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Posts from the ‘Psychosocial Support’ Category

Looking Back: Diabetes Back in the Day.

This week is school vacation week for Birdzone, which means there’s plenty of Bird-watching and not a whole lot of inbox-management.  (Unless it’s after midnight … which is when all work-from-home happens … that’s normal, right?  So are these bags under my eyes, right?)  Which means that I might be re-visiting a few posts here and there.  Starting with today, and a look back at how diabetes has shown up in my diaries from years ago.

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Last night, I found a box of old diaries.  I’ve been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content.

It’s strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I’m not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a “baby.” But Butthead said he couldn’t do it because he was “diatetic.”  The teacher reprimanded him by saying, “That’s DIABETIC, and yes you can do this.”  I’m not exactly sure why, but that comment bothered me.  Alot.  I think it’s because I’m so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about ‘HandyMan’ on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said “diabetes” correctly.

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn’t help but overhear.  She said, “As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff.”  Am I a burden to my family?  Do they resent my diabetes?  Do I have a “normal” life?

This isn’t to call my mother out for saying this.  I’ve heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break.

Funny – I’ve always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that’s confusing because I say I don’t want to be treated differently at the same time.  It’s weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I’m going nuts.  At least at CBC I’m not the only one who feels that way.  If I tried explaining that to my friends, they’d look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  🙂

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It’s a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I’m not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

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!

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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. 

Healthcare Hamster Wheel.

For the last few years, doctor’s appointments have felt like an exercise in “checking the boxes.”  Yeah, I called and made an appointment with my endocrinologist.  Yeah, I had my A1C drawn and the result was either given to me that day or a week later by way of calling the clinic.  Sure, I get weighed and we download my Dexcom receiver and my pump settings and my meter.  Yep, let’s look at the blood sugar trends.

It’s impersonal.  An odd contrast to how intimate and personal type 1 diabetes is.   And a challenge to be motivated to make the effort to visit my endo when it feels like an exercise in checking boxes, kind of for both of us.  Nothing happens.  I don’t want anything dramatic to happen in terms of my health, but the cycle of going to the endo every four months or so feels like I’m a chronic disease hamster wheel.

I don’t know if it’s the frustration of the healthcare system or frustrations with the relentless monotony of diabetes, but I drag myself to the endo’s office, even now.  Usually, I schedule my OB/GYN appointments and my endo visits for the same day (making it one full day of doctor’s appointments in Boston instead of two), but the only appointment I actively care about is the OB/GYN.

The experiences are completely different.  My OB/GYN is in a relatively small office and I’ve never waited more than 15 minutes to be seen by the doctor or nurse.  The nurse takes my weight and blood pressure and we run through the information on chart, checking the baby’s heartbeat and talking about what’s happened since I last saw them, and what to expect for my next visit.  My OB comes in next and we may or may not do an ultrasound (depending on what week in the pregnancy I’m at).  Of course these visits are more interesting, right?  Pregnancy has a set of milestones that are reached quickly, and the whole process is complete in a set number of weeks.  It’s kind of unfair to compare OB visits to endo visits.  But during the visit with the nurse and then with the OB, they are looking at me.  They are making eye contact with me.  It seems like an insignificant detail, but it has the most significant impact.  In these visits, I feel like a human being, receiving care for the whole of me.

The warmest, most humanizing interaction at the endo’s office should not be the one where the woman I held the bathroom door open for thanked me and told me to have a happy Easter.

At the Joslin Clinic, I’m asked to arrive 20 minutes early for my appointment and I do, only I’m rarely seen on time.  (Last week, I had to go through the “Do you have insurance?” song and dance, despite the fact that I’ve been at the clinic at least three times this year alone and they’ve properly billed my insurance company.  Yet somehow my insurance information was missing and we spent ten minutes re-entering it. Waste of the receptionist’s time.  And mine.)

My last appointment was at 11.40 am.  I was in the waiting room at 11.20 and wasn’t called in for labs until 12.19.  I didn’t see the doctor until 12.35.  And as much as I respect my endo for all of her expertise and the care that she takes of her patients, I feel exactly like a cog in a machine during those visits. Few moments of actual discussion.  I spent several minutes last visit staring at the ceiling while she reviewed notes.

“Have you had recent weight gain?  Fatigue?  Have you been waking up to urinate in the middle of the night?”

I leaned in.  “I’m pregnant.  Yes, to all three.  Hi.”

Boxes are clicked on a computer screen instead of an actual discussion taking place, and that kills me because she’s a better doctor than that.  I received an A1C value that was the lowest I’ve had in my entire life, and yet it felt like another box checked instead of even the briefest of high five moments.  Shouldn’t victories be celebrated?  Shouldn’t interactions be warm?  This past visit, lab work I had drawn during the previous visit wasn’t in my file, frustrating us both. The whole botched system makes it difficult for my endo and I to even have an effective relationship.  I feel like she’s forced to work within the expectations that the healthcare system has placed on her, and I try to picture what her day must look like, with patient after patient being shuttled into her room, the demands on her time borderline bananas.

But then I remember that I don’t have to care about all the other patients.  My doctor does.  The perspective is useful, but I’m the one patient I care most about. Especially these days, since more than just my one body depends on my good health.  And lately, my experiences at Joslin are very disappointing. I’m spoiled rotten to be a patient at one of the best diabetes clinics in the world, aren’t I?  Longwood medical center care is worth the two hour drive from my home in Rhode Island, isn’t it?  I’m healthier because of those doctors, right?

I’m not sure anymore.  My health outcomes are a product of the access I have, the work I put in, and the expertise of my medical team.  Not one or the other.  I feel like I stick it out with Joslin in anticipation of the complications that may come, not as a method of preventing them.  I want a diabetes team that sees me as a whole patient, not just a pancreas or a set of eyeballs that need screening every few months.

I will see this pregnancy through at Joslin pregnancy clinic because it worked well the last time, and I want the best for my baby.  But I’m already researching local endocrinologist offices for after the baby is born, in effort to feel like a human patient interacting with a human doctor, in a system that recognizes people over paperwork.  I’m done with HCP visits feeling more frustrating than fruitful.  The time to take back my personal healthcare system is now.

Diabetes Privacy?

I was thinking about diabetes privacy this morning while I was poking through the archives, and came upon this post from Diabetes Blog Week last year.  (Here’s a full list of the contributions generated by that prompt.)

What do you share about your diabetes? And what is on your List of Absolutely NOT Sharing, diabetes-wise?  For me, I don’t share my A1Cs with any regularity. Because as thick as my skin is in some respects, it’s admittedly very thin in others.

But hell yes I’ll post a photo of a 24 hour no-hitter on my CGM graph, because I’m proud of that accomplishment and I want to document it for my own sake.  Sometimes I feel a little creepy about posting a photo like that because it does not illustrate a true “day in the diabetes life,” but it’s nice to freeze frame a moment that I feel proud of instead of looking at a graph of Ms and Ws and throwing up my hands* in frustration.

Diabetes doesn’t always play nice, and I don’t always have a calm head.  Sometimes I go full Veruca Salt-rage when the effort into diabetes management doesn’t produce a stable flat line but instead reduces my glucose meter to what feels like a random number generator.

Diabetes goals feel really personal to me.  Back in 2009, when I shared that my A1C wasn’t under 6.5% when I conceived my daughter, I received criticism for not having my numbers under “good control.”  What gets lost in translation is the why of some decisions, like I was aiming for a slightly higher A1C earned without a pile of debilitating low blood sugar events.  My medical team and I had reasons for making specific decisions, ones that I don’t feel the need to constantly have to defend.

So I remain quiet about a lot of diabetes specifics.  I’ll share what medications I’m taking and what devices I’m wearing, but where my high alarm is set at on my Dexcom receiver might not be publicly shared.  I have my A1C taken regularly, but I don’t post a running tally of it anywhere.  The specifics of my data – blood sugar or blood pressure or weight or CGM values – do not define me as a person and do not dictate my ability as an advocate.

But seeing diabetes in context, the real juggling act that takes place to take a crack at making proper sense of this disease, is what I appreciate most about our community.

To revisit a thought from years ago:  “diabetes isn’t a perfect math where you can just solve for X.  Usually, we’re solving for ‘why.‘ And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.”

 

 

* this phrase has always grossed me out – “throwing up my hands” – because it’s hard not to picture someone throwing up their hands, vomit-style.  

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