“The Right Food” Chapter 147

Over the last few months I have been fixated on watching food eating challenges. Don’t laugh - I challenge you to watch a woman who’s 110 pounds eat a whole pizza or a 8 pound breakfast challenge and not watch to the end. It’s amazing how much they can eat while I'm over here struggling to eat 8 ounces of food at a meal. One guy has completed over 1,350 food challenges. That’s more challenges than days I’ve had ALS.

I can’t say I totally miss food, but I do miss chewing, tasting, and smelling food.  When my Bulbar started I had a hard time swallowing. This led to choking, which led to eating less, which led to losing 50 pounds. I couldn’t enjoy food anymore and I didn’t want to.

When I finally went to the Nutritionist, I was recommended to get the PEG and start supplementing my diet with liquid foods. I could still eat food while making sure I got the nutrients I needed. The ability to supplement didn't last long before I stopped eating entirely and only used the feeding tube, and that’s where the trouble began.

The first PEG food I tried was Jevity. This was a high calorie food, but full of words I couldn’t pronounce. Because of eating less, my stomach shrunk and I couldn’t take in a lot of food at any given time. I adjusted my meals to six smaller meals, but the Jevity didn’t agree with my body, causing my stool to change, upsetting my stomach, and contributing to bloating. I was able to change the formula, but it was still Jevity and giving me issues.

After some time I was able to change the formula to Kate Farms. This was a struggle because my insurance - “The VA” - didn’t seem to want to pay for the more expensive brand. Kate Farms is a formula which uses better ingredients and doesn't include any items I can’t name. While on Kate Farms for two years I gained 35 pounds, but still had gut and stool issues. If it wasn’t constipation, it was lava. I started gaining weight but had an upset stomach after eating.

I did more research and found a lot of people recommend Liquid Hope. This is a formula that is more expensive than the other formulas on the market. We had a fight with my “insurance" company, but Laura put her 8oz MMA gloves on and went to battle with my insurance company who was reluctant. But there’s a saying CALS have: DONT FCK WITH MY PALS. It took all 5 rounds but we got the Liquid Hope. If you have been following my blog, you would have read about my last hospital blow out. A week after that hospital adventure I finally started the Liquid Hope and wow! I have not 💩better in three years. I don’t have stomach issues any more and I am eating better.

Quality food sources are important. If you are not able to blend and enjoy real foods which are hard to feed through the PEG tube, you need a quality formula such as Liquid Hope. If you are having a hard time processing the formula, you are using you might have to put on your MMA gloves. If you’re a VALS the code has been broken .

Love and Blessings

 

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