© 2016

Not enough beer to cry into

Asante Solutions and the wonderful, delightful,
innovative Snap Pump

2006-2015

Rest in Peace

See you later, alligator(s)

This isn’t a goodbye, but rather an official acknowledgement both to you readers, and to myself, that I’m on a diabetes blogging hiatus. This isn’t really news to anyone, as my mother pointed out recently over dinner, my last post was pre-Thanksgiving.

But before you think my health has taken a turn for the worse, let me assure you that quite the opposite is true. Just as predicted by my medical team a bit over a year ago, it took me a full year to recover from my near-death experience. I’ve really rebounded over the last two months and now I’m actually feeling like my old overly energetic self again. I’m back to working too much, drinking too much, smoking too much, swearing too much, and womanizing (with my wife of 26 years). But now I’m taking a break from all of that. Well, except the fucking swearing too much and the damn womanizing the wife, of course.

Here’s the deal on the blogging. I just discovered that there’s only so many hours in the day. I have my own diabetes 24-7, plus my wife’s, too. (She beat me at Blood Sugar Bingo the other night, trumping my post-anniversary dinner reading of 249 mg/dL with her own 250. What? What’s that? The goal is to have the lowest blood sugar, not the highest? Well, shit! Why didn’t someone tell me that earlier?? I’ve been paying the game wrong all these years!) Then 36 hours a week I have 350 other PWDs to worry about. On top of that there’s the diabetes weekly column, the monthly diabetes column, and assorted diabetes articles that come my way.

At times in the past, there are things I really wanted to share, or things I really need to say, but right now—now that I’m feeling human again—I find that I don’t want to spend my “free” time with diabetes anymore than I already have to. Instead, I’m finding joy in reading a good book, exploring museums, or pursing my interests in archeology, weather, aviation history, and online shopping. So don’t expect much here for a while.

Besides, it’s not like you are lacking from my diabetes writing. I’m still keeping up with my weekly diabetes advice column over at Diabetes Mine (now at Healthline with a theoretical audience of 25 million people a month). We just marked my 200^th column for the ‘Mine. And of course I’m still writing for dLife, a few months ago my 50^th piece for them was posted. Then, of course, I’m still writing for magazines like Diabetes Self-Management. Did you catch that crazy four-piece “magnum opus” I wrote on blood glucose monitoring for them? So I’m not thinking there’s much of a shortage of Wil for you to read.

But I do have a couple of quick things to wrap up before I take the official hiatus. The first is that I want all of you to buy and read a book called “The Dangers of Kissing and Diet Coke,” by Mitzi Mensch. It’s the tale of a lady who had a series of mysterious health crisises that make diabetes look like a walk in the park, written in parallel of the story of her re-kindling a romance from her youth via the internet. There’s a couple of things to really love about this book. First, no matter how sick you are feeling, you’ll feel better knowing this poor lady was sicker. Perverse, I know. Second, her extraordinarily loveable personality shines through the pages in a way I’ve rarely seen. Damn, you really wish you could have dinner with her when you read her work! Third: Seriously? A tale of internet romance with a married man interwoven with a tale of worsening chronic illness? How can that work? Well, it can and it does, but only because she’s one hell of a good writer. Plus, it’s a kick-ass title, isn’t it? It made me want to pick it up. I’m glad I did. Oh, right, and she worked for an HMO and couldn’t get good healthcare for herself. And she knew how to navigate the system! So the book is also sort of an indictment against how our healthcare “system” is organized, too, especially when it comes to complex illnesses or things that break the mold.

Next, got an elder with a ton of meds? We just lost one of ours. Deb’s mom, who lived with us for the last three years… Well, that’s not really accurate… The truth is she slowed died before our eyes over the last three years despite all our best efforts; her mind and her body succumbing in slow motion to a nasty pack of degenerative muscle and nerve illnesses. Over the last year, while I’ve regained strength and mind, she lost both. It’s been a very long time since Debbie and I had a date, one or the other of us has had to be here at home with her mother 24-365 for longer than I care to recall.

Oh, sorry, got off track. I worry that this absent-mindedness is from the encephalitis, but I’m told I was always that way. Anyway, if you have someone with tons of meds on various schedules, can I recommend the Med Center System? It’s an intimidating pyramid of pill containers for various times of the day that let’s you organize four times a day meds in advance for a full month, and helps track what’s been taken and what hasn’t. It even has a talking reminder alarm. My only complaint is that the timer’s voice isn’t Angela Jolie’s or Olivia Newton John’s. Oh, and it’s kinda big and kinda ugly, but if you need something like this, function really trumps form.

Lastly, I got a sample of a pretty amazing low carb bread a while back. The Great Low Carb Bread Company makes a number of products, and while I didn’t think much of their bagels or muffins, their paleo hamburger bun was pretty awesome. It’s flat and high-fiber but it actually tastes good, plus their ridiculously low sounding 2 net carb impact (yes, two carbs!) is accurate. Bottom line: An option to the flimsily lettuce wrap for those of us whose bodies equally hate flour and carbs. (Ain’t life grand?)

So that’s it. To-do list ta-done! I’m officially on diabetes blogging hiatus and I’m off to have fun in the sun… and the rain… and the snow. But not to worry, I’ll be back. Probably in time for another neglected Thanksgiving post!

Have a happy Thanksgiving

I just had to share this image from one of our sisters. As you might guess, she’s a scientist. A scientist determined to have the perfect Thanksgiving bolus tomorrow. (Note the purple pump down in the lower right corner.)

Me? I just plan to not go into a coma. Or to crash so low that Rio gets his wish to try out the glucagon ER kit!

New Tradition

So it's World Diabetes Day today. I'm not sure if it's appropriate to wish anyone a "happy" World Diabetes Day. Somehow that seems… well, wrong.

But I got to thinking that while the purpose of this day is to raise awareness about diabetes amongst those who are unaware, why not celebrate our lives and d-Friends while we are at it?

So I wrapped up a little something for one of my d-Sisters. Let's start a new tradition. On World D-Day teach one person who knows nothing about diabetes something about our world; and give a token of solidarity to someone with diabetes that you love.

Oh Snap, what a difference!

Download of CGM the last week of MDI therapy:

First week on the Snap pump:

OK, I know. There's still a lot of work to do, but it's off to a hell of a good start!

A Treat not a Trick for this Halloween

Getting one wasn’t a Snap at all. It took me 1 year, 2 months, 13 days, and 7 hours; but I finally have a Snap of my own and I’m pumping again!

The other shoe

I was finally beginning to feel my old self again. Instead of making energy to do things, I had energy to do things. I could read books without falling asleep after two paragraphs. My attitude was improving. I actually cut the weeds for the first time this year, and put up that picture in my mom’s office that I promised to do back in December. I looked forward to weekends and workdays. Life began to be worth living again.

More than that. I came home one night about a week ago and I was thinking that really, I was about as happy as I’d ever been in my life.

So naturally the other shoe dropped.

I still haven’t come to grips with what has happened, but maybe the telling the story will be therapeutic. For background you should know that over the last nine months my blood sugar control has been crap. Partly lack of energy to do it right. Partly lack of energy to eat what I should; or to resist the temptation to not eat what I shouldn’t. Partly too busy taking care of everyone else to take care of myself. Partly lack of access to the best tools available.

All excuses, really.

Over the last nine months my blood sugars have been running in the 250s. Some days bolus after bolus after bolus did no good in bringing them back down, but most days I didn’t even bother to try. Then one night as I slid into bed, the fire started. In my feet, a tingly, electrical burning feeling.

I had developed neuropathy. After a decade of preaching diabetes won’t hurt you if you just keep your sugar down, I found that ignoring my own sermon lead me to hell. Two days later, it started in my hands.

But the neuropathy isn’t the other shoe.

I live in a crowed household, and with early fall came early flu. Rio got hit first. Then Debs. Then her mother, and finally my mother. Oddly, I didn’t get sick. Usually I’m the first to fall, the hardest hit, and the one who stays sick the longest. I chocked up my escape to the fact that nature always leaves one member of a tribe uninflicted by plague to nurse the others. I fully expected to get double-sick as they rebounded, but it didn’t happen.

I guess the cells left alive in my body after the last nine months are such tough sons-of-bitches that no common flu virus stands a chance against them.

Rio missed the first two weeks of school. The virus impacted my mother-in-law so severely her mental state was reduced to the point she became completely helpless. She couldn’t talk. She lost the use of her hands. She couldn’t feed herself, dress herself, or even go to the bathroom on her own. She still hasn’t recovered, and now either Debs or I must be with her 24-7.

But the super-flu isn’t the other shoe.

It only led the way.

The flu worked its way into Rio’s lungs. After years of not having to use an inhaler, his asthma returned. The nebulizer had to be dusted off again and fired up again. His cough was nasty and deep. We took him to his doc, who Dx’d him with pneumonia. The only question was whether it was getting worse or getting better. The doc couldn’t hear anything in Rio’s lungs and, concerned they might be nearly full of fluid, ordered a chest x-ray.

But the pneumonia isn’t the other shoe, either.

In fact, the chest x-ray showed Rio’s lungs were clear. He was on the mend. But there was an incidental finding on the x-ray. Rio’s spine had a little twist. At about the level of his sternum, his spine detoured to the right side of his body, then returned to vertical, much like the body of a boa constrictor might look like where it detoured around large knot while slithering up a tree.

Scoliosis.

Rio’s doc wrote a referral to the peds orthos at University Hospital. I called for an appointment and found that the only pediatric bone guys in the state are out-of-network for my son’s insurance. The largest insurance plan in the state refuses to contract with the largest health provider in the state.

Welcome to the world I live in every day.

A couple of weeks later, we pushed through an authorization. In the meantime, the radiologist’s report came back with the official word on Rio: Moderate thoracic scoliosis. Rio’s doctor was almost apologetic; it didn’t appear to be anything worth addressing, after all. But I decided, what the hell, we’ve got the appointment with the specialist, let’s go ahead and keep it.

I fully expected it to be a typical initial consultation. I expected them, like running a credit card, to see if Rio’s insurance was “good,” shake hands, look at the x-ray and say, let’s meet again in six months.

I was wrong. The other shoe was about to drop.

The University’s Carrie Tingley Hospital takes care of sick kids with “complex musculoskeletal and orthopedic conditions.” It’s a depressing place. The outpatient clinic has a 1950 institutional look to it, a down-on-it’s luck 1950 institutional look. It’s old and worn out. The staff were friendly, but it was a depressing place, not only because the building looked old and worn out, but so too did all the patients. Children with adult souls trapped in twisted malformed bodies. It was tragic beyond words.

First we met with a nurse who took Rio’s vitals. Then we met with a resident who gave Rio a physical exam and ordered another x-ray. She shook him up by asking about clotting factors or any other issues that would prevent surgery.

Then we ambled down the hall to x-ray, Rio freezing in a lightweight hospital gown and disposable Tyvek shorts. Three x-rays later and we were back to killing time the treatment room, looking at the archaic light box mounted on the wall for viewing x-ray films back in the days before digital. Next to the light box was a psychedelic smiley face poster. We were in the land that time forgot.

Rio was very solemn. What are you thinking about? I asked him.

He hesitated, wringing his hands, then said, “I’m worried about surgery.”

I told him with great confidence that no such thing was likely to happen and I had my money on a just-come-back-in-six-months approach.

I was about to lose my money.

Finally, the doctor came in. He briskly introduced himself, pulled a chair up right in front of Rio, looked him squarely in the eye and without preamble said, “Would you hate me if I asked you to wear a brace?”

Rio and I were thunderstruck, too surprised to reply at all. Finally I managed to wise-crack that Rio would only hate him if he ordered surgery.

“It could come to that,” said the doctor, “but I’m hoping to avoid it.”

That’s the last point I remember clearly. I’ve been in a fog ever since. I’m like the man who staggers from the car crash and can remember everything up to the point of impact, but is missing all recall of the accident itself.

I’d been rudely and abruptly transported into a parallel universe of medicine.

The twist in Rio’s spine that looked like the boa constrictor passing a knot on a tree was really the head of the cobra. The little detour was a “compensating” bend. The rest of the snake was curled up in its basket in Rio’s lower back, where his spine is bent and twisted to an angle of 38 degrees. The chest x-ray missed the main event, but the specialists had known what to look for.

It wasn’t moderate scoliosis. It much more serious, almost to the point where surgery is required. The snake had been lurking deep in the body of my perfect-looking child for several years, and time was short to change to course of the disease. He has only 2 or three years of bone growth left.

He will need to wear body armor like Star Wars storm troopers from neck to tail bone. He’ll need to wear it at least 18 hours a day. Or 21. Or 23. It depends on which of the experts we spent the day with that you listen to. The word “compliance” hung heavily on the air in every conversation. How important compliance was. How compliance would reduce the risk of surgery. How compliance would make the difference between a normal adulthood and one made up of chronic back pain and mobility issues.

All the concerns over compliance told me that the brace, called a Boston Brace, must not be very comfortable.

Then we were packed off with Google directions to drive to a place across town where Rio would be measured for his new armor. One look at the directions and I knew we’d been given a route that involved a closed off-ramp. I’d have to do some dead reckoning to get there.

We drove off in silence. I asked Rio what he was feeling, and he did not answer me. He sat, gazing out the window, forlorn. A beaten dog, all the life gone out of him. I wanted to cry. I wanted to scream. I wanted to take this away from him.

But I was powerless.

I placed a hand on his knee and we drove on through the city in silence.

At the prosthetics place, a number of gruesome trophies hung on the wall. Tiny infant-sized helmets to overcome distorted skulls. Tennis shoes for people missing one foot. Spare breasts for women who’d lost one of the ones God gave her to the pink ribbon battle.

Modern medicine. The reaper of the flesh.

I was in a complete daze. My wonderful, kind, sensitive child was suffering. I felt helpless and riddled with guilt. Should I have spotted this earlier? Was I a bad parent for not noticing the slight rise of one shoulder, the slight gap between arm and torso, the bulge on his back from his twisted rib cage? And then there was the real guilt. The guilt over the complication that I, of all people, should have been able to prevent. The doctor told me he preferred to treat skinny children. Rio’s substantial belly, a battle I’ve been losing for a decade, would make the brace harder to manufacture and less likely to work.

I had doubly failed in my sacred duty as a parent.

Then we met the tech, who to my mind was the orthopedic equivalent, of, well, me. She is to scoliosis what Wil is to diabetes. I recognized a kindred spirit at once. She put Rio at ease. She put me at ease. She patiently explained to us all the things the doctor didn’t bother to. I suddenly felt myself in the shoes of my patients—brutalized by doctors, rescued by educators.

She was bubbly and upbeat. She assured us we could do this. She plugged us into the social media world of bent spines. Blogs, support groups, online stores, Facebook. There’s a whole sister world to ours out there beyond our horizons. I guess I knew that, but I never thought much about it.

And I wanted no part of it. Isn’t diabetes enough?

She put Rio in a super tight-fitting muscle shirt that showed every lump and fold of fat on his body. She taped a sensor on his back and then began scanning him, sweeping a beam of light up and down his body, and on the screen of her computer, a 3-D image of Rio’s torso was formed in minute and exact detail. Rio’s armor would be more pear-shaped than the wedge of white plastic the storm troopers wear. Rio would need to sleep in this medieval armor. Walk in it. Eat in it. Play in it. Go to school in it. Rio was in for some rough years. Filled in off-and-on by phone, his mother cried all day at the thought of her baby locked into a turtle shell for the waning years of his childhood.

I know in my head that we are lucky. This thing has a beginning and an end. It’s not forever, nor is it fatal. It will be hard on him, on me, on his mother, and on the grandmothers. But this is not more than we can handle. But in my heart… Well, that’s breaking.

We parents would take any burden upon our bodies to spare ourselves the burden placed on our souls that watching our children struggle or suffer causes.

If I could lift this burden from him I would do it in a millisecond. But those types of cosmic choices are the stuff of fairy tales. In the real world we do not get to choose our burdens. Of course, we will make it through this. Of course, in the end, it will somehow make sense.

But right here, right now, the world is a cruel place.