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

planning

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.

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