am not as strong as I think I am.
But I have also found that when I am not strong, God brings me through the next episode and the day goes on!
I am so blessed to have 3 boys that love sports and that God has given them talent to play. Today it is Austin's Middle School Varsity game and he might even get to pitch! These are the things that keep me getting out of bed each day even though that it won't be long until I am back down again. As I always say, there is joy in everything.
Consider it pure joy, my brothers, whenever you face trials of many kinds, 3 because you know that the testing of your faith develops perseverance. 4 Perseverance must finish its work so that you may be mature and complete, not lacking anything
James 1:2-4
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