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Posts from the ‘Diabetes Online Community’ Category

Link Love.

My inbox was not properly maintained while my daughter was on school vacation last week (but let’s be honest – when is it ever properly maintained?), but I’m taking a crack at catching up.  I wanted to share a few bits and pieces that were interesting to me, and might be of interest to you.

First, this:

Okay.  Now links:

  • “Diabetes sometimes feels like the ultimate roller coaster: ups and downs, no idea what’s around the corner, and moments where I fear for my life. Part of that ride is an incredible emotional and mental balancing act …”  Read more from diaTribe‘s Adam Brown in his informative article, The Diabetes Emotional Rollercoaster.
  • “Maybe,” he told me, “you could do a better job of managing his diabetes at night.”  A dentist runs commentary on one mom’s diabetes experiences over at A Sweet Life.
  • Tom “Diabetes Dad” Karlya joins the Diabetes Patient Advocacy Coalition to share the success of Reegan’s Rule in North Carolina as a precedent for other states.  You can find more information for the April 28 webinar here, and you can register here.  Tune in at 12 pm eastern on April 28.
  • This weekend, out in Dallas, TX, is the TypeOneNation summit, and I’m excited to be rolling my pregnant self out there for the conference.  “The TypeOneNation Summit is JDRF’s signature educational event for people with type 1 diabetes (T1D), their families and friends.  Join other individuals, families and caregivers affected by T1D at all life stages, for a day of education, inspiration and connection.”  For more information, check out the details here.
  • Also coming up is the DREAMS in the City silent auction, benefitting the Diabetes Research Institute.  Check out this link for more information on the NYC event on May 5th.
  • The DiabetesMine Patient Voices contest is up and running again this year, and applications to receive a scholarship to attend the Innovation Summit are open for the next month, so consider applying!  More information on the summit can be found here.
  • The team at Lifescan recently shared their KnowMyCopay.com site, which aims “to help you discover which brand of test strips has the lowest co-pay.”  I wasn’t able to find my health insurance provider on the list (I wanted to know if strips other than Lifescan’s would pop up as a result, considering the source), but I’m hoping that this site can be of service to folks who are trying to figure out how to make sense of the insurance hoops they have to jump through for decent diabetes care.  In any event, I appreciate something that aims to make life easier for consumers/patients/PEOPLE.
  • And lastly, but not least(ly), I wanted to extend an invitation to folks in the Pacific Northwest to a really cool event taking place June 25 and 26th in Seattle, WA – the ConnecT1D Retreat.  I feel that the psychosocial influence of diabetes is under-served and frankly, under-valued.  We, as PWD, don’t want a frigging pity party, but there needs to be care taken of our emotional and mental well being; it’s just as important as our physical self.  Whole-person care starts with conferences like the ConnecT1D Retreat, and I encourage people touched by diabetes to consider registering.  (Besides, you can hang out the absolutely amazing Joe Solowiejczyk, and I’ll be drafting off his brilliance all weekend.)

And now we dance.

Guest Post: Diabetes at Work.

When I asked folks in the DOC if they’d be willing to lend their voices and perspectives for a guest blog post, I was excited to hear from Susannah (aka @bessiebelle on Instagram and Twitter).  Susannah grew up in South Australia and is now working as a lawyer in Cambridge, in the UK.  She was diagnosed with type 1 diabetes during the course of her last year of high school (2000) and is currently using a Dexcom with her Animas Vibe insulin pump.  

Today, she’s taking over SUM to talk about diabetes in the work place, and how to handle the moments when discretion is preferred but diabetes still needs attention, and she’s looking from tips from our community on handling diabetes in the workplace.

  *   *   *

A significant aspect of my life with diabetes which I often feel is ignored is how it fits into my career. Diabetes goes with me to work everyday and has seen the highs (completing deals) and lows (being at work at 2am) of work and as well as sugar!

When I started to write this post about working life with diabetes I was armed with a list of anecdotes but I didn’t expect life to serve up another example of when the two worlds collide. One of the frustrating things that any diabetic knows is it can always throw you something unexpected.

After a seemingly average Sunday afternoon gym session Monday morning last week saw me battling a hypo that just wouldn’t respond (to glucose tabs, reduced basal plus bread with strawberry jam for good measure). With heart still racing and a foggy brain at 9am I emailed my boss to let him know I was somewhat delayed but I’d be in soon. Moments like this make me glad that I’ve been open with my boss about being a type 1 diabetic but also make me anxious that I will be judged as less capable because of it.

Am I the only one who feels like that?

The emotional side of diabetes creeps in too easily. After an experience like that morning I’m left worried that I’ll be judged because of it. Being late on Monday morning is the least of it… We all know there are the doctors’ appointments (6 monthly checks, annual reviews, eye checks, and other specialists – always longer than expected and involving long times in waiting rooms), hypos setting you back (sometimes only a few minutes, other times for much longer), pump sites pulled out causing hassle and even spurting fingers resulting in blood stained shirts! Some of these take up more time than others but they all intrude on what might otherwise be a normal day in the office. Something that I’m acutely reminded of when I’m filling in my 7 hours of 6 minute units of time each day.

I fear hypos at work more than anywhere else. I don’t want to explain why I’m sweating at my desk like I’ve been for a run or to be faced by a deadline but struggling to gather my thoughts clearly. I don’t feel any more comfortable in this situation now than I did when I first started work as a law clerk 10 years ago. Luckily, for many years I had the luxury of my own office and the ability to shut the door gave a level of privacy when required. Recently, I moved to an open plan firm and I am having to reconsider many things I took for granted with a (glass) door… pump site changes at my desk are a thing of the past (cue a few panicked mornings hastily inserting a new site and refilling so that I won’t have to later). I’ve been lucky not to ever have a hypo in a meeting, but this is not without taking care. Meetings with clients or all parties to negotiate a document are a balancing act of starting the meeting high enough not to crash but not so high that I feel sluggish. (and that’s not considering the blood sugar spikes from stress).

Thankfully there are the comical moments – taking a draft document to my boss and having to explain the red smudges on the print out (after 15 years it’s fairly easy to squeeze blood from my favourite fingers… I tested as I typed this and got blood on cue!); being in a meeting with the same boss and having my pump alarm go off – after a quizzical expression from a colleague my boss calmly commented “Don’t worry, Susannah’s bra is ringing!” Needless to say my pump alarms are strictly on vibrate these days.

There are moments that call for advocacy whether I feel like it or not. In a previous job I was surprised when HR requested that I remove my spare insulin from the work fridge or alternatively hide it in a container so other people didn’t have to worry about ‘contamination’. Why?! To this day I haven’t quite figured out who raised the concern (or why?!) but I defiantly ignored that request (with colleagues’ support) and also politely explained to HR that it was not a risk to anyone’s sandwich.

I’m always interested to hear how others handle disclosure with their employers (as well as see photos of their diabetes supplies stashed in their desk), and am always surprised by people who manage not to disclose it. I’m yet to perfect my ‘I’m busy having a hypo so please don’t ask me a question face’ so disclosure is what feels best for me. It may not be for someone else (YDMV). In contemplating my days in the office I realise I have it pretty easy if the worst is getting blood on a contract! I’m in awe of the many people who manage their diabetes while being responsible for others (whether a mother, teacher, nurse or doctor, just to list a few).

How do you handle your diabetes at work? Any tips on how to stress less?

5 Worst Things to Consume If You Have Diabetes.

Today is World Health Day and the focus is on diabetes.  Every media outlet in the world is picking up on this health story and twisting it just so, highlighting misconceptions aplenty and feeding the stigma about diabetes.  Messages get muddled and broken down into clickbait headlines that sometimes hurt our community more than they educate.

What are the five worst things to consume if you have diabetes? HINT: This is not a list of foods.  

  1. Misconceptions. Don’t consume them.  There is a public perception about diabetes as a whole and about the individual types – don’t let society’s misinformed views shape your own.
  2. Other people’s misunderstandings. Don’t consume them.  Don’t let people’s ignorance about diabetes ruin your day.  Correct their information and move on.
  3. Misinformed messages from the media. Don’t consume them.  Address and correct articles that perpetuate stereotypes and misinformation. We’ll never be happy, as a community, with a public health campaign, but we can take steps to help shape it in a way that feels right.  If not us, who?
  4. Anger and hatred towards our community. Don’t consume it.  People get angry about diabetes and the people who have it are often the target of blame, shame, and disgust.  Don’t let anger infiltrate our community.  We’re better than that.
  5. Stigma. Don’t consume it.  Don’t swallow it and don’t let it define you.  Taking care of your health is nothing to be ashamed of, so wear your efforts towards good health with pride.


What do I wish people knew about diabetes?  This:  

There is more than one kind of diabetes.  This isn’t a knock on my type 2 and gestational diabetes friends, but definitely a knock on society’s perceptions at large.  People have one musty, old perception of what diabetes looks like, and it’s always someone older, heavier, and lazy.  Would they be surprised to meet our fit type 2 friends, or the 20 year old gestational PWD?  Or a “juvenile diabetic” who isn’t eight years old? Or any of our community friends? Diabetes doesn’t have “a look.”

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I’m not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we’re hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don’t feel alone.  Diabetes isn’t just mine.  It belongs to everyone who cares about me.

Diabetes isn’t just a physiological disease.  Mental health matters when it comes to diabetes management. It’s not just a question of blood sugar levels and insulin supplementation.  It’s about managing the emotional output that comes as part of life with a chronic illness.  It’s about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it’s a short life or a very long one.

Diabetes isn’t easy.  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  “You just wear the pump, test your blood sugar, and watch your diet and you’ll be fine, right?”  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes. It’s never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn’t.

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There’s no winning combination and no “right” way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin – this doesn’t necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn’t work for everyone, and neither do certain medications.  What works for you may not work for everyone. It’s important to remember that this disease, like life, doesn’t have a predictable path, so there are plenty of “right’ ways to handle it.

Just because we don’t look sick doesn’t mean we don’t deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn’t.  There’s no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn’t worth their attention.

We deserve, we fight for, and we advocate for a better life, better health outcomes, … we deserve a fighting chance for a cure.

Balancing Diabetes: Parenting with Diabetes.

Back in March of 2014, my first book was published by Spry Publishing and it features a number of different voices from the diabetes community.  Today, I’m sharing an excerpt from Balancing Diabetes titled “Parenting with Diabetes,” which dives into the journey of parenting while managing diabetes, with perspectives from friends in the diabetes community.  Thanks to Spry and the diabetes community as a whole for supporting this book!

  *   *   *

When my daughter was born, I remember staring at her for ages and realizing that all the planning and strategy that had gone into a pregnancy with diabetes was behind me, and now I had a baby. An infant, for whom my husband and I were solely responsible. If she cried, it was our job to console her. If she was hungry, it was our job to feed her. And if she smiled, it was our job to feel arrogant and proud, as if we had anything to do with the smile of a two month old, when in fact it was most likely gas.

But whatever. We went with it.

Taking diabetes completely out of the equation, the move from “couple” to “couple with a baby” was a tremendous change.   My friend Lynnae and her husband became parents for the first time just a few months before Chris and I, so we had a sneak peek on what the transition to parenting might be like. Just after my friend’s baby was born, I went over to their house to watch the baby, and to give Lynnae a chance to take a nap. I was six and a half months pregnant at the time.

“Here, I can take her for a while and you can go upstairs and nap,” I said upon arriving.

“I haven’t showered since Tuesday,” Lynnae said, running her hands through her blonde hair. “And I don’t care.”

It was in that moment that I knew life would go bananas once the baby was born. (Thankfully, I quite like bananas.) On some days, diabetes management feels like a full time job, and I knew that motherhood was going to feel the same way, especially as I adjusted to the change. If my best friend wasn’t able to find the time or energy to shower every day, how on earth was I going to balance parenting an infant, recovering from delivery, and staying on top of all the diabetes duties?

I remember the first time I had a really bad low blood sugar, just after we brought the baby home from the hospital. She was tucked into the bassinet, perfectly safe and sound. Only she was wailing, with this loud cry and her bottom lip pouted out at an impossibly steep angle, because she was hungry.

“I’m sorry, baby girl. You have to wait just a few minutes so Mommy can have some juice, okay?”

I was standing at her side, my belly full of grape juice and a blood sugar of 43 mg/dl. My daughter needed to eat, I needed to breastfeed her, but I didn’t feel confident picking her up just yet. Of course, she started to cry just as the meter tossed that result at me. A perfect storm of chaos. My hands were too shaky and my brain wasn’t 100% tuned in to reality, so I felt it was safer to wait instead of picking her up while I still felt dizzy. She was safe and unharmed in her bassinet, but her cries were cutting through me and settling right in like barbed wire around my heart.

“Two more minutes, sweetie. Can you hang on?” I stood by the bassinet and stroked her hair while she cried.

“Why, Mom? Why aren’t you picking me up and feeding me? You’re right there! I can see you! I can smell you! I hear your voice! Why? Mommy, pick me up!” (Or at least that’s what I heard in her cries. I’m sure it was some variation on that theme.)

Within a few more minutes, I felt much better, blood sugar-wise. I felt capable of picking up my daughter and bringing her over to the couch so I could feed her. I kept a jar of glucose tabs on the coffee table while I fed Birdy, and the Dexcom eventually showed some arrows pointing north (it was like receiving a “thumbs up” from my CGM). And we were both fine. Birdy was fed, I was feeling better, and we moved on with our day.

But the guilt of not giving her what she needed, when she needed it, was something I needed to adjust to. I had to be in good form in order to take good care of my kid. Which meant, in that moment, tending to a low blood sugar ranked higher than picking up my daughter, in terms of safety. I can’t pick her up if I feel shaky. And I can’t let the sound of her cries make me make decisions that aren’t safe. But it was difficult, that struggle between what was best, overall, and what felt necessary, instinct-wise.

Leaving her in the bassinet while I went to drink juice was heartbreaking, because she didn’t understand why I wasn’t giving her what she needed. I didn’t want her to think her mommy is ignoring her. The time will come when she understands how this balance works. She’ll grow up knowing that food is sometimes medicine and that her mommy, though madly in love with her, can’t do it all at once.

Lindsay Rhoades, T1D and diagnosed at the age of 27, commiserated with me about this. “I didn’t find any balance at first. That’s just being honest. For as much as I owned and rocked the hell out of pregnancy, I failed miserably as a new mom with diabetes. My daughter is now two and I still struggle every single day, having to remind myself that my diabetes needs must be a priority, and yes, sometimes even over her wants and needs.”

Yes – a thousand times yes. This is the challenge of balancing diabetes and parenting: there is no real balance to be struck. The learning curve that comes with being a new parent is so steep and so sleepless that everything feels new, even the diabetes management tasks you could do with your eyes shut. What was once a priority (“Testing my blood sugar first thing every morning! I’m all over it!”) becomes something you remember as you’re giving your infant their second feeding and you’re throwing teeny, spit-up-covered onesies into the washing machine.

Jacquie Wojick agreed: “I’m still working on this [achieving balance]. I spent a lot of time in post-birth ‘screw it all’ state, partly because I was so busy taking care of a baby, and partly because I was burned out from the intense control I had during my pregnancy.”

This seems to be a common thread among all the moms I spoke with about pregnancy and subsequent motherhood – the intense diabetes management during pregnancy can lead to patches of diabetes-related burnout. All of that health-focused hard work is in pursuit of achieving a healthy pregnancy, so of course once the baby comes out, your brain needs some breathing room.

I was at Joslin for an appointment with my endocrinologist a few months after my daughter was born, deep in my own postpartum burnout. She and I reviewed my blood sugars, of which there were few.

“I’m not testing as much as I’d like to be. Sometimes, I’m taking a fasting number and then not checking again until early afternoon. I’m down to like four times a day. And I’m not going to lie; I wrote these numbers down this morning while sitting in the waiting room. I also made that one up,” I said, pointing to a number on the sheet that represented a “before bed” test, but was actually a “before bed” from a completely different day.

She looked at my pathetic logbook and made some notes in her computer system while I purged my diabetic guilt.

“I did great while I was pregnant, didn’t I? And then while I was breastfeeding? It seems like when it mattered for my daughter, I was able to put her first and make my health a priority. But now, I’m in wicked burnout. I don’t CARE about a shred of this crap. I don’t want to test. I am going through the motions in changing my Dexcom sensor and my pump sites. I’m just … pffft about the whole mess. Is that normal for women after they have a baby, after all the hyper-intensive management?”

We talked for a while about how extreme the focus is on diabetes management while pregnant. And how being checked on every week makes for a higher level of accountability, and as a result, a higher level of attention to diabetes. How can things go off the track when you’re being monitored so closely?

“It’s very common for women to feel burnt out after they have the baby, especially if they were also breastfeeding. That’s more than a year of very intense management. Hopefully checking in with me more often will help get you back on track, post-baby?”

This was a step towards balance, or at least restoring some balance to my life. I am not one to take a huge challenge and make a dozen changes, all at once. In order for me to make good health habits that stick, I need to shift things incrementally. The road back from post-pregnancy diabetes burnout and the return to taking responsibility for my diabetes again was a difficult one for me.

Not all new parents experience the burnout that I experienced after becoming a mom. Longtime PWD and friend Melissa Baland Lee felt that motherhood was an easy transition. “New motherhood came so naturally to me. I don’t remember having to balance much of anything. I mean, I kept glucose tabs and juice boxes on my nursing table, but there were so many other things to worry about now. It was nice to be able to shift all of that incessant diabetes attention from the child that cannot be tamed – ‘diabetes’ – to the child you had for so long longed to hold – your new baby.”

That relief in shifting the focus is something I can identify with, as preparing for and actually being pregnant was a year-long intense focus for me. Motherhood was a more jarring change, being asked to immediately balance baby with “regular life.” I didn’t find balance, at first, and I don’t find it regularly.   And this is not something unique to moms with diabetes; dads with diabetes are also making changes to their routine when a child is added to the mix. Diabetes-related tasks, and fears, can be exacerbated by an expanding family.

“Being a first-time parent with a colicky child, there’s honestly very little I clearly remember about the following few months. One of the only ways we could get our daughter to calm down was to walk around the neighborhood with her, and I remember having to do a quick blood sugar check before we headed out to walk around the block. I do remember some middle-of-the-night instances where I had to take care of my own low blood sugar instead of the crying infant, and that was a hard thing to do. As a parent, you want to do everything you can to make your child happy, but you also have to realize that in order to be able to take care of them, you have to be in working order first,” said Harry Thompson, diagnosed with type 1 at the age of eleven and the father of a two and a half year old daughter. “Thankfully my wife was very understanding. And we drank a ton of really strong coffee. I do remember that.”

Harry’s diabetes does play into their decision to expand the family, but more because of the residual effects of diabetes. “I worry that my diabetes will have a major influence on whether or not our daughter has a sibling. Not health-wise, but just from a financial standpoint. While diabetes thankfully isn’t quite as expensive as having a child, it’s certainly a considerable expense that chips away at the disposable income.”

Worrying about our children developing diabetes can be a pervasive concern in the parenting community, a natural worry considering the disease is something you know so intimately. In my family, most of the decisions we made were born out of the desire for our child to have the best start possible, but diabetes did play an influencing role. When it came to breastfeeding, I decided to do it as her mother, but I worked hard to keep doing it, as her mother with diabetes, considering all the research that shows breast feeding a child can help ward off a type 1 diabetes diagnosis. (But I’m not sure how confident I feel about that, seeing as how I was the only breastfed child in my family, yet I’m the only one with diabetes. It’s a roll of the dice.) My husband and I also decided to delay the introduction of gluten for our daughter until she was fifteen months old, based on theories about “leaky gut” serving as an autoimmune catalyst.

George Simmons, diagnosed with type 1 diabetes at the age of 17, is the father of two children who don’t have diabetes. “I have not tested them, at this point, because we all know the symptoms and will check if anything seems odd. But they’ve both told me that if they were ever diagnosed, they could handle it well because they know so much. My worry is that their kids will have it someday. That almost hurts more than if my own kids developed diabetes. I already feel guilt about even that possibility, like leaving the door open and unknowingly letting a cold burst of air into your warm home.”

Scott Johnson, diagnosed at age five, is undecided as to testing his own two children. “On one hand, I am not sure I want to know beforehand. I don’t want to live life just waiting for the bombshell to drop. But on the other hand, I feel that I am not contributing to the science of diabetes the way I’d like, and I worry that I might miss an important prevention study if either of my kids tested positive for antibodies. It’s not an easy issue to wrestle with.”

Harry was ready to tackle parenthood with his wife, but did have some specific diabetes-related concerns. “Knowing there’s a chance our daughter could someday develop diabetes, my wife and I took additional steps that we wouldn’t have done otherwise. We decided to bank our daughter’s cord blood, admittedly an investment with a potentially low return, but in the event that stem cell research advances to the point where cord banked blood could actually form the basis of a treatment for a disease, we wanted to prepare for that possibility.”

My husband and I haven’t had our daughter formally tested yet, either, for many of the same reasons. I had “the thought” a few times just after my daughter was born. Sometime it was a very wet diaper that made me furrow my brow. Sometimes she would nurse for longer than usual, and it would give me pause. Even though she seemed (and is) healthy and very strong, I still thought about taking out my meter and pricking her heel myself. And there have been a handful of times that I have tested my daughter’s blood sugar, just to put my mind at ease.


Overall, I try to shake the thought off the same way I shake off that thought every time I wonder if my niece or nephew might have dipped into my autoimmune grab bag. I don’t allow my brain to go there consistently. It’s not denial, but feels more like a protective measure taken by my mind, shielding my psyche from letting fear of something I can’t control permeate my daily life. I know what to worry about. I refuse to wait for something to happen that may not ever happen. If her health status were to change, my job is to ensure that her ‘happy’ status doesn’t.

Family physician, person with diabetes, and parent of twins, Sean Oser, did have to go through the diabetes diagnosis of one of his daughters. Managing her diabetes is a very different journey than managing his own. “I find it very challenging to manage my own diabetes and my daughter’s, often forgetting that they are not the same. I had to start unlearning the ‘rules’ of diabetes and recasting them as only my own. It was like suddenly learning that gravity doesn’t affect everyone the same way, and you feel stupid for not realizing it earlier. On top of that, there was tremendous guilt interwoven with everything, for of course I felt that it was purely my fault that Jessica had developed diabetes; I ‘gave it to her.’ I’ve gotten better at shelving the guilt and other emotions to tackle the practical reality of having to manage her diabetes and teach her to do the same, but I’m still learning.”

Guilt seems to be an emotion that hits hard when you are living with diabetes, and alongside the parental guilt that seems to come tucked neatly inside every package of diapers doesn’t make for a good combination. But diabetes does offer a certain level of perspective, as a parent, and one that offers your child a special perspective all their own.

Sean is concerned that his daughters worry about his diabetes, knowing they both also worry about his daughter’s diabetes. “It’s very hard to express, and even harder to teach, the subtle differences between concern and worry, and that one helps you to be prepared, while the other can be destructive. But my diabetes has definitely helped my children develop a sense of empathy and caring. They understand that disease does not equal disability, and they have seen that something most would mark as ‘highly undesirable’ can be turned into a source of tremendous strength.”

“My hope is twofold,” said Karen, living with type 1 since she was fifteen years old, reflecting on how diabetes touches her daughter’s life. “I hope that she realizes what a gift her healthy body is, and appreciates it and takes care of it, and relishes it. And I also hope that she doesn’t need to be held back by any adversity that may come her way. Life isn’t always easy, but she’ll be strong enough to handle that fact.”

As an athlete and occasional marathoner, Harry hopes his daughter will eventually understand the need to sometimes put yourself first. “I know that my diabetes is better controlled when I’m able to exercise regularly, and my body appears to be wired so that I can only commit to an exercise program if I’m training for a specific goal. I end up picking things like marathons, triathlons, and bike rides that require a considerable amount of training, often cutting into our precious weekend family time.”

“While I hate spending time away from my family because of training, I hope that our daughter will view the outcome as, ‘My dad ran a marathon,’ rather than, ‘My dad is sick.’ I know it will be a long time before she’s able to fully understand diabetes, but I don’t get a second chance to give her a first impression of it, and I want her to see that diabetes is not holding me back.”

“I hope my child learns about self-care,” offered Melissa. “My husband and I are from families where self-care was never modeled for us. We saw a lot of self-neglect at the expense of caring for others. Caring for yourself was considered selfish, but I hope that my generation of mothers is teaching their children that we care best for others when we meet our own needs, too. I want my children to watch me count my carbs and go to the doctor and meet others with my condition. I want them to know that we don’t hide in the dark with our worries or our obstacles. We take care of ourselves so that we can live life to the fullest.”

My daughter, if asked what my “job” is, responds, “Your job is to take good care of me.” And when I ask her what her job is, she replies, “To take good care of you and daddy.” She understands that part of taking good care of myself means paying attention to diabetes-related things that she barely understands, like my insulin pump, glucose meter, and the beeps coming from my Dexcom.

“I’m going to draw a picture of Grandpa,” she said to me one afternoon.

“Okay, so where do you start?” I asked her.

She put her finger to her lips, pondering. “How about … a head! With two eyes! And a nose with nostrils. And some cheeks.”

Birdy pressed her pen against the paper, painstakingly drawing a circle for the head, and then two eyes, and a nose. Her attention to detail shows me how much of the world she draws in through her eyes.

“So then … a neck?” She draws a nice, loooong neck. (Her people sometimes look like the kin of giraffes.) “And then some shoulders and a necklace?”

“Does Grandpa wear a necklace?”

“No …” She thinks again. “He wears a watch. And then … hmmm … what else he has on his body?”

“Well, people have lots of the same body parts. Two eyes, two ears, nostrils, teeth, a neck. Look at mommy’s body – what do I have that Grandpa also has?”

She surveyed my body closely. “We already has the eyes. And the nose. Oh, knees!!” Pressing the pen to her notebook with satisfaction, some knees were added to her drawing. “But not a Dexcom. You have a Dexcom. You has one but I don’t have one. Or Grandpa doesn’t have one. You have it.”

“True. But what does it do?”

“It goes ‘BEEEEEP!’ when you need glupose tabs or if you need some insuwin.”

“Right. It helps me do my job. Because what’s my job?”

“To take good care of me,” she says, concentrating hard as she gave Grandpa a second nose.

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You can purchase a copy of Balancing Diabetes if you’d like to read more.  As always, thanks for everything.

Fingerpricks: An Interview with Haidee Soule Merritt.

Haidee Soule Merritt has the uncanny ability to illustrate what’s going on in the minds of many people touched by diabetes, and she’s sharing her talents yet again in her second book, Fingerpricks, Volume 2.  It’s not that her cartoons are just good, but they are poignant and insightful and have a way of seeing diabetes through a very specific, very honest lens.  Her work is a little dark, at times, but that makes sense because diabetes isn’t always a laughing matter … but sometimes a good smirk helps take the edge off things.

Her work resonates on so many levels for me, and I’m excited to share an interview with her today on SUM.

Kerri:  Would you mind sharing a little bit about your diabetes diagnosis and your experiences with diabetes?

Haidee:  I was diagnosed with T1D at the age of 2 ½ at the Children’s Hospital in Boston. Obviously, the early 70s was still the Dark Ages in terms of diabetes advancements. Synthetic insulin hadn’t been invented yet and there were no at-home test meters to speak of. At that time in my history I feel worse for my parents than I do for myself: I’m the one who doesn’t remember it.

My experiences with diabetes are what tell the story of my life. What else has been so reliably present?

Kerri:  Your first volume of Fingerpricks is a dog-earned one in my house because the illustrations show a raw and poignant version of diabetes, one that people don’t often share or see. Can you talk about why you decided to tackle this side of the diabetes experience?

Haidee:  Oh, that’s so great to hear, Kerri! I speculate that this side of diabetes exists for all of us in one way or another. This book consists, for the most part, of an edited selection of my personal thoughts; my hope is to reach people who don’t let thoughts like this surface as freely as I do. For non-diabetics, I think it’s essential to understand diabetes isn’t just watching what you eat and taking insulin. All books on diabetes contribute to the understanding of this disease.

For me, tackling this side of diabetes is cathartic, so somewhat selfish. Plus, there’s a small percentage of the diabetes community that appreciates the humor—or an appreciation that the humor is recognized. (There’s an even smaller percentage of people who know my work.) I am secretly very satisfied with the small number of accolades I get because, to me, they’re from the right people.

There’s a cartoon I did years ago that I would say is the most widely shared, re-posted, “liked” and from which I’ve had the highest number of responses. (Sadly, I’m not that flattered because it’s not the illustration itself that’s getting the attention.) This interest was a strong indicator that people really want others to know what goes on in our heads. Part of the motivation for this publication is based on that.


Kerri:  One of my favorite cartoons is “You don’t LOOK like a diabetic.” “Smoke and mirrors, my friend.”  When did you realize that diabetes was something that made you feel exceptional instead of an exception?

Haidee:  Oh, I think I’ve always had it. As an adult I’m just comfortable to own it. It’s saying what we’re all thinking. The cartoon “Don’t waste me time” ties directly into that mindset. A lot more is demanded from a person with diabetes, whether that’s visible to the world or not. You “bring it” with no choice about the matter. Luckily, another diabetic can appreciate it. I don’t have the time or patience for people who don’t move as efficiently through life as the majority of diabetics do. For every one thought people without diabetes have, a person with diabetes has 5-10. This is proven research that I’ve done myself.

Kerri:  Can you talk more about the “You’re so brave!” illustration?

Haidee:  Yeah, I think that’s a shitty thing to hear your whole life when you really have no choice about the matter. It used to make me really angry and I was torn about how to respond. To me, courage and bravery are not the same. Bravery is a bold, fearless spirit, bordering on dramatics or thespianism. Courage is doing something you don’t want to do with a stiff upper lip. Like the commentary for that image says, Bravery implies that there’s a choice, a conscious decision to choose the option that puts oneself in the path of a risk.

I’ve determined that the correct response is: “It’s amazing what courage you can find in yourself when faced with challenges.”

Kerri:  What’s the backstory/inspiration behind the “Is our love strong enough for this kind of honesty?” cartoon? It’s one of my favorites, because it really hits on the emotionally fragile battleground that data sharing can become.

Haidee:  There’s no real back-story or specific inspiration, just an observation. It’s funny how we determine which individuals we’re honest with and those we keep at arm’s-length. It’s a strange and specific kind of intimacy that data sharing (I like your term) represents. Is it an indicator of how solid the relationship is? “If you really love me you’ll show me your numbers” vs. “If you really love me you wouldn’t ask.” The diabetic is certainly the one in the driver’s seat here though, for once.

Kerri:  What do you hope people think, or feel, after reading through Fingerpricks, Volume 2?

Haidee:  That it was worth $18.00. Really, the book jumps all over the place so I don’t think there’s one specific thought or feeling that I have in mind. I published this book for myself.

Kerri:  What’s next for you and your journey as an artist and storyteller in this community?

Haidee:  Who knows what the future holds. I contribute illustrations to various people and industry sites so they pop up now and then. I prefer my work to be reflective of myself, my perspectives and feelings, and a lot of publications can’t embrace that in its entirety. I totally get it. I guess just keep an eye out for future books?

Did these cartoons make you laugh?  Make you think?  There’s more.  To pick up a copy of Haidee’s latest book, click through to her website and purchase Fingersticks, Volume 2.  While you’re at it, grab a copy of Volume 1.  You can throw some love to Haidee and Birdwing Press on Facebook, as well. 

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