Saturday, April 24, 2010

Appetite and chronic disease

After making an "appetite bigger than stomach" mistake yesterday, and continuing to pay for it royally today, I thought I would blog about my personal challenges with food/weight loss/weight gain/etc...

When I first became ill with Myasthenia my muscles atrophied fast, my diaphragm was very weak, and my oxygen exchange was so poor that I relied on an oxygen tank to walk anywhere/sleep/shop/drive pretty much anything but sit in a chair. During that time I struggled constantly to eat. Eating made me feel sick, nauseaus. My organs weren't functioning properly due to lack of oxygen so it was very difficult to digest anything I ate. During that time I lost 25 pounds in as many days. I became so frail that one of the doctors put that she suspected anorexia in her notes. This saddened me as I fought daily to eat...anything.

After my diagnosis my appetite came back but by that time my stomach had become pretty small. Once I started the Mestinon I was getting stronger and food didn't disgust me anymore. I remember the first week I started the med going to my favorite lunch joint and cleaning my plate...I paid for that dearly when I learned what happens when you hit your max dose of Mestinon. For those of you who don't know, it hangs out at the neuromuscular junction giving the nerve signal a better chance to make it to the muscle receptor. When you hit your magic dose, it tends to stimulate the colon...suffice it to say I didn't gain any weight from that lunch;) But that's enough about that fun topic.

Moving forward to the medication that everyone who is anyone in the autoimmune disorders community eventually gets prescribed; PREDNISONE...oh the dreaded, beautiful prednisone. Get too little, it doesn't help at all... get too much and you end up with moon face, hump back, hair where you don't want it, and much much more...get just the right amount and hopefully you won't suffer major mood swings, diabetes, or osteoperosis. Fun right? One thing is for sure, no matter what your dose you will get hunger attacks where you can't control your appetite. this happened to me yesterday after a visit to Taco Bell...therein lies my first mistake!

So, lessons learned, just because the pit of your stomach is telling you it is a good idea to drink a bucket of Dr. Pepper and eat two taco supremes followed by a mexican pizza does not mean you should follow instruction. It turns out the stomach has a small IQ and a horrible memory. It has almost been 12 hours and I can still feel the ball of fast food hell eating a hole in my stomach lining. Oh, and in case you were wondering...if you cave in and listen to your stomach like I foolishly did..DO...NOT..BUY...FOOD...FOR...THE...KIDS...what they don't know won't hurt them. But when they come home from school 2 hours later and want to dine on what has your stomach in a vice, well you don't want to find out:)

That is all for now Ta, Ta, I am off to plays with the kiddos.



  1. When I started Mestinon I also had a perscription for Imodium.....which only took the edge off the lovely gastro side effects! Prednison is horrid, after 5 years of use I was willing to accept just about any side effect from any other drug!

  2. Mestinon made me have to pee every 5 minutes!!