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‘What’s the name of the spell that paralyzing people in Harry Potter?’, asked Philly. We were laying in and he randomly asked me this.

I sat for a moment, caught off guard, said huh and then responded stupefy! I have no idea why I said huh first it seems to be a reaction at times because it hits my ears or maybe even my brain late.

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I don’t know if his mind was still reeling from earlier that night or what but he seemed to be pulling one of my numbers and making the punchlines for me. Earlier that night I had the most intense cramps in my calves I had ever experienced in my life. They were so bad that I could not walk, could see the muscle spasming, and literally took my breath away each time it jumped. I thought we might have to go to the hospital because unlike the first time I experienced blood clots in my legs this time I was nearly certain that I might have some.

I have NEVER felt this sort of pain in my legs before. I screamed in pain and the pain lasted for well over 30 minutes. I could not ever touch the area to begin with. Philly was beside himself. However, he would not show this of course. He tried to massage the area which hurt, then he tried to massage my feet which helped at first. Then that didn’t work. Then he tried to get me to sip water. We realized immediately I was severely dehydrated. Moreover, he he was trying his best to calm my breathing which has suffered greatly from the stress of it all going on about an hour at this point.

He sounded like my Lamaze partner,

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coaching me through deep breathing exercises and giving me encouraging words and rubs on my back while holding me. Ok maybe he wasn’t that intense but he was quite soothing after I was able to relax

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It was like a combination of the 2 in my mind

But eventually he also remembered I probably needed some magnesium after a bit of research and got me some dark chocolate. I was a bit reluctant at first since I thought part of the reason I was in that mess was because of the dehydration from salt and sugar and sweating all day with little water. We had a state fair extravaganza and my poor body had been through the wringer.

I even spent the rest of the weekend so afraid of those cramps again I barely did much else. I will say this, I will be stocking up on gatorade and pedialyte pops ASAP to replenish what was lost since I let myself get so run down. This is not like me.

I have to be careful I am too close to my surgery to sabotage it and I do not want to jeopardize me in general nor scare Philly like that again. My MG scares or health scares seem to come out of no where. We are having a good time watching t.v. or eating and then boom. Poor thing.

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So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.

 ellen degeneres ask questions ama ask me anything GIF

Myasthenia And Hospital Stays

Preparation BEFORE you go is key! while you are healthy make a plan for IF or when you go. This paper or electronic copy should have all your information on it. I have both. The reason for both is that I hand a copy to the EMS/ Admission person and I have an electronic copy on my phone for my family and myself to update and keep with me.

On it the following information can be found:

  • My name
  • My birthday
  • My spouse’s name
  • The name of my condition- and it’s likely biggest symptoms (which likely put me in there)
  • My allergies
  • What hospital I prefer– this is important because you may have insurance that works better with that hosptial or because they may have more experience with you or specialized care for you there.
  • What medications I am currently taking- I list the strength and the frequency If I have time that day I may hand write in the last time I took it (they will ask)
  • All my recent surgeries and procedures/ hospital stays-I promise if you wait until the day you need this it will take you forever to remember if you have had a few (which is annoying when you are in pain or crisis)
  • List of my doctors with numbers and addresses
  • Pharmacy number and address


Also try to always have a small overnight back always packed that has this list with small things you may want while there. For me in my overnight back is:

  • a hairbrush and hair ties
  • underwear
  • deodorant
  • a phone charger
  • laptop/ charger (that’s just me though- I play games and skype usually)
  • change of clothes to go home in
  • specialty meds the hospital may not have (mine does not have mestinon time release (180mg)

Also while you are in the hospital use the time to recover!!! Use the time to let them help you and ask questions. I am the worst for this always rushing to get back to work and life. If you do not ask for certain things they may not do it, when I say this I mean little things. I am always told I am the easiest patient because I rarely want nor need anything. I only want quiet and so they try to space out how often they come in. I also love how sweet thy are. I ask what I can do to make their day which apparently gives them a smile. Nurses have the hardest jobs. I always love how they commend and cheer you for the little things like passing gas, having regular bowel movements, and eating all your foods. My husband dies laughing and cheers too because he finds it hilarious I get cheers for this and they say well your wife does not get to leave until she can do these things regularly and though he still laughs he gets it. But it is our joke at home when I do it and he cheers, it makes me laugh so hard. You have to make light of these things. We do not see bad in everything and neither should you! You can find the rainbow in any situation. We find ours all the time.