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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. 

Guest Post: Taking Steps Towards Better.

Emotional health can influence someone’s physical health, and after decades with type 1 diabetes, I know that my health is best when I’m being cared for as a person, with mental health categorized as high a priority as my A1C or standard deviation of blood sugar.  How you feel about the disease you live with every day matters.

Today, my favorite texting friend (known formally in our house as The Briley) is taking over SUM to talk about the steps she is taking to overcome diabetes burnout and find  some peace in the daily demands of her disease.  You can read more from Briley on her blog InDpendence, or on Twitter as @4thandlife.  

  *   *   *

When I saw my new endocrinologist, Dr. A., she was better than I ever could’ve imagined. She helped me with my problems, and handed me a box of tissues as tears rolled down my face. At the end of our first appointment she asked if I wanted to talk to someone about my burnout. There were so many thoughts flying through my mind convincing me that I didn’t need to meet a mental health professional.But then the memory of being pulled out of a bathtub by my mother after I collapsed from a low BG rushed through my mind and my mental health advocate friend popped into my brain.

I said yes.

I didn’t know if it was for me. I didn’t want to go. But I didn’t want to be scared of my body anymore. I didn’t feel as comfortable with her as I did Dr. A. But it was okay.

There were questions that I was okay with her asking: “How low were you when you passed out?” And questions I tried not to answer: “Are you okay being single?” When she asked if I had a CGM, I had to explain how friends have all given me spare parts, but that I’m interested in getting the G4 with my new insurance. She proclaimed how excited she is for my friends and family to be up to date with my BGs. I didn’t have the heart to tell her I just want to see it on my phone.

It’s funny, when I leave my endo (past & present), I feel better because I feel like I have been hugged and comforted. I never felt comforted when I left her office. But I did feel better. Self-induced fear is a powerfully negative motivator. She believes that the fear of lows is where I sit compared to complete burnout. I have a hard time differentiating the two since whichever the reason is, I eat sugar earlier and bolus later. I was uncomfortable when she suggested raising my target BG (not being my endocrinologist or nurse), but when I saw Dr. A. again, she was very excited to have learned about my session and the why’s behind the change in my care.

I will be going back. But I haven’t yet. Even though I should. See, my co-pays are high enough that being at the office 5x in one month was way too much. She still scheduled me too early than what I can afford, so I cancelled that appointment. (Yes, I told her my very valid reasons for not going as frequently as she prescribes.) When I left her office, I was very unsure about going back since she ignored my information about being able to afford her. However, I feel better after hearing Dr. A. praise her work with me.

Am I out of burnout?

No way.

Am I making healthier choices and focusing on my diabetes in a healthier way?

You bet.

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.

Guest Post: Making Connections.

Stephen Shaul is one of the most insightful – and kindest – people I’ve come across in the last few years, and I really respect his thoughts on all-things diabetes.  (Links to his blog and podcast are in the bio below.)  Today, while I’m en route to 10,000 doctor’s appointments, Stephen is taking over SUM to talk about the simplicity, and the power, of making connections.

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“Excuse me, is that a phone there on your belt?”

“No, it’s my insulin pump.”

With just one question and a simple, short answer in a doctor’s office waiting room, a conversation was started between me and a new member of the diabetes community. I put down the publication I was browsing and took a seat next to him.

The man was newly diagnosed, type 2, and had not yet even heard of an insulin pump. He had been diagnosed about ten days earlier by his primary care doctor. Initially, he resisted the idea of going to the hospital. In that moment, he wasn’t sure how to proceed. Everything was so new and so much, he told me. He was there for a follow up appointment. He looked scared. Really scared.

In the few moments we shared together, he confessed to not knowing much about diabetes, but he “must be bad”, because his blood glucose number at diagnosis was unusually high. I assured him that if his number at diagnosis wasn’t unusually high, he wouldn’t have diabetes, and while diabetes is bad, he as a person is not.

I told him a couple of things that I tell many people with diabetes: that the hardest thing about living with it is the fact that it’s always with you and you can’t walk away from it; and that BG checks and A1c results are just benchmarks… something to base treatment on, but not something to assign self-worth to. I finished up by telling him that there are many resources online to go to for information and support, and that he is not alone in living with a condition that affects 29 million people in the USA and 415 million worldwide.

You know what? Five years ago, I couldn’t have had that conversation. Five years ago, I didn’t know much about diabetes, I didn’t know much about the online community, and I certainly didn’t know how to talk about it. What’s changed since then?

Well … I found people online telling their stories and engaging with others whenever they had the chance. They made me want to do the same thing. They made me want to help someone newly diagnosed not feel so alone. I actually learned what to say and how to say it from others who have been in similar situations before. I learned the importance of making connections and opening up a brave, new world to someone who didn’t even know that world existed before they met me.

I also remember my diagnosis, how initially I thought I had everything together, and then walked helplessly through life as one awful A1c piled up after another. Let’s face it: if you’ve never been exposed to diabetes, it’s easy to be overwhelmed by the flood of new information (and misinformation) that comes with a new diagnosis. How I wish I had someone then to help me cut through the confusion.

As I was called back to see the doctor, we shook hands, I wished him all the best, and I asked him to call me if he had any additional questions. At the end of our conversation, he seemed more at ease. At least I hope he was. I don’t know.

Diabetes has a way of making us feel isolated, especially in the beginning, when we need reassurance the most. Making connections that support, empower, and foster communications between those living with and affected by diabetes can often be as critical to our health as the insulin and other drugs we take. It only took a minute to welcome a new member to the community. Here’s hoping my new friend finds survival along with comfort, and happiness instead of fear. And though I really hope we could have no more new diagnoses, here’s hoping he can find a way to help if he crosses paths with a new diagnosis in the future.


Stephen has been living with Type 1 diabetes since 1991. Since April 2012, he has been writer of the diabetes blog Happy Medium, and since then, has covered a number of diabetes-related subjects, including participation in clinical trials, living a week gluten free as if he were newly diagnosed with celiac disease, and the complex relationship between patients, corporate interests, and government entities.

Since July 2015, he has been host of the Diabetes By The Numbers podcast, where he interviews newsmakers in the diabetes community. He advocates for people with diabetes everywhere through support of legislation designed to reduce the burden and ensure safety of people living with diabetes, and through encouraging others with the phrase “I support you… no conditions.”

 

Phone Call Shuffle.

The appointment scheduling protocol sheet was long, but had all the right information and phone numbers for the different hospitals and specialists.  The hospitals are all part of the same group, so my information should be on file, in theory.  Should be easy enough to jump right in and start making phone calls.

Lots of shoulds.

“Hi, I’m a patient at [Hospital Name].  I’m calling to schedule a [routine pregnancy screening for patients with diabetes].”

“Okay.  Date of birth?”

Given.

“We need to have an order from your doctor’s office.  Please have them fax one over to us.”

“My records aren’t in the system?”

“They are, but the order for that specific test is not.”

“Okay.  I’ll call my OB/GYN and ask their office to update the records to reflect the order.  Thanks.”

Hang up, call the next number to make the next routine appointment.

“Hi, I’m a patient at [Hospital Name].  I’m calling to schedule a [routine pregnancy screening for patients with diabetes].”

“Okay.  Your  hospital ID number?”

Given.

“We need your records sent over before we can authorize the test.”

Mildly frustrated but trying not to let hormones win.  “The protocol sheet I was given by my doctor said that all I had to do was call to schedule the appointment.”

“Yes, but we need your records, specifically your last ultrasound.”

“No problem. I’ll call over to the OB/GYN now and then call you back.  Thanks.”

Hang up.  Call high-risk maternal fetal medicine doctor’s office.

“Hi, I’m a patient with [doctor’s name].”  Give ID details.  “I tried to call and schedule a [routine pregnancy screenings for patients with diabetes] at [other hospitals] but they didn’t have my records or the lab orders.  Would it be possible to have those sent over so I can schedule those appointment?”

“Of course.  We need to have you fax over a signed authorization form to our office, stating that we can send your records over to their office.”

Laughing by this point.  “A fax?  I don’t have access to a fax machine.  Welcome to my 21st century medical problems.  Can I email it?  Or, can I just sign that form when I come in for my appointment this week?”

“Yes, that works.  And then I can send it over to them and you can call and make that appointment.”

“Thanks for your help.  See you tomorrow.”

Spent ten minutes making phone calls and essentially accomplished nothing.  Healthcare (in)efficiency for the win.

 

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