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Posts from the ‘Psychosocial Support’ Category

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

Tallygear Winners!

The Tallygear giveaway was fun to run because it helped contribute to a discussion about how people in the diabetes online community are tackling diabetes-related stigma.  The comments section had some great points about erasing diabetes stigma, and I wanted to highlight a few:

“Today I had a good discussion with my sister about the different challenges I face (35 years worth!)—– things that I usually keep to myself for fear of ‘boring’ someone. We both learned something special.” – Deb

“Isabella just started a Dexcom trial so she now has two devices on her 3-year-old body (Omnipod, too). When we go places I never encourage her to wear clothes that cover up her devices. I’d rather people see them and ask us what they are so we can spread awareness and educate them. In fact, Isabella is proud to show off her pods that we decorate…sometimes you forgot that even 3-year-olds can fight off stigmas, too.” - Kristina

“I am stupidly proud to admit that I am becoming a ‘regular’ at my gym. More people wave, say hi and even start conversations with me. More often people are asking me what my D-devices are. And I am more and more comfortable in telling them. And if further asked I actually find a little happiness in explaining what my (and our) T1D is and they actually want to know more. Erasing #dstigma one workout at a time and it really feels awesome. Really.” - Marie C

“I try to help change the perception of T1 by showing my friends/family that my daughter can do ‘normal’ activities and eat ‘regular’ foods!” - Zak

“I work as a nurse in a hospital and while my unit is not diabetes-specific, nearly all of my patients have some form of diabetes. While I don’t think it is appropriate to tell them about my diabetes, I try to have real conversations with my patients about managing their diabetes as effectively as possible. My hope is that I am doing my small part to reduce the #dstigma by giving people the chance to talk openly about their disease.” - Melissa

“My answer to reducing the #dstigma is to talk about my experiences. I don’t hide the fact the I have diabetes, and am always happy to answer questions. Can’t change the world all at once, but a little bit at a time can go a long way.” – Mark

Loopy hates stigma but loves ribbons.

And now, the winners!  The winners of the Tallygear giveaway (chosen at random by the Rafflecopter widget, which tallied blog comments and Twitter interaction) are Jen L, Gisela, and Kristina G! Thanks for joining the diabetes stigma (#dstigma) discussion and sharing your perspectives.  I’ve sent you an email and will send out your Tallygear fun stuff in the next few days.

Thanks to Tallygear for making this giveaway possible (be sure to check out their website and peruse their fashionable, and functional, products), and thanks to you guys for being an advocacy force that is changing the way society views diabetes, one moment at a time.  Like Mark said, “Can’t change the world all at once, but a little bit at a time can go a long way.”

What Do You Want to Talk About?

Last night’s #dsma chat was a particularly good one, because its intention was to generate discussion and feedback about what people in the diabetes online community (DOC) want to talk about.

Over the last ten years, the diabetes community has created some effective and supportive roots on (in?) the Internet. We are a vocal and passionate group of people (living with diabetes ourselves or caring for someone touched by diabetes) and the community seems to help people who are looking for their peers, looking to change something, or simply looking to share their stories. No matter what your level of involvement might be, the DOC is a place where you can find your footing.

So this question of “What do you want to talk about?” is a great one because it can help serve the needs/ hit the goals/ scratch the itch.

The evolution of the DOC is constant, and powerful, and we all have a chance to influence and shape it.  What’s important to you?  What do you want to talk about?

(And if you’re looking for more information on how to jump into the #dsma Twitter chats without losing your mind, check out this Diabetes and Twitter 101.)

CGM in the Cloud: Personal Preferences.

“Why would you want your continuous glucose monitor information in the cloud?”

Fair question, especially coming from folks in the CGM in the Cloud Facebook group, which is heavily dominated by parents of children with diabetes.

I didn’t want to answer, at first, because I didn’t want to say the wrong thing.  When I meet with parents of kids with diabetes, the instinct to protect them is undeniable.  I want to tell them stories about people who are thriving with type 1 diabetes – “Hey, have you heard about the guy who is running across Canada?  Have you heard about the woman who gave birth to twin boys?  Have you heard about the couple who met and fell in love via the diabetes community?” – because that is the perception of diabetes that feels best to share.  It feels good to share successes, triumphs, proud moments.  You can thump your fist against your chest in pride; we are not held back by diabetes.

This is what I want to tell the parents of kids with diabetes.  Their kids will be okay.  Because that’s true – their kids will be okay.  But not without compromise, and that’s hard to articulate because it seems to fly in the face of “your kids will be okay.”  I don’t like reminding people that their kids with diabetes will become adults with diabetes because this disease is forever.  It’s uncomfortable to admit that diabetes is hard.  It’s hard to find words to illustrate the concept of, “I’m fine … sort of.”

“Why would you want your continuous glucose monitor information in the cloud?”

I’ve had some low blood sugars that have rocked me so hard I couldn’t recover, even after I had technically recovered.  Whether you want to admit it or not, diabetes requires extra planning.  Even the best and tightest and most well-controlled diabetes still comes with the threat of lows or highs.  This is why glove compartments end up crammed with jars of glucose tabs, and why back-up insulin pens litter the bottom of purses.  I was always taught to hope for the best – you can do anything with diabetes! – but to have a plan for the worst, should it happen.  Never ride a subway without snacks.  Never put diabetes supplies in checked luggage.  Always check blood sugar before driving.

“Call me when you wake up so I know you’re alive,” is a phrase casually uttered by my mother when my husband is traveling, but the honesty to it stops me cold.  Does my mom worry that something will happen to me at night?

Before Birdy was born, I had a healthy fear of lows, but after she arrived, that fear became something different entirely.  Now, a debilitating low blood sugar doesn’t just touch me, but it could hurt her, too.  When she was a few months old, my husband went away on a weekend trip and it struck me for the first time that if I didn’t wake up, no one would be there to take care of my daughter.  I pictured her in her crib, crying, alone, and without care.  The idea of her going without breakfast hurt me more than picturing my own unresponsive body.

Sounds dramatic?  It’s dramatic as fuck, because diabetes is quiet, until it’s not.

“Why would you want your continuous glucose monitor information in the cloud?”

Why?  Because having someone else able to monitor my blood sugars makes me feel safer.  I can’t make insulin anymore, but I can create peace of mind for myself, and for my family.

So I’m not waiting.  I’m not waiting for bad things to happen.  I’m taking a preemptive bite out of fear by putting another safety net into place.  When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it.  When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep.  Same for when my husband is traveling and I am alone with our daughter.  As much as I know the CGM companies are working hard to bring this technology to patients, waiting removes the safety net that would help me sleep better at night.

I am not waiting.

 

 

We Are Not Waiting: CGM in the Cloud (Part 2).

Continuing from last week, I’m picking up this morning with Laurie Schwartz, mom to Adam (T1D) and an active and supportive voice in the CGM in the Cloud group.  In the last week, I’ve had many interactions with people from the CGM in the Cloud group and every single person has been happy to share their experiences, eager to share their expertise, and more than patient with my questions because their goal is to help people.  Laurie is no exception.  Laurie Schwartz is a retired dentist, now residing in Colorado and partnering with her husband in life, love, home-education of three kids, and pursuing a better understanding in diabetes management for her son.  And today, I’m really pleased that she offered to share her experiences with CGM in the Cloud here on SUM.

Kerri: What’s your connection to the diabetes world?

Laurie:  Diabetes has been a very large and recurring theme in my life since 1980.  
I have lived with diabetes from the perspective of a child watching a diabetic parent struggle.  I have experienced the disease as pregnant woman fearing the damage to an unborn child when diagnosed with gestational diabetes. The most emotionally challenging connection is definitely as a parent caring for a child with this disease.  Recently, I have added the view from an early diagnosis for myself as I become more and more glucose intolerant.

My father was a brilliant physician who suffered for decades from the complications of insulin dependent type 2 or he might actually have been misdiagnosed and was LADA.  His struggles with fears of lows as a surgeon, to poor control and long standing hyperglycemia from lack of frequent monitoring, to my witnessing all of the devastating complications he lived with has influenced me heavily in my approach to our son’s current management.

My third and youngest child, Adam was diagnosed in June 2008 with type 1 at the age of five years old.  Our diagnosis story is included in a book “Lifesaving Labradors.”

Kerri:  So how did you find out about the CGM [Continuous Glucose Monitor] in the Cloud group?

Laurie:  In the pursuit to have every tool possible for maintaining “normal blood sugar”,  I found myself embracing the benefits of the diabetic alert dog.  I have been active in the Diabetic Alert Dog community since training our alert dog in 2010. Willow Wonka is our son ‘s alert dog. Willow is a very skilled and polished dog, who has contributed significantly to our ability to maintain Adam’s a1c between 5.4 and 6.0 since June 2011. My use of the alert dog with the CGM has been our focus for better management.

On April 20, 2014, our close friend who heads a wonderful diabetic alert dog organization, Crystal Cockroft of Canine Hope for Diabetics, screenshot and texted me a picture of a Pebble watch with CGM information.   She thought I would like the technology.  I immediately wanted to jump on a plane to San Diego and pay any amount of money to acquire the technology.  I was shaking with excitement over the envisioned benefits the system could offer.  We had to have it!

The picture was posted on her Facebook friend’s page, Jason Adams. 
I contacted Jason minutes later on Facebook and he” heard” my desperation.  He assured me that a plane trip or an expensive fee was not required.   By April 22, just 48 hours later, we had purchased everything and had the system working.   Then, remarkably within just 3 hours, the CGM in the Cloud potentially helped us avert a dangerous medical crisis.

Kerri:  Within three hours?  What do you mean?

Laurie:  My desperation to acquire this technology resulted from a culmination of stress due to five months of bitter fighting with our mail-order pharmacy to stop shipping us 90 day supplies of warm insulin. Just the days earlier, I had finally gained approval from our insurance to receive local retail pharmacy, in the hopes it would be properly stored and handled cold insulin.  My recent success was a result of my efforts the previous week frantically arguing that bad insulin would kill my child because his body and our pump settings were all adjusted to the unknown effectiveness of warm less effective insulin. My claims were my true fears but I didn’t truly understand what that could look like.

We have had our kids in year-round swim team for four years mostly because the exercise is fantastic for blood glucose control.  We have systematically created a process to maintain stable blood sugars during practice with Adam’s consumption of simple glucose drinks.  We check blood glucose midway through practice or more frequently and one parent is always close by.

Our prior success in managing to maintain steady blood glucose even with potentially weak insulin gave us a false sense of security.  In hindsight, it was a recipe for disaster.  We were so comfortable with our carb/exercise protocol that I was even taking the alert dog to classes away from our son during some swim practices.

University of Denver Hilltoppers has 80-100 kids in the pool every evening.  On this night, when we had the Cloud system for the very first time, I was at dog agility class with Willow.   My husband was swimming his own laps in the open adult lane with Adam just 2-3 lanes away.  I watched on the CGM in the Cloud Adam’s CGM readings decreased and then report a 49 mg/dL.  I repeatedly texted my husband, then determined he was probably unreachable by text because he was swimming and for the first time since Adam was on the team, called the pool office and asked that Adam and my husband be removed from the pool to check his blood glucose.  The BG check revealed Adam was 70. For us, a BG of 70 is not necessarily an emergency but Adam had been consuming simple glucose all through the practice and should have been 100-140.   My husband gave him (an unusually large amount for us) 15 g of carbs without additional insulin, waited 15 min. and with Adam’s insistence that he was fine, let him back in the pool.  Adam got out five minutes later reporting feeling extremely low and sick.  His feelings of that symptomatic persistent low did not resolve appropriately as his BG would not increase above 70 mg/dl for about an hour even with additional large amounts of dextrose and interrupted insulin.

We can only attribute this never before seen persistent low to the use of the new effective insulin combined with the effects of heavy exercise on his body’s insulin sensitivity.  The timing of our access to the CGM in the Cloud was so fortunate, and I believe lifesaving.  The realization that we so narrowly escaped a tragic situation motivates me to continue to express my gratitude and assist in other T1 families learning about this amazing system.

Kerri:  That’s some tech validation, right there.  Is this in line with what you see being discussed in the CGM in the Cloud group?

Laurie:  The group was created to share the personal experiences and observed benefits of the system.  Our swim practice incident was just one instance that demonstrated that this technology advance to the CGM system was too important to keep private.

The group discussions are varied from sharing success stories, sharing how distance monitoring allows for parents to coach grandparents and friends while away with a T1 child, to assisting in technology set up questions, and to discussing future development ideas and approaches.

All of the contributions made by the group members assist in the direction of the future advancements to the system.  [Editor's note:  The emphasis added was mine, because her statement is beautifully true.]

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?  

Laurie:  This is a technology was created out of necessity by real parents living with the shortcomings of what the industry had to offer.  The ever-growing bank of ideas and knowledge is flourishing with new approaches from all over the world.  This group is collaborating to create software and hardware advancements for T1 monitoring, data transfer, and utilizing this community’s conversation to draw the direction to which the effort should be best focused.

Kerri:  As I had asked John last week, do you fear the FDA?  Or the companies that make the CGMs?  What are your concerns about how Big Companies might view this movement?

Laurie:  I am concerned that greed or other human failings might slow the progress of this technology.  The FDA has its role to review the safety of medical devices.   In this case, the FDA has played its part by testing the inserted sensor materials, the exposure to the transmitter signal and reviewed the data reliability in studies comparing the BG and venous draws to the CGM readings.

In my opinion, the FDA has little place in restricting how the patients use their own medical data.   Once collected, the data is used for improving and intelligently monitoring diabetes management decisions and should not be restricted.  How the data is usefully transmitted is not an FDA matter, it should not be restricted or slowed.

The cloud group is not about redesigning wonderfully effective medical technology, but rather improving user interface. The biggest facet to effective diabetes management is constant awareness of your body and its metabolic status.  Making that information as convenient as glancing at your watch or smart phone is invaluable to the process. Dexcom is a leading company in the CGM industry, approved by the FDA as a medical device company and should focus its efforts on continuing to improve materials for interstitial fluid monitoring of glucose.  How the patient uses or shares the medical data should be a patient decision.  If the open market technology world designs advancements to support the Dexcom technology, the tech advancements can promote the company’s continued success in the industry.  This can be a win-win for Dexcom and the T1 community through the careful construction of continually improving the technology bridge.

Kerri:  Okay, so let’s look at some of the nitty-gritty.  How easy is it for members to get one another suited up and running on a remote device, and how does the CGM in the Cloud community help one another in this process?

Laurie:  Many new members have assisted each other in the set up process.  Jason Adams had contracted a freelance university student, Rajat Gupta to help him set up his own Cloud system.  Without hesitation, Jason shared that with me, a complete stranger, connected by desperation to help one’s child. Jason and Rajat assisted in our set up and many many more set ups since.  Rajat’s system has been very successful and easy to utilize for the non-tech families.  Our setup was literally a 20 minute process once the android, pebble watch, cords and case were purchased. Our heartfelt gratitude goes out Rajat for continuing to support this community with many uncompensated hours.

Jason Adams started the Facebook group to help share the clear benefits that having the Cloud system offered.  Since that beginning where Rajat offered an emailed application, the group has grown and and additional option to acquire the Cloud system has emerged with community support for a “Do-It-Yourself” system.  Regardless, of which way a PWD or CWD acquires the CGM in the Cloud, the system offers unique access to real time distance monitoring of CGM data.

Kerri:  And last, but certainly not least – why is this CGM in the Cloud technology important to you?  

Laurie:  Personally, every single advancement is an opportunity for better control.  I remain tormented by my father’s struggles with diabetes, and I am driven to help my child live better with diabetes.  We have many systems in place to assist us in our management goals.  We strive to maintain non-diabetic glucose ranges to the best of our ability.  The effort it takes to manage tight control is very complex. and requires constant vigilance  We appreciate various devices for their contribution and do not focus on shortcomings. We embrace any and all systems that can help us to make better, faster and smarter management choices.  We pursue the latest most accurate blood glucose meter, the least intrusive pump, the best trained alert dogs, the newest generation and best rated CGM and any extension that can be added to those systems.

The BG meter is a static point in time and as quickly as that reading is offered in a few short minutes a very different glycemic situation could be occurring.  Considering the margin of errors each and every BG reading may reflect, it is almost based upon tradition or superstition to why anyone uses a BG meter for making important decisions regarding the titration of a lethal drug like insulin.

The alert dogs are preemptive tools requiring proximity to the T1.  The DADs (diabetic alert dogs) give a signal that alerts us to impending changes prior to the meter and CGM. The dogs give us a heads up that we need to pay attention.  That heads up is usually significant in shortening the amount of time or our son is out of range with a high or low event.   The biggest drawbacks to their service is the necessity of proximity (limits set by distance scent can travel) and the handler’s ability to interpret and utilize the advanced warning alert.  By proper interpretation of the dogs alerts extremes glycemic events can be minimized and ranges tightened.

The CGM shows trends and data.  Reviewing data gives valuable information for discrete dosing adjustments to basal rates and bolus ratios in the short and long term.  There is overlap with the CGM high and low alarm alerts with the dog’s alerts to some extent, but not quite.   The diabetic alert dog’s alerts are usually ahead of the meter, CGM and symptoms and the CGM historically lags the event.  Similar to the dog’s scent ability, the CGM is also restricted by proximity through the limits of range of signal from the sensor’s transmitter to the receiver.
 
What the CGM in the Cloud uniquely brings to our arsenal of management tools is real time distance monitoring.  No other tool allows for the person with diabetes to have the assistance of a person at distance contribute to the management in real time.  The distance component is lacking in the current management tools.  By having the Cloud broadcasting a constant flow of information that can be accessed by interested parties, those parties can assist in collaboration for better treatment decisions, faster or slower or more discrete interventions.

From a social and emotional perspective, the Cloud system also offers a more discrete monitoring contribution.  With this technology, we can assist our child in treatment decisions in a more timely fashion but also with less unnecessary intrusions to the parent-child relationship.  We can lessen our queries for CGM readings or BG results and more unobtrusively suggest a timely intervention of a BG check, suggest a small carb snack or insulin dose.

 By utilizing the Cloud, some of the relationship interruptions caused by diabetes are minimized.

With more intelligent distance monitoring by parents; the teachers, babysitters, grandparents and parents at play dates have support staff, experienced diabetic managers on their team to help the T1 child safely stay closer to normal ranges.

For a parent to develop strategies to promote safe independence, safety need not be compromised.  Traditionally, parents gave their children carbs before bed.  The bedtime snack was to help prevent a low during the late hours.  That same snack probably caused a high but without testing or monitoring the highs were not confirmed and the child was hopefully expected to survive the night without a deadly low.  Sleepovers and bedroom assignments were dictated by proximity to parents’ bedroom because that was needed for monitoring.

Sending a child to participate in a sporting event or physical activity usually involved increasing the blood glucose, so there was a margin of error for the exercise induced energy drain.  With the CGM in the Cloud, more timely monitoring can provide the opportunity for the parents to avoid unnecessary highs as a prevention technique for lows.

The real story is in those who created this technology. The determination and drive of these parents with T1 children to work tirelessly to create a system that overcomes the limitations of current medical technology is so impressive.  The value in this system is that it was forged out of necessity.  These parents had a vision and they created and labored to succeed. 

Their decision to their solution with complete strangers speaks to their integrity and generosity.  Our interest, gratitude and support should be focused on their efforts and selfless contribution.  These individuals have careers, families, sleep-deprivation from living with children with T1 and they are not looking for the fast buck or to “cash in.”   Subsequently, others will come looking to help and develop this process. There will undoubtedly be some looking to make a quick buck,  but the developers released their work to open source for the good of the T1 community.  Regardless of who continues to develop this system, my hope is that the diabetic community will be improved as this much-needed technology continues to develop.  I offer my information as an end user of the CGM in the Cloud and my enthusiastic support of the system for its life saving and life improving capabilities.

Thank you so much, Laurie, for sharing your story.  To find out more about CGM in the Cloud, you can visit the Facebook group (up to 2,779 members now) and connect with folks who share your desire to have the data where, when, and how you want access to it.  And later this week, I’ll show you the system they helped me build and why it matters to me, as an adult with diabetes.

The One About Broken Windows.

Tackling diabetes, one window at a time.

(See also:  caulk)

(And the second part of the CGM in the Cloud write-up will be up on Monday. A long night with a cranky Bird didn’t make for any decent writing. Thanks for your patience!)

Friends for Life: Madcap Recap.

A bulleted list because that’s what bloggers do.

  • My personal schedule had me running around like a chicken with its head (and pancreas?) cut off, and while I felt really lucky to be so busy, I didn’t have enough quality time with people I love.  It’s a nice problem to have, but it was frustrating because now that I’m home, I wish there had been long coffee chats with so many different people.
  • Coffee tastes best out of my new favorite mug –>
  • One of my favorite moments was during the Parenting with Type 1 Diabetes session, when Marissa Town and Melissa Lee started singing the Dexcom “ATTENTIVE” low alarm song, complete with facial grimaces and in perfect harmony.
  • It’s weird how therapeutic it can be to cry in a room full of “strangers.”
  • Even odder still is putting the word “strangers” into quotation marks because anyone living with diabetes has intimate knowledge of moments in my life that even my closest family members can’t quite wrap their head around.
  • It was so nice to meet the team from Kedz Covers, and yet so odd to meet them in Florida, seeing as how they live here in Rhode Island.  Only in the diabetes community do you meet your actual neighbors at a conference 1300 miles from home.
  • (And yes, that’s the “Don’t Mess with Rhode Island, Either” t-shirt, but I negated its awesome message by wearing my bag cross-body style, covering the little Rhody and making it look like I’m on the welcoming committee for Texas.  Whoops.)
  • The “Reducing Social Stigma from Diabetes: A Patient Perspective” session with Richard Wood, Kelly Close, and Adam Brown was one that I wish I had been able to attend, because the stigma related to (and nestled around) diabetes of all kinds is a topic that is very top-of-mind for me.  I’m looking forward to seeing and hearing more about this survey and have been stalking the #dstigma hashtag for feedback.
  • Watching Melissa pass the diaversary torch (so to speak) to Briley in the bar at midnight was a moment that made me laugh, but also gave me goosebumps because marking a diaversary can be intense, but doing it a room full of people who love you is fucking empowering.
  • It was an absolute honor (and wicked fun!) to partner with Dexcom last week, sharing stories and giving away copies of Balancing Diabetes. A huge thank you to Dexcom for their support, and also to the diabetes community for stopping by to say hello at the booth.
  • And thanks to Scott for lending me a pen to use at the book signings, which just so happened to be a pen from George’s office, making me feel like a little bit of George was at Friends for Life, too.  Full circle, there.
  • I loved being part of a session for parents of children with diabetes aiming to answer the questions they might not be asking their own kids, and it was an honor to partner with Adam Brown (of Close Concerns) for this session.  The discussions were intense, but productive, and for anyone in attendance who didn’t end up watching The LEGO Movie that night, here’s a link to what the hell I was talking about.
  • I learned that Scott, aka “Pockets,” keeps an army of diabetes (and non-diabetes related) supplies in his pocket.  The man is half kangaroo.
  • (Happy belated birthday, Pettus!)
  • After Friends for Life was over, Chris and Birdzone flew down to Florida to meet me and we spent a few days at Disney.  Getting ready to head out to the park the next morning, Chris asked why I still had my conference bracelet on.  “I like it,” was my response, because it’s hard to articulate what the green bracelet really means to me, or how the orange bracelets keep me going.
  • I still have my green bracelet on.  We walked through the Magic Kingdom and I found myself glancing at wrists around the park to see if anyone from the conference was there.  I didn’t see any green bracelets.  But I kept mine on in case someone was looking, too.
  • I still have it on now, only I don’t think the cats give a shit.
  • (Total sidebar:  It was Loopy‘s birthday two days ago, and Birdy and I will be making her a “cake,” which equals out to Birdy wanting to eat cake and this is her excuse.)
  • Attending Friends for Life is a place where I can wear my emotions on my sleeve and my pump on my hip.  It’s somewhere I can feel safe admitting the things that weigh heavily on my mind but also celebrate something as simple as a 100 mg/dL on my glucose meter.  And nothing reminded me of this more than when I was walking towards my next session and I saw Briley outside of it, tears streaming down her face.  “I just had my eyes checked.  And they’re totally fine!!  After twenty-five years, they are still fine.”  I couldn’t hug her fast enough, or hard enough, because that’s what you do.  You celebrate the things others would never think to celebrate, and you appreciate the people who understand.

 

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