Saturday, January 19, 2013

The Face Of Myasthenia, When the MONSTER Strikes

Sorry I haven't posted... 
There was so much I wanted to say...
But MYASTHENIA GRAVIS got in the way...

It's HARD to TALK, when your tongue feels like it's bigger than your mouth and doesn't move to correctly to form words...

It's HARD to READ, when you can't keep your eyelids open, or you lose focus to see the printed page...

It's HARD to WRITE, when your hands don't have the strength to hold or move a pen...

It's HARD to BREATH, when your chest doesn't rise and fall deep enough to get a real breath...

It's HARD to WALK, as you struggle to lift legs that feel like you're wearing cement blocks instead of shoe's, or your legs fall out from under you causing you to fall to the ground...

It's HARD to EAT, when your jaw gets so tired you can barely chew...

It's HARD to USE your COMPUTER, when you need to be propped up in a recliner with pillows to keep your head in place, your elbows propped up so your arms don't fall to your sides and then can't lift them back up without the help of others...

It's HARD to DRIVE, when you can't sit upright in the seat without being strapped in like a ragdoll,  keep your head up without a neck brace or you raise your arms to steer the car...

It's HARD to feel USEFUL & PRODUCTIVE, when you need help dressing, bathing, and having someone help you sit up in a bed because there is no strength in any of your muscles to do even the most basic of daily functions...

It's EASY to CRY, when you feel alone and helpless...when you think no one understands... when you can no longer help care for your nieces like you did before...
It's EASY to LIVE with MYASTHENIA GRAVIS, when you have been blessed with wonderful family and friends you can count on no matter what...

It's EASY to LIVE with MYASTHENIA GRAVIS, when you have faith that GOD will help your doctors and researchers find a cure for neuro-muscular diseases in YOUR lifetime...



I wasn't able to get a full picture of myself this morning, it has been a rather difficult few weeks. I was propped up in my chair with my cervical collar holding up my head. I couldn't lift my arms high enough to get a better picture!  So no hair or make-up, it been a total pajama day! 
This isn't just MY MG life, it's my families and those of other Myasthenics and their families too!
 To learn more visit Myasthenia Gravis Foundation of America


  1. Awesome Rachel ~ you just described my life :-) Love you, my little MG Pal!
    Suzi <3

  2. First time I've ever checked out your blog.. I know its a difficult thing to live with.. I see you every day and want you to know that you are an inspiration to many especially me because you show how strong you are because you dont stop fighting and you strive to live every day to the best of your ability. . That shows just how awesome a person you are..

  3. Suzi Q, thank you so very much!
    I'm so very fortunate to have you as one of my "Flaky Friends"... :)

  4. Michael, you really surprised me by leaving a comment. without you and Gae things would be so much harder...You know how much I love when you joke and tease, it makes this whole mess a little easier. <3 you!

  5. I've been off the blog world for awhile and was so glad to see your post and get an update. Your physical body is giving you a hard time, but your spirit is soaring! Thanks for your example.

  6. You, my amazing friend, are an inspiration. I adore you, you know that. You ALWAYS help me when I come bawling to you about something. :) You give me a kick in the pants when I need one, but are always kind, loving, and simply PRECIOUS to me. I love ya Rae!!!

  7. So glad to see you sorry for the weak days you have been having...I hope you get better soon

  8. Thank you so much for sharing this Rachel <3 Sometimes its so overwhelming to try and describe it all at once, especially so anyone can understand. This is awesome!

  9. Rachel,
    Thank you so much! I often have a hard time describing it all, it gets too overwhelming or I complicate it with too many words. This is perfect for anyone ..patient, caregivers, nurses, doctors, friends. I just want to reach through my screen and give you a big hug!

    1. Jen,
      Your words are more than kind. I have people like you to thank for giving me the strength to be so open about my life with MG. It was a post of yours on an MG support site that led me to your, and to Kerri's blog as well. I know how hard it is for you to keep up on posts and videos, but please know that we appreciate it more than words can say.

      Keeping you and ALL my MG sisters and brothers in my thoughts and prayers for continued strength to fight the battle.


  10. Thank you so much for sharing this Rachel <3 Sometimes its so overwhelming to try and describe it all at once, especially so anyone can understand. This is awesome!


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