I started off this morning with a phone call from the Mayo Clinic. They were looking for an update on my condition, as I started yet another stage down on the steroids. Besides the cold I have been fighting, I ran down the list of my symptoms: headaches, tremors, lack of balance, and high blood sugars. Some of these are from the steroid withdrawals, and some are from the scrambled brains...just kidding Stephanie! My sister doesn't appreciate my sense of humor!
I am still having disconnect problems where my brain is not communicating well with my hands, feet, bladder, heart and now esophagus. The Mayo doctor explained it by saying that the episodes I had this past summer were similar to having strokes. While it wasn't full paralysis, the nerves had to find new pathways to communicate with the rest of my body. Since I am younger than most patients, my body compensated well. Unfortunately, it will take a long time for the nerves to remember their original pathways. Some pathways will never be restored, but we are optimistic. I am now at 10mg of steroid. I have only been on a full dose of the anti-rejection meds for two months. It may be another month before they have built up fully in my system. This has the Mayo Clinic impressed. They did not think that I would be able to reduce the steroids so quickly.
They provided me with a game plan for the next few months. It is important for me to get off the steroids as soon as possible since I have now developed a lump on my neck and my blood sugars are fighting the withdrawal. They are worried my body is becoming too dependant on the insulin. They told me what to do if I have another relapse, and have asked me to consider returning to Minnesota for additional testing, but there is not a rush.
Their final instructions were to have a great New Year and not to blow anything up, seeing how my crackhands and fireworks are not a good team! Haha...just kidding! I hope you all have a great holiday! Be safe!
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