Community

Yesterday, I had the honor and pleasure of leading a discussion with Kerri at our local JDRF Expo entitled "Living Well with Type 1 Diabetes". The event was bustling with children and their families, many of whom I recognized from the outpatient clinic where I work. I expected it to be a fun and informative day -- one that would motivate or inspire those that were so new to the crazy game of diabetes. I wasn't counting on counting myself among them.
After our first session, several people approached the front of the room to ask questions or exchange pleasantries. I noticed an older, smiling woman waiting in the mix of them. She waited patiently while I finished up a conversation with a very nervous, newly-diagnosed family and then held out her hand and said, "I think I know who you are."
I shook her wrinkled hand, soft like paper, and smiled while I conducted a frantic brain-scan to locate the familiarity of her face or the name on her JDRF name tag, but it yielded zero results.
She smiled back and said with playful mystery, "You moved to Providence this past summer."
I nodded, figuring she was recalling that tidbit from the introduction of me provided prior to the presentation.
"I bet your husband also works at the local hospital," she continued.
I opened my mouth to speak but only shocked silence emerged. How did she know that?
"And I bet," she continued with a twinkle in her eye, "That you live on __ Street."
"How...who...how did you know that?" I stammered.
She smiled and paused for dramatic effect, "Nice to meet you! I am your neighbor!"

I was blown away! She went on to explain that she lived a few houses down, and that she had been so curious to see who had moved in. She heard through the grapevine that a young married couple had moved from Florida and they both worked at the hospital, and that one was training in Pediatric Endocrinology. She told me that she chose to sit in on the "Living Well with T1D" session and when I was introduced, she put two and two together!

I was amazed that our paths had not crossed on our street, but at a JDRF Expo! I asked her what her connection was to diabetes, and she straightened her stooped shoulders with pride before she said, "I have had Type 1 Diabetes for 60 years."
She blew me away again. Sixty years with diabetes. I couldn't even begin to fathom her life, her struggle, her perseverance.
"I'm not supposed to be here!" she quipped, and we both knew she wasn't talking about the JDRF event.

She shared old stories of the neighborhood and of her life with diabetes. It was touching and inspiring, and she filled me with the hope and motivation that I had been hoping to provide others that day. With misty eyes and a full heart, I shook her hand and promised that our paths would cross again.

She may not be the neighbor to borrow a cup of sugar from, but she sweetened my day in so many ways. Diabetes really does foster a beautiful community.

Guest Post: 17 Years

I met Rose this past year via the DOC. We clicked quickly -- not only because we both have Type 1, but because we are both knee-deep in medical training as well! Rose is almost half-way through medical school and is working out how diabetes shapes her and her medical experience, so her post fits here perfectly. If you'd also like to connect with her, she is @diabud on Twitter!

17 years ago tomorrow I was told that I could do anything I wanted to (except be a commercial airline pilot), but I was going to have to be more careful.  Because of this idea that I was not limited, I did not realize how much having diabetes has shaped me. I really had no idea when I applied to medical school, how much my personal experiences with health care shaped my ideas of medicine and how I want to practice.  The time around my diaversary is always a time of reflection and this year is no exception.

It was not until one of my medical school interviews that I was asked, “what is the hardest part of having diabetes?” that I began thinking about it.  I was completely stumped.  I had not thought about it before. I had spent so much time convincing people around me that it wasn’t a bit deal, that I never acknowledged that it was. It probably took me over a year to figure out the answer to the interviewer. Now I know my answer is that, no matter what I do and how things go, I’ve got to do it again.  I can have a really rough exhausting week, where nothing goes well, I feel crummy way to often and I do not know why.  But there is no vacation from diabetes.

For me the barriers to my health are not knowledge or access.  For that I am very grateful.  For me the barriers are time, mental space and an inconsistent lifestyle.  The barriers are daily management. I do not need help interpreting my A1C or handling a sick day.  I need help when I sleep through my alarm and need to rush out of the house so I can get parking, I skip testing (my blood sugar) because it doesn’t seem as important as getting to school faster.

The problem is, on those mornings where I am in a rush or distracted for some other reason, I want to trust the CGM and postpone testing.  Sometimes the CGM is very accurate and so it is easier to ignore my dry mouth and other symptoms of high blood sugar and get on with my day. The problem is it takes more than the 30 seconds to test.  It takes time to interpret the result, figure out an action plan, not judge, not get distracted by an inaccurate continuous glucose monitor (CGM) that looks perfect, but is off by 150points. This is the part of my health that I need more help with. The part where I realize that taking care of myself is part of my homework.  I need help figuring out how to fit D in to everything else.

I have never been that big on resolutions but with the boards coming up, it seems like some goals were in order. I have always had academic goals to keep me motivated. Last year I set my first ever A1C goal (which I met!).  This year I decided to set one complete goal that includes my school, home and diabetes lives.  In June I hope to be happily married, with a Step 1 score I like and my best A1C since high school.

I hope that considering my total life, and not just my academic achievement will help me with “work life balance” in a setting where that sometimes seems impossible. I also hope that my effort to figure out something that works for me will give me new ideas about how to help other people manage the daily practical challenges of their chronic illnesses and own health in the future.

Take Two New Parents and Call Me in the Morning

When I was in medical school and faced with the BIG DECISION (i.e. which field of medicine to choose) I was really torn. I was one of those nerds who loved (almost) every medical rotation. I skipped from one field to the next and fell in love each time. While rotating through OB/GYN, I thought I had found my home. Until I realized I only wanted to follow the baby after he/she was born, not the mother. I would hang out with the Pediatricians in the delivery room, examining the squirming, wet little tadpole of a baby and drag my feet back to the delivery table when the Obstetrician called me over to stitch/clean/put lady parts back together.
I loved the idea of Pediatrics because children are so innocent. Unlike adults, when children get sick it is usually not due to self-sabotage with illicit drugs and drinking and unprotected sex. I felt this would keep me motivated throughout my career and stave off the unfortunate onslaught of resentment and anger that doctors can often feel toward their patients.
However, I worried about choosing Pediatrics for life. I feared that I would miss that adult connection and conversation that I experienced in every other rotation. As I delved further into my exploration of Pediatrics, it became clear that even though the child is the primary patient, Pediatricians largely treat the parents. So it was cemented -- I could work with the babies and talk to the adults! My cake was had and eaten.
But it isn't always puppies and rainbows in Pediatrics. The most frustrating component for me is the part I thought I'd appreciate the most -- the parents. Namely, the bad parents. Throughout my residency training there were stand-out stories that still haunt me to this day: parents leaving their sick children in ERs, abandoning them in the Pediatric Intensive Care Unit when times got tough, abuse cases, neglect, Munchhausen syndrome by proxy, etc.
And now that I am in training in Pediatric Endocrine, I am especially pained by the less than stellar families of children with diabetes. There are parents that lie to my face about how often they give their small children insulin injections, parents that make up blood sugar numbers and submit them to us, parents that do not bother to find the time/way to bring their child in for important blood tests or appointments.
I was very well-practiced in lying to my family and my Endocrinologist as an adolescent -- it was calculated and intentional. But my parents were absolutely stricken with grief and anguish and worry. I was always so angry with them for "nagging" and not being able to "let it go." I am SO LUCKY to have parents that weren't willing to let it go. Because of my personal experience, I naively thought that it was going to be only the children/teens who tried to lie and deceive. It is appalling to witness that parents -- adults -- are doing this, too.
So in a perfect world, after writing prescriptions for insulin and test strips, I would be able to write a prescription for a new set of caring, honest, hard-working, well-intentioned parents. It's just too bad insurance companies would never be able to cover "priceless."

Giving Thanks

I was scheduled to work over the Thanksgiving holiday and the following weekend. Given that I couldn’t leave town, I invited my parents to join my husband and me for the weekend. I warned them that I might not be totally available – I would have to go into the hospital when we have patients admitted – and that things like movies and day trips would not be possible because I have to be available via pager 24 hours a day for patients and community physicians with questions.

Once my husband’s family caught word of this arrangement, the weekend snowballed from 4 people to 14 people. I wasn’t sure how I was going to handle cooking for that many and my work responsibilities. I figured it would likely be manageable, since previous working weekends involved only a few hours per day in the hospital. Our practice gets, on average, 5-10 new-onset Type 1 Diabetes cases per month. So how busy could I possibly be on Thanksgiving weekend?

Busier than I ever imagined. Two days before Thanksgiving, I admitted 2 new kids with Type 1. The day before, I admitted 3 more. Over Thanksgiving and the day after, 2 more came. Seven new-onsets in 4 days? That was a record for us. And that meant I was barely home at all.

These patients all had to be admitted for multiple days in order to receive diabetes education, which is always a feat to accomplish through the hysteria of emotions that comes with the diagnosis. By now, I have diagnosed many kids and their families and it is always challenging…but the fact that it occurred on or so close to Thanksgiving laid an extra shroud over the circumstances. How sad that a time set aside to be happy and thankful was now showered with anger, sadness, and doubt.

At least, it was for me. My heart broke for these families, with the youngest patient just barely two years old. I was angry that I couldn’t spend that time with MY family. I figured everyone I had admitted felt the same, until they proved me wrong. Several parents were incredibly grateful that the diagnosis was diabetes, and not an incurable form of cancer. Others with broken Thanksgiving plans had huge numbers of family members visit them in the hospital for a make-shift holiday meal. The families of the newly diagnosed kids came together to support each other, instantly bonded through their holiday hardship.

One newly diagnosed patient happened to have two friends with Type 1, and upon hearing of her diagnosis, they visited her with a beautiful, hand-made blanket that read “Diabetic Sisterhood”. This touching gift made me realize that diabetes provides a bond that goes beyond friendship – it is a sisterhood and a brotherhood that connects us and through it, we find strength and understanding.

The stories of that weekend helped me appreciate that there was a positive side to it all, even if it was just a silver sliver on a very black cloud. These families and their friends handled these children’s diagnoses with such grace, and exemplified the idea of Thanksgiving and family in a way I hadn’t thought possible under such circumstances.  

I went home to a beautiful Thanksgiving meal that my parents cooked without me, in a home brimming with family. My Thanksgiving was full of hefty boluses of insulin and of love, and it was one I won’t soon forget. 

Preach It

They say doctors make the worst patients, and it’s often true. Sometimes it’s because we think we know it all, and other times it’s because we may know a lot but fail to utilize it in our own lives.

A large reason why I was able to a 180 with my own diabetes was because I didn’t want to be “that doctor” that asked so much of her patients without doing it herself.  Now that I’ve been seeing and treating patients with diabetes for a few months now, I’m appreciating that there is so much power in being the example. In these last three months, I have had several heart-to-heart conversations with wayward Type 1 teenagers. The ones that I used to be, the ones barely keeping their heads above a hyperglycemic sea of hopelessness and self-doubt.

I hate that I took such horrible care of myself for so long, but I love that I can now look them straight in the eye and say, “Hey, I get what’s going through your head right now. I know you stressed all day (or longer) about this appointment. I know you’re dreading what your A1C is going to be and what your parent’s reaction to it will mean. I know that you don’t do readings because you don’t want to face the fact that it’s going to be a sky-high number.  I know you snack and don’t bolus because it’s incredibly annoying. I get that this diabetes thing absolutely SUCKS and that paying less attention to it is just EASIER.”

But then I get to follow it up with my little revelation: Even though treating it is more work and such an amazing pain in the ass, the freedom and pride and weightlessness that comes with giving it attention is SO MUCH BETTER than the carrying the guilt of ignoring it.

And when these teens give me the side-eye of doubt, I can re-assure them that I’m living proof of this. And then, if they’re interested, I can share the little ways and steps and changes that I tried, which ones failed and which ones helped. And how it might not work for them but we’ll figure it out together. And that it won’t be a great big success story all at once, but that little changes add up to big changes over time.

These conversations are sometimes successful in motivating these patients, but they’re always successful in motivating me. For every one thing I teach a patient, I learn 10 more.  So I’ll continue to open up to the ones that are ready to hear me admit my failures, so they can hopefully share in my successes.

Practicing what you preach is an art form, and one that I’ll be perfecting for years and years. I just have to keep reminding myself that there’s a fine line between preaching and being preachy :)

Broken

[Not to dwell on diabetes-related sadness, but I haven't been able to shake this feeling and must write about it. I don't know how I'll ever be able to handle these experiences without feeling so much, though I'm not sure that I even want to have that ability.]

I was only a week into my training to become a Pediatric Endocrinologist when the call came from the children's emergency room.
We have an 8 year old little girl with no past medical history who presents with polyuria, polydipsia, weight loss, and an elevated blood sugar.
My heart dropped anchor into my stomach. The diagnosis is irrefutable, but I found myself making excuses for her. Maybe her blood sugar is elevated because she just had a whole carton of juice right before they tested. Maybe this is a temporary, false reaction.
But I knew this wasn't true. I whispered these impossible excuses over and over, and to protect whom? Her? Her family? Myself?
I walked from my office to the emergency room, each step becoming harder. I could feel my eyes welling up. Why? This isn't a death sentence. This is manageable. I've had to do it every day since I was her age, and I'm okay. Right?
And of course, she was the most adorable little girl. Her high blood sugar had been caught early thanks to a family member with diabetes who recognized the symptoms and tested her with a home meter. Her mother and her grandfather were sitting with her on the stark ER stretcher with faces equally stark, though she was still shrouded in naivety and ignorance and thus happy, cheerful.

But her family knew what I was going to tell them before the words could come out of my mouth.
And this relieved me.
I thought the blow of the words would be lessened by their knowledge of the disease. But as I laid out the facts of the matter as gingerly as I knew how, I realized I was wrong.  How could any parent's reaction to this news ever be buffered by anything at all?
I could feel the world shifting under this girl's mother. Her face was a million emotions that swirled into blank stupor.  It was as if her brain, to protect her body from this immense trauma, had simply gone unconscious. I couldn't stop myself from wondering what was going through her head; were they the same thoughts I was having? Was she starting to mourn the end of her daughter's innocent childhood, like I was? Did she even know enough about what was to come to realize the severity of this diagnosis? The impact this will have on every hour of every day, for the rest of her life?

As physicians, we cannot mention these things right off the bat, as it does more harm than good. You present the most simple picture, and the rest unravels over the ensuing hours, days, months, years. It's far too overwhelming in the beginning and would not be understood, anyway.

But I know. I know every tear over needles and lancets, every fit over not wanting to count every damn carbohydrate anymore, every dreaded appointment, every fear. And even though I'm convinced that this disease has shaped me into a better person than I ever would have become otherwise, not a day goes by that I don't wish things could have been different. I know what this family is about to go through and it makes me feel like I'm free-falling into nothing. I can help with their insulin doses and their meal planning, but I cannot cure the disease or the emotions that come barreling with it.

I finish explaining the very basics, and ask them if they have any questions, though I know they are too stunned to ask any right now. But the little girl says,
"Can we get someone to fix this TV? It's broken, and I really want it fixed!"

Yes. And we'll add your pancreas, your mother's heart, and my strength to that list of items that are broken and need fixing.

It's Complicated

I have been non-compliant -- or non-adherent, if you so choose -- for many years. Not with every single aspect of diabetes, but overall.

Yet each of those years I faithfully attended my Endocrine and Ophthalmology appointments. I nervously gave blood and urine. I anxiously sat in front of retina scanners with dilated pupils.

I sweated and fretted with each trip, worried that the day had finally come for me to pay for my neglect in the form of protein or microaneurysms.

Miraculously I walked away with a clean bill of health each and every time. And each time I promised myself that I would right my wrongs before my luck ran out.

But I found myself sweating and fretting the week before major appointments again and again. It took me a long time to get around to righting my wrongs. But I got help and I did it.  It's been about 7 months or so that I've been a WORLD more compliant with my diabetes than I have been since the days when my parents were doing my night-time checks for me. In this time, I've felt empowered. I have been feeling in control of myself and my future. Confident. Optimistic. In the clear.

I woke up to get ready for my annual retina exam feeling fantastic despite never, ever being a morning person. Protein shake in hand, I waltzed out the door and hopped into my car. The radio magically played all of my favorite songs while the sun kissed my skin. It was going to be a great day.

And then the haze came, but not from the distorting eye drops or the searing lights in the exam. My doctor rolled his chair away from the machine, looked at me and said, "You have a tiny bit of disease."

I blinked my once-perfect eyes and the tears instantly streamed down my face.
"Some small hemorrhages."
Unsteady. Dizzy.
"Let's follow up in six months instead of one year."
Suddenly swimming in questions and concern. Drowning.

The irony of it all hit me fast and hard and knocked me out for the majority of the day. How cruel to finally, FINALLY feel an ounce of pride and hope for this disease and then get slapped with the news that I had expected every time but this one. I am angry at diabetes, but I am more angry at myself for hiding from it for so long.

My regret is dark, desperate and clawing. I was getting so good at looking forward, but today I cannot help but close my eyes and think sadly on the past.