I was discharged from the hospital today, and it is good to be home. I can take about 2-3 days of that, but it starts getting old after that. The food is better here, too. ;-) The good news is that they found lots of things that are NORMAL in my body. They did not find the "problem", though. It feels odd to have so many normal things going on, when something is so obviously wrong, at the same time. Aren't our bodies awesome and complex?!!
Opsoclonus - Myoclonus is the clinical diagnosis at this point, but unfortunately it is quite rare and my neurologist had not seen "since he was a resident". I was not even sure he had seen it then, or perhaps just read about it. Since he has ruled out so many things, he is still not sure how to treat it. I guess he has not done the same research on the internet that we have, has he? ;-) He wants me to return to my opthalmologist this week to see if the Opsoclonus is still there (it is), then have that doc report back to him. This will continue to be a process of going from one doc to the other, until something can be decided. He is talking about perhaps sending me to Mayo, but I am not excited about that. There is a doc in Philly that has done some research on this, so I will see if I can print off some information to take with me to the eye doc. Maybe he will share it with my neurologist.
What I came home with, more than anything, is the understanding that God has simply made my body very different and my life may never be what it was before. I don't know what that is going to look like from here on out, and I pray that He will indeed lead some doctor to an effective treatment to return my health. However, I know that He knows what is in store for me, and right now, today, I need to understand what changes I should make in my life to adapt to the life He has for me. This does not mean that I am "giving up" - rather it means that I am going to try to give God the reins and not try to do it all myself.
I have made a few changes already - stopping all caffeine (sodas and chocolate), wearing sunglasses when I go out, cutting back on activities, not driving much, riding carts in the stores, etc. I really want to try and build my stamina back up, but will need to go easy on that, most likely.
Thank you so much for your prayers. I am humbled to realize how many folks have been praying for me.
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Praying for you, my friend. I remember going to the doctor, ER so many times knowing something was wrong, but never getting a definitve answer until I began passing out and seeing double and tripping becasue of drop-foot and haveing numbness... When i went to the ER that time, they did an MRI and a battery of tests that he said would determine if I had a brain tumor or multiple sclerosis. I was actually relieved it was MS, but stil quite shocked. Because my only memory of MS was my college prof's wife that was in a wheel chair, she had slurred speech and he had to feed her. THANKFULLY we are in the hands of a sovereign God that wants the best for us and not in the hands of blind chance. Love you!
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