Apr 23
Don’t mind me …
… I’ll just be sitting here with 1 unit of Humalog left in my pump because I went to bed with 9 units left and tried to use my insulin to the very last drop. I’ll let my dawn phenomenon-induced morning basal rate suck up the rest of this cartridge before swapping it out for a full one. Insulin isn’t something I take for granted. It’s precious stuff.
Mar 17
People with diabetes know what people with diabetes want, and John Sjölund is no exception to this rule. Diagnosed with type 1 diabetes just before he turned four, he has created a simple, streamlined solution to make multiple daily injections easier to manage: Timesulin. I’ve used his product, and thought of it as “informed MDI’ing.” Recently, he kicked off an Indiegogo campaign to raise funds to help bring Timesulin to the US market, and today, he’s sharing the how and why of that effort.
* * *
If we haven’t yet had the opportunity to meet, you won’t know that diabetes doesn’t define me. Diabetes has, however, given me a platform to speak to amazing people, to ensure I live healthier than most of my non-D friends and it’s put me on a path to try to make life for all of us around the world with diabetes a little easier. In fact, I have made this my mission!
I have lived with type 1 for 28 years, first diagnosed a couple of days before my fourth birthday. I really have never known a different life to one that consists of 6-10 finger pricks a day, 4-6 insulin injections and constantly checking in with my body to check whether my blood glucose levels are high…or that dreaded low. That said, diabetes has never held me back from leading a life that is full, high-paced and filled with excitement! Kickboxing, triathlons, sky diving or traveling off the beaten path (horseback riding in Lesotho??) …I decide what I want to do and then make adjustments to allow me to do whatever I set my mind to, despite my faulty pancreas.
With this life, however, few things are as routine as taking my four daily insulin shots – one before each meal and a slow-acting injection at bedtime. And maybe it’s because I usually have a thousand things on the go, but over the years I have often caught myself feeling unsure of whether or not I had taken my shot. Do you know that feeling? I would step out of the shower, ready to get to bed and then have that sinking feeling, ‘Ugh…Did I take it, or not?’ or sit down for dinner and then have that niggling worry hit me.
Not having a way of knowing for sure was driving me nuts! The best method I had was to ask my then-girlfriend, Susan (now my wife and pregnant with our twin boys, due any day now!) if she had seen me take my insulin. Too often, we had to resort to the Sniff Test.
The ‘Sniff Test?’ Indeed.
Susan has a keen sense of smell and would sniff my belly, legs or arms to see if the smell of insulin was present around the injection site, which was the sign that I had already taken it. After a shower, however, the method was less reliable as the smell of body wash would mask the pungent smell of insulin. The sniff test just wasn’t a fail safe method to see if I had taken my insulin or not, something that 77% of physicians estimate happens as many as six times a month for those of us with diabetes, according to a study done by Novo Nordisk. Also, I tend to take my long-acting insulin in the backside … and Susan often exerted her right to not have to sniff that region in the name of healthy living!
Frustrated with the existing solutions that were available to me from large pharmaceutical brands, I gathered a team, which included my brother Andreas, one of the creators of Skype, to create Timesulin – a smart replacement cap for your existing insulin pen to simply show how much time had passed since the last shot. By having this basic information you can make decisions that will help you avoid an accidental missed or double dose of insulin – which can have very serious effects. Very importantly, we didn’t want Timesulin to incorporate wi-fi, bluetooth or USB plugs or any other mumbo-jumbo that I felt complicated life with diabetes (it’s worth noting that I am a tech junky, know html and CSS, can program, but when it comes to diabetes I believe in the idea of ‘Keeping it simple’). I’m proud to say that we created a product that encompassed all of this – and is today being sold in forty countries around the globe – two years after launching to consumers in February 2012!
As proud as I am on a personal level that our simple solution has helped so many people, I am super frustrated that we haven’t been successful in getting our product to the United States. Why you may ask?
Most importantly, I realized that patients in the United States are not given the same choices about which devices will help them live their best possible life with diabetes. I want to change this.
We just launched a crowdfunding campaign on Indiegogo to help us raise the funds necessary to file for approval from the FDA and help us get Timesulin approved for distribution in the U.S. I am particularly excited about this as it truly lets those of us living with diabetes the ability to vote and decide for ourselves what tools we need. Is Timesulin going to solve everybody’s challenges with diabetes? Of course not, but it can play one small yet important part in allowing people to not be afraid of taking a double dose. Since I couldn’t find a solution that worked for me, I decided to start Timesulin. I have been super frustrated at not being able to empower other people to make that same decision for themselves, and I think that crowdfunding may just have the potential to help us.
This is just the start, we have lots of other ideas that we want to launch, which may not be blockbusters that cure diabetes, but can go a long way, until a cure is reached, in making life with diabetes a little simpler, less complicated and perhaps less scary.
We need your help to get there, and without the support of other people with diabetes, it will be impossible for us to keep innovating.
I know it has made things much easier for myself – and for Susan! – and importantly, we no longer have any of those awkward restaurant moments when it’s a toss up between pulling my shirt up to have her ‘Sniff Test’ my belly and taking the risk of an accidental double dose when I simply feel unsure of whether or not I had already administered my insulin dose. These days I just glance at Timesulin and know.
And now, so can you! Please help us succeed with this campaign and help everyone who’s ever needed a “Sniffer.”
* * *
You can follow the Timesulin efforts through their Twitter account, learn more about the product on their website, and you can help support the campaign by visiting their Indiegogo page. And if your significant other has ever sniffed your skin for insulin, show them this post; they are not alone.
Jan 24
It slipped out of my hand and smacked against the tile floor, making a thick, heavy sound that went silent and caused guilt almost immediately, like dropping your mom’s favorite Christmas tree ornament and watching it smash into a dozen pieces.
Brand new bottle of insulin, used previously for one, single pump cartridge filling. I had just taken it out of the insulin bottle protector I use to keep it safe. The insulin escaped from the bottle via a small crack at the bottom, created a small, bandaid-scented puddle on the blue bathroom tile.
“Shit. SHIT,” I muttered angrily, the pump cartridge needle held uselessly in my other hand. (I thought briefly about taking a syringe and drawing back as much of the puddle as I could, and then reminded myself that whatever I earned was going to be injected into my body, and also, gross.)
Loopy wandered in and stuck her fuzzy, gray nose towards the puddle, intrigued.
“Ew, no, Loopster. Hang on,” and I reached over to grab a wad of toilet paper to mop up $140 dollars worth of insulin spreading uselessly onto the bathroom floor.
I thought about insurance coverage, and the pharmacy down the road that would allow me to pick up a new bottle in a pinch, and the insulin pen at the bottom of my purse, and my job, and my support system and I felt guilty and blessed and lucky and grateful that, downstairs in the fridge, two full, pristine bottles of life-sustaining Humalog waited in the butter compartment.
After 27 years of type 1 diabetes, with ten years of pumping and over 60,000 blood sugar checks, I’ve certainly generated my share of diabetes-related garbage. All the little syringe caps and infusion sets, bottles of insulin, and dead strips, I could scent a landfill with the soft, wafting bouquet of band-aids (insulin) with ease.
But it doesn’t all have to be tossed out. There are ways to cleverly recycle diabetes supplies. Some people make insulin bottle lights. And others make jewelry. Today, I wanted to share an Etsy listing I came across, created by Camille Poussy Boivin of Québec, Canada. She’s found a way to cleverly recycle her Medtronic pump caps:
Camille said, “I am kind of a diabetes hoarder, I keep empty insulin bottles, lancet caps, test strip bottles and also infusion set caps. I’m a crafty D Mama so I keep all this waiting for a great idea as what to do with it! I started making D Mama diabetes inspired jewelry and wanted to do fun bracelets for kids. The pump caps were just perfect to use as clasp, they are easy to clip on and off.
I plan on doing pump caps necklaces and earrings soon. I just love recycling and spreading awareness all at the same time!!!”
To check out Camille’s store on Etsy, visit D MamaOwl Boutique. And to learn more about Camille and her family’s experiences with type 1 diabetes, be sure to visit her blog.
“My son’s type one diabetes inspired me to do beautiful things for others hoping it will inspired them to live a happy and joyful life despite type 1 diabetes,” added Camille.
Are you a diabetes upcycler? Share links to what you’ve created!
Nov 27
On the eve of Thanksgiving, I’m thankful.
Thankful for two, daft gray cats who rotate around this house instigating trouble, but who happily curl up on the couch with us at night. For job opportunities that fill my life with meaning. For family and family. For the husband who tolerates, with amazing patience, all of me. For the all-in hugs that Birdy issues in the morning, with her hair a stratosphere-tickling tangle and feet shuffling, but her eyes wide open, ready to experience everything.
And I’m thankful for access to insulin. As a person living with type 1 diabetes, I depend on insulin. Without access to insulin, I would be dead.
But tomorrow, and every day, so many people who need insulin do not have access to it. The global diabetes community needs our help, and Insulin for Life can serve as the compassionate conduit between those who can give and people with diabetes around the world who are in need. You can donate through their website by clicking here.
Give yourself another reason to be thankful: be thankful that you have the opportunity to save a life.
Nov 7
Across the board, a low blood sugar seems to be considered as anything under 70 mg/dL. Revisiting the American Diabetes Association’s website this morning offers up a list of symptoms of low blood sugar, like:
(As with most diabetes-related lists on the Internet, the further down the list you read, the worse shit seems to get.) The “what happens if a low blood sugar goes untreated” answer is short, and to the point: “If left untreated, hypoglycemia may lead to a seizure or unconsciousness (passing out, a coma). In this case, someone else must take over.”
When my daughter hears my Dexcom beeping, she understands the difference between the alert signaling a high blood sugar and the alert signaling a low. If the high alarm goes off, she doesn’t react, but if the low alarm goes off, she perks up immediately and asks me if I need a “glupose tab.” The immediacy and seriousness of low blood sugars is noticed by my three year old because she’s seen me go from normal, functional Mom to confused, sweaty, and tangled-in-my-own-words Mom in a matter of minutes.
The symptoms of low blood sugars don’t just vary from PWD to PWD, but often vary within the PWD’s own lifetime. When I was very small, my low blood sugar “tell” was when my mouth would go numb and my face felt like I’d had Novocaine hours earlier and it was just starting to wear off, with that tingly, prickly feeling. Over the years, I’ve had a lot of lows with varying symptoms:
“My brain is fully functioning. I know words. I know sounds. I know exactly what I need to do and what the number 42 means but my body has betrayed me and won’t move as I have asked, like I was a robot who had been over-oiled.” – Sad Robot
A video during which I went low.
“My mouth isn’t even mine. It’s just this thing, this portal to shove giant sugar tablets into. I can’t work up the saliva to chew, so the tab sits in my mouth until it starts to dissolve a little, and then my body remembers what to do with it. ‘Chew the damn thing.’ Tragedy of a low – no saliva. Nothing to help mince these tabs down into something useful.” – Bullets
“‘Thanks, and could I please have a small orange juice, without ice, as quickly as you can? Thanks so much,’ I said to the host in one breath, hypoglycemia filling up all the space around my head like the Radiohead video for No Surprises. A minute or two later, a glass of orange juice was on the table. I drained it in a few gulps.” - Reduced to Rubble
“I remember my mom sitting on the kitchen floor with me, breaking graham crackers into smaller bites and putting them in my mouth, dinner burning in pans on the stove. I remember my mom’s eyes being very wide but she wasn’t crying. I remember a glass of juice. I remember it was hard to chew because I was crying but I wasn’t sure why, and then there’s a sharp edit in my memory, where I don’t have any recollection of what happened next.” – Memories
No two lows feel or look the same, but a few grams of carbohydrate (plus the willpower to wait) can swiftly save the day. With quick recognition and treatment, lows pass as quickly as they come on (most of the time) but they are always in the back of my mind. When it comes to diabetes concerns, the fear of hypoglycemia has been constant for the last twenty-seven years. My purse is never (okay, rarely, but never without on purpose) without glucose tabs, and I’ve had the “this is glucagon, and here’s how to use it” conversation with more people than I can count.
What are your low blood sugar symptoms?
Jul 31
In keeping with the theme of revisiting older posts this week, I’m looking back at an Animas video about bringing diabetes to the beach. You know, for people who wear their cell phones into the water.
One thing I’ll add: those little pump cap things that come in the packages of infusion sites, for both Animas and Medtronic? Use them at the beach. Salt water caked up in an infusion set makes reattachment a PITA.
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