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How or What do you during an MG exasperation to keep your mind busy and your body still.#MG #MyastheniaGravis #ChronicFatigue

As I lie here in the hospital, slowly working towards recovery from this exasperation, I am creating cards as part of my mindset activities. These cards will be given to the medical staff caring for me!

What is it you do to remain engaged while recovering from those pesky exasperations!


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#virtual events can be fun! #ChronicIllness #ChronicPain

So many of these days are looking for distractions as well as ways to keep fit. I found something that works for me.... I took a virtual dance class with an instructor from the LA Rollettes. She was great and created a step by step video for the routine! Tons of practice and a few days later I posted my version of it. Of course not nearly as good but lots of fun! #mgstrong #EDSAwareness #MyastheniaGravis

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Check out the #mgstrong Map

Howdy MG warriors, and happy awareness month! As part of the virtual efforts this year, the Myasthenia Gravis Foundation of America has created an interactive map where you can add a pin with your name, location, a short message and optional photo. Neat to check out and/or participate in. You are not alone! My pin can be found in western Wyoming, if you didn’t guess from my salutation. 🤠

The map (not limited to the US) and submission form are here:


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when you least expect it #CheckInWithMe #EDS #mgstrong

so many of us recognize all we have lost from our chronic illnesses, pain, chronic fatigue, secondary disorders and so forth. Yet with each closing door, another opportunity awaits us.

Last February there were many things I could not do on our trip to Hawaii, yet I did not give up hope enjoying the trip. I instead focused on my photography. I took some incredibly memorable photos!


your Experiences living with a disability #RareDiseases

A recent blog article asked me what it is like living with disabilities. I thought this was a very loaded question and had some difficulties how to start my response. it ended up being way longer than expected. Fortunately, they saw the value in it, and turned an advocate spotlight into a blog post!

#rarediseasewarriors #InvisibleDisability #ChronicPain #Dysautonomia #mgstrong #mgwarrior #EDSAwareness

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#greatday #mgstrong #MyastheniaGravis

I had a wonderful day.
A year ago, I'd never heard of Myasthenia Gravis.  Today, I participated in my first MG Walk, surrounded by a dozen very dear friends.  
A year from now, I am sure I will be smiling as I remember the feeling of being surrounded by such wonderful people.