Having MG can have some pretty funny and sometimes embarrassing moments! So they tell you that most women do not get it unless you are in your 3rd generation (30 years old). I was 28. And they say it is rare and that 20 in 100,000 people get it. They also say that more men than women get it and men 50 or older get it. Sadly I have actually yet to meet (face to face) another female in the area with it and then everyone I have come close to meeting is way older than me and they barely work or do anything active like me. SO in saying that you will understand how this next segment happens, LOL.
Because MG is neurological and autoimmune and I was really healthy before and basically during this I look very normal. So when I go places and need to sit down people look at me like I am crazy if I take an elevator every blue moon, or pull out my handicap sticker in the winter when I can barely walk because I am in PAIN. This year before my handicap sticker I took to the streets in a full blown snowsuit everywhere I went anytime it was under 25 degrees, LOL. From someone who keeps her house on 65-68 degrees year round I just could not take it physically.
Another funny moment was when a person thought I was having a stroke because my MG symptoms were acting up and I had slurred speech, a drooping eyelid, weakness, and my migraine was causing some vertigo. He was trying to call 911. I was like I am fine I just need my medication and he was trying to use the ‘good Samaritan law’ and tell me I was not in my right mind and that I needed help and I was too confused to know what I needed. I was like sir I have custom-made medical alert bracelet on that states my disorder google it if you like. I appreciate your concern and I don’t want to hinder you from helping others in the future, but I promise if you call an ambulance you will look like a prank caller because I will not stay here nor will I allow you to offer care, LMBO. I told him he was welcome to sit with me until my medication kicked in though and educate himself on my condition.
Talking with your nurses and doctors like they are the dream team from or your pusher man is hilarious. So once you are dubbed with a chronic or incurable disorder you gain a team of doctors and professionals that you have at your every beck and call. You even have cell phones and emails for some. You never realize until someone gives you a sideways glance how suspect you sound until your husband dies laughing or friend points out how you sound like you just made a deal to pick up some drugs. I am so use to speaking in their short hand code, making quick last minute meetings for specialty procedures, and getting special referrals and what not that I forget how that sounds on my end, especially when you are asking about the possibility of getting new drugs made and compounded for you at a special compounding pharmacy, LMBO.
Finally, the doctors do not tell you everything. You find out a lot of things on your own and have to call and find out if things are normal. It bothers me sometimes because I sit and worry and sometimes freak out way longer than I should have because who wants to pay the specialist fee to ask one question. Thank God for new doctor pages that have email access where you can email non-emergency questions and refill prescriptions. Moreover, sometimes you feel stupid asking a question but you feel like you have to ask it so that you can say I asked and now I know for sure. You can never be too sure or safe with these things. I have learned that the hard way with disorder, everything is not always common knowledge or common sense, even the doctors have to reference experts!