My Advocate

I'm sure there have been studies done on the importance of having a friend or family member at your side when you're in surgery or staying at the hospital with a serious illness. I casually searched the internet and couldn't find one, but it's not hard to find stories of people who die in the ER. I remember a story maybe two years ago about a woman who showed up on an especially busy night at the ER. She was unable to tell the doctors or nurses how to get in touch with her friends and family. All the available rooms were full, so they had to keep her in a bed out in the hallway. The hospital staff got caught up with other cases and at some point she passed away during the night. You've all heard stories similar to this.

I've seen how vital it is to have a loved one with you. There have been so many times when I'm still groggy from anesthesia or pain medications and I've needed someone there to make decisions on my behalf. Honestly, I don't know how adults with bad medical problems can get by on their own.

My last jaw surgery in 2009 (when I lost the ability to swallow) was in Denver. As usual, Betsy stayed in the waiting room until the doctors were done with me--she refuses to leave the hospital during all my surgeries, even the 12+ hour ones.

She almost passed out when she saw me after this 13 hour surgery in 2008

My friend, Dave (attending medical school there) kept Betsy company. I have no memory of when I woke up. I was on a lot of pain medication, but Betsy and Dave tell me I was in a jovial mood. I had a breathing tube down my throat so I couldn't speak but I was smiling and making jokes by writing on a white board. After spending a few hours with me, Betsy felt comfortable enough to leave to take care of our infant daughter and get some rest. When I finally came down off my medication-induced high, there were no familiar faces to greet me. I thought surgery had just ended. The breathing tube was still there and I couldn't get my nurse to understand that I was confused about the day/time and why my wife was gone. I was in quite a bit of pain and extremely depressed the entire night. 

That night was a taste of how my medical treatment would be without Betsy by my side. It wasn't pleasant. 

A couple weeks ago, I drove to Augusta, Georgia, to visit the VA hospital for my annual exam at their Spinal Cord Injury Clinic. The drive is about 6 hours. Betsy couldn't go because it was the middle of the week and she had to work. It was exponentially more difficult to drive down, find the hotel, eat meals, find the hospital, sit through multiple examinations and tests, and drive home all by myself. 

Takes me about 12 seconds to completely mess up my hotel room when I'm alone

Lonely tubie selfie from my Augusta hotel

I don't know how she does it, but Betsy is an expert at getting exactly what I need from doctors. Here's an example of me calling up my GI doctor's office to get an appointment to get my feeding tube changed:

"Dr. Spaceman's office," the receptionist pleasantly greets. I call him Dr. Spaceman--pronounced "spah-cheh-men"--because he looks exactly like the doctor played by Chris Parnell on the show "30 Rock." You be the judge:

http://m.youtube.com/watch?v=CsBXmHnb4qs

The doppelganger: Dr. Leo Spaceman

GI Doctor Charles O'Connor. The resemblance is uncanny

"Yes, hi, I'm a patient of Dr. Spaceman's," I greet pleasantly. "The balloon on my feeding tube has burst and I'd like to schedule an appointment to get a new G tube."

"OK, Dr. Spaceman has an opening on the 20th. I can fit you in at 9:00."

"This Thursday? That would be great!" I exclaim.

The receptionist just laughs, "Ha Ha! Oh no no, sir! I can't possibly get you in that soon! I meant two months from now, May 20th. It's on a Tuesday."

"But my balloon is deflated!" I desperately cry. "My tube is literally falling out! How will I eat??"

"I'm sorry, sir, there are far too many more important patients with a 'tummy ache' who need to be seen immediately. If it's an emergency, you'll have to go to the ER."

So, that didn't go so well. Let's look at how that same conversation would go if Betsy was the one talking to Dr. Spaceman's office:

"Dr. Spaceman's office."

"Yes, hi, my husband's feeding tube is broken and he needs to get it changed."

"Yes ma'am!" the receptionist exclaims obsequiously. "I can get him in this afternoon!"

"We can't wait that long," Betsy protests. "Do you have anything earlier?"

"Well, one of his patients is passing a baseball-sized kidney stone and an alien just burst out of another patient's large intestine, but your situation sounds much more serious!! How about if Dr. Spaceman skips that other stuff and visits you at home to change your husband's tube?"

"I guess that will be ok," she grudgingly concedes. "Just tell him to hurry."

"Yes, ma'am! Right away, ma'am! Don't worry about the bill! We'll cover this one."

All right, I'm exaggerating a little, but Betsy really knows how to get things done. How could I possibly get by without her?? She makes most calls to doctors' offices. She keeps my appointments straight. She organizes my medications. She accompanies me for every hospital procedure. Betsy always says that I'm the perfect patient, and I would be just fine without her, but I'm pretty sure I'd be balled up in the fetal position if she wasn't around.

In short, on February 2, 2002, I saved my life. That was the day (I know, it's 2-2-2) I married my lovely bride, and I've come to believe that everyone with a serious illness or injury needs an advocate to survive the medical system. In 2002, I didn't know what our future held, but less than two years after our wedding day, I was diagnosed with lymphoma.

She even stuck with me when I was fat

Drugs

Our family has a Nintendo Wii game console and we have a game called Wii Fit. When you first start the game, it asks for your age and height, then it weighs you on a board that you can buy for the console and you go through some balance exercises. The purpose of this is to determine your "Wii Fit Age" to see if you're at your ideal level of fitness. If you've seen pictures of me on this blog, you'll know I'm not an obese person. It's true that I have some balance problems, but I figured my "Wii Fit Age" wouldn't be too bad compared to my actual age (I'm in my 30s). So after going through the balance tests and answering the questions, do you know what my "Wii Fit Age" is? 

85.

Eighty.

Five.

So, I think the Wii is really concerned about me now. Whenever Grace plays the game, it asks her when I'll be exercising again. I think if it had the ability, it would have called the paramedics or put me in a rest home. This is part of the reason why I really identify with old people these days. I'm an 85 year-old stuck in a 39 year-old's body. Everybody else in my family is all about keeping active and always being up and moving. Not me though. I'd be perfectly content doing nothing. Whenever I visit my grandparents at their retirement home in North Carolina, I love sitting with them reading the newspaper (did you finish the crossword?), reading books, playing Bridge, hearing their stories, and watching Wheel of Fortune and Jeopardy every night.

Jeopardy categories are really hard sometimes

I also love chatting with their neighbors and comparing notes on our various infirmities. 

We talk about doing water aerobics. "I can't stand it when they make the water too cold!! I don't know about you but it needs to be like bath water for me."

We talk about our balance problems. "Ooooh, I love your cane! Check mine out! Got it from my father-in-law!!"

I can discuss hearing issues. "Yep, my hearing is a little bad. I don't need a hearing aid yet, but I've got that ringing in my ear too."

We can gab about hospital stays. "I've been to ERs in San Antonio, Knoxville, Lompoc, Birmingham, Nashville, Denver, Colorado Springs, Los Angeles, and New York. My favorite hospital would have to be Vanderbilt. Least favorite? Birmingham. They wouldn't even give me a pillow in the ER!"

And I can talk endlessly about drugs. 

Obligatory Ferris Bueller Clip 

http://m.youtube.com/watch?v=fCkTVESc0fQ

I could compare notes on blood thinners:  "How do you like coumadin vs. heparin?" 

Pain meds: "Yeah, I tried it all because nothing really worked. Percocet, vicodin, shot glasses of morphine, pain patches; they even gave me narcotic "pain suckers" when I went through radiation. If I had teenage kids, that would be a great thing to have around the house." (Note to any addicts reading this blog: I don't have any narcotics now, so please don't break into my house looking for drugs.)

Steroids; I've got a lot of stories about steroids. prednisone vs. decadron. I was on the max dosage of decadron (24 mg a day) and got so sick of it, I decided to quit taking it all at once without my doctor's knowledge. I soon discovered that quitting steroids without gradually tapering off them is a good way to get yourself killed. Steroids made me so moody, I used to cry during sappy Hallmark commercials. I was on wellbutrin to deal with depression from the steroids. Then, the wellbutrin caused me to have a grand mal seizure in front of my wife and sister-in-law. I was also taking stool softeners, laxatives, and eating as much fiber as possible because the steroids made me extremely constipated. My constipation got so bad that I developed hemorrhoids so I can talk to elderly people about that too. Plus, the steroids made me think about food. Nothing but food. I woke up wanting to eat and the craving never stopped. I gained sixty pounds and got stretch marks all over my stomach that never went away (so I guess I can talk to women about pregnancy stretch marks too. Yea for me).

Damn you and your corny commercials!!!

I'm comfortable discussing nausea meds (zofran vs. phenergan; IV vs. oral). 

I can talk crazy side effects (reglan and haldol give me panic attacks). 

I can share my opinion on sleeping drugs (I saw a million tiny bugs on my sheets after a particularly high dose of ambien; I never felt very rested after nyquil; melatonin works but not if I take it every day; valium or ativan are ok for sleep, though that's not necessarily how they're intended; really the best medicine for me to get to sleep is tylenol and listening to classical music).

Do you want to ask me about reflux? (Apple cider vinegar is great if you have slow motility; nexium always clogs up my tube; tums never worked for me; I think lemon alka seltzer tastes pretty good; perforated ulcers are loads of fun and now I have enough carafate to drown in the stuff).

How about Eczema? I've tried all types of steroid creams. Triamcinolone cream works great.

Medical marijuana? Never smoked it but after radiation made me lose a bunch of weight I was prescribed a THC pill called marinol to give me the "munchies." Not only did this drug not make me eat more, they made my mouth and throat so dry that I vomited for 30 minutes and felt miserable. The doctor said this is a very rare side effect of THC and "maybe if you smoked marijuana as a kid, your body would be more adapted to THC and wouldn't have had this reaction." So, THANKS A LOT, MOM, FOR KEEPING ME OFF DRUGS! Kids, please don't use this as an excuse to smoke marijuana. It's a "very, very rare" side effect.

I swear the label on mine said something like, "WARNING: MAY CAUSE EXTREME HAPPINESS"

Antibiotics. I've had bacterial meningitis, MRSA in my brain, and multiple bouts of pneumonia so I've had every type of antibiotic out there; IV antibiotics, antibiotic capsules, tablets, liquids and direct shots of antibiotics in my ass.

Constipation meds. Metamucil, miralax; having your wife administer dulcolax suppositories has been the best part of our marriage!

Supplements. You want to talk vitamins? I'm a bit of an expert on B, C, D, E, and K. Or, we could debate the merits of iron, calcium, magnesium, fish oil, probiotics, and low dose aspirin.

There are still plenty of drugs I haven't been prescribed--and I'm thankful for that--but I bet I can comfortably speak with your grandparents about most of the meds they're on right now. A little over a decade ago, the craziest drug I ever took was motrin (or "vitamin M" as we called it in the military). Now, I need pill cases and bring excel spreadsheets to doctor's appointments to keep track of the drugs I'm on. Target pharmacy loves me so much as a customer, that I get gift baskets for my loyalty. This is what I'm on right now and this is actually much less than what I've taken in the past:

I just ignore the drug interaction warnings. Is that wise?

So yeah. I'm an old, old man. 

Wait...did I take my neurontin this morning?

Guilty Pleasures

Betsy and I love to watch cooking competition shows. Before I stopped getting cable we used to watch every season of Top Chef. We were constantly amazed by the intricate dishes the chefs could create. I've learned so many different dishes and ways to cook dishes that I never would have otherwise.

If you're contemplating entering one of these competitions, I recommend learning how to cook risotto and scallops. I think every other dish on any show I've watched is scallops. Confession: I've never had a scallop in my life. Nor have I had risotto. I think I could do a lengthy post just ranking the shows from worst to best (Food Network Star, Hell's Kitchen, Top Chef Masters, Top Chef, The Taste, in that order). Instead, I just want to talk about guilty pleasures.

"Hell's Kitchen: Watch chefs on a smoke break or get screamed at by this guy!"

Every cooking competition has an episode devoted to cooking guilty pleasures. Oh, how I miss them sometimes. You know guilty pleasures? Those things we secretly love to binge on? The vast majority of guilty pleasure dishes cooked during those episodes seems to be foie gras and/or caviar. Do you know what foie gras is, or am I the only ignorant moron who thought it was the French way of saying "frog legs?" 

Foie Gras?

Just me? 

Ok, I was kidding earlier. Any idiot knows what foie gras is. I had foie gras at least once a week growing up; sometimes for breakfast, lunch and dinner. I wrote the book on foie gras. Then I force-fed the book to geese and consumed their livers, thereby eating the book in foie gras form. Seriously, did you know foie gras is fatty goose liver from geese that have been force-fed? Is that why it's a guilty pleasure?

"Oh, this liver is SO good!! I've almost forgotten the hell-on-earth the goose was subjected to before it was slaughtered!!"

Actually I guess you could call many meat dishes here in the U.S. guilty pleasures, given the way livestock is treated in this country. I'm not a vegetarian, but watch any video or documentary of the meat and dairy industry and you definitely feel some guilt about that steak you had last night for dinner.

But anyway, I didn't want this post to be a diatribe against food production in America or my critique on reality cooking shows. I actually want to talk about my own guilty pleasures. My problem is that I love whatever it is too much and I end up eating or drinking so much of it that I get sick to the point where I can't have it ever again. I guess I've had a few different guilty pleasures over the years that now make me nauseous. 

When I went through basic training, my father sent me a box full of brownies every week. Not brownies one week, then cookies, then trail mix, then cake. No variety. Just brownies. Like anyone else, I loved brownies. I was also very mindful of the obesity epidemic here in America and I didn't want my comrades eating anything unhealthy. So, I "took one for the team" and consumed all the brownies myself (my roommate may have gotten a few out of me). Yep, I ate the whole batch of brownies that week. Then the next week. Then the following week. Then ("Is he really STILL sending me brownies??") the week after that. By this point, I couldn't look at another brownie. I'm probably the only guy in basic training who came to dread getting care packages. I finally had to break it to my dad, "Look, I know you mean well, and brownies are apparently the only thing you know how to make, but could you please stop??" To this day, brownies make me a little sick to my stomach.

Sure they look good now, but how about after you've eaten a million of them?

Another guilty pleasure I've ruined is gin and tonic. I had a friend at the Academy who used to order a gin and tonic whenever we went out to bars. "Whoa," I thought, "This guy is so sophisticated!!" No Jaegermeister shots, Jack & Coke, or screwdrivers like the rest of us unpolished slobs. He gets gin and tonic!! How classy is that?? Gin and tonic became my drink of choice. I got to where I could distinguish between Tanqueray (classy) and Beefeater (what the peasants drink) gin. I used to buy fresh limes and have a slice with one or two glasses every night after I graduated. Then, apparently, my body had enough gin and tonic and I got nauseous every time I had a glass; even a few sips of a glass. Sadly, my days of looking like a distinguished Englishman were over and I was back to 40's of Nattie Light like a common oaf.

Only the finest for me. My dog drinks Beefeaters.

More recently, my guilty pleasure has been coffee. Specifically, Starbucks coffee. I have acid reflux, so I've never been able to overdo coffee. Way too much acidity in my stomach. But two or three times a week, my treat to myself has been to ride my trike less than a mile to Starbucks where I order a "Tall" coffee (why the hell can't Starbucks just do "small," "medium," and "large" like everybody else?? Now I sound like a chauvinist pig every time I order a "Tall Blonde"). 

Selfie at the closest Starbucks in Knoxville

Then, even better, Betsy' friend's husband works for the company that makes the Keurig and he got us a great deal on one. Our Keurig is now my favorite thing in the whole house. Now, I can stick a K-cup into the Keurig and a few seconds later I've got a perfect portion of my Starbucks Blonde Roast coffee.

The greatest invention since cheesecake

Then, disaster. A few weeks ago, I got really nauseous with severe abdominal pain the day I had one of my cups of coffee. Right away, my GI put me on Carafate (I'm already taking Prevacid) and, even worse, all consumption of coffee ceased while I tried to figure out what was wrong. I thought it was another ulcer. I had one a couple years ago and it felt similar to this, but after putting a scope in my stomach and looking around, my GI saw no evidence of any ulcers. An ultrasound of my liver came out fine; a test of my gall bladder was normal. I still have no idea what the problem is. All I know is that drinking coffee makes it worse.

I broke down and got some Folgers Simply Smooth coffee for sensitive stomachs a couple days ago. I told Betsy about it, and she just laughed at me. How have I sunk so low in life, to be reduced to drinking Folgers?? I was on my way to being a gourmet aficionado with my Starbucks roasts. Now it's like I'm living in the 1950s. My Simply Smooth Folgers smells like used Starbucks coffee left in the sun for two weeks. 

Oh, The Humanity!!

Am I being a little whiny and petulant because I can't drink the coffee I want? Maybe. I'll admit, I have a lot to be thankful for. When I focus so much on the things I can't do, I tend to lose sight of the things I can. But, can't I have one guilty pleasure?? I used to really like the Bonzai Burgers at Red Robin. Then radiation treatment made it hard to open my mouth very far and I had to give those up. They're hard enough to eat when you can fully open your jaw. Every time I visited a mall, I used to get cookies from The Cookie Factory. Aren't their cookies soft, gooey, and awesome? Now, I can't eat gluten anymore so those are out. No more brownies or gin & tonics. I can't even taste that stuff anymore. Hell, I can't taste coffee for that matter. So, why can't I enjoy a nice cup of coffee in my tube twice a week? It's not like my guilty pleasure is smoking, or gambling, or doing hard drugs. I've never done that stuff; I'm a pretty straight-laced dude.

So, as a continuation of my series on things I want right now, I'd really like to sit down in a coffee shop with a good book and enjoy a cup of coffee. No sugar. Lots of cream. Is that too much to ask?

I'll have mine with a bowl of applesauce

Red Lobster

My wife is a work of art. Smooth, alabaster skin, dainty nose, moist lips kissed by a rose, hair of golden silk, hazel eyes like a misty forest after a storm. Unmarred by age, she is just as beautiful today as the day I married her. A model. A diva. A goddess.

But something happens to my sweet angel when she eats crab legs. 

Something...unusual. Something...terrifying. 

Here we are a few days ago out at one of her favorite places to eat in Knoxville, Red Lobster:

Grace just came for the biscuits

Seems innocent enough, right? Everybody out for a good time? Why don't you look a little more closely at Betsy's face.

OH. MY. GOD!!!!!!

Yes, my wife turns into a hideous monster around crab legs! Woe to any man, woman, or child who gets between her and her pound(s) of crab meat. The waiters already know what she's come for, drawing straws to decide who will be unlucky enough to bring her offering. "Can we get you anything else, Ma'am?" "JUST BRING ME THE LEGS!!!!!!  RRRRAAAAAWWWRRRRRRR!!!!!!!!!!!" With the piercing cry of a velociraptor she tears into the plate timidly presented by the waitress. 

Yes. My wife is a velociraptor.

The shells are pathetically inadequate against her powerful claws. Terrified, Grace pathetically sobs in the corner. I warn other diners to run while they still can. Over the ripping, rending sound of her fangs sinking into crab flesh I hear panicked screams from those caught in her fiery glare.

This is WITH red-eye-reduction

By the end of the meal, we have the place to ourselves. I sit uneasily across from the terrifying beast who once was my wife. A mangled pile of crab shells lies in front of her. Her hands and arms look as though she has bathed in butter sauce.

"She's more machine now than woman"

A frightened waitress warily presents our bill before scampering back to the kitchen with a whimper. Looks like another Red Lobster we won't be welcome back to.

These photos were not doctored in any way.

I guess what I'm getting at here is Betsy LOVES crab legs. She consumes them with the type of lazer-like focus that I would reserve for reading fantasy novels, tuning out any distractions. 

Husband choking? "Not now, I'm eating." 

A table-side visit from the President? "Can't talk right now! You see what I'm doing here?!?" 

Daughter getting kidnapped? "Donph bofvfer meph. Thesph cramph lergs arph so goonmph." 

She actually didn't start eating crab legs until we started dating in Florida, but ever sense then Betsy can't get enough. 

As usual, Red Lobster's managers and wait staff were very understanding and had no problem putting my meal in the Blendtec and bringing it out to me in the pitcher. The manager this time was Rachel and our server was Keona. They were both extremely nice and gave us excellent service.

Unfortunately, the restaurant doesn't have a gluten-free menu. Instead, they have a printout of their allergen menu (you can see it at: http://www.redlobster.com/health/allergy/pdf/RL_Allergen_Menu.pdf) This menu lists every item on their menu and which allergens it contains (nut, soy, dairy, wheat, etc.). It is nice that they provide this much, although it takes a bit to find the entrees and decipher which ones might contain gluten. Maybe I'm being too demanding? I don't know; I guess if you want to eat gluten-free at Red Lobster, it would be a good idea to check out the allergens beforehand to plan out your meal.

I got the stuffed flounder with brocolli on the side. Wish I could've had a couple of those buttery biscuits they serve because they are sooo good!

Grace had to take the picture because mommy was feeding on crab carcass

Grace is petrified of lobsters, but this one seems harmless

I made her stand in front of them anyway. Am I a bad father?

Thanks for another great night, Red Lobster! Sorry about the mess.

Product Endorsement

I am so jealous of Julie Bombacino. "Who is Julie Bombacino," you ask? She is a mother who started a company in 2012 that makes real food blends for tubies (RealFoodBlends.com). Why am I jealous? Because I wish I had that idea myself. Instead, I'm sitting on my ass writing about the HUGE difference her company will make on those of us who tubefeed. Not to mention the dramatic effect she'll have on companies that manufacture formula and tout their product as "nutritious." 

Let me share my experience eating Julie's meals, as opposed to pushing an 8 ounce can of TwoCal HN through my tube. 

First of all, what are the ingredients in a typical formula like TwoCal HN? They don't have it on their cans, but I did find it on their website.

475 calories of fun!

Water, Corn Syrup Solids, Sodium & Calcium Caseinates, Corn Maltodextrin, High Oleic Safflower Oil, Sugar (Sucrose), Medium-Chain Triglycerides, Canola Oil, Fructooligosaccharides, Potassium Citrate, Magnesium Chloride, Calcium Phosphate, Natural & Artificial Flavors, Soy Lecithin, Sodium Citrate, Ascorbic Acid, Choline Chloride, Taurine, L-Carnitine, Zinc Sulfate, Ferrous Sulfate, dl-Alpha-Tocopheryl Acetate, Niacinamide, Calcium Pantothenate, Manganese Sulfate, Cupric Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Palmitate, Folic Acid, Biotin, Chromium Chloride, Sodium Molybdate, Potassium Iodide, Sodium Selenate, Phylloquinone, Cyanocobalamin, and Vitamin D3.

No meal is complete without a helping of dl-Alpha-Tocopheryl Acetate, right? Also, what the hell are Fructooligosaccharides? They sound delicious, whatever they are. I actually had to look them up. There's a wikipedia page devoted to Fructooligosaccharides, believe it or not. They serve as an alternate artificial sweetener and are touted for their prebiotic (not probiotic) health benefits. You learn something new every day. So TwoCal has Fructooligosaccharides going for it, if nothing else. How about Ensure Plus? They also supply ingredients on their website:

I prefer vanilla; Betsy likes her chocolate. Either way, it's crap.

Water, Corn Maltodextrin, Sugar, Milk Protein Concentrate, Canola Oil, Soy Protein Isolate, Corn Oil, Pea Protein Concentrate. Less than 0.5% of the Following: Natural & Artificial Flavor, Magnesium Phosphate, Potassium Citrate, Soy Lecithin, Sodium Citrate, Potassium Chloride, Calcium Phosphate, Calcium Carbonate, Salt, Choline Chloride, Ascorbic Acid, Potassium Hydroxide, Carrageenan, Ferrous Sulfate, dl-Alpha-Tocopheryl Acetate, Zinc Sulfate, Niacinamide, Manganese Sulfate, Calcium Pantothenate, Cupric Sulfate, Vitamin A Palmitate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Chromium Chloride, Folic Acid, Sodium Molybdate, Biotin, Sodium Selenate, Potassium Iodide, Phylloquinone, Vitamin D3, and Cyanocobalamin.

No Fructooligosaccharides but I see dl-Alpha-Tocopheryl Acetate again. There are a lot of similarities. Sugar is high on both lists. At least Ensure has pea protein concentrate; that's a recognizable vegetable, right? Also, both products seem to contain a lot of corn. 

Boost Plus? I can't tolerate their formula at all, but here's an image of their ingredients:

Once again, sugar and corn are prominently featured and there're those Fructooligosaccharides again. I get a formula called Jevity whenever I'm staying at the hospital. It's supposed to be strictly for tubefeeding. Jevity is made by the same company that makes TwoCal. Here are the ingredients for their formula:

Don't know if I get the 1.0, 1.2, or 1.5 Cal but this is what it looks like

Water, Corn Maltodextrin, Corn Syrup Solids, Sodium & Calcium Caseinates, Soy Protein Isolate, Canola Oil, Corn Oil, Fructooligosaccharides, Medium-Chain Triglycerides, Soy Fiber, Oat Fiber, Calcium Phosphate, Magnesium Phosphate, Potassium Citrate, Gum Arabic, Soy Lecithin, Potassium Chloride, Carboxymethylcellulose, Sodium Chloride, Ascorbic Acid, Choline Chloride, Sodium Citrate, L-Carnitine, Taurine, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, Ferrous Sulfate, Niacinamide, Calcium Pantothenate, Manganese Sulfate, Cupric Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Beta-Carotene, Vitamin A Palmitate, Folic Acid, Biotin, Chromium Chloride, Sodium Molybdate, Potassium Iodide, Sodium Selenate, Phylloquinone, Cyanocobalamin, and Vitamin D3.

Corn and Fructooligosaccharides. Plus some Carboxymethylcellulose. That's a new one. Why did formula companies have to fill their products with all these complex ingredients, rather than just use actual food?? Before Ensure and TwoCal and all the rest came along, people used to get blended meals through their tubes. We need to get back to our "tubie roots" because it's much healthier. Everyone in the "Blenderized Diet" community can attest to the dramatic difference eating real food has on our health.

So, let's walk through the way I feel putting formula through my tube. In the morning, I often have a can of TwoCal because it's more convenient than preparing a meal, I'm lazy, and one can doesn't make me nauseous the way 5 cans a day would. So here's my open can this morning:

"blllleeeeeaaaaaahhhhh"

And here's how I feel when I eat it:

Note the look of revulsion.

TwoCal, or any formula, feels really heavy in my stomach. Like I've just ingested a brick. I don't feel satisfied at all. If I have to subsist on TwoCal all day, eating nothing else, I have a hard time getting down the amount I need. Before I started eating blended foods, my nutritionist had me take at least 6 cans of Ensure Plus ("preferably 7," he said) every day. Typically I couldn't do more than 4 or 5. Desperate to get calories, I got a pump through the VA so I could slowly pump in formula overnight. I couldn't stand being tethered to a pump, but it was the only way I could stomach any of the formulas I tried. 

Then I found blended food. Sort of sounds like a religion, I know. But my life has gone from a downward spiral to actually enjoying eating again. 

Anyway, let's take a look at Mrs. Bombacino's ingredients for the "Salmon Oats & Squash" blend. It's right on every box: 

Pretty much just what it says

Good until January 2017 so I can start stocking up for the zombie apocalypse!!

Water, squash puree, salmon, pomegranate juice concentrate, rolled oats, flaxseed oil. 

That's it. I recognize every one of those ingredients. The other night I had the pleasure of eating a "Salmon Oats & Squash" blend. First, here's a picture of Grace doing the happy dance when I got a package of blended meals:

I told her the box was full of chocolate. Am I a bad father?

Once you open a box of the salmon blend it looks like this. Sort of like an M.R.E. pouch. So maybe tubies could be in the military! Or all our soldiers should have feeding tubes!!! Just something to think about.

MRE flashbacks...

The pouches are designed to stand on their own. This is so that you can draw up a syringe-full right out of the pouch and plunge it in the tube.

It actually smelled really good!

Personally, it's easier for me to pour it into my tube directly, rather than pulling it up into the syringe with the plunger first (see my Mechanics of Tubefeeding post) so I dumped it out into a measuring cup to make it easier to pour. Here I am eating a Real Food Blend:

I know it's hard to tell, but that's my happy face

It was just like eating a regular blended meal. Easy on my stomach. I felt completely satisfied, even with such a small amount. This is more of a child-size portion, just 8 ounces. I could easily have eaten two of these in one sitting. No nausea. Could I ingest 2 cans of Ensure, one after the other like that? Not a chance.

These meals will be so vital to me when I'm traveling! They're easy to pack. They're shelf-stable, without needing refrigeration. I like the gluten-free "Salmon Oats & Squash" blend, but they also have a gluten-free quinoa blend and a chicken blend. Mrs. Bombacino says that they are working on more adult-size portions. Seriously, EVERY TUBIE NEEDS TO GO OUT AND BUY THESE BLENDS!!!!

No, I'm not just urging other tubies and tubie moms to buy Real Food Blends. EVERYONE needs to buy these meals, and I'll tell you why. I'm tired of visiting someone else's house and being asked, "Can I get you anything to eat?" Then I have to put that wry expression on my face and say, "Sorry, no, I eat through a feeding tube." More often I'm too tired to go into detail about my health issues, so I say, "No thanks, I'm not hungry." This leaves my host thinking I'm impolite, too good for their food, angry words are exchanged, I'm never invited back, yada yada yada, we exchange death threats. It's a whole big thing.

For all those times, you need to buy at least a decent selection of Real Food Blends. To make people like me feel at home. "Would you like something to eat, Brian? What's that you say? You eat through a tube? Well actually, I have a selection of delicious blended meals I can offer you." This would make me feel so welcome. So included.

You know what? If you don't get a salmon meal, then I'm not coming to visit you. Ever. How about that? I know the vast majority of you are thinking, Fantastic!! I don't want that guy on my street, much less in my house!!! However, for those of you who enjoy my company. If you beg me constantly to come by, just for an hour, at least. If you wait by your front door every day hoping for a glimpse of me, then this message is for you!! Yeah, I'M TALKING TO YOU, MOM!!! ...no? uh...ok....THEN I'M TALKING TO YOU, GRAMMY!!! She can't say no because she doesn't use the internet, so HA!!!!!!

So, if you'd like to be a good host, then please buy a nice selection of Mrs. Bombacino's meals. Like I said, she should be coming out with adult-size portions soon. Here's the link again: RealFoodBlends.com or they're on Amazon (link)! 

Here's to Being Different

Kids stare at me. Not the idolizing, "I-look-up-to-you-and-worship-you" stare. It's more the "Whoa. What-in-God's-name-is-WRONG-with-that-guy?!?" type of stare. 

You see, I'm partly paralyzed on my left side. Only the right side of my mouth moves. My right arm is much bigger than my left. In fact, my left arm mostly just swings uselessly at my side. I'm unable to swallow, so I have a feeding tube inserted into my stomach and dangling about 8 inches down to peek out of the bottom of my shirt. The inability to swallow also causes me to drool at inopportune moments like at the smell of food when I'm especially hungry, or at the sight of the Denver Broncos cheerleaders (I'm just joking Betsy; I only have eyes for you).

"What is that ugly man doing with his coffee, Mommy?"

All this means that when I first volunteered in Grace's elementary school classroom, kids had a hard time focusing because they were so busy staring at me. Or, when I eat through my feeding tube out at a restaurant, children are mesmerized by the sight of me eating. At one particular restaurant I was eating with my family and a young boy walked around my table (TWICE!), saying nothing and staring with wide eyed astonishment as I pushed blended food into my stomach.

Does it bother me? Yes, I have to admit that sometimes it does. I don't enjoy feeling like some sort of circus freak show.

OK, I guess I do look like a circus freak, but doesn't she look adorable?!?

I think many people who read this blog can relate to the way I feel. I'm not saying you're all circus freaks...well...maybe you are...but it's not something I'd say here. I'd say it behind your back or on a public forum like Facebook. 

Actually, I think everyone has experienced standing out in the crowd. Parents with tubefed children who feed their son or daughter in public. Or parents whose child has autism, or cerebral palsy, or Down's syndrome. Anyone with a disability or disease that makes them publicly conspicuous understands. What do we do about it? Many people retreat from the public eye. They fear going out. They imagine what others are thinking about them. What are they whispering to their friends? Are they quietly laughing at my infirmity? 

I used to hate tubefeeding in public. I forbid anyone from taking photos of me in the act. When our family went out to restaurants, I would just sit and stare at my wife and daughter eating. "No, waiter, nothing to eat or drink for me; just hurry up and bring the bill so we can get home and I can eat."

Everyone who's adopted an Asian child knows what I'm talking about here. We adopted my daughter, Grace, from China in 2008.

The moment Grace became our daughter, July 23, 2008, Nanchang, China

Many parents of foreign-born children have experienced being stared at because we look different. We are white parents with children who look nothing like us. We all know how it is when we're sitting in the mall food court and we can feel eyes on us. Are they silently judging us? Do they look at us with pity? Are they looking down on us? We know they're raising questions in their minds and answering those questions with their own misconceptions and prejudice. Just come out and say what you're thinking! In our minds, we imagine their ignorant inquiries and our sharp responses:

"There are so many kids who need adopting right here. Why adopt from China?"

"You're so LUCKY you didn't have to go through labor!"

"Do you feel like she's not really yours?"

"I couldn't adopt. No way I could love a child that's not really mine."

"From a distance, you look like you could be her real mother!"

This family seems pretty ordinary to me

But my daughter taught me to look at things differently. When she sees another kid staring at my tube, she speaks right up, "My daddy can't swallow so he eats through a tube." She'll say it to anyone. "My daddy had cancer and his arm won't work." Even if I haven't shown my tube. If someone just offers me some water, or a bite to eat. "Daddy has a feeding tube. He puts his food in a blender." She speaks without apology--without embarrassment. "Daddy can't run." "Daddy you're spitting." "Daddy used to play guitar, but he can't now." She even mimics my smile; only pulling up one side of her mouth and squinting one eye as she gives me a thumbs up. My daughter isn't bothered at all by my appearance. I'd say she's proud of my differences. 

Daddy's girl

My six year-old has been my example. I volunteer in her classroom as much as I can. I've started a blog where I post pictures of myself tubefeeding. At swimming pools, I walk unashamedly with my shirt off, displaying my tube, my emaciated arm, every inch of my disfigured body. Well, not every inch; pretty sure I'd get arrested for that.

She brings me out of my shell

In the same way, our differences--whether we're caucasian parents of foreign children, parents of disabled children, or suffer from some physical deformity that makes us stand out in the crowd--needn't be something to feel self-conscious about. On the contrary, we should all be proud to stick out in public. Just like Grace with my disability, we need to speak up to banish others' ignorance. I've learned that standing out in a crowd can be awesome. I love introducing kids, and adults, to the idea that some people eat differently. I love showing people that families can be unconventional too. Sometimes parents don't look like their kids but that's ok. So here's to being different!

Don't be like all the other penguins

Almond Butter

Betsy and I are planning to attend the Disabled American Veterans Winter Sports Clinic again this year. Last year was the first time I went, and it was awesome!! The DAV is kind enough to pay for the first visit, but the veteran has to cover travel to Snowmass and lodging every other time. Lift tickets and my meals are still free, though we have to pay for Betsy' and Grace's skiing and meals. Even with the things the DAV pays for, the cost for 3 tickets from Knoxville to Aspen, seven nights at the resort hotel (admittedly at a very reduced cost), ski school for Grace, lift tickets for Betsy, meals and incidentals gets pretty expensive.

So, a few months ago, I wrote a letter to Blendtec asking if they would sponsor me for the next clinic. A very nice representative wrote back explaining that they don't have a budget for sponsorships, however she enjoyed reading my blog and sent me two new containers for my blender, a Wildside jar and a Twister jar.

Still got that "New Jar" smell

Although it looks smaller in the picture, the Wildside jar is about twice as big as the standard pitcher the Blendtec comes with. It is MUCH better for the larger blends I eat when I go out. I don't even use the original pitcher anymore. 

AAAAHHHHH!!!!!! There's a head in my Wildside jar!!!!!!!

The Twister jar is much smaller, about half the size of the original. Like any male, I failed to read the directions about the Twister jar and assumed it was for making smaller versions of my typical blends; sort of like a travel pitcher. So, I put my regular lunch blend in there, added water, and pushed the soup/syrup/fondue button, thinking it would mix up my meal like always. What I didn't know--and what I easily could've found out had I read the instructions--was that the Twister jar is more for making blends with a heavier consistency. This includes things like dips, or thick shakes, or pizza dough. The blade in the Twister is looser than the blades in the original or Wildside jars. This enables it to spin at a faster rate than it would normally, so it can cut through thicker blends. So, when it's confronted with a "normal" blend like my typical lunch, the blades have such a high RPM that they quickly overheat. And this is what happened to me. The Blendtec's typical loud roar became a high pitched whine and after about 10 seconds it shut itself off. Being the idiot I am, I tried it a couple more times with the same result. And that's when I finally looked at the directions and this handy booklet of recipes:

Couldn't come up with a witty caption for this picture. It's a recipe booklet, ok?

The other day, I decided to put the Twister jar to the test with Blendtec's almond butter recipe. I frequently eat almond butter in my blends, but it is ridiculously expensive at the store. However, you can buy large bags of raw almonds at Costco for pretty cheap. So, ideally, I can fill my own mason jars or tupperware with homemade almond butter and never have to pay for the stuff again.

Where's the gram of sugar come from? Do almonds naturally have sugar?

For this project, I enlisted the assistance of my daughter, Grace. She usually likes to "help" me when I cook. I put "help" in quotes because she's six and I love my daughter more than anything but she's pretty useless in the kitchen. Grace "helps" me by giving me the opportunity to clean the kitchen because 

"Daddy, I'll crack that egg....oops...sorry Daddy..."

"Let me stir, Daddy!  Whoops...sorry Daddy..."

"I want to pour the milk, Daddy!!  Uh oh...sorry Daddy..."

So then I say, "Betsy, I can only use one arm, so can you clean this??"

Anyway, here she is, along with the recipe, the ingredients for the almond butter (1.5 cups of almonds), my three pitchers (Twister jar is on the left), and the blender base:

There's a white hairy monster in this picture!!!!

This is an operation that takes two hands. One hand needs to change the blender speed to seven then stop the blender after 40 seconds. The other hand continuously turns the Twister lid in order to make sure every almond is thoroughly creamed. So, I had my trusty assistant speed up the blender to seven while I held the lid. 

Unfortunately, Grace got no higher than two because I wasn't holding the lid down tight enough and almond dust sprayed everywhere. My highly dependable helper screamed in terror and ran out of the room, leaving me holding the lid, looking around, wondering if maybe the dog could increase the speed or turn the bloody thing off for me (excuse the language; I've been watching a lot of British television). Finally, after 2 minutes of trying unsuccessfully to raise the speed with my nose and faithfully rotating the Twister lid at a whopping speed of 2 while my cowardly child peered anxiously around the corner, the blender overheated and shut itself off. 

The picture doesn't show the chaos happening in the kitchen right now

Since I was using raw almonds, rather than dry roasted, I needed to run the blender at Speed 7 "until smooth and creamy." So, I dragged Grace back in the room and our second attempt at getting up to 7 went much more smoothly. Altogether, we probably ran the blender about 4 minutes before I felt like the almond butter was the right consistency. 

The chaos in the kitchen is similar to what's happening in the Twister jar

I do need to specify that I did not try tasting this almond butter because I can't eat, but it looked similar enough to the stuff I buy at the store. Grace has an allergy to tree nuts (or maybe she really doesn't like them; we haven't had her tested), so she didn't try it either. If you have a Blendtec and Twister jar, you'll have to try this sometime and let me know how it is!

Can you tell she's been getting rich from the tooth fairy?

Thanks again for the equipment, Blendtec!!