Things I Want Right Now: "C is for..."

Can tubies gain weight?

Scratch that. I know we can gain weight. I've heard countless stories from tubie moms whose kids put on weight after switching from formula to blended diets.

What I mean is, can tubies get fat?

Believe it or not, that fat man is me on steroids in 2006. The bear is obviously on steroids too.

That picture is of Fat Brian and his friend, Fat Bear. I was on an extremely high dose of Dexamethasone (decadron) to try to combat the side effects of radiation damage. Decadron and radiation (and jaw surgeries too!) had a couple similarities: they suck and they were of questionable benefit. One of the side effects of decadron is that it caused me to put on weight really easily and it was nearly impossible to lose it.

Could I have avoided putting on weight if I had a feeding tube? Maybe you saw the headlines a few years ago about people trying to lose weight by eating through a feeding tube. Here's a more recent article about a doctor in North Dakota (Doctor Spencer Berry) who thinks feeding tubes are the answer for Diabetes: (click here). I like the quote from a different doctor at the bottom of the article: “To receive nutrition via a feeding tube is not a realistic long-term method of nutrition. Plus using a feeding tube for a prolonged period of time can increase a person’s risk of infections.” If I live to be 90--or rather, when my friend, Jesse Jones, lives to be 90--I hope she's still around so I can ask her about that.

I think I agree with Dr. Berry's critics though. Weight loss is about losing weight and keeping it off. Once those diabetic people have lost 100 pounds and the tube comes out, will they suddenly start eating well and exercising regularly? I'm thinking their first thought will be the same as my first thought if I ever get rid of this feeding tube, "I'm going to the grocery store, buying a tube of chocolate chip cookie dough, and I will not rest until that cookie dough has been consumed in its entirety. 'Murica."

All that 'gluten free no sugar' stuff is going right out the window. I'm not proud.

Once people get a feeding tube for weight loss, they'll have to keep it in or they'll slide right back into the diabetic life. So, since I have a tube permanently, does that mean there's no way I'll get obese? My opinion is that it's possible to be overweight with a feeding tube, but it's much harder. There's an obesity problem in this country because it's so easy to eat junk. Sitting on the couch watching the game? How about a 20 oz. Coke and a bag of Doritos!! Not enough time for breakfast before work? Stop for a few doughnuts at Krispy Kreme or buy a couple Pop Tarts from the snack machine in the office! Kids whining for dinner but nothing prepared? Order pizza, or better yet, make it a McDonald's night! We eat processed crap because it's more convenient. Or we do it because we're idle and have nothing better than to eat, so we choose to eat the best tasting stuff--the stuff with all the sugar and weird sounding chemicals in it. Even worse, we eat crap because it's less expensive than the healthy stuff.

Not so simple for me to eat crap food. I ate some doughnuts on occasion before I went gluten free. But there are extra steps there. Gotta throw it in the blender, get a good amount of fluid in the pitcher to thin the mixture, sit at the table to push it in (doughnuts aren't something I can casually eat on the couch or while I'm driving anymore), then flush with water. Granted, I've done this long enough to get the amount of time down, but it's still a whole production whenever I eat. Not to mention the fact that I don't taste what I eat, so where's the joy in eating a doughnut? If I'm going to take the time to make a meal, it makes more sense to make it healthy. Too much work to get fat with a feeding tube. Hard enough just maintaining the pounds I've got.

This is not to say that you can't eat an unhealthy diet with a feeding tube. My last post was all about sugar, and how sugar--mostly corn syrup--makes up many of the calories in processed formula for tube feeder. Having a diet with a large percentage of calories coming from sugar won't necessarily make you obese, but it does give you a whole host of other problems. Sugar is bad for you in so many ways. I really feel like I need to find a university study demonstrating why sug--

http://m.ajcn.nutrition.org/content/101/6/1144.abstract 

What the...Where did that peer reviewed study from The American Journal of Clinical Nutrition come from?? I think my health-conscious big sister somehow knew I was writing a post about cookies and sent the link all the way from her home in Germany!!! She further says that this article is, "Gold-standard research revealing the traumatic effects of simple, highly processed carbohydrates (sugar and flour and the products made from them) to your heart." She's got about 100 more studies showing how bad sugar is for you, but I actually just pulled that link off her facebook page and I'm too lazy to ask her.

So anyway, all this talk of the damaging effects to our body from sugar, both last week and this week, makes me hungry for cookies; how about you? It's time for another installment of "Things I Want Right Now!" I think I mentioned above that the first thing I'd do if I could swallow was eat a tube of cookie dough? The truth is, I'd drive straight here:

The happiest place on earth

Since a very young age, I've been crazy about cookies. Especially when they're soft, sweet, buttery, fresh from the oven. I'm drooling on my keyboard thinking about it.

Where did I learn this addiction?

My mom made some awesome cookies when I was growing up. Chocolate chip, snicker-doodle, sugar, apple sauce (yes, there are apple sauce cookies and they're delicious), oatmeal. But the best cookies by far? Mom's ginger snaps.

It's time to do something a little hypocritical on my blog. Something that is the exact opposite of what I was preaching about in my last post.

It's time to share a very unhealthy recipe. I'm only doing this so you'll see the types of things you shouldn't be eating. PLEASE PLEASE, whatever you do, don't run out, buy all the proper ingredients and make these cookies!!! Also, don't take pictures of yourself eating said cookies and absolutely don't send the pictures to me so I can vicariously enjoy the cookie consumption. Betsy really wants me to make chocolate chip cookies because they're her favorite, but I just use the Nestle-Toll House recipe for them so I thought I'd share my mom's ginger snap recipe instead. Betsy is the only person on the planet who doesn't like these cookies so I guess you're out of luck, babe, sorry!

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GINGER SNAPS

Ingredients:

2 cups flour                                   1 cup sugar
2 tsp. baking soda                          3/4 cup shortening
1/2 tsp salt                                    1 egg
1/2 tsp cinnamon                           1/4 cup light molasses
1/4 tsp ground cloves
1/4 tsp ginger

1 bowl of sugar

Directions:

Preheat oven to 375. Sift dry ingredients. In a separate bowl, cream sugar and shortening. Mix in egg and molasses. Add dry ingredients. Roll balls of dough in the bowl of sugar. Place on a greased cookie sheet, sugar side up. Bake for 9 minutes.
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Now, let's put those directions into action!! For this portion of my blog I really need someone to hel--

Look, it's Grace and some other strange kid!!

Where in the world did they come from?? All I did was think about cookies and Grace popped into the kitchen. Plus, our neighbor showed up with mixing spoon in hand. How does this happen?? I guess all you need to do to get your kids to quit playing Minecraft and spend time with you is make sugary, unhealthy treats with them!!! Parents, take note!!!

WARNING: flour has a tendency to fly out of the bowl when vigorously stirred!

The recipe also has shortening in it. Shortening was developed at the turn of last century using partially hydrogenated cottonseed oil. It was touted as the "healthy alternative" to lard because Mr. Procter and Mr. Gamble wanted to stick it to the meat industry. Listen to this podcast exploring the early history of Crisco; it's actually really fascinating. Today, Crisco is an unholy mix of soybean oil and palm oil, and butter is, surprisingly, a healthier alternative. Yet shortening makes the cookies softer and, although it doesn't give you that buttery taste you love in chocolate chip cookies, ginger snaps have enough other spices that you really don't need a buttery quality. Here's another interesting link on the science of fat and why it makes cookies taste so good, because I know you're dying to read more about fat!

"Stir, you little punks, or you won't get dinner again tonight!!!"

Besides adding butter, I also could've used gluten-free flour in the recipe so I could actually enjoy these cookies, but I made the decision to make it just 'like mom used to make' and keep it as unhealthy as possible. Also, I'm trying to cut back on sugar so I prefer to feed this poison to those I care the most about, like my only daughter (in my defense, she has the audacity to eat popcorn right in front of me).

Not only is there a cup of sugar in this recipe, but there's also molasses! Though, to be fair to molasses, it's actually not as bad for you as sugar. When sugar cane is processed to make refined sugar, molasses is the by-product, so it contains many of the nutrients from the plant that are lost during refinement. Plus, molasses has a lower glycemic load. I don't know what that means either, but apparently molasses is a safe sweetener for diabetics. I actually didn't have light molasses in the house, but I had black strap molasses (the type with the most nutrients so "yea me!"). It made the cookies look a little darker, but Grace still thought they tasted good.

Other than Grace, and some random neighbor kid who happened to wander by, who did I feed these sugar-bombs to? To my fellow disabled veterans at the horseback riding thing I do every Friday, of course! Also, to my in-laws because it seems like more of them are moving to Knoxville every day and I may have to resort to drastic measures to put a stop to them.


 

If I didn't have a feeding tube, all these would be mine

My 8 year-old daughter informed me this morning that she googled my name and found my blog. She told me she read every post and especially liked the one about Red Lobster because I made mommy look like a vampire. This made me: 1) suddenly very nervous about what exactly I said in my past blog posts (haven't there been a lot about alcohol??) and 2) frantically look up parental locks online so my kid doesn't wander into some porn site when I'm out of the room. So, Grace, I know you're reading this, so I thought I'd make you a special picture just from daddy:

Who's the scary monster now??

In response, she made this:

Not too bad for her first try

The Forty Year-Old Tubie

40.

The big 4-0.

Over-the-hill.

Four decades.

Forty trips around the sun.

I still remember when my parents turned 40. I thought they were old. The gray hairs were coming in. Hairline started to recede. I think my dad went and got bifocals around that time. Hearing started to go bad. Nose and ear hair started to be an issue, as did 'regularity.' 

It doesn't seem as old now as it did then. Maybe because so many of my friends are already in their forties (clearly, I need new friends). Maybe because I'm the youngest in my family and I still find that I'm treated like the 'baby brother' by my mom and sister (don't try to deny it!). Of course, the obvious reason it doesn't feel old is because I'm forty. Hell, when I was 10 years old, I thought college kids were ancient! It's all relative, right?

I would think that I'd be wiser by this time. Sure, I'm not the world-traveler my sister is. She lives in Europe, spent last Christmas in Kazakhstan and this Christmas in Israel. I live in Tennessee. My idea of a big journey this year was a road trip to Florida. Yet, I've had experiences. I've been to college, traveled out of the country a few times. I've overcome my share of health problems. I've raised a daughter (fairly well). Shouldn't I have gained some wisdom from this? 

I wish I had something truly poignant and eloquent to share at the age of forty. 

"Wear sunscreen." (sorry, that's from somebody else's graduation speech)

"There's no greater gift than friendship." (just watched The Polar Express with my daughter)

"Everything is awesome!" (The Lego Movie; all my quotes are from cartoons now)

"Do not taunt Happy Fun Ball." (old SNL skit)

"Don't put liquid dish soap in the dishwasher." (somebody else did that--not me)

If I've learned one thing so far in life, it's that I'm pretty ignorant. I had the opportunity to spend a weekend with my grandparents before Christmas.

They've forgotten far more than I've learned in forty years. My grandfather turns 95 next month. Forget 40! That's a milestone. They've been married 72 years. Seventy-Two! Their marriage has been a member of AARP more than twenty years! How could I write a revelatory tidbit of wisdom that could compare to everything they've experienced over the last century?

The secret to their long, happy marriage is the wine

I'll admit I've had some regrets in the last 40 years. I regret not learning a language. There's still time for this, I suppose, but it would've been so much easier if I'd stuck with German in college after two years in high school. Instead I took Arabic. Do I remember anything from Arabic class? Nope. I can say 'yes,' 'no,' I can call a room to attention, and say that the class is ready for instruction (we had to do that every day; I'm sure that will come in handy...NEVER).

I also regret not really talking to my brother about how he felt while he was going through cancer and not really listening to my sister when I was younger.

It's hard to regret decisions I made about my health. Do I regret getting radiation treatment? I could be worse off now if the cancer was never completely eradicated without radiation. Grace told me yesterday that she wished I'd never gotten cancer. I said that cancer was one of the best things to happen to me because it set me on a path to adopt her. Without radiation I probably wouldn't have met Grace. I'd still be in the Air Force (assuming cancer hadn't come back), but I'd never have met all our great friends in various hospitals or in Tennessee. Similarly, if I'd never gotten that last jaw surgery, then I could still be able to swallow, but I might be worse off too.

Without my regrets, I probably wouldn't have started writing a blog. I've discovered that I really enjoy writing. I might not be very good at it--my punctuation is atrocious (I think I use dashes and parenthesis far too liberally). But, I like doing it. It's cathartic for me. Hopefully, over the next 40 years (or however long I'm sticking around this place), I'll be able to watch Grace grow up into a happy, confident, young woman and I'll get better at writing about it.

They just had to go out and get me a balloon.

The Birmingham Macaroni Grill

There are two reasons I've heard for restaurants not accepting my blender (thereby not allowing me to eat). The first reason is because of liability. If the restaurant were to break my Vitamix, then they'd be afraid I could sue them. I can see where they're coming from in today's overly litigious society. No matter how much I reassure them that the Vitamix has an excellent warranty and I'm not the type who goes around suing restaurants, or anyone for that matter, there's still that fear that I'm an asshole. So, let me just say right now, restaurants: Vitamix will replace my blender!!! Feel free to use and abuse it!!

The second reason is that the blender is 'unsanitary.' I heard this at the Chile's here in Knoxville. We took my sister-in-law, Sarah, out to dinner there for her birthday a few weeks ago.

Sarah with Grace and Sarah's adorable daughter, Harper (unfortunately, Sarah's husband was at work)

Harper loves her big cousin, Grace!

I ordered my meal and Betsy gave the waiter the run-down on how I eat and how to handle the Vitamix. The waiter came back a few minutes later and explained that the kitchen needs to be absolutely certain every dish they use is sanitary. They didn't know where my blender had been so they couldn't use it for my dinner. I was bummed out until the waiter told us that if they could run the Vitamix pitcher through their dishwasher before they put the food in, then it would be sanitary enough.

I was left thinking uh...why did you even feel the need to tell me that? I have no problem with any kitchen washing out my pitcher before they use it. Just blend the food up and bring it out. Use the blender as you see fit!

"I want my baby back baby back baby back"

So, maybe that was a case of too much information from the restaurant. At the same time, I appreciate it when the chefs and servers communicate with me to make sure my food comes out the right way. I'm asking restaurants to go a few steps beyond what they'd normally do for my meals. Not only will they need to prepare the food, they also need to blend it properly and bring it out in the pitcher. I'd rather have the server ask me a hundred inane questions about the way I eat than have a situation where there is poor--or a lack of--communication.

Compare my experience at Chile's with the dinner I had at a Macaroni Grill in Birmingham a couple weeks ago. 

This Macaroni Grill, to be precise

We were in Alabama, staying with Betsy's parents, for Christmas, like we do every year. 

"But Brian," you say, "why don't you visit your family for the holidays??" 

That's a good question, devoted-reader-of-my-blog (A.K.A.: 'Mom'); I'm glad you brought it up. In fact, we don't visit my mother and sister for the holidays because they live in Germany. According to some people in this house, Germany is "too far away," "too expensive to get to," and "too cold in December" (Blah Blah Blah). So, I have to spend my Christmas in Alabama, where it never snows and Santa's reindeer get heatstroke (no offense to anyone living in Alabama; at least you're better than Florida, am I right?? (no offense to anyone living in Florida)).

I can't say anything bad about these people because they're my in-laws and I see them All. The. Time.

Sorry, got sidetracked a bit there. So, we all went out to dinner and I took the Vitamix with me. I brought my blender into a Romano's Macaroni Grill in Hawaii this past summer and had no problems, so we didn't think there'd be any issues this time either. I ordered my meal (grilled salmon) and Betsy explained to the waiter how he just needed to put all the food in the blender, add about 12 ounces of water and blend on high for 90 seconds. He nodded, wrote everything down and left, like it was no big deal.

A while later, we still had my blender at the table and I was wondering when he was coming back to get it for my meal. Just then, everyone's meals were brought out to the table, except mine. Betsy asked the server if he needed my Vitamix, but he said they wouldn't take my blender. It was a sanitation issue, so they were mixing the meal at the bar with their own blender. I figured that was fine. It would have been nice if they'd let me know about it before, but I'm sure they use a powerful blender at the bar. Again: no big deal. 

Soon enough, they bring out my meal...in a large bowl. 

"No," Betsy patiently explains, "as I already said, could you please bring the meal in the pitcher so he can pour it?"

"Ok, no problem." They bring my meal back out in their pitcher and I'm given a look at their blender pitcher. Of course, I forgot to take pictures at these crucial moments so I'll do my best to describe it. The pitcher had seen better days. Half of the plastic base the pitcher stands on was broken off so it tilted at a wild angle; nearly toppling over. It was from a normal, store-bought blender, which might be fine for margaritas, but couldn't possibly liquify a serving of broccoli. I tried a few times to push some down my tube, but there were too many chunks. I should've just given up at this point, but they were only blending fish, not steaks. I thought a normal blender would be able to handle it. We called the waiter back, and told him to blend it longer. "Ok, no problem."

The broken pitcher comes back out, but I can still see the chunks in it. Nevertheless, I try pushing it in again--no luck. At this point, the bartender comes over and we explain to her that we need to use the Vitamix for my blend. She says, unfortunately, she can't use a strange blender behind the bar (but a 20 year-old broken blender is just fine) but she was willing to blend up my meal, using our Vitamix, in the small room the servers use to prepare drinks. Ok, that would be fine. We give her the Vitamix, telling her to run it on high for a minute to make sure everything is blended. Moments later, she brings the pitcher out, I try to bolus it yet again, and...no luck. There are still too many chunks. Finally, Betsy goes back in the room and blends up my meal. By the time I start eating, everyone else has finished.

I'm not angry because Macaroni Grill wouldn't take my blender in the kitchen. We've heard it before at other restaurants. My personal feeling is that those places simply aren't willing to go outside their comfort zone to feed a disabled customer, so they use sanitation as an excuse. 95% of the places we've been to have accepted our Vitamix. If they really wanted to make their customer happy, then they could have adapted to meet my needs. It could only be beneficial to them: I always leave a great tip and I give them a 'shout-out' on here. Just clean my pitcher if it's not sanitary enough. But that's not why I won't go back to that Macaroni Grill.

Unlike the Chile's here in Knoxville, they failed to communicate with us. The waiter didn't explain until after the fact that they would be using their own blender. He didn't listen, or try to clarify, how I wanted my food blended. He brought the meal out in a bowl after we told him to bring it in the pitcher. The restaurant wasn't crowded that night; it's not like our server had more pressing matters to attend. If he'd taken the time to really listen to how I eat, he could've understood that the food needed to be thin enough to fit through a narrow tube. I'm asking servers to take a couple extra steps so I can eat meals with my family. Just dump the food in a blender then bring it out to me. They don't even need to season it well; it's not like I'm going to taste it. Is it too much to ask them to keep their customers happy?

Put down that doughnut right now

Sugar is bad for you and we (I'm talking about Americans--I don't care about the rest of you people) have a sugar addiction. I'm not telling you anything you haven't already heard. The airwaves have been flooded with Washington Post articles, New York Times articles, L.A. Times, Fox News reports, CNN, MSNBC clips, no sugar diaries (or here's the shorter version), John Oliver clips, Jamie Oliver (no relation) TED Talks, other TED Talks, more TED talks, Lengthy University of California lectures, 60 Minutes segments, BBC News clips, American Journal of Clinical Nutrition studies, and other scientific studies about the dangers of sugar. That last link takes you to PubMed's website where a search for "sugar intake" articles published in the last ten years gives you over 13,000 results. I'm sure some of those are all about how sugar is the miracle drug that will cure cancer, but I'm equally sure the pro-sugar studies were done by scientists who benefited from the sugar industry (I'm talking about you, Dr. Pepper!!!). That reminds me, you really need to watch that John Oliver clip:

John Oliver #ShowUsYourPeanuts

So, sugar is bad and the government doesn't seem to be in a big rush to regulate it. It falls to us to rid ourselves of our sugar addiction. This can be extremely difficult, if not impossible, for some people though. And I'm not talking about those who are genetically predisposed to having a sweet tooth either. I'm talking about tubies. When I first got my feeding tube, my doctor prescribed a regimen of 6-7 Ensure Pluses a day. That's 132-154 grams (nearly a cup) of sugar every day. This is over 4 times the daily amount of sugar the American Heart Association recommends. Understandably, formulas can cause a sugar rush (glycemic spike) and resultant comedown after consumption.

Why do formula companies pack so much sugar into their products? I think there are a lot of different reasons for this. The main reasons, in my opinion, are taste, and because sugar packs a lot of calories and companies still operate under the belief that, "a calorie is a calorie." If a nutritionist mandates that patients consume 2,000 calories a day, and the food has to be liquid and not exceed a certain volume, the easiest (cheapest) way to pack in those calories is by adding corn syrup. Sure, Ensure has a lot of other nutrients ("26 Vitamins and Minerals!"), but from my standpoint, it's like they mixed a can of corn syrup with a Centrum Multi-Vitamin and slapped a label on it.

There are formulas out there for tubies with diabetes. Two of the main examples are Glucerna and Boost Glucose Control. These products have a higher percentage of fats with lower amounts of carbohydrates (only 4-6 grams of sugar in each, compared with 22 grams in Ensure Plus). The carbs have a lower glycemic index, so the sugar is converted more slowly before being released into the bloodstream. Plus, the diabetic formulas have more fiber to further slow the breakdown of carbs.

The drawbacks to diabetic formulas? For one thing, it's still added sugar. I have yet to find a commercial formula out there with no added sugar. This is because, if formula companies want to make any money off their product, they can't just market to tubies specifically, so they have to make a shake that tastes good. Therefore, if you're stuck on formula, but want to go on a sugar-free diet, you're out of luck. Another drawback to diabetic formulas is they're still not real food. Here's the list of ingredients for Boost Glucose Control:

DOES NOT CONTAIN: FOOD

So, specialized diabetic formulas have a higher percentage of fats with lower amounts of carbohydrates. The carbohydrates in diabetic formulas have a lower glycemic index so that the sugars are converted more slowly before they're released into the bloodstream. These formulas also contain more fiber, to slow the breakdown of carbohydrates even more. - See more at: http://oralcancerfoundation.org/nutrition/liquid-tube-nutrition.php#sthash.sWQaFVTq.dpuf

So, specialized diabetic formulas have a higher percentage of fats with lower amounts of carbohydrates. The carbohydrates in diabetic formulas have a lower glycemic index so that the sugars are converted more slowly before they're released into the bloodstream. These formulas also contain more fiber, to slow the breakdown of carbohydrates even more. - See more at: http://oralcancerfoundation.org/nutrition/liquid-tube-nutrition.php#sthash.sWQaFVTq.dpuf

Yep, whole lotta big words in there. Makes you appreciate commercially available blended meals like Real Food Blends even more. Hopefully, tubies are a large enough market that they can turn a profit!! Another drawback to diabetic formulas is that they're just that: diabetic formulas. If you don't have diabetes but would like to control your sugar intake, it can be harder to get insurance to cover the costs of all those cans of Glucerna you need every day.

If you're a tubie--or the caregiver of a tubie--and you're unable to switch from formula to blending your meals for medical reasons, then I am really sorry you have to stay on these commercial products with unrecognizable ingredients and too much sugar. I sincerely hope doctors, nutritionists, and pharmaceutical companies wake up to the fact that sugar is poison and fat isn't nearly as bad as everyone thought it was.

In light of all that we've read about the dangers of sugar, Betsy and I are working really hard to reduce, or even eliminate, sugar from our diet. In my case, going without sugar is simple. I'm completely off formula so the only sugar I get is what I put in my blends. Sometimes I have a gluten-free dessert or a dark chocolate bar, but it's not something I crave. I've already found foods, like nut butters or avocados, that are high in fat and give me the calories I need. If I want to stop added sugar altogether, the only thing I need to cut out is sunflower butter because my grocery store (Earth Fare) adds a teaspoon of sugar to it.

For Betsy and Grace, on the other hand, cutting out sugar--or even reducing it--is more challenging. Betsy and Grace don't eat gluten-free. Both of the main products with gluten--bread and pasta--have added sugar. All cereal at the grocery store has added sugar. Lunch meats have sugar.  Sugar is added to just about everything except unprocessed fresh vegetables and meat. Even more than Grace, Betsy can be a finicky eater. There are certain things she eats in the morning and all that stuff has added sugar. On one hand, she's fortunate she doesn't need to eat through a feeding tube, so she's not forced to drink multiple Ensures every day. I don't know how she'd do drinking one or more Ensures a day; probably better than I would. On the other hand, when I get a craving for a doughnut, there's nothing I can do about it. Putting a doughnut through my tube doesn't do anything for me. But Betsy can run to Dunkin Donuts anytime to satisfy her craving. We've made sugar so easy and cheap to buy that we might all need feeding tubes unless you can exercise a little bit of self-control.

So, put down that doughnut right now!!!

Not you, Homer. You can eat all the doughnuts you want.