Haidee is a friend and fabulous cartoonist who uses her pen scathingly to put diabetes in its place – and us in a better place.
The Sweet Taste of Misery is her third cartoon book and I guarantee you’ll find sweet recognition and a new Soule-mate.
Given the fact that New York City is currently suffering from more than 150 Canadian wildfires, enduring the worst air pollution in decades, this cartoon seemed particularly apt.
On the flip side I offer you an article I wrote several years ago for HuffPost, “Type 1 Diabetes Finally Explained”. Every so often something causes me to re-read something I’ve written some time ago. This morning it was the article above.
At the time, it went viral and people told me it gave them a way to talk to family members about what life is like with type 1 diabetes more than anything they’d ever read. That’s about as good as it gets for me.
Having never gone to diabetes camp myself, diagnosed at 18 years old in 1972, I was invited to run a workshop on ‘Increasing diabetes happiness and advocacy’ this past weekend at Camp Nejeda’s Survive & Thrive weekend for adults with type 1 diabetes. Twenty 21 to 70 year old campers got to reflect on something they’ve gained having diabetes, discover their strengths and ponder the meaningfulness in their personal diabetes story.
I arrived Saturday afternoon so I missed the Friday evening bonfire, inspirational talk from power lifter Chris Ruden, and informational lectures from endo Robin Goland. But I did get to enjoy psychologist Ken Gorfinkle’s Q&A discussion on ‘What don’t our doctors know’, a balloon competition, at least I think it was, outdoor movie (what else but ‘Dirty Dancing’?!) and the chance to make new friends (I did).
Of course, what’s just as important at diabetes camp to any activity is the opportunity to let down your hair while letting your insulin pump alarm without concern amidst of sea of pumps. Of course I was told to my face, affectionately, that I’m ‘old school’ when I pulled out my vial and syringe. Well, it takes all kinds, and at camp, all kinds are present and welcome.
What impresses me about Camp Nejeda is how this long-running camp offers a weekend for everyone. For instance there’s BFF Weekend for kids– bring your best friend or sibling with you to diabetes camp. That’s both next weekend and September 15-17th. There’s also a weekend for families. Here’s the summer schedule if you have a child with T1D or perhaps know someone who does. I also believe the camp is looking for camp counselors if you know an older teen who’s interested.
My new camp friend came all on her own and felt perfectly at ease among all the friendly faces. That’s the special magic of being in a place where having type 1 diabetes is the norm, where alarms alarm, insulin T-shirts abound and snacks are everywhere just in case.
Participants sharing during my workshop in the dining hall below.
This is not a post about diabetes, except indirectly. I am reading more and more articles about how many people in the US, and worldwide, are lonely. In the US the number is one out of every two Americans is experiencing some measurable level of loneliness. In the US, in my mind, it’s a direct result of our win/lose, individualistic, go it alone, pull yourself up by your bootstraps, car and cowboy culture.
April 30th the New York Times printed this guest essay from our Surgeon General, Vivek H. Murthy, “Surgeon General: We Have Become a Lonely Nation. It’s Time to Fix That.” If you don’t subscribe to the Times, the main takeaway was how disconnected we’ve become from each other; young people move away from their parents, are on their phones constantly, neighbors don’t know each other, and health difficulties without support can often tip loneliness into depression.
Everyone agrees loneliness is a problem and it’s everywhere, but few offer any solutions. The Times printed a follow-up article titled, “Seeking Cures for Loneliness” and readers wrote in. The effort to ease loneliness that really touched me was offered by Mary Mulvihill of New York.
She is the founder of Seniors Taking Action. She referred to what’s called “talking or chat benches,” which are common in the U.K. and Australia and according to Mary spreading across the world. These are designated benches in parks and common areas, often pained a different color designating them as places where anyone can take a seat and chat with whoever may be sitting there or arrives.
Mary says they are working on having these in her community in New York City, and I thought immediately, what a wonderful, easy and workable thing to do. Don’t we know the casual interactions we have all the time with the supermarket cashier, salespeople, people on the bus or subway, or in the park, are almost always a lift for both involved.
If you’d like to help lower the loneliness epidemic or you’d like a place yourself where you could chat with someone, maybe you can make it happen in your community. We all know living with diabetes, without enough educational resources or the support of friends who have diabetes, can throw us right into the loneliness pool.
I just listened to naturopath Dr. Jody Stanislaw being interviewed by blogger, podcaster and fellow type 1, Nayiri Mississian. Jody starts out telling her “diagnosis story” and by time we’re twenty minutes in, I’m overwhelmed by the complexity of what I do every single day, my best to keep my blood sugar between my own set targets, 75 and 150 mg/dl. I’m relieved someone gets it and looking forward to learning what Jody is going to share, and she does not disappoint.
Stanislaw has been educating and counseling type 1s for years. You can find tons of informative short videos on her website.
I know most of what Jody says (we once had drinks in lower Manhattan so I feel permission to call her Jody) in this interview below. For instance I know it’s ridiculous to follow the pre-bolus rule – take your dose 15 minutes before your meal – without any context. Am I going to eat a lot of simple carbs or hardly any carbs and a lot of fat, which will delay any rise? Did I just come in from exercising at the gym, which will continue to lower my blood sugar?
Yet, when Jody says it’s all about “insulin dosing” I know I have to listen. And I hear insights from Stanislaw. Like why walking in the morning won’t bring down high blood sugar. It more likely will bring it up. And that cold showers increase insulin sensitivity, which is really interesting because the husband recently discovered Wim Hof, a fellow Netherlander, who is all about cold showers. I hear him, the husband not Wim, gasping every morning. But I digress.
Take an hour and watch the video below. I think you’ll be surprised how much valuable content is in this interview as the good doctor tells it like it is after she’s experimented on herself endlessly for her, and our, benefit.
I think endocrinologist and Professor, Anne Peters, is a warrior out there fighting the good fight as she has all her career. Her credentials and advocacy are beyond impressive. In her clinical practice she tends to people with diabetes in economically disadvantaged East Los Angeles.
Here, she gives the update to the Diabetes Standards of Care. What strikes me is how oriented we are to solve everything with medicine. For instance in the Netherlands, and I happen to know this because it is the husband’s home country, depression is first treated with walks in nature and music. Interesting.
From this video, I was quickly reminded if you have type 2 diabetes you’re likely on anywhere between six and ten pills, there’s barely a mention of psychosocial support, and the lower targets and plethora of medicines that form the standards make me wonder, “Who is truly benefitting?” I don’t have the answer, but this video begs the question – for me.
I had no idea until recently, but June of last year Children With Diabetes (CWD) issued their Journey Award. Similar to the Joslin Diabetes Center, CWD honors the passage of 10, 25, 50 and 75 years living with type 1 diabetes. Joslin, to my knowledge, has now added a medal for 80 years!
If you have been living with type 1 for more than 10 years, you are welcome, no you are encouraged, to apply to receive your medal celebrating your journey. There’s a brief CWD application form which you’ll find here.
Meanwhile, if you have a child with type 1 diabetes, I can’t think of a better place to spend part of your summer than at Children with Diabetes’ annual Friends for Life conference in Orlando. It’s an extraordinary experience for families to get together to learn, bond, have fun and feel less alone. Details here.
Personally, having received my 50 year medal from Joslin last year, and now from CWD, in all honesty, I can’t imagine 75 years. That’s 25 years from now when I would be 94 should I live that long.
That’s a lot of years where much could change in the management of type 1 diabetes, even the discovery of a cure. But I don’t tend to think that way; I’m grateful for all the advances we have over the past 10-15 years that have made living with the condition easier compared to the first several decades I journeyed with this condition. Hopefully the good stuff will just keep coming.
I told someone yesterday, “It doesn’t matter that I’ve had diabetes for 51 years. Any day, every day, my blood sugar can go too high and too low and often does.” How refreshing to see my favorite TCOYD d-boys, both endocrinologists who got type 1 at 15 years old, Drs Steven Edelman and Jeremy Pettus, get it as wrong as me.
In this wonderful video they challenge themselves, and each other, to guess the amount of carbs and calories in a variety of breakfasts, lunches and dinners. God love ’em, in their words, “it’s all a crap shoot!” Ain’t that the truth.
One thing to note that they also point out, while carbs are the dominant force in raising blood sugar, don’t forget an abundance of fat and protein also raise blood sugar, and do it over a longer period of time.
Well, I didn’t know. It’s a nice thought, however, to let your doctor know what he/she means to you and how he/she helps you stay healthy. And imagine they do that plagued by Industrialized healthcare, 15 minute office visits, electronic record keep requirements, and working for institutions that value tests and procedures over, in the words of Sir William Osler:
“The good physician treats the disease; the great physician treats the patient who has the disease.”
Osler, who lived from 1849 to 1918, is often named as the father of modern medicine. He was a stellar diagnostician, created the first residency program for training physicians and brought medical students out of the lecture hall to the bedside for clinical training. He wrote several books and had huge influence in bringing humanity to medicine.
But I digress. Doctors’ Day is celebrated around the world to recognize the contribution to communities and individuals that physicians make. It was first celebrated in the U.S. in 1933, when Eudora Brown Almond, married to a physician, thought there should be a day to honor physicians. Flowers were placed on the graves of doctors that had passed away.
If you have a health professional you’d like to thank for their service, why not do so today? I’m going to send my endo a note of appreciation (yes, through our MyChart portal). Our first meeting was 90 minutes long and we only talked about diabetes in the last half hour. Five years since, our visits are typically 30 minutes and we always start by his asking me how I am in general. He has helped me titrate a new insulin over the weekend, he treats me with respect, as an equal. and is always open to learning from me.
I also advocate leaving a doctor when you don’t feel you have any rapport. Two decades ago I fired my endo after he didn’t return my call after I left four messages trying to find out the results of a test that he had told me was significant.
I hope your health team are worthy of your time, and if so your appreciation.
Last night on my way home while riding on the subway, the husband texted me, “How about meeting at Giovanni for an early dinner?” Giovanni is one of our three neighborhood watering holes. “I’m not very hungry,” I replied, “but sure,” since the husband rarely makes requests, and I have given him my solemn oath that when he does I will listen. Yes, you read that right, not necessarily agree or acquiesce, but listen.
Not too hungry, I ordered pasta. I rarely eat pasta because of the carb rise but I have – and want to know if you’ve discovered the same – discovered that homemade pasta does not raise my blood sugar nearly as much as packaged.
So I ordered the restaurant’s homemade Tagliatelle alla Genovese (braised short ribs, carrots, celery, fresh herbs & white wine, finished with shaved pecorino cheese.) Low carb ingredients, not even tomato sauce to add to the rise, just pasta a smattering of meat and vegetables. Yes, it was delicious.
My blood sugar was already on the low side before eating so I devoured a piece of bread to raise it a bit. I dosed 1.5 units of Humalog in total for my meal – for the bread, a shared appetizer of grilled vegetables and two-thirds of my smallish pasta dish. By time we walked the 8 minutes home my blood sugar was in the 50s. While I obviously didn’t think 1.5 units would knock me back to 57 mg/dl, or was too much for a piece of bread and pasta, even lower carb homemade pasta, it was. (YDMV: Your diabetes may vary)
Here’s the part where the “management-rage” comes in. Earlier in the day, not that you think me anything but a low carber, which I am 95% of the time, or a dilettante, I had also eaten lunch out. I wouldn’t normally also go out for dinner, but the husband stated his preference and it’s been a while since he had).
My lunch friend coaxed me (yes, I’m giving up full responsibility) to share an order of something she’d coveted every time she’d been where we were now having lunch: lemon ricotta pancakes.
Pancakes! I never order pancakes, but heck, we were celebrating getting together on the first beautiful, sunny, warm day in a while. We ordered the pancakes to share. And of course a spinach salad to balance the scales. The pancake dish was only two pancakes, but large. I ate three quarters of my one pancake, being so unused to knowing how to dose for this particular food item.
Bam! Walking twenty blocks to the subway after lunch, my blood sugar was letting me know I had overdosed. I corrected with the glucose tabs I carry. So just hours later, my blood sugar falling, falling once again, I couldn’t bring myself to eat more glucose tabs. Management-rage took over with a vengeance. My inner monologue, “I’m so tired of this diabetes, the constant calculating, the constant tracking of bites of food, guessing, eating when I don’t want to, starting the whole mess all over again every day… waa, waa, waa…” If you’re interested, I’ve had this sucker 51 years.
I lay on the couch watching my blood sugar go from 64 to 57 mg/dl and I ate a piece of 85% chocolate and a keto coconut cookie. I KNEW it wouldn’t do much, but I simply couldn’t bring myself to eat more glucose tablets. “Fuc# it!” I also asked the husband to watch my blood sugar on his Apple Watch, as I didn’t even want to look. That lasted about 10 minutes.
A half hour goes by, my blood sugar’s just sitting at 57 mg/dl and I was getting kinda hungry so I ate a Cauliflower Slim (3 grams carb) with a little avocado. Still not willing to give in to my blood sugar or my rage. I hung out at 57 for about an hour before I ate more chocolate and another keto cookie, and slowly, slowly it started going up. Did I feel my low? Yes, and no. Yes, but not enough to make me do anything intelligent. Was I suffering from hypo-fog, absolutely not! I was experiencing management-rage: resentment about the current conditions my diabetes was causing and (safely) unwilling to do anything about it.
Before I went to bed I was a lovely 95 mg/dl, but I knew, like a thief knows not to knock over the ming vase entering the house he’s going to rob, that it wasn’t going to stay at 95. That chocolate was going to keep my blood sugar rising for hours. To check my theory I got out of bed 15 minutes later and I was 113. I took half a unit of Humalog knowing 113 wasn’t the top of my rise. Overnight I went up to 162 mg/dl. When I woke at 4:15 am (I know, tell me about it) I was 138 mg/dl and I took half a unit of Humalog. At 7 am I was 95.
My management-rage last night was real. A temporary, albeit real burnout, breakdown on a day I was just damn tired of dealing with diabetes. I’ve had them before, I’ll have them again. I’m not irresponsible and I am not advising you to be irresponsible. If I’d gone lower than 55 mg/dl, or felt I was in any danger, I would have eaten the glucose tabs. I kept eyes on my blood sugar all night.
There is no avoiding the highs and lows. We are not machines and blood sugar is unpredictable. We will forever be guessing, calculating, judging, recalculating…but it has lifted my spirits to think of last nights episode as “management-rage.” Maybe because I don’t own a car, so I get to have my own little corner of rage. Feel free to use it the next time you’re having such a day.
Note: Pictured above are my co-conspirators last night and three favorite chocolate bars. They used to all be available at Trader Joe’s, but the Montezuma no longer is, at least not at mine. I brought 12 bars home from London, where they’re manufactured, recently. You can find the Cauliflower Slims at Trader Joe’s.
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