Too Many Chefs

I’m exhausted today, but thankfully my driver kept me on pace for all of my appointments. I couldn’t do it without you Ed!

First I met with the neurologist. His personality leaves much to be desired, but he went step by step explaining what I need to know moving forward with myasthenia gravis. The blood work does confirm it and so he’s prescribing a course of prednisone to help get the eyes working again. I told him the mestinon hasn’t been working and has instead caused me so much stomach pain and diarrhea, even in the middle of the night, so he said I could stop those meds - thank God! The days of having little to no meds are still a long ways away…I’m just trading one for the other right now, but I’m hopeful at least this one could help me. And also hopeful that I can gain some weight back without feeling sick all the time.

I just want to be able to see again. Do you know what it is to be blind for a month? I have tripped and fallen. I’ve bumped into things and people. It’s demoralizing. I’m so tired of it. 

Next I saw the eye doctor. He encouraged me to start the prednisone, but this is the trouble with working with several doctors, they all have a different philosophy on how they would run a course of meds. He would start me high and taper off. The neurologist will start me low and keep me there. The neuro-ophthalmologist would start low, taper up and then down again. Too many differences and not enough information to know which way is best…I just need to move forward either way. He was perceptive enough to say that right now I have too many chefs in the kitchen and he would step aside for my treatment. I appreciated that because I need to focus my efforts with just one doctor. I will continue to work with this neurologist until I meet with the neurologist at Penn, but that’s not for another month, my eyes couldn’t wait that long. 

I came home from a long day of appointments to this wonderful surprise! How thoughtful of you my friend! I’m touched that you’re thinking of me and sent me this beautiful plant to care for, it takes my mind off of my troubles! Thank you so much!