Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Ill admit it upfront, Im pissed and a little vane. I dont see it as conceited because I dont think Im gorgeous. Its just I've always tried to look the best I can with what I have to work with. Coming from a heavy family and childhood I've always been very aware of my appearance. My first doctor supervised diet was in the 3rd grade (now as a mom, seems crazy & a little cruel) but I've literally spent my life dieting and exercising. Additionally I think sometimes when a person is heavy they work harder on other things about their appearance. nice hair, clear skin, bright smile, flattering clothes etc. Well thats what I did at least.
Since I was never going to be the girl with the killer body, I was out-going, bubbly & positive, friendly to everyone and funny.you know the typical but she has a great personalitylol, well thats me. My best physical traits my large bright blue eyes and friendly smile. Those two simple features along with my great personality, got me by ok surprisingly to both me and those skinny girls.
Well, I've worked hard to shed the extra weight, maintain a healthy eating habits, exercising daily, take my vitamins, eat my fruits & vegetables, lol, everything they say you should do to maintain good health. Finally a few years ago I surpassed my goal and hit size 6. For a life-long chubby, that was like reaching Mt. Everest, really amazing.
So I am more than just a little pissed that after a lifetime of following the rules and working extremely hard to be fit and healthy, I get diagnosed with a rare chronic disease that make me weak all over, causes my eyelid to droop along with my cheeks making me expressionless! Seriously!! Is this a cruel joke. the only two physical features that I've ever consistently received compliments for are now lost to MG?? And the icing on the cake.weakness, fatigue, and undoubtedly weight gain. See I told you I was a little vane. I know this isn't what I should be focused on but today I am.
Why couldn't I get a rare disease that blocks fat from being absorbed by my ass, forcing me to pile on the carbs and chocolate cake in order to just have a tiny bit of padding to my backside? Or what about a disease that causes my hair to grow really fast, shiny and thick? Oh no, instead its fatigue, loss of muscle tonereducing metabolism, low energy, medications that cause all kinds of unpleasant side effects.
Maybe tomorrow Ill be back to my positive self or maybe Ill be depressed, (another great side effect the mood swings) but today Im just pissed. Pissed at everything. Pissed I wasted years obsessing over my weight along with tons of money on beauty routines trying to look pretty. Mad that life keeps throwing grenades at me, which I expect but doesn't seem to allow enough time between attacks. Mad that I followed the rules, colored within the lines, did what was expected, and yet that wasn't enough.
Thanks for listening.
Since I was never going to be the girl with the killer body, I was out-going, bubbly & positive, friendly to everyone and funny.you know the typical but she has a great personalitylol, well thats me. My best physical traits my large bright blue eyes and friendly smile. Those two simple features along with my great personality, got me by ok surprisingly to both me and those skinny girls.
Well, I've worked hard to shed the extra weight, maintain a healthy eating habits, exercising daily, take my vitamins, eat my fruits & vegetables, lol, everything they say you should do to maintain good health. Finally a few years ago I surpassed my goal and hit size 6. For a life-long chubby, that was like reaching Mt. Everest, really amazing.
So I am more than just a little pissed that after a lifetime of following the rules and working extremely hard to be fit and healthy, I get diagnosed with a rare chronic disease that make me weak all over, causes my eyelid to droop along with my cheeks making me expressionless! Seriously!! Is this a cruel joke. the only two physical features that I've ever consistently received compliments for are now lost to MG?? And the icing on the cake.weakness, fatigue, and undoubtedly weight gain. See I told you I was a little vane. I know this isn't what I should be focused on but today I am.
Why couldn't I get a rare disease that blocks fat from being absorbed by my ass, forcing me to pile on the carbs and chocolate cake in order to just have a tiny bit of padding to my backside? Or what about a disease that causes my hair to grow really fast, shiny and thick? Oh no, instead its fatigue, loss of muscle tonereducing metabolism, low energy, medications that cause all kinds of unpleasant side effects.
Maybe tomorrow Ill be back to my positive self or maybe Ill be depressed, (another great side effect the mood swings) but today Im just pissed. Pissed at everything. Pissed I wasted years obsessing over my weight along with tons of money on beauty routines trying to look pretty. Mad that life keeps throwing grenades at me, which I expect but doesn't seem to allow enough time between attacks. Mad that I followed the rules, colored within the lines, did what was expected, and yet that wasn't enough.
Thanks for listening.
Very very very difficult.
Ann
Chin up girl.. better days are coming!!
M
The upside is that we're here! And, once they find the right drug combo for us, we will be feeling and looking better, there is hope! Also, I'm learning how to do new makeup things (when I'm up to it) and it really does help.
Just remember that you are beautiful to your family and friends, even when you don't feel like you are
Yes, things do get better. It takes time though. Not what you want to hear, I know. Big HUG!
Chuck
As all who have wrote before saying they can relate , so true for me as well . I can tell you when the right treatment comes your way and it WILL , the management of mg will allow you to have some control and management of side effects of meds. I was over the years had a difficult time with prednisone , mood swings , excessive hair growth etc..
There is absolutely reason to believe things will get better as for me personally I'm tapered to 2mg of prednisone every other day and will be off god willing by early August.. You mentioned the word "Vane " and let me tell you lol the describes me in every way a story for another day .
Don't put to much on yourself at once and you will do well and that's why we are all here .
Remission is without a doubt possible for all , as I'm in remission as I write this to you.
Keep the faith , Cj
The gluten free has also helped me. The Nutritionist that my immune system does not have to fight the gluten when I am on the diet.
The big issue is that all that we have worried about ---doesn't matter when we are struggling to live, and breathe. I am better than before, but still can't run. It is hard. Just wanted you to know that I feel how you are feeling and have gone through, still go through depression times(which by the way, mimic MG symptoms). This is a great group to vent to--we are the only ones that understand the daily challenges.
Wellness,
Ps-i try not to eat processed foods, or sugar-chocolate still rules though!