So on this episode of the good, bad, and the hilarious of Myasthenia Gravis I want to tell you about the insecurities of how we/ I look versus how I feel. There are times you feel amazing but you sound like a drunk, LOL. I mean I have had the mental mind set of someone who has won a million bucks, woke up happy, strength is amazing, and every symptom is on point but then I sound like my tongue is swollen three times it’s normal size and I can barely swallow. Then I get the swallowing under control but the slurring still stays for a few hours and I sound amazing at work. When you work in customer service people tend to look at you like a little funny. Many people tell me they do not notice it including doctors when I apologize for it. Though I know I am overly sensitive to how I sound I also know that I have extreme annunciation and diction and find it hilarious that people who interact with me more often do not notice until my slurring is so bad that it sounds like I am truly drunk.
This is when we all make light of the situation. It honestly doesn’t make me feel bad because they do not make me feel bad for my disorder. They do not force me to interact with customers unless I choose to, or teach fitness classes unless I desire to; however, I do not let these things stop me because my gestures and demonstrations are still clear enough for people to understand me.
Sometimes, I do feel insecure though. I feel as if people are staring at me when my eyelid droops or if I am slurring or unable to control my smile or mouth when smiling or eating. It can be hard. I want to go home and hide and eat instead of in a restaurant. It is rough. Those are the days I feel a bit sensitive. I even feel a bit insecure when I start to cough or choke a bit because though my husband knows how to handle this (as do I) people stare and even though he says I am alright or I say it people continue to stare or look and I want to disappear which can ruin a night out when you have been cooped up for several days.
The worst is when I wear a medical bracelet that has my medical information on it (and though it is custom-made and looks a bit different) it still has the medical emblem on it with medical info on it. I have in emergencies for the emergency staff and teams shook it at them when I could not breathe for the answers they have friggin asked me and they ahve kept askin me questions that I either could not answered or would rather rest and not answered at the moment to recover a second. Not understanding that MG requires recovery due to fatigue, LOL. Many nurses, EMT, and the like have no idea what MG is. But a medical bracelet with it boldly written on there with my name, allergies, and so on give them no excuse to spell it wrong and to get the basics wrong yet it happens every time, it’s pretty awful when you arrive to the hospital that you always go to with the most random information about yourself and the nurses that know you (once you get past admission) tell you what was entered and laugh at what was entered into the computer about you and change it for you so that it is not kept in your permanent record. I mean have been recorded as coming in as having myacynthia gravus once, choking on a pill once (but um I wasn’t it was only the thick mucus that builds from my MG sometimes when I was in crisis but they couldn’t understand that apparently), I have been told I have lupus (nope don’t have that either I have the lupus anti-coagulant a quick clotting issue but not lupus), and the funniest is that I was have chemotherapy/ cancer treatment because I was rushed from cancer day infusion center within the hospital where I receive my plasmapheresis. That was a hilarious assumption that they did not even ask me about. It was so funny. All I can say is sometimes working with health care all you can do is laugh and keep moving! It always makes me feel better.