What makes a diagnosis?
I worked at a patient program the other night for my company, and shared information about our two medications. One medicine we make is for Type 2 diabetes, the other can be used in both Type 1 and Type 2s. The presentation that night was about healthy cooking tips, and the audience furiously jotted down notes as nutritionists and chefs prepared tasty and healthy dishes from the stage. During the breaks between presentations, patients came by the vendor tables to learn more about our products. In order to provide the appropriate information to patients, I’d ask if they were a Type 1 or Type 2.
And this is the part where I got truly surprised. I was shocked at 1.) the number of Type 2s who did not know what kind of diabetes they had (all the Type 1s responded quickly and confidently), and 2) How many of the Type 2s said they “weren’t a Type 1 yet because they weren’t on insulin.”
Huh? Last I checked, types of diabetes were defined by their epidemiology, not their medications. Yes, it’s true that all Type 1s have to take insulin because we don’t make it, but that doesn’t define why we’re Type 1s. We’re Type 1s because we have an autoimmune disease that stops our pancreas from making insulin. Period. Type 2 diabetes follows a different pathology altogether. True, Type 2 is a degenerative disease, and many with it will “end up” on insulin because their beta cells eventually putter out completely, it’s still different from the autoimmune attacks of Type 1s. I’ve always felt that the two types need different names, and this misnomer that the disease is defined by what medication you require just reinforces the fact. That said, I understand that some make the case that since the poor outcomes of diabetes of all types can be the same, they really are just “variations” of the same disease. I completely disagree, but I can see how some people go there.
What I can’t understand is how so many patients don’t know what kind of diabetes they have. And I think the blame needs to be shared here across health care providers, the patients, and media/stereotypes/damn Steel Magnolias again. The overwhelming number of diabetes cases in the U.S. (about 95% in fact) are Type 2, which means that if you generally use the term diabetes, you’re likely to referring to a Type 2 case. But this sweeping generalization is where hurtful stereotypes come in to play – for both groups of patients. Type 2s get cornered into thinking that going on insulin means they have “the bad kind” of diabetes, and Type 1s get asked what they did so badly that they had to go on “the needle.” The confusion around the differences is tough on patients, because it perpetuates the untruths abounding about both types of the disease.
And here’s the part where I don’t know what to do about it. Which I suppose is why I’m on this blog complaining about it. It frustrates the heck out of me that there’s not enough education about a disease that 25 MILLION people in the U.S. have for them to understand which Type they have. And it makes me feel defensive about my bum pancreas and super-charged auto-immune capabilities. I did my best to educate folks the other night, but at the end of the day, what we’re doing for diabetes education as a country isn’t enough. And if we’re not careful, we’ll literally sink this nation with the costs of simply not knowing enough.
Just that one thing.
One thing that cracks me up (and sometimes drives me bonkers) about telling people I have diabetes is the people who react with the ONE thing they associate diabetes with. It goes like this. You say: “I have Type 1 diabetes.” And they say:
“Oh so you have to eat lunch at the same time each day?”
“I know all about that! You have to poke your finger!”
“Right, my cousin has it. So you wear that little pager/walkman thingy that checks your numbers?”
“My nana has it. So you must have to go for a walk every day like she does.”
“Alright so a Diet Coke for you then.”
“You have to carry around little sugar packets huh?”
“Ever seen Steel Magnolias?”
“Oh yes, my father has it. So you have to take an injection every day, right?”
“It’s so good you exercise so it doesn’t get worse.”
I just think it is so funny to hear what the one thing people seem to associate with diabetes is. For whatever reason, from whatever experience they’ve had, it’s always about the pump/finger poke/mealtimes/insert random item here for them. It’s as if there’s nothing else to this disease except that ONE THING that you HAVE to do as a diabetic. Right. It’s just that one thing…plus about a million others, all day, every day. Then you’re in the ballpark of what it takes to really manage this disease. If I don’t laugh at some of these statements, I just get frustrated. So I try to laugh 
I’m curious to know for any of you readers out there who were diagnosed as an adult – was there one thing you assumed with diabetes? One behavior that you associated with this disease? Leave a comment to let us know what it was!
You again.
If my DexCom and I were listed as “in a relationship” on Facebook, it would definitely be “Complicated.” I love my DexCom dearly. We have a history together, and it’s completely changed my life and my d-management. I truly believe it’s made my A1c better, made me feel safer, helped me be a better athlete, and all around been a positive influence in my d-life.
But just like with other relationships, you can have too much of a good thing. The DexCom’s main job is to provide constant feedback in the form of continuous blood sugars. And while that’s great for accountability, it can also be…a little excessive. I’ve noticed lately that I’m suffering from a bit of constant-surveillance burnout. You can’t hide from the DexCom and it’s steady stream of numbers, but you can most certainly ignore them. Like when my bedside table starts rattling at three in the morning from the “HIGH” vibrate alert of the Dex, it’s been all too easy lately to just hit “ok,” and go right back to sleep. Which is exactly what you’re not supposed to do in that situation. I should get up, test, correct, and then go back to sleep. It’s just that there always seems to be something beeping telling me to test, refill, re-insert, check in on, change the batteries of, interrupt whatever I’m doing be it sleep or a movie or whatever and PAY ATTENTION to diabetes. And for some reason right now, I’m just…over it.
I haven’t lost my diabetes motivation – I absolutely want to take the best care of myself as possible, and I’m committed to micro-managing this disease for lifetime. And I’m also completely amazed and grateful for these devices that help us manage diabetes with such incredible technology. I don’t want to sound ungrateful, because there’s thousands of people out there who deserve a DexCom and can’t get one because of cost or other barriers. It’s just that sometimes, there’s a little too much feedback with all these beeping things. Sometimes I’d rather not know how I’m doing so I can just have some peace. I’m not suffering from diabetes burnout right now, but I am suffering from device burnout. Which means I need to find an opportunity for a device-free weekend soon, so I can take a beeping vacation (not to be confused with a “bleeping” vacation. I’m not that upset).
I love you DexCom, it’s just that you’re always…there.
The Carlsbad Half Marathon: Check!
There was a moment during the half marathon, where I looked around at the 10,000+ people up early on a Sunday morning and thought to myself about how funny it was that we all paid $60 to get our butts kicked by 13.1 miles worth of concrete. But just like the vast majority of the other folks in the crowd, the moment I crossed that finish line felt like it was worth a million bucks. That, my friends, is a feeling that I will forever wish could be bottled up and carted around with me, because there’s just nothing like pushing yourself to your physical limits and gettin’ it done.
So the short story is the half marathon went great. Perfect weather, rocking crowd, beautiful course with miles of ocean views and no major problems to speak of. And, yes I ran the whole way “barefoot style” in my Vibram Five Finger shoes (see Friday’s post for a pic) and yes, we got a lot of comments on them. Some runners actually carried on entire conversations about our shoes right behind us, as if we couldn’t hear them even though my boyfriend and I didn’t wear headphones and could hear them perfectly. Apparently, running gives you immunity to side conversations? I don’t know. But I do know that I am a believer in the minimalist running shoe for sure now. I have no major joint problems to speak of, my legs and calves especially feel stronger than ever, and I ran this half marathon faster than my last one.
Things that also went better this half marathon included my blood sugars – although they were far from perfect. The last half I ran was before I was on a CGM, and due to overdoing the during-race GU packs from fear of lows, I finished that run with a BG of over 500mg/dL, feeling like crap. This race, I had my CGM strapped to my stomach in my Tummietote belt, and was able to control things better.
By better though, I mean I did top out at 286mg/dL, and chilled in the high 200s for most of the race. Ug. I’m actually not entirely sure what happened, but I’m going to blame this one on nerves because I know I was managing the big D well. I pulled into the parking lot with a BG of 156. I ate an apple, which I have been doing before all my long training runs, and as to be suspected, my blood sugar bounced up to about 200 right away. I turned my basals down anyways though, to make sure I didn’t bottom out. But by mile two, I had two DexCom arrows pointing straight up in the air and a reading of 240. I used my OmniPod pump controller, also in my belt, to give a half unit bolus (while still running, I might add!), and carried on.
But that damn blood sugar stuck AROUND. I mean for literally the entire race. It was as if my blood sugar was completely unaware that there was any physical activity going on. It might as well have been heckling me the whole time from the sidelines with “well ain’t ya gonna BOLUS for this, Alexis?” I didn’t bolus again after that half unit though– one because I’m so nervous about bolus insulin on board while working out and two because on every other run I’ve gone on, I’ve had it come down about half way through! Oh what’s that you say? Diabetes makes no sense? Oh right, now I remember that.
I took a sizeable bolus right after the race though, and after a small spike post lunch, I settled down into the 80-120 range for the evening, which was a nice reward for all the hard work. And although running in the 280s didn’t feel awesome, it was manageable, and about 1000 times better than running so dangerously high in my last halfer. I also feel like I genuinely couldn’t have done much about it – I had to make those diabetes management decisions based on the information I had at hand, and sometimes, you just don’t get it right.
And I have to say, I was in good company for this race: Insulindependence had a HUGE presence at this race – tons of runners in their team jerseys were out on both the marathon and half marathon courses. I ran into a friend of mine along the way and we chatted for a minute while running. He told me his CGM had been about 100 points off that morning when he tested. “Not the right time DexCom, not the right time” he said jokingly – and I certainly felt his pain. Our technology is the most amazing thing in the world when it works right. But machines make mistakes, and they don’t care if it’s race day or not. It was fun to talk to another person with diabetes on the course about our own little secret world of CGMs and d-management. It’s a funny little club we’re in here. I was so impressed with the Insulindepence crew though, they really helped a lot of people with diabetes do this race, and knowing that you can push yourself further than you ever imagined is SUCH a powerful tool for diabetes confidence.
My favorite diabetes part of the race was two moms that ran up next to me during the last half hour of the run. I know they were moms because the first one sidled up next to me and said “I Run on Insulin (she had read the back of my t-shirt), are you doing ok? Feeling good?” in a way that only a mom would.
I looked her straight in the eye and reassured her: “I’m doing great!”
Her running buddy was on the other side of us, and said “My son has diabetes, I just love your t-shirt! I gotta take a picture of that!”
“Oh cool!” I panted back to her, “He can do anything he wants to do!”
“And he does!” she shouted back, with a huge smile on her face. I loved that. I loved that she was so proud to say that her son has diabetes and that he doesn’t let it hold him back. Her enthusiasm and clear pride for her kid made me beam, and it gave me that extra push at mile 12 that I needed to finish strong.
My favorite non-diabetes part of the race though, was finishing side by side with my boyfriend. I’d never done any athletic event with a partner before him, and my boyfriend is always willing and excited to do these activities together – from Tour de Cure to kayaking to this half marathon, he’s never balked at my “special needs” during our athletic endeavors. He’s always been right where he was at the finish line on Sunday: by my side.
Gone running…
I’ll be honest folks. Between my last training runs, a hectic work week, and the steady bundle of nerves I’ve been developing all week in preparation for Sunday’s half marathon, it’s left a little drought in the creative juices department. I don’t have much to say today, but I am sure I will after the race on Sunday. So for now, I’m just concentrating on my mantra: One foot in front of the other. Catch you all on Monday…if I’m not permanently stuck to my couch for a few days after the race
Before I ran on insulin…
…there was martial arts on insulin. My first sports love was karate. I discovered it in college by accident, after declaring myself “not athletic” due to years of warming the JV volleyball team’s bench (seriously…JV. For three years. I decided not to embarrass myself my Senior Year). Turns out, I had picked a sport to play based on it’s level of popularity with the “cool girls,” and not something I was actually good at. But in college, when I signed up for karate class to earn a few credits, I found out that I am an athlete, and that a sport I excelled at did indeed exist.
Karate taught me so many things, but perhaps most importantly, it showed me that I could kick ass – literally – and physically push myself to the limit while still being in control of my diabetes. Succeeding in the ring taught me there was nowhere my diabetes couldn’t go- I just had to figure out how to do it. After getting in to karate, running followed, as did hiking and biking and surfing and international travel (technically not a sport, but challenging with the ‘betes sometimes). The word karate means “open hand,” representing the fact that the art form uses only the body and the mind to defend oneself – not weapons. And although I have some “diabetes weapons” these days in the form of my pump and CGM, it really does come down to just your own body and mind when you’re going to battle with this disease. As I head into the physical challenge of my half marathon this weekend, I will call on my countless karate lessons that showed me I could do so much more than I ever imagined.
My practice of martial arts is more informal these days – boxing and kickboxing classes that focus more on the workout and less on technique. Although there’s no grandmaster yelling commands in Japanese, or a thick belt knotted around my gi-clad waist, the feelings are still the same: you rely on yourself in martial arts, and you build strength with each repetition, each lesson, each success and each failure. Just like with diabetes.
The A1c Game: Keeping me Guessing
There are some A1cs that we’re able to predict. You kind of know where your blood sugars have been the past few months, the average reading on your meter makes sense, and you can kinda ballpark what the lab work will say.
Right now is not one of those times for me. In fact, it’s the exact opposite time for me. If A1cs were measured on dart boards, the guess of what mine is right now would be a blind-folded shot in the dark.
There’s a few monkey wrenches contributing to my last three months of glycemic control that make my current state of affairs a mystery. There were the good ole holidays, of course. Between Thanksgiving and New Year’s, there were more happy hours, dinners, holiday parties and other get-togethers than I knew what to do with – or knew how to d-manage. This was tempered, but also complicated by my half marathon training. The long training runs meant bouts of extended highs or persistent lows for me, and adjustments galore with each new training milestone I hit. And although I’ll always believe that exercising holds more benefit than detriment when it comes to diabetes, it can definitely cause some roller coaster BGs, especially when training for a distance event.
The funny thing about having a lot of highs and lows though, is that those average to a pretty nice number sometimes. The A1c, although a powerful tool, is still just an average, and my goal is not to have a pretty percentage that’s made up of 40s and 320s. In fact, I’d take an elevated A1c that’s made up of DexCom flatlines before I took a lower number any day of the week. Fluctuations are what cause the most microvascular damage in us folks with the ‘betes, and in my opinion, the thing that wears us out the most. I always feel like I got my butt kicked after a day of swinging between extremes. So although it’s entirely possible this A1c will come back looking pretty good, I can’t say it will be for the right reasons considering the wide swings I’ve had with all this running.
So, all I can do is get the blood draw and wait. And although I have no idea what this lab work will reveal, I can at least keep in mind that I have the whole year ahead of me to change it, if it comes back ugly!
Expert I am not.
I once received an email from a fellow d-blogger asking if she could forward me a message from someone who was looking for advice on running with diabetes. I obliged, and she responded with “Great, I just want her to be able to talk to someone who knows what she’s doing.”
Ha. “Knows what she’s doing” in reference to running with diabetes? While I took that as a tremendous complement, and yes, the title of my blog is I Run On Insulin, “knows what she’s doing” is…uh…a stretch.
Yes, I am a regular runner. Yes, this is my second half marathon. And yes, I’ve had diabetes for 19 years. And I do suppose my experience has taught me a few more tricks than your average diabetic running bear, but I rarely classify myself as “the one who knows what she’s doing.” Because we never really know what diabetes is doing. And this, my friends, is what prevents anyone from having all the answers to this whole diabetes+exercise thing.
I’ve been training for this half marathon for three months now, and I can honestly say that I’ve never had two runs that go exactly the same, blood sugar-wise – and that includes what happens to my BGs during, right after, and even 24 hours after a long run. Saturday morning I did a six miler and got low halfway through. Yesterday morning I knocked out four and finished at over 180mg/dL. My 10 miler on New Year’s Day left my high for six hours, then low for the next eight. Yes, I know what to do according to my DexCom or meter, and as a result I make an educated guess with my pump, but that’s about all I’m sure of when it comes to sports and the ‘betes. Otherwise, it’s plan for the worst, hope for the best, and adjust all the way through.
A reader recently emailed asking for some tips about starting up running again, now a few years into her diagnosis. And although I was able to tell her about the way I carry my gear on the road, and that she might get lows and highs at times she didn’t expect, I felt pretty clueless in terms of what I could offer her besides “It depends.” There are no hard and fast rules for what to eat, what to set your basals at, or what’s going to happen to your blood sugar on a run. There’s just too many cotnributing factors.
The truth of the matter is that diabetes is about as predictable as a Magic 8 Ball sometimes, and although I might look like I know what I’m doing, all you need to do to learn otherwise is read the mango post from yesterday (fruit = helpless – and thanks for all the tips on that, by the way! You guys gave me some good strategies!). With this disease, we gain experience, and we learn from trial and error. But at the end of the day, the only thing you can really count on is that diabetes…can’t be counted on. So in that sense, if we understand that, then I think we all “know what we’re doing,” right? Or at least we know the crazy unpredictable beast we’re dealing with!
Mangled by the Mango: A Short Story in the Theater Known as Diabetes
The Scene: My couch. 9:45pm.
The Protagonist: My valiant efforts to look up the carb count for a mango, and
dose for it with laser-like precision.
The Antagonist: Diabetes. Who else would it be?
Alexis is ready to retire for the evening. She had a sensible dinner of chicken and spinach, with almost zero carbohydrates. She’d chosen a beautiful mango from the local market for her dessert, justifying its sweetness because of her carb-free dinner. She used the CalorieKing app on her iPhone to dutifully research the carb count of said mango, and accurately dosed for it uses her OmniPod insulin pump. The air is full of promise and sound diabetes management. She checks her bloodsugar.
Alexis: “275mg/dL? After all that? After looking up the effing carbs and dosing like a ninja and that’s what I get? TWO SEVENTY FIVE?! Hey Jacob….”
(calls to her boyfriend in the other room)
Jacob: “Yeah?”
Alexis: “Can you please remind me that, the next time we’re at the grocery store and I say the fruit looks nice and I’d really like to have a piece of it for dessert that I have no idea how to bolus for fruit and it’s going to completely ruin my day after 12 hours of gloriously controlled blood sugars?”
Jacob: “No problem sweetie. Will do.”
**SCENE**
Playwrite’s note: And that’s why my boyfriend is awesome – he goes right along with my diabetes rants, bless his heart!
Interview: The Book of Better
Chuck Eichten is design director for Nike Inc., and he’s also had Type 1 diabetes for over 30 years. And there were several years of his life where he maintained an A1c of 4.5%. That’s normal for someone WITHOUT diabetes. “That’s awesome” you might be quick to say. Except it wasn’t. At his most strict control, Chuck was working out twice a day, sometimes logging 100 miles on his bike in 24 hours. In his words he noted “For almost 25 years, I thought I had mastered tight control of my Type 1 diabetes: I was in great physical condition. Ideal weight. Zero retinopathy. No kidney issues. No side effects.” Pretty amazing, except for one thing: Chucks had a lot of lows. And then started having hypo-induced seizures. When he had his fifth seizure just after his son turned one year old, he realized that “his perfect was not.” Yes, he had incredible numbers. But it was at the cost of running dangerously low, and now he had a young child to worry about. He finally realized that “being dead was not a good trade-off for too tight control.” So Chuck changed his life, changed his diabetes management, and wrote about everything he’s learned in an amazing new book: The Book of Better. As soon as I cracked open this colorful, graphics-and-chart-filled book, I started laughing – and I also started learning. Chuck breaks down diabetes management into one simple goal: make it BETTER. And he does it while being hilarious and informative at the same time. I mean, have you ever thought that picking your endocrinologist is just like dating and you might have to go through a few to find “the one”? Me neither.
Chuck was kind enough to do an interview with me about his book, and I encourage you to get yourself a copy. Whether you’ve had diabetes for 1 day or like me, almost two decades, whether you have complications or are as healthy as non-diabetic horse, you will learn from this book. And you will laugh your ass off. Get it here, and please check out the interview below. I’ve also popped in some of the graphics he uses throughout the book, included his rendition of what diabetes looks like (a little monster!) Many thanks to Chuck for his awesome book and for agreeing to this interview!
Q) The Book of Better is unlike any diabetes book out there – for one thing, it’s funny as all get out, and for another, it’s colorful with lots of graphics, charts, and that almost-cute diabetes monster character running throughout the pages. What made you want to write a book about diabetes that’s so unique?
I’m one of those ‘visual’ people. I’m always interested in how things look, how they are put together, why they look the way they do. Cars, books, clothes, spoons, chairs, whatever. I guess that’s why I’m a designer. Designers always think they can improve things—make something more functional, more fun, more interesting, more BETTER. Sometimes it turns out that we should probably have left well enough alone, but other times an insightful designer can have a big positive impact. So I’m always looking at things, imagining how I would make them different, and hopefully better. At some point I tried to re-imagine how we look at, talk about, and maybe even manage our diabetes, and that led me to start working on The Book.
Oh, and thanks for saying it is funny.
Of course, right now, as we speak, there is a designer looking at The Book of Better, thinking, “This is CRAP! I could easily do something MUCH better than this.”
Q) At the beginning of your book, you describe the almost obsessive care you took of your diabetes in order to maintain an A1c of 4.5%. Because you were running so consistently low, you also experienced dangerous seizures, and you realized that “being dead was not a good trade-off for too tight control.” But, you lived this tightly controlled for 20 years – what exactly was it that made you decide you had to change. And what steps did you begin to take to make a change?
What I’ve learned is that our diabetes evolves over time—symptoms and treatment and reactions. For me in particular, my reaction to low blood sugars changed dramatically. So although I had been managing my blood sugars at very low levels for some time, it wasn’t until I starting having severe reactions that I got the message. Sad that it took a half a dozen seizures to get my attention. But it was finally enough to force me to do something different—to find something better, I guess.
The first step was to find a really good doctor who really understood diabetes at least as well as I did. Doctor’s aren’t all the same you know. It’s like dating, I think—you have to go out with a few before you find the right one. But it is hard because, as the person dealing with this thing every damn minute of every day, I thought I knew everything. Turns out I didn’t. Still don’t. Finding a good doctor was a spectacular improvement. That led me to finally try the insulin pump. Which was huge.
Q) You outright say in this book that you believe using an insulin pump is the best way to manage diabetes. What do you say to the person with excellent control on shots
though, who is really happy with their regimen? Do you believe that with diabetes “if it ain’t broke, don’t fix it?” in terms of a management regimen? Or is it your belief that everyone should be on a pump?
Yeah, I guess I’m a bit of a zealot about the pump. Here’s the deal. I’m saying there is nothing widely available that comes close to allowing us to control our insulin like the pump. So it’s the best. Is it a pain in the ass? Yes. Is it uncomfortable? Yes? Is it unsightly? Yes. Do I wish I didn’t have to wear one? Yes. Do I take issue with someone who chooses to treat their diabetes otherwise? No. I absolutely believe you should do what works for you. But everyone should be aware of what the pump offers. No one should make a decision to use a pump or not use a pump without understanding the benefits. No one should experience roadblocks to making an informed decision.
I love analogies, so here’s my analogy: The best way for me to get to New York City from Portland Oregon is by plane. It is not the only way, or even the most enjoyable, but few would argue that, all things considered, a plane is the most efficient and cost-effective and even the safest way to get there. It may not be the best way for everyone. But I think you would be sad if you rode a horse from San Francisco to New Jersey, missed your meeting, and then later found out that you could have taken a plane.
I am fortunate to have been very healthy with diabetes. For over 20 years, on multiple, and even ONE daily injection, I worked to stay fit, kept my A1c low and never had even minor issues with my eyes, my kidneys, or my nerves. Everything looked great. And every doctor I ever met before having my sixth seizure said, in effect, “If it ain’t broke, don’t fix it.” But that seizure forced me to do something, so I switched to the pump. And I have not had a seizure since. That was 10 years ago. And it doesn’t prove anything about the pump, but it does prove, I think, that we have to constantly consider if there isn’t another way to get “Better.” We might as well consider the possibilities.
Q) I Run on Insulin is a blog about diabetes, but with a special focus on exercise and readers love to hear about other people with diabetes and how they stay fit. You make an excellent argument for “moving” consistently (exercising) in the book. Back in the day, you used to exercise twice a day to maintain a lowered blood sugar. What’s your exercise routine like these days?
I LOVE your blog, Alexis. I have tremendous respect for anyone who writes, and especially writes well, regularly on any topic. And I think it is fantastic that you are helping inspire people with diabetes to move. We need all the inspiration we can get.
I argue that we should move every day. I know the every day thing sounds dreadful, and on many dark cold wet days it is. But we really don’t have any choice. Our bodies were built to move constantly. That’s how they work. If we don’t move them regularly—not 3 times a week regularly, but, I think, every day regularly— then they just won’t work right. There’s no way around it.
I’ve been through every phase of exercise (I call it moving because I know that it doesn’t have to be a 4 mile run to affect our health). When I was young I was kinda chubby and hated moving. Then in my teens I got into sports and that triggered a couple decades of loving the sweat. That transmuted into obsession and my twice a day routine. I’ve come back to earth. I am now in what I call my ‘maintenance moving mode.’ I move just enough every day to maintain my health, weight, and eat some stuff that maybe I shouldn’t.
If you love extreme moving—marathons, kick-boxing tournaments, all that stuff—I say go for it. But it’s not necessary. I really believe that about 30 minutes of real physical exertion every single solitary day is enough for most of us to stay healthy. Provided we don’t just sit around the rest of the day. It’s not that much of a commitment, really. And when you are done after 30 minutes you will feel awesome. Not least because you are done until tomorrow.
Q) This book is incredibly inspirational, and manages to be funny, not preachy, with bits like “learn from the idiot” (referring to yourself as an idiot, which I am certain no one thinks to be true, you let people know you already tried something the hard way). What’s the single most motivating piece of advice you have for someone with diabetes?
That is kind of you to say, Alexis. Always nice to get, or share a little inspiration, where we can. So thank you.
And I’m glad you found parts of the book amusing. It was the only way I could write it. If someone were watching our diabetic lives from a distance, and they weren’t concerned with being insensitive and incurring our wrath, they would find a lot of it pretty funny. Shots and tubes and blood and all that. Since I have diabetes I wasn’t concerned with hurting my feelings.
For me, the most inspiring thing about our good friend and nemesis diabetes is that there is so much we can do to push back, to make it Better. I know so many people who live with so many conditions that they have no control over. I feel for them, and actually feel lucky knowing that if I work hard I have a real opportunity to live a long healthy life.
YOU can actually make diabetes BETTER. That’s pretty cool, I think. We can feel pretty lucky.
Q) Everyone has people in their lives that act like the “Diabetes Police.” These are the folks that, well-meaning as they are, manage to annoy the heck out of you by saying things like “should you be eating that?” And “what did you do wrong?” when there’s a 250mg/dL on the meter. How do you deal with the “Diabetes Police in your life?”
After many years, I have reached a peaceful place with the “Diabetes Police.” I just assume they only say things because they care. And Mark Twain, one of the funniest and most insightful American writers ever, reminded us that, “We are all ignorant, just about different things.” So just because I know a little about diabetes doesn’t mean everyone should. I don’t know anything about “Jersey Shore,” for example. Some would consider that pretty ignorant.
So when the “Diabetes Police” show up, I just nod, and try to answer questions with brief, maybe slightly helpful, mostly vague answers. And if someone seems genuinely interested, I might try to educate a little bit. Otherwise, I just let it pass. Mostly. Occasionally, I respond in some juvenile fashion.
Q) In your book you review various versions of “the cure,” from a closed loop system to fully functioning beta cells of your own. In your mind, what truly constitutes a cure?
A cure would be where I don’t have to think about any of it—blood sugar, how much I eat when, insulin—any of that stuff. But in all likelihood, based on my research, treatment for diabetes will be iterative. Our lives with diabetes will continue to gradually improve. Gradually we will think less and less about all the bits and pieces. And finally we’ll wake up one morning and say, “This feels a lot like a cure.”
But really, I don’t think I’ll ever give up caring about what, and how much I eat, and trying to stay in decent shape. Even when I’m cured.
I also think that’s it’s only a cure if it can be shared with the whole world. If it’s only something that a wealthy few of us in western developed countries can have, then it’s not really a cure. In my mind.
Alexis, thanks for the fantastic thoughtful questions and not asking me anything technical. Thanks for letting me be on your blog.
Thank YOU Chuck!