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Posts from the ‘Psychosocial Support’ Category

Diabetes Connections, with Stacey Simms.

There’s a new podcast on the … block?  On the radio?  The Internet.  It’s definitely on the Internet.  And it’s brought to our community by one of our own – Stacey Simms, mom of a child with type 1 diabetes and a professional broadcast journalist.  In her new podcast, Diabetes Connections, Stacey is bringing those two passions together to inform and inspire the diabetes community through discussion. 

Today she’s offering insight on what brought her to the DOC, what inspired the podcast, and what’s to come for Diabetes Connections.  [And if you'd like to check out the latest episode of her podcast, it features me!]

Kerri:  Stacey, you’ve been involved in the diabetes community for several years now. Can you tell me a little bit about your personal connection to diabetes?

Stacey Simms:  My son was diagnosed with type 1 in 2006, just before he turned two. It was a shock, of course, and our lives turned upside down for a while. Luckily, I did know a few people through our local JDRF chapter. The radio station where I worked was the big sponsor for their golf tournament every year, so I had actually interviewed families living with diabetes and I had people to call when we got home from the hospital.

I started blogging in 2007 because my listeners were asking questions and, while I could have talked about diabetes all day long, Charlotte’s Morning News wasn’t that kind of show! The blog became a very healthy and necessary outlet for me. It also led me to the incredibly helpful diabetes online community, for which I’ll always be grateful.

Kerri:  And how about your connection to broadcast journalism?

Stacey Simms:  I’ve been in broadcasting since before I graduated from college, working weekends at an all-news radio station. I went on to a career as a TV anchor and reporter and hosted a morning radio news show for a decade. We were the News-Weather-Traffic station (you have one in your town) and did several interviews every morning on a variety of topics. It was always fun and interesting but it was exhausting. I got really tired of getting up at 3am to do morning drive radio while raising two little kids. There’s no describing how difficult that shift really is – but it’s absolutely the best time to be on the radio. I made a tough decision to move on and I left full time broadcasting. No regrets. It was definitely the right decision.

Kerri:  What made a podcast your medium of choice, and what makes your podcast different from the other health-related podcasts out there?

Stacey Simms:  I love to listen to podcasts because it’s exactly what I’m interested in, exactly when and where I want to listen.
Radio (and podcasting) is a very intimate medium. It’s just you and the listener, it should feel very one to one.  You almost develop a relationship with the best radio hosts; that host should be someone you feel you know, your friend you look forward to hearing each show. Even during an interview, the person who’s hosting is hopefully asking the questions you want to ask.
I love that about radio and about podcasting.

My podcast is different because of my broadcast experience. Throughout my career, my beat was always health and medical reporting. Those years of experience have given me a good mix of skepticism, hope and interpreting medical jargon (I speak doctor).

I listen to several diabetes-themed podcasts and they’re fun and conversational, but I find myself always wanting to hear more or to jump in with my own questions.

While I hope many people find this podcast entertaining and informative, I’m really doing it so I can have conversations with people I find interesting and learn about topics that I care about. I’m making a podcast I can’t wait to listen to. Sounds a little selfish when I put it that way!

Kerri:  What can people expect from Diabetes Connections?

Stacey Simms:  An interesting, engaging conversation each week. You’re driving to work or doing chores around the house. Let me keep you company for a half hour. You’ll learn something about a prominent person or issue in the diabetes community and hear about how other “ordinary” people are managing.

Diabetes can be a very isolating condition and connections empower us in a way that is a vital compliment to medical care.
My first guest, Christal Marchand Aprigliano, talked about the power of “me too.” I’m going to steal that for a moment. I want people to listen to Diabetes Connections and benefit from the power of “me too.”

Kerri:  That’s awesome.  And thank you for having me as a guest this week!  What other shows do you have on tap, and how can people sign up to be featured?

Stacey Simms:  I loved talking to you! As I said in the podcast, Six Until Me was one of the first blogs I found after my son was diagnosed and it helped me realize that while life would be different, it would still be great. That was a wonderful gift, so thank you!

Next week, I’ll be talking to Sierra Sandison who touched off the #showmeyourpump campaign last year by wearing hers in the Miss America pageant.  She’s just about ready to hand over her Miss Idaho crown. We’ll find out what’s next for her.
I’m also speaking with Laura Billetdeaux from CWD Friends for Life, the annual conference that’s coming up. You’ll find out how a question over a message board sparked the biggest diabetes family conference in the world.. and we’ll talk about what’s on tap for this year at FFL.

I also have guests coming up to talk about diabetes camp and about raising teens with diabetes.  Best way to reach me right now is through social media and at www.diabetes-connections.com.  I’m already getting requests and I would love to find out what more people would like to hear. Please let me know!

Kerri:  Thanks for taking the time to chat with me today, Stacey!  I’m excited to bring your podcast into my rotation on trains, planes, and automobiles.

Diabetes Connections is available where ever you get your podcasts.  You can find it on iTunes here (and Stacey would love to have you give her a review).  You can also find Stacey on Twitter @staceysimms, on Facebook, and on her blog.  The official podcast website is still under construction, but when it’s up and running in full, you’ll find it at Diabetes-Connections.com.  Good luck with this new adventure, Stacey!

 

Balancing Diabetes: Siblings.

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 “Siblings,” which describes what diabetes looks like from the perspective of my brother and sister, and also from some siblings of people in the DOC.  Thanks to Spry and the diabetes community as a whole for supporting this book!

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I don’t have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households.  Once the vials of insulin moved into our refrigerator’s butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of a half gram of actual nutrients and then a whole pile of crap).  Our eating patterns changed as a family and Diet Pepsi and food scales replaced the snack cupboard of days gone by.  My mother hid the ice cream sandwiches in the hollowed-out box of broccoli in the freezer.  She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet.  She was a food-hoarding squirrel, with delicious treats in every obscure corner.

I viewed this as a clever approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy.  But for my brother and sister, both with perfectly capable pancreases, the lifestyle change wasn’t necessary.  Didn’t they get to have snacks, still?  (My brother confirmed that he, too, was searching for the “good snacks” after my diagnosis.  “I had to look in the freezer for cookies and above the broom closet for the special sugary cereals,” he said.)

What I failed to realize then is that my diabetes didn’t have to be my siblings’ diabetes.  There was so much about their lives as the siblings of a child with diabetes that I couldn’t even wrap my head around.  I didn’t know what it was like to have your sister come home from the hospital, now playing host to something no one could see, and garner so much attention (for better or for worse).  I’ve talked to some siblings of kids with diabetes and heard about the guilt.  “I felt bad for wishing I was sick, too, because I was jealous of the attention.”  Or the worry.  “Was I going to get diabetes, too?”  Or the anger.  “I am sick of her diabetes being the sole focus of our family.”  Or, just plain fear.  “Will diabetes hurt my sibling?”

My brother, Darrell, was thirteen when I was diagnosed with diabetes, and old enough to remember some of the details that I can’t recall.  “I remember Dr. L [our pediatrician] coming out of his office, the one with the patterned wallpaper that had giraffes and monkeys on it, and he was holding a little plastic cup with what was your urine sample.  We had both gone for check-ups on the same day.  He told Mom that he wanted to do some additional testing for you, so Mom dropped me off at soccer practice and proceeded to take you somewhere for tests.

“I remember being picked up from soccer practice and leaning through the open passenger side window. You were in the back, dressed in a little white knit pom-pom hat and looking rather dour. You looked very small to me.  I believe it was there that Mom told me what the verdict was, before I even got into the car. Seeing what type of memory it has indelibly put on my mind, whether it’s truly accurate or embellished by the passing of time, I knew it was something major. I knew it was a ‘difficult time,’ and it burned right in.”

My little sister, Courtney, was only five when I was diagnosed, so as far as she is concerned, I’ve always had diabetes.  “I was so little when I found out that you were diagnosed with diabetes.  All I remember is Mom and Dad telling me that you were sick.  I didn’t know what diabetes was until I was a little bit older, and could understand better.  At that time, they told me that you had to test your blood sugar and then get a shot.  I thought it was an allergy shot,” she said, remembering her own experiences as a kid with severe allergies.  “But Mom said it different, that you were injecting a special medicine called ‘insulin.’”

Laura Watson was in fifth grade when her sister, Jacquie, was diagnosed.  I was in the fifth grade; Jacquie was in the seventh. It was fall. My mom was encouraging Jacquie to eat as much as possible because of recent and dramatic weight loss. I remember standing in the pharmacy section of the local grocery store with my mom to pick up ketone strips. Shortly thereafter, Jacquie was just kind of gone and I got updates through my parents. A lot of what I remember about those updates involved oranges and syringes and reassurances that Jacquie was going to be okay.  That year in school I had all the same teachers Jacquie had two years before. It was their reaction to the news of the diagnosis that made me realize what a big deal it was.”

My brother did realize that diabetes was something “big,” but at the same time, it wasn’t a topic of much discussion.  “We have only talked about things that impacted you negatively, like when there was a setback or an issue. I don’t believe we’ve ever had a long, positive conversation, where you got a new pump or you had a good checkup.”

Like Darrell, Laura’s memories of growing up alongside a sibling with diabetes weren’t rooted in deep discussions and serious chats about disease management and its influence. “I don’t remember it being an intrusive force, but I don’t think I filed it under ’no big deal’ either. Rather, it always seemed to be something that Jacquie had under control, even if it meant a lot of work to keep it under control. I suppose I always assumed that my big sister knew what she was doing no matter what she was doing. Whether it was a decision to perm her hair, tight roll her jeans, or give herself an injection where and when, I applied the ‘big sister’ rule.”

“I surely remember Jacquie having lows and highs and in some cases being exhausted the next day from a middle-of-the-night low,” added Laura, recalling these moments.   ”If there were cereal bowls and/or almost-empty Coke cans around when I got up in the morning, I could usually guess that Jacquie would be sleeping in.”

Darrell also had memories of my hypoglycemic aftermath, with only one, clear memory of watching me in the midst of a low.  “There were moments of fear, as I once was with you during a low and you told me that you saw car headlights coming out of your hands if you held them up to your face, like cars racing towards you on a dark highway. I had nothing to compare it to, so that was frightening.”

Funny thing is, I remember that symptom.  When I was a little kid, my hypo experiences were very heady and confusing.  I distinctly remember many lows where I’d see things, borderline hallucinations, and my fear of them was all-consuming.  One time, while our babysitter Kim was watching my brother, sister, and I, I remember sitting in the hallway with my back against the wall, screaming about those cars coming out of my hands.  I remember the headlights zooming towards me, and a panicky feeling that I would be hit by these cars.  It was irrational, but my brain was shifting the glucose reserves around, preserving the parts of my brain that were necessary for autonomic processes, such as breathing and the beating of my heart.  Rationale fell by the wayside as my body tried to make sense without glucose in my cells.

As bizarre as this feeling was to experience, I at least had an idea of when it was starting, and felt the relief when it began to end.  My brother and sister were left just to watch and wonder what the hell was going on.

“I think the strongest impact that diabetes has had on you is that you became very aware of your own mortality at a very, very early age. Here was something that had, and always will have, the potential of taking years from you, or your life itself if it’s not managed properly.  It’s an everyday cumulative tightrope,” said Darrell, when asked about how diabetes has affected our relationship.  ”Some people would take that and internalize it, where you took it and swung the momentum into a force of motivation.  Your siblings know how you think, being the closest thing to a ‘twin,’ and even though I know you are absolutely terrified at times, you’ll still face it head on.”

I also spoke with Jackie Singer, the twin sister of Mollie Singer, who lives with type 1 diabetes.  “When Mollie was diagnosed, it was as if I was diagnosed, and our whole family was diagnosed,” she said.  “We really did live, breathe, and eat as a family and that meant doing what Mollie could do when Mollie could do it. I never really worried about becoming diabetic, but there were many times when I wish I was, because then she wouldn’t have to go through what she had to go through by herself.

“Mollie and I were inseparable before she was diagnosed and we are the same way now, if not closer. When we were in school, we had all the same classes from kindergarten through college.  I was as knowledgeable as her about diabetes, so I was always by her side in case of an emergency. When we were little, we always shared a bedroom and there were so many nights I would stay awake to make sure she was okay.  It’s terrifying to think that one morning I would wake up and she wouldn’t.  I became her protector, always aware of changes in her breathing or sleeping, setting alarms to remind her to test her blood sugar at the appropriate time, grabbing juice and a snack for her when she couldn’t, and on two occasions before we were ten years old, setting up the glucagon kit and calling 911 while our Mom held Mollie in her arms after she experienced an episode with dangerously low blood sugar levels.” 

Diabetes is a disease that affects the whole family.  It’s not just the person who is receiving the injections or pump infusion sets or finger pricks who’s carrying the full weight of diabetes.  I don’t know if my brother and sister understood what diabetes meant when I was first diagnosed, and if any of us understood just how big the words “without a cure’ really were.   But I know that we learned about diabetes as a family, and dealt with it the same way.

There is that dance that occurs between my brother and sister and me, that weird discussion that never really takes place where siblings acknowledge that there is something serious in play, but no one wants to talk about it so plainly.  We didn’t sit around the breakfast table and run commentary on the state of my fasting blood sugars, but diabetes was always present and always somewhere on the table, literally and figuratively.  If it wasn’t my mother telling me to eat all of my breakfast because I already took insulin for it, it was her reminding me to grab my lunch bag.

There was one time—only once—that I felt angry.  Jealous of my healthy brother and sister and the fact that their days didn’t start and end with needles.  I was about fourteen years old and pouring out my angst into a fabric-bound journal, scribbling in it madly with a ball point pen.

They don’t have to worry.  I’m jealous of that.  But I’m worried.  I’m worried about what my body will be like in like two decades, after all that time with diabetes.”

I thought I was alone in that worry.   It wasn’t until I was deeply immersed in sharing my diabetes life with the Internet that I truly grasped how much my older brother watched and understood.

In May 2005, my first evidence of diabetic eye disease started to show in the form of cotton wool spots.  Noticed during my yearly dilated eye exam, the doctor saw a few spots of swelling of the surface layer of the retina, when a part of the eye isn’t provided with enough oxygen due to a damaged blood vessel.  On the photos of my retina, it looked like puffy spider webs had taken up residence in my eyes.

Trying to acknowledge and understand this first diabetes-related complication, I wrote a blog post about the experience of “finding out,” and explained this new situation as best I could, while trying to remain positive.  Folks who were reading my blog at the time left very kind, supportive comments and their words soothed me, reminding me that this wasn’t “the beginning.”  But it was the comment my brother left that cracked the concept of complications wide open for me, assuring me that there was life to be found after this diagnosis, too.  And I’d better damn well seize it.

He wrote:  “When we were little in stature, the snow would cover our backyard like a puffy comforter. We would go out into the backyard to build snow forts, to go sledding, and to eat a majority of it.  We also had this thing where we would try to go as long as possible without damaging the ‘virgin’ snow, keeping to our trails and cordoned off zones, in an attempt to stave off ruin. We were a prepubescent SnowPeace, minus the trademark galleon.  It would only last for so long, before the snow would melt, no matter how hard we tried to preserve it with the no-walk, no-eat zones, but we knew there’d be more snow to cover up the previous damage we had done.  You’ve done so well, for so very long. The way you think and operate, I see a snowscape for you for a very long time … just don’t forget to eat some snow once in a while.”

Diabetes isn’t just a balancing act for the people living with it, but the people living near it and caring for people with it.  I never knew that my brother noticed what I did to take care of my diabetes, and I hadn’t thought ahead to how he would be impacted by any future issues.  He wasn’t feeling the highs and lows, but he saw them and they left an imprint on him, too.  Now that my brother has two children of his own, he’s mentioned that diabetes is on his radar as a parent, not just as a sibling.  “I can’t help but think that it was the simple roll of the genetic dice.  I keep tabs on my children’s weight and how many ounces of fluids they drink as opposed to how often they go to the bathroom,” he admitted, when I asked him about watching my niece and nephew for possible symptoms.

My sister agreed, confirming that my diabetes was an ever-present force, but something that lived on the peripheral of our lives.  “Diabetes didn’t really affect my childhood.  There were food changes that Darrell and I had to adapt to, with a lot of the sugary foods we used to eat being cut out.  Lucky Charms cereal was replaced by Cheerios.  Regular lemonade was replaced by that Crystal Light stuff.  We still ran around the house, though, and got into trouble.  Picked on one another.  Diabetes didn’t really change much, in that sense.”

Laura found herself in a similar situation as a sister, focusing on the hard-to-pinpoint effect that diabetes may have had on her life.  “I don’t feel it’s had an effect, but maybe that’s how it’s had an effect. Maybe Jacquie wishes that it were more front and center for me, or that I would have been more helpful when we were younger. She was kind enough to participate in a Science Fair Project for me in the 10th grade. She was my only participant. I basically made her check her blood sugar, jump on the exercycle that was in our kitchen, and check her blood sugar again. I made it to the State Science Fair that year and was placed next to participants who were proposing cures for cancer and ways to reduce the spread of oil in the event of an oil spill. I was surprised because, to me, it seemed I was just presenting a day in the life of my sister and her blood sugar levels. It’s not until we started to spend more time together as adults—even if just on vacation—that I feel I’m really understanding what a burden she’s been carrying around.”

So what do you do, if you’re the sibling of a person with diabetes?  It’s not your disease to manage, but it resides in a person you care deeply about, so it becomes yours, in a sense.   Jackie found that she could make the biggest impact, and be the best supporter for her sister, simply by being there for Mollie. “The comfort of knowing they’re not alone and that there’s someone who’s got their back no matter what, makes their struggles a little easier to bear. Sometimes that’s all anyone needs to help them get through the day.  For someone with diabetes, it’s always one day at a time.”

Laura and my siblings agreed with Jackie, but also mentioned the need to be there for the moments of acute need, such as low blood sugars.  “I don’t know if it’s best to make a big deal out of it or to try to make life seem more normal by not making a big deal out of it,” said Laura.  “All I knew to do was to be there with a juice box, if needed.” 

Darrell concurred.  “Be ready to help if a low or high occurs, as I know your greatest fear is to have that happen alone, with no one to assist when your body and mind aren’t cooperating.  Young siblings should know how to call 911 and/or parents if there are issues.  Other than that, treat them no differently. There’s so much change and so many routines a person with diabetes has to do to work to be healthy, I’m sure they’d appreciate just being a brother or sister to them.”

He added, “That and look beneath the frozen snap peas for the M&Ms.”

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

Interview: Anna Norton on the Future of Diabetes Sisters.

Organizations that bring people touched by diabetes together have a special place in my heart, because peer-to-peer support checks that “whole person care” box on the mental diabetes management to do list.  The Diabetes Sisters organization is a group that brings women with type 1 and type 2 diabetes together in an environment that fosters open discussion, camaraderie, and learning.  Today I’m talking with Interim CEO Anna Norton, who is helping transition the organization into a new era.

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Kerri:  Thanks for taking the time to talk today, Anna!  We’ve known one another a long time, and you’ve been part of the Diabetes Sisters organization for years.  Can you tell me a little bit about how you got involved with DS?

Anna Norton:  Thank you, Kerri, for taking time out to interview me! I initially became involved with DiabetesSisters in 2011, when I attended my first Weekend for Women Conference in Raleigh, NC. That was the first time I had ever experienced being in a room with 99 other women with diabetes. I never realized how much I needed their understanding and support until that weekend; before that, I just managed on my own. Following that event, I was asked to join the planning committee for future conferences. In 2012, Brandy asked me to join the DiabetesSisters’ staff full time as Operations Manager, where I oversaw the National PODS Meetup program (our monthly support group meetings), the Weekend for Women Conference Series, online contributors, and other programs. Over the last four years, I’ve gotten to know so many people with diabetes, so many “movers and shakers” in the diabetes community, including you!

Kerri:  What is your personal connection to diabetes?  How does your personal experience color your involvement with Diabetes Sisters?

Anna Norton:  I was diagnosed with type 1 diabetes in 1993, when I was 18 years old. Initially, I had a few years of okay management, followed by years of noncompliance, depression and poor medical care. Eventually, I faced the reality that diabetes was controlling me and holding me back. Once I realized that, I was able to make changes in my management, starting with finding a new endocrinologist and going on a pump. Then I fulfilled my personal dream of getting married and having a child, which so many people told me I would never be able to do.  It’s been 15 years since I “transformed” my diabetes care and I’ve never looked back. Over the years, I have met so many women through DiabetesSisters, all at different stages in their diabetes care. I see myself in so many of them: a younger version of myself struggling to figure out how diabetes plays a role in her future, a mom managing both diabetes and a young child, a professional figuring out how diabetes will affect her career. I am inspired by every woman I meet living with diabetes, thriving with it, each with her own story of success. It’s important to me to have these women in my life, to support and guide me, and in turn, for me to do the same for them.

Kerri:  With Brandy leaving the organization (and she will be missed!), how do you see yourself stepping up and taking charge of this amazing group?

Anna Norton:  Brandy really did an excellent job in building a strong foundation for DiabetesSisters and for that, we are grateful. Over the last three years, she and I teamed up to create more programming to serve our online population and train more women to lead our PODS Meetups – monthly support groups that meet in over 30 cities throughout the US, including an online meetup. Over the years, Brandy entrusted me with the care of DiabetesSisters on so many levels, all the moving parts became very familiar to me. When Brandy decided to step down, the Board of Directors asked me to step into the Interim CEO role and continue the work. In my new role, I have the opportunity to meet supporters and funders that have helped shape the success of DiabtesSisters, and I get to share our member stories with them, as well as represent their needs. It’s important our funders to know how much their support helps change lives.

Kerri:  What are you most excited about, as CEO?  What scares you the most?  And how can the DOC help as you transition?

Anna Norton: I am definitely excited about continuing on this great path, growing our programs and services, adding more topics to our webinars, and reaching as many women as we can. I’m excited about adding some services for underserved populations, such as African American and Hispanic women. I have a busy summer ahead of me, representing DiabetesSisters at various conferences. The biggest challenge, though, is our small staff, although we’ve had some key volunteers step up to plate to help out, which is fantastic! During this time, I’d love for the DOC to reach out to me, introduce themselves virtually or in-person, and learn more about how the organization can serve them or ways we can partner up to impact more lives. I’d love to see women in the DOC step up as leaders and create more PODS Meetup groups in their communities, share their stories with the community through our website blogs, and provide online support through their own blogs.

Kerri:  Will the PODS meetings still continue?  How about regional conferences?

Anna Norton:  Of course! We just completed a weekend Leadership Institute for our PODS Leaders, which focused on more training for them. This program is, by far, our largest in-person, serving over 1,200 women annually, with a balance of education and support once a month.

Our national Conference Series – Weekend for Women, along with the Partners’ Perspective Program – is still alive, although we took this year off to focus on the Leadership Institute. It’s always a challenge with limited funds, so we’ve tried to provide the best programming in 2015.

Kerri:  What’s next for Diabetes Sisters, and how can the DOC get involved?

Anna Norton:  Our future is bright – and I’m glad to be a part of it. This is a time of continued growth for DiabetesSisters, and for all diabetes-related organizations. There’s so much to learn, so many treatments to trial, so much support to be provided. The DOC can move mountains with its influence, and encourage their audience to learn more about DiabetesSisters, read our website (www.diabetessisters.org), subscribe to our e-newsletter, listen to our webinars, and most importantly, get the word out about how we are a one-of-a-kind organization focusing on the emotional and social well-being of all women living with all kinds of diabetes.

Kerri:  Where do you see Diabetes Sisters in six months?  A year?  Five years?

Anna Norton:  That’s a great question! I definitely see DiabetesSisters continuing on the path of growth. With a great Board of Directors leading, there’s no doubt that will happen. In the near future, we will continue to build upon the foundation that is set, growing existing programs, trialing new ones, listening to our members and providing for their needs. Over the course of the following years, I see great partnership being forged with other organizations, maximizing our potentials in the diabetes support world. Eventually, I envision DiabetesSisters as the go-to for women living with diabetes to learn more about every stage of life including the years of young adulthood, relationship, pregnancy, parenting, peri-menopause and beyond, advance duration, etc.

Thank you, Kerri, for allowing me this opportunity, for being a DiabetesSisters’ cheerleader and for giving so much of yourself to the organization. I am excited to expand my role in the DOC and contribute to the support of our community!

Diabetes Blog Week: Kicking It to the Curb.

When I was first hospitalized upon diagnosis, I spent two weeks in-patient learning the new and tangled ropes of type 1 diabetes with my parents.  My hospital roommate was a kid named Eddie, who had been bitten by a spider.  The other source of comfort was Kitty.

This grubby thing has been with me since the beginning.  My mom and dad let me pick him out at the toy store to before being admitted to the hospital, and this stuffed animal received as many paw pricks and injections as I did – albeit saline ones – during the course of those two weeks.  Kitty used to have long, fluffy “fur” that became matted and mangy from repeated snuggles.  He has a defined “waist” from me wrapping my little kid arms around him when my blood was being drawn.  You can’t entirely see his eyes, but they are in there, underneath the smushes of fur.

Chris and I moved into a new house a few months ago, and as we were packing, I had a few boxes designated as “important things.”  Those boxes weren’t put into the moving van but instead stayed in my car to keep them safest during the course of all the stuff shuffling.  One box was marked “DIABETES SUPPLIES” and in it I crammed my pump infusion sets, test strips, Dexcom sensors, etc.  And tucked neatly beside a spare glucose meter was Kitty, continuing to secure his VIP place in my diabetes supplies arsenal.

He used to live in my arms, when I was seven.  Then he moved to my shelf in college.  Now he lives in my closet, keeping watch from between boxes of Dexcom sensors.

He’s ancient.  Older than anything else I’ve ever owned.  Some people might think he’s due to be kicked to the curb, weeded out, tossed.

To this, I say, “No effing way.”  I’m planning on playing Uno with my grandkids several decades from now, with Kitty keeping watch from the closet where I’ll keep all my old lady accoutrements*.

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This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)”

* Like giant pairs of underpants  UNDERPANTS!

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Diabetes Blog Week: I Can.

Decades ago, my body did whatever it did to reroute the purpose of my pancreas, and left me with a diagnosis of type 1 diabetes at the age of seven.

As a result, I can’t make insulin.

Diabetes was presented as a series of “You can’ts” to me, back in 1986.  You can’t eat that, you can’t do that, you can’t try that, you can’t be that.  It was an unsettling feeling, being a child and living by a series of perceived restrictions.  But not knowing any differently, I spent way too much time thinking that there were things I just could not do instead of recognizing and celebrating how capable my body remained.

It wasn’t that I didn’t make insulin.

It’s that I had to coax out the instinct to live beyond diabetes.

I had to relearn how to trust myself, which was a weird paradigm shift because I was used to not trusting my body.  (When your immune system unexpectedly turns on you, you might develop a trust issue or two.)  It’s a learning curve, even to this day.  I trust my body to run for miles and hold my daughter in one arm, grocery bags in the other, but there are hiccups thrown out by diabetes here and there.  Like last night, when my low alarm went off for an hour and a half because my blood sugar was cemented in the 50′s for that long and I had to put reason and restraint into practice by treating the low cautiously instead of devouring the contents of the fridge with reckless abandon.  I had to trust the food and trust myself to bring my blood sugar up enough but not too much, aiming for that balance without caving to frustration.

I don’t know how to achieve balance, but I do know how to remain in pursuit of it.  I’m still learning.  I’m always learning.  Diabetes is not a hole in me or the whole of me.  It’s a thing that requires thinging, and I’ll thing the hell out of it until my last breath.

But not at the cost of giving in to it.

I need to remember that I can do this.  I can conquer this.  I can design this and devour this and delight in this.

I can.  I fucking can.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)”

Click for the I Can – Monday 5/11 Link List.

Turning Ten.

I’ve written ten years of content here at this blog, and today marks the beginning of an eleventh year.  Ten years is a frigging long time.  When I started blogging, I was 25 years old and living in a one bedroom apartment in southern Rhode Island with Abby the Cat and a newly-minted Siah Sausage, starting my relationship with Chris and clumsily finding my footing as a proper adult.

Rocketblast forward ten years and I’m a self-employed writer and proud diabetes advocate, married to the guy whose name I still write in the peanut butter, mother of one small but fierce little Bird.  (And, as Rhode Islanders should, we came back to Rhode Island.)  Throughout the last ten years, so much has changed.  But type 1 diabetes has been a constant.  (A constant pain in the butt.  A constant source of humility and perspective.  A constant thing to be conscious of and diligent about.  All of it.)

What makes my diabetes management easier?  A healthy diet, lots of exercise, checking my blood sugar, taking insulin appropriately … check.  What makes doing all those things easier?  A healthy community, lots of community, checking in with the community, taking community appropriately …

… check again.

I could go on and on about how blogging about diabetes has opened up opportunities for support and camaraderie, but I’ve kind of already done that.  So I’ll just say thank you to each and every one of you who reads this blog or writes their own blog or Tweets about diabetes or posts about diabetes on Facebook or Instagram or Tumblr or [insert shiny, misspelled social media thing here].


Thank you for sharing your stories, and for creating our diabetes community and helping it grow.  It’s been an amazing journey, the one from “alone” to “connected,” that “grateful” doesn’t even begin to touch.

Onward and upward.

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