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Posts from the ‘Real Life Diabetes’ Category

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.)

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.

 

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!!

Bag of Hope … For Adults?

I’ve always thought Rufus was pretty cute, so when the JDRF link for their Bag of Hope flew by in my Facebook feed, I clicked.  (Rufus is my clickbait.)

According to the website, the Bag of Hope includes (but isn’t limited to):

  • Rufus Comes Home, A First Book for Understanding Diabetes, reference books
  • A JDRF DVD
  • An ACCU-CHEK® Nano SmartView blood glucose meter
  • Informational postcard about the support Lilly Diabetes offers families with a bookmark
  • Lilly Diabetes literature on severe hypoglycemia management
  • A Novo Nordisk key chain Webkey with details on the NovoPen Echo® reusable insulin pen
  • A Novo Nordisk postcard with information on T1D support from novologreach.com
  • A Road ID bracelet for Rufus, as well as a discount coupon for a Road ID bracelet for your child
  • Dexcom® continuous glucose monitor educational brochure and water bottle

I don’t know if the Bag of Hope was a thing when I was diagnosed in 1986, but the fact that they exist now is awesome.  I love this.  I love the thought that a family dealing with a diabetes diagnosis has proof of life after diagnosis, right there in a bag.  It helps connect people to the JDRF, but most importantly, it helps connect people with people.

But if there’s anything we’ve learned in the last 30 years, it’s that type 1 diabetes diagnoses are not limited to kids.  Adults are being diagnosed with type 1 diabetes.  Adults are living with diabetes.  And they still need a good dose of hope here and there, too.

The JDRF has their T1D Care Kit, which is awesome, a PWD can dream, rightt?  What would I stick in a Bag of Hope for Adults with T1D?

Here’s my wishlist [note: already being edited]:

I’m fueled by a bunch of bias with these selections, and I know I’m missing a bunch of things that, once I hit “post,” I’ll have to go back and add to the list, but this is my starter list.

What would you want to see included in an outreach bag for adults with type 1 diabetes?

 

Not A Single Decent Number.

“Huh.  223 mg/dL.  Still.”

This was the mumbled mantra of our vacation to Maine.

Aside from the long drive to Bar Harbor (six hours, plus coffee stops and bathroom stops and “Hey, look at that lobster!” stops), the time we spend in Maine is usually very active.  As a family, we did the hike around Jordan Pond (about 3.5 miles), the hike up South Bubble Mountain (with a stop at Bubble Rock), and spent hours walking through downtown Bar Harbor.  The lure of blueberry ice cream was enticing, but I tried to avoid the sweets and instead downed buckets of iced coffee instead.

And yet my blood sugars were complete shit while we were traveling.

I wanted to blame my infusion set, but I changed it once while we were in Maine and my blood sugar numbers remained crap.  I wanted to blame the bottle of insulin but it was the same bottle that worked just fine at home (and it wasn’t like we microwaved it or let it bake in the car).  I wanted to blame my own actions but I was exercising, checking my blood sugar, pre-bolusing for meals, correcting highs, and sticking with reasonable carb intake.

So I blamed diabetes.

The graphs over the four days we were in Maine were gross.  When I wasn’t high (which was the majority of the time), I was erring on the side of high, teasing the edges of 160 and 180 mg/dL all day long.  Why?  No clue.  Hesitant to up my basal rate in the face of constant walking, I just watched the graph ride the mustard for a few days.  Not convenient, because blood sugars running higher means more water, more “Hey, it feels like someone put cement in my sneakers,” more teeth sweaters, more bathroom breaks.

“Mom, do you have to go potty?”

(Fun when the four year old is asking me, instead of the other way around.)

Sometimes the numbers don’t make sense, and this time, I choose to roll with it for a few days.  There are probably six dozen different things I “could have done” to take a bite out of the high blood sugar trend, but I didn’t want to the micromanagement of diabetes to eat up my brain on vacation.  Instead, I did what I was willing to do and thankfully, now that we’re back at home, my Dexcom graphed has settled back into a more forgiving pattern of Pac-Man dots.

I prefer mountains in the landscape, not in my Dexcom graph.

 

 

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

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