Skip to content

Me and my Endo.

My husband and I made a big deal the other day about how we had known each other for ten years.  “Such a long time!”  We clinked champagne glasses and toasted to the decade.

Ten years is a long time.

Thirteen years is even longer.  I’ve been seeing my endocrinologist for about thirteen years.  (Sorry, Chris.)

“Relationship” feels like a strange word to use because it sounds so familiar, so intimate.  But the relationship I have with my doctor is just that: familiar, and intimate.  She checks my physical body for the signs of diabetes wear and tear, but she’s also part of my mental health team, allowing me to let loose a few diabetes demons.  When her office door is closed, that’s when I start fessing up to things I sometimes keep secret from my family …

(More over at Animas today!)

Recreating the Pee Alarm.

Birdy has this “learn about how electrical circuits work!” toy, and she plays with it endlessly.  I thought we had built every plan in the book that came with the game until she busted out this page yesterday:

And once we built it, I realized we had recreated the “pee alarm” that my parents used when I was very young, when the first symptoms of diabetes started to present themselves.

“Can we take this apart now and build a different one?” I asked her, the noise of the pee alarm making me feel like I was in first grade all over again.

“Sure, Mom.  But why?”

I started to explain, and then realized some things are better left unsaid.  (But clearly not unblogged.)

Walk with D: Join My Diabetes Journey.

How can people without diabetes understand what living with diabetes is really like?

This is why I have written this blog for almost ten years – to connect and share with my peers, but also to educate those who don’t exist in the diabetes bubble.  The DOC shares so much about their personal lives with diabetes in efforts to find community, empathy, and that whole, “Me, too!!” vibe.  But even within the diabetes community itself, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.

By increasing understanding and empathy, we can work together to raise the visibility of real life with the ‘betes.  And the aim of the Walk with D campaign is to help peel back the layers of misunderstanding in efforts to build those bridges between the community itself and society.

Participation is simple: Share your story.  Using social media as your megaphone (like so many of us already do), show what your diabetes life is really like through blog posts, photos, tweets, status updates, and videos, and tag your stories with the #WalkWithD hashtag.  (Were you thinking about starting a Twitter account?  Today would be good – you’ll have three days to practice before #dsma!)

Gone are the days of stock photography representing diabetes (besides, it always pissed me off to see the stock photography lady who had diabetes one week and who also came back as a search for “office meeting frustration” – show me REAL PEOPLE with ACTUAL DIABETES, not the same reused stock photography model) – social media gives us the opportunity to replace the stock photos with real faces, real stories, and real life with diabetes.

To see the patchwork quilt of stories assemble real-time, check out the Tagboard in place at WalkWithD.com.

Together, we can create a collage that shows people both in and outside of the diabetes community the reality of life with diabetes.  This is what we do when we write blogs about our experiences, when we create videos, when we Tweet, and when we take on documenting a #dayofdiabetes.  This campaign is help us better understand one another, and to reach outside of the diabetes bubble and drop some diabetes slice-of-life on society as a whole.

Every voice matters.  I hope this campaign helps bring more voices to the community because I love learning from the DOC.  Are you caring for a child with diabetes?  Living with type 2 diabetes?  Newly diagnosed with diabetes?  Living with type 1 diabetes?  Gestational diabetes?  In a relationship with someone touched by diabetes?  There are so many different walks with D.  Connect with others touched by diabetes to understand their journey and to let them know that they don’t walk alone.

This advocacy campaign was developed by the Partnering for Diabetes Change group and runs from today through the end of Diabetes Month (9-15 through 11/30).  The goal is simply to raise awareness for, and highlight the dignity of, life with diabetes.  Walk with me, walk with D.

Belly Ache.

My celiac tests came back negative.  So did my IgA or IgG AGAs (these could be exactly the same as a celiac test but I do not know all the lingo and thus, I remain clueless).  The basic gist is that my body seems to have no trouble at all with gluten.

Except that it totally does.

I don’t know exactly when it started, but I’d say about eight months ago.  That’s when the first nondescript symptoms came into play.  My weight went up a little bit, despite the same amount of exercise and generally eating the same mostly-healthy foods.  My stomach wasn’t upset so much as a little uneasy, and my abdomen felt slightly tender after some meals … and other times without any known catalyst at all.

But I’m not good at keeping track of when things “start to change.”  The only way I knew that my weight was changing was because my clothes fit a little bit differently.  My blood sugars were fine, and my overall health seemed fine.  The decline into “not so fine” wasn’t fast, but really slow and subtle until all of a sudden, I was like, “WAIT.  Just a frigging second.  Why do I feel sick all the time?”

In the last three months, I’ve been acutely aware of not feeling well, and the list of noticeable symptoms grew week by week.  I was exhausted – falling asleep on the couch and having trouble maintaining my normal vampire hours.  I was moody and grouchy, especially later in the day.  (And I’ll just offer this up because I know you’re thinking it:  I’m not pregnant.)  My hands, on some mornings, were tingly and pins-and-needlesish.  And my stomach was angry, but in a really passive-aggressive way.  I had sharp pains in my stomach, but not all the time.  I had wicked bloating, but not intensely all the time.  I just had a permanent belly ache, and it was becoming the norm.

And I was permanently belly aching about it.  The only thing that alleviated symptoms was to cut out gluten, but I didn’t do it consistently enough or in a dedicated enough fashion to really assess if going gluten-free helped.  (Sadly lazy, but true.)  On the whole, our family is about 80% gluten-free, but apparently the 20% was enough to leave a trail of blargh.

Thankfully, my endocrinologist is thorough, so when I saw her a few weeks ago, she ran all the appropriate tests to rule out different this’s and that’s and to help establish certain baselines and other fancy doctor/patient discussion things.  My thyroid function is fine.  My A1C is fine.  My blood pressure is fine.   Nothing came back flagged as an issue.  (Except the whole diabetes thing.)  Which made me feel weird, because the absence of a concrete YES YOU HAVE A GLUTEN SENSITIVITY made me feel a little powerless, like I was just grasping at straws.

In efforts to take some definitive steps towards actually doing something, I talked with Sara(aah) about this issue, and she and I compared symptoms until I felt confident that, even if the tests didn’t flag an issue, there still could be some kind of correlation.  Whether gluten is the root cause or just a trigger, its absence makes me feel much better.  I can’t dispute that fast-becoming-a-fact.

So for the last week, I’ve been running my own gluten-free tests.  And fortunately for my body, it seems to help.  (Unfortunately for my preferences, though, because I love Italian bread and all that jazz.)  It’s been almost a full week now without a whisper of a symptom.  It’s been months since I’ve gone more than a few hours without a sore belly, so this is a step in the right direction.

My plan is to continue to go with my gut and do what makes my body feel better.  If I go against the grain, I’ll feel better.  It’s a diet omnivorous about sticking to, but I know it’s best in the long run. 

… more gluten-free puns once I cook them up.  For now, you’ll have to wheat.

 

Twenty-Eight and Thirteen.

Twenty-eight years ago, I was diagnosed with type 1 diabetes. It’s a moment in time that is so jumbled up with other things – my grandfather had been in a horrible car accident a few months prior to my diagnosis, my older cousin died in a car accident just after my diagnosis – there are memories of people in my family crying and there were so many reasons.  Vague memories of being in Rhode Island Hospital for two weeks, the kid with the spider bite, and practicing injections on an orange serve as markers on the timeline of my diagnosis, but clear memories don’t exist.

Diabetes has always been there.  It doesn’t get easier with time, but it does become more routine and less mentally intrusive.  Either that, or I’ve just become used to the intrusion.

I remember September 11, 2001 very clearly.  I was working in a bank in Newport, RI right near the naval base.  It was my first job after college, and the first plane hit the WTC as I was driving over the Newport Bridge to work.  My coworkers told me about the first plane when I arrived at the bank.  The security guard at the bank told us when the second plane hit.  I remember calling my father because I didn’t know what else to do, and he told me it was going to be okay.  His voice was calm.  Despite his inability to actually influence the events that were unfolding across the country, his words were reassuring and made me feel safe.

I feel very lucky that I didn’t experience personal loss on that day.  My heart goes out to those who did.

The nation is in mourning and I mourn with my country.  Simultaneously, I mark the anniversary of my diabetes diagnosis. I always think about people whose birthdays are on September 11th, or whose wedding anniversaries are September 11th.  I think about the people who lost so much on September 11, 2001. It’s a day where I feel conflicted thinking about diabetes, but it’s impossible not to apply personal bias to life.

I think it’s a day to close the damn computer.  To not read every news article and overwhelmingly sad bit of news being shared.  It feels like a day to be present, to remember to live.

 

So Many Things!

A Friday Six on a Wednesday!  Because why the hell not.

The FitBit obsession.

Renza talks about the messaging of diabetes, and what we can do to get it right.

Here is some damn sneaky research.

Seb is still running. And I’m still supporting the hell out of him, because he’s incredibly dedicated. You can still support him, too.

I am having the hardest time not filling our home with everything Murray, by way of Derek Eads.

“It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.”  Amazing post from Carly about a medical emergency on 9/11.

Are you in the Los Angeles area?  Diabetes Sisters is coming to LA on October 24th, and I’ll be part of the event, alongside some of my favorite DOC people (Hi Cherise, Manny, and George!).  Hope to see you there!

That same weekend, up in Anaheim, CA, the Children With Diabetes team will be holding a Focus on Technology conference.  There will be a whole session on setting up your CGM in the Cloud rig – don’t miss it!

Coming Together as a Community – a great piece from diaTribe’s editor-in-chief Kelly Close.

There is no such thing as a “free food.”  Sort of.  New column at Animas.

“today, i felt parts of the monster within myself.  today, i felt parts of the hero within myself.”  Excellent post from Heather Gabel about the activated patient.

THE SEA OF TREES found its way into People Magazine last week.

And these – THESE VIDEOS ARE AMAZING.  Melissa, you are the Weird Al of the DOC.  :)

An In-Depth Look at the Diabetes UnConference.

Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”  In keeping with that theme, The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes, is on tap for March 2015.

Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, Dr. Nicole Berelos, PhD, MPH, CDE and Kerri Sparling [me ... can you tell this part was a bit of a cut-and-paste from the "about" page on the UnConference website?  Yes ma'am.]  These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.

The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 – 15, 2015, and today, I’m talking with founder Christel Aprigliano about the when, how, and most importantly the why of this ground-breaking event.

Kerri:  I know you.  And think you’re awesome.  For those who haven’t met you yet, who are you, and what’s your connection to diabetes?

Christel:  I was diagnosed with type 1 diabetes at the age of Six Until Me times two. (That would be twelve years old, if you have problems with math like I do.)  I didn’t know many other Type 1s growing up and spent a lot of my teens and early 20s ignoring the physical and psychological issues of having this disease. I had a great medical team that stuck with me and helped me to learn how to live with it, not fight against it.

In August of 2005, I complained to my then boyfriend (now husband) that there weren’t any weekly podcasts about diabetes. Next thing I knew, we had started diabeticfeed, talking about diabetes research news and interviewing people doing amazing things with diabetes. (This interview was in January, 2006 with a woman named Kerri Morrone. We talked about Jettas and diabetes.)

I joke about being a part of the DOC before it was the DOC. While we stopped producing diabeticfeed, I’m doing other things: writing at ThePerfectD, working with other advocates on cool projects like StripSafely and CGMSafely and founding The Diabetes UnConference. While I’m not thrilled to have diabetes, some of my most favorite people in the universe came from connecting with others because of it.

Kerri:  There are a lot of conferences that center around diabetes.  Why the UnConference? 

Christel:  I’ve been to a lot of diabetes conferences and some of the best experiences I’ve had are not in the research sessions or keynote presentations; it’s hallway moments when I’m connecting with another Type 1 or sitting around a lunch table sharing stories and tips. I would leave these conferences wishing that I had more time to talk about the emotional aspects of having this disease and how to live well with it.

During a brainstorming session at the Medtronic Advocacy Summit in January, a question was asked: “What could you do this year in the diabetes community to make a difference?” And the next thing I know, I’m saying that I wanted to have a conference that would bring adults with diabetes together to talk about living with diabetes and learning from each other  – an “unconference.”  (Unconference is a concept made popular by the tech community, where the agenda is decided by the participants during the first hour of the conference. No keynotes, no research sessions, just talking and sharing in a safe environment where there’s no judgement.)

What also makes The Diabetes UnConference unique is that it will bring type 1 and type 2 adults together in one room for a multi-day conference. No other conference does that. We all have non-functioning pancreases (only varying by degree), we have many of the same long-term complications, we all have to deal with depression and burnout and stigma, and we all want to live well with diabetes. We can learn from each other in a safe environment.

Kerri:  What was the scariest thing about taking the leap to put this conference together?  What was the most empowering?

Christel:  The scariest thing has been the idea that I’d be sitting in a huge meeting room in Las Vegas by myself, eating several thousands of dollars worth of food by myself to fulfill the contract that I signed with The Flamingo. I don’t have enough insulin to bolus for it all! (Thankfully, everyone I’ve spoken with about The Diabetes UnConference has been excited about it.)

Really it’s the idea that there people out there who need and want to talk with other people with diabetes and don’t know that this exists. It’s always that way with something new and innovative, isn’t it? We also have scholarships available for those who do want to come but may not have the financial resources to attend.

The most empowering? Knowing that it’s the community that is making this happen. I may have had the initial idea, but without amazing facilitators and participants who want to create this unforgettable experience is mind-blowing. This is about a community helping each other, learning from each other, and connecting with each other. This community empowers me to believe that we can do so much when we listen to each other.

Kerri:  Why should people attend the conference?

Christel:  We spent a few hours each year talking with our healthcare team, mostly about lab results and medication adjustments or treatment recommendations. The rest of the year, we’re on our own. We don’t have time to talk with them about our feelings surrounding living day-to-day with diabetes.

Our community is amazing. We can talk about the emotional aspects of living with diabetes online, but nothing can take the place of looking into each other’s eyes when you talk about fears and burnout. It’s rare to find someone willing to talk about diabetes sexual dysfunction in public, but by creating a safe environment where others might have the same issue and may have a solution? You may not feel comfortable talking about job discrimination online, but in person? I want people to have a safe place where they can express their feelings and get support and hopefully options…

Plus, when the diabetes community gets together, we build these incredible friendships and have an insane amount of fun. Laughter is always in ample supply.

I don’t want people to feel alone with their diabetes. I felt alone for years. That’s why people should attend.

Kerri:  How can people register? 

Christel:  Go to www.DiabetesUnConference.com to register and learn more about the conference. (It’s March 13 – 15, 2015 and being held at The Flamingo Las Vegas. We got great rates for the hotel, too!)

Our scholarship applications are open until September 30, 2014.

We’ve got some wonderful surprises up our sleeve, thanks to our sponsors. Insulet, Dexcom, Roche, and B-D have committed to helping make this conference happen, and I’m so grateful. (That being said, any company who is interested in helping can contact us and be a part of this.)

Kerri:  Thanks, Christel.  And for those reading, the scholarship applications are open until September 30th, so if you’d like to apply, please click over and send in your applicationHope to see you all in March in Las Vegas!!

Follow

Get every new post delivered to your Inbox

Join other followers