I saw my myasthenia gravis (MG) neurologist today for a followup. I’ve been having a decent run with symptoms for a few months. I still have crazy, weak episodes but I’m recovering from them faster than I have in the past. I’m only on Imuran (aka, Azathioprine) to treat symptoms. I’ve run the gamut of Mestinon, prednisone, and IVIG. Imuran seems to be the path that’s working for me.
After completing my strength test today, the neuro sat back, looked at me, and had teary eyes and commented that I’ve come a long way since this time last year. Yes, it has been a crazy, long journey. I’m now able to do light exercise (cardio and hand weights along with some general resistance exercises). I’m happy about that. He also noticed I’ve lost a few more prednisone pounds since I last saw him. I’m VERY happy about that! I gained 65 pounds while on prednisone! I’m working my way to losing 45-50 more pounds to get back to my normal and comfortable weight. As long as I can still use my stationary bike and my weights, and stick to a decent diet, I should make it there. If I make it in a year, that would be wonderful.
On the flip side, I’ve been battling envy and jealousy lately over some people in my MG world who have the luxury of travel, vacation, and just generally doing cool things they enjoy with friends and family. Most of these people have a lot more in the way of financial resources to be able to do such things. Some on disability have spouses who are the primary breadwinners. It’s challenging for me sometimes because it’s just me. I do ALL of my own chores, errands, cooking, cleaning, personal planning, self-care, oh yeah, and I still have to make a living. Dealing with all of it on top of chronic illness (MG isn’t the only chronic beast I battle) is very challenging. I can’t delegate to others because there’s no one to which to delegate. If it has to be accomplished, I’m it.
I try to keep my thoughts and feelings to myself around them—the lucky ones— but sometimes the evil green-eyed one comes out revealing my desire to have the help I really need at times and to be able to go out and truly enjoy the world the way I used to.
With today’s successful neurology followup, I’ll have to make peace and enjoy calmer MG days. Those days will have to serve as my “vacation,” my “exotic travels,” and my general “good times” until resources catch up.