Share and Don't Share - DBlog Week

Hurray for DBlog Week! Here's today's prompt:
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

This topic is especially interesting to me, considering that I am a Pediatric Endocrinologist in training and that my Endocrinologist also happens to have Type 1. What are the odds?
That fact that we are both in medicine and both have the disease we treat makes for a peculiar clinic visit. On one hand, it's great because he completely understands the struggle. Not just what it is like to live with Type 1, but what it is like to live with the disease while juggling an insane medical training schedule. I enjoy discussing the differences between how my office runs compared to his, and the colleagues we have in common. When it comes to my diabetes, he talks to me professionally in terminology that is not watered down. I appreciate that.
With other providers, I worried deeply that I would be judged for numbers and A1C's that would not meet the expectation one would have for a physician with diabetes. With him, I can be completely honest about how I know that carb-heavy meals screw up by numbers but that I choose to eat them anyway, and that I still really, really suck at guesstimating the carb count in restaurant food. There really isn't anything I feel I cannot share. I feel much more at ease with this doctor, and although I still get the traditional pre-checkup palpitations, I find that I am harder on myself than he is on me. That wasn't always the case with previous Endos.
On the other hand, I wonder if this unique situation makes things too lax. He is definitely available if I were to need him, but he has verbalized that he trusts I can manage changes on my own. I worry that he puts too much trust in my judgement and my decisions because I am an Endocrinologist as well. The freedom is flattering and quite nice, but I wonder if I'd be better off if he insisted on keeping a closer eye on things himself.
If he was reading this, I'd want him to know that I love the candor and professional courtesy, but to not forget that I am in the patient role during my appointment, not the doctor role. But all things told, I feel incredibly lucky to have such an amazing Endo on my side :)

Click for the Share and Don’t Share - Monday 5/13 Link List.

Journeys

20 years ago today I was over 2,000 miles away in Mexico City and my parents were unable to wake me up from a nap. My 9 year old self was rushed into the hospital and I was discharged as a little adult, forced to mature overnight for Type 1 Diabetes.
I have never commemorated the anniversary of my diagnosis. Diabetes, or conquering another year with it, did not cross my mind as cause for celebration. It was just something I lived with and, for many years, ignored. 
Oddly, I find myself insisting that my patients remember and celebrate their diagnosis date ever since I began my Pediatric Endocrinology training. Seeing the struggle from the outside has given me stronger convictions about focusing on the positive.
One of my most favorite patients in diabetes clinic is a middle-school aged girl who was diagnosed almost one year ago. Her journey with Type 1 has been particularly grueling, as it is laced with anxiety and fear that stems from seeking perfection from an imperfect disease. She has avoided social activities and outings because she can only assure tight glucose ranges in the controlled environment at home.
Recently, she told me her family had plans to go on spring vacation to a beach across the country. She was so nervous about the thought of traveling and eating out at restaurants every night that she refused to go on the trip, and her family was so torn over her anxiety that they canceled it.
In a heart to heart conversation, I told her that I most definitely want her to learn how to do things like calculate carbohydrate ratios and inject insulin by herself, but that if she learns only one thing from me, it is that she cannot let diabetes hold her back from living her life to its fullest.  She promised me she would try.
Despite our exchange, I was sadly convinced she would not take that beach trip or any other for a long, long time. Work kept me busy for the weeks that followed, and so I was surprised to get a call from the clinic secretary announcing that my special patient was there to see me.
I quickly walked over to the clinic. I was so curious to know what prompted her visit, as she was not due for an appointment for 2 more months. She was waiting for me outside of the clinic doors with something hiding behind her back. With a beaming smile, she handed me a tote bag emblazoned with the name of the beach she had spent the last week visiting!  She excitedly told me to look inside, and I pulled out a beautiful photo album.
It was full of pictures from their beach vacation, along with hand-written captions. One depicted her on the beach, treating low blood sugars with juice and crackers. In another, she was swimming in the ocean, because “exercise helps keep blood sugars stable." The most touching picture of all showed her with an a bowl of ice cream the size of her head, with the caption reading, “My first time eating out since diabetes.”
Standing there next to me, she was pride personified. With misty eyes and a full heart, I hugged her and the gift that so beautifully represents the journey on which we Type 1’s are forced to embark.
So in honor of her, I will proudly acknowledge the anniversary of my diagnosis this year and each year to come. My 20^th Diaversary is today, her first is tomorrow, and we both have so much to celebrate. 

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 :)