How much fun it is to wake up hungry, and then *know* that you can go eat? Have you ever considered this? I'm not referring to the fact that we are blessed to have food in the pantry or in the 'fridge, I'm referring to the fact that your body will allow you to properly chew and swallow your food! Ooooh, the sun shines so much brighter on the days just following a series of MG symptoms. It has been a long week, as shared in the my last post. Not being able to really eat, was part of the week.
Many MGers, lose muscle control in their 'bulbar' region, head/neck/shoulders. This can result in many issues: difficulty breathing, raising your arms, holding your head up, speaking, chewing because your tongue has taken a vacation, swallowing because your throat muscles left with the tongue, facial expressions, double vision, or droopy eyelids. I'm sure I've missed a few. All that said to make the point that eating was difficult this week.
Last night, Lee greeted me with side dishes from Mann's BBQ in Austin. OH YUM!!!! First, I love Mann's BBQ because they cook wonderful home cooking..Georgia Style. Second, because they aren't afraid to fry a few things. :D I love fried okra, and Lee brought some home last night. Crispy food works well when your tongue doesn't; you dont have to move it much. Green beans and tater salad...I started eating, successfully, and may have eaten everything up. Maybe I shared..
This morning, I woke up and went straight for the kitchen, to make toast with Mom's Apple Butter. YUMMM again! Bread is a no-no for me when dealing with the vacationing tongue. You can chomp once, maybe twice, but then you have this saturated ball of dough loose in your chomper, sticking to your teeth or the top of your mouth. In lieu of your tongue doing its job, one of the trusty fingers has to step up to maneuver the mass to your back teeth for a proper swallow attempt. After that, you're hopeful a slip and slide party is going on back there, so the swallow attempt doesn't result in bread hanging out in your throat. You all know what that feels like. Ug!
Can you tell I'm rambling with glee? My facial area still feels like Joan Rivers' face looks, but I'm sipping milk without coughing, chewing bread without choking, and planning my menu for today...the Bulbar vacation is over!
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Smile because you can!
Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Smile because you can!
About Me
- Rachel
- Austin, TX
- My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share. I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.