warrior

I woke up shakier and weaker than ever. My blood sugar was 66 😮 I quick ate a banana and drank some chocolate milk. An hour later, my blood sugar was 286. I shot up Lantus and ate a pb&j sandwich. My blood sugar went down to 182, then up to 299. I feel like a war is going on inside my body. I feel beat up. What the heck is happening???

month

Someone wrote this post today. I thought it was a pretty good explanation. Let me know if you try it. Does MG make more sense to you now?

Please follow along with me.
Lift up your right arm, now lift up your left.
Look up as high up as you can, then look to the left, then to the right.
Breathe in deep, exhale. Do it again.
Lift your left leg, then your right. If you are standing, take a few steps forward, lift your legs like you are climbing stairs.
Swallow.
Squeeze your right hand, now squeeze your left.
Lift your head up, turn your head to the right, turn it to the left.
Move your jaw, like you are chewing and swallow again.
Take a deep breath.

heavy

What did you just do? You have engaged your voluntary muscles. These are the muscles that are affected by Myasthenia Gravis. These are the muscles that become so weak that you can’t use them. These are the muscles that with repeated use, become weaker and weaker. Because of antibodies attacking the receptors on the muscles, the muscles can’t get the message that your brain is sending to move those muscles. The medical community says that “with treatment, those with myasthenia gravis can lead a normal life.” This has not been true for me. Their definition of normal is clearly not the same as mine.

I have learned to live with the symptoms. When eating, I have learned to swallow, and then rest before I swallow again so that I don’t choke on my food. I have learned to lower my standards as I was instructed to do when I was diagnosed, now my yard is full of weeds. I have learned that resting is a proactive activity – real exercise is not. (Yes, I do exercise, but it’s not the same as a real workout.) I have learned to walk the disability path which is filled with obstacles and judgement. I have learned to ignore fear and to choose happiness.

Thank you for following along and doing this – You are welcome to share my post and I would appreciate it very much if you would. Your support is priceless! Thank you for becoming aware. Now you can say… I have heard of MG
#‎IhaveheardofMG‬
‪#‎MyastheniaGravis‬

raise

My shrink came to visit today. I was OK, then got weepy. I feel like all the fluctuations and oddities and pains are making me crazy. He seems to think my mental health is pretty good…especially considering all I go through with healthcare and other promises that are dangled in front of me and then snatched away. Yup, rigged system, alright. Sigh…..

giveup

Did you hear about Social Security cost of living raises? The small increase in Social Security next year — which equals an extra $2 for someone getting a $1,000 monthly check — would come after retirees got no increase in Social Security benefits in 2016 for the third time in four decades.The final COLA figure is typically not determined until the fall.

flake

bitch

bitch

How the heck am I supposed to survive on less and less each year? My buying power is going down in leaps and bounds, while my COLA is in pitifully small increments. It’s hard to get too excited about existence without decent food, shelter, transportation, healthcare, etc. And speaking of transportation…UTA is at it again. When I first moved to SLC, they were working on a new TRAX route to the airport. Now that it has been running for 3 years, they want to tear part of it out. This is a good lesson about slant in the news. This version is all sanitized, to make the whole thing sound logical. Then there’s the local paper that actually investigates news stories. The Trib story, but especially with comments, gets more to the real problem of graft and greed and wasting money. Utah makes me sick 😦 One of the sponsors of bills to lower COLA is our own Congressman Jason Chaffetz. He started out as a Democratic Jewish guy, then became a self-righteous LDS Republican. I miss Vermont!

chron

 

 

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