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Posts from the ‘Psychosocial Support’ Category

Focusing on Happy.

Clouding on the Road.

The CGM in the Cloud concept matters most to me when I’m traveling alone.  While I was in Orlando last week, my bedside table looked like this at night:

A Moto G hooked up to my Dexcom G4, sending CGM data to the cloud.

And that data being routed to my family back in Rhode Island and to my wristwatch.

A few questions I heard from people throughout the conference:

“What peace of mind does it give you that the CGM itself doesn’t?”

I slept better with this thing rigged up.  It’s a clumsy set-up (all those cables and wires and plugged-in-ports) but the ends justify the means.  Chris could see my data while I was sleeping, and his system would alert him to any wicked overnight hypos, should they occur.  That’s some good peace of mind for me when I’m a plane ride away from my support system.  While my overnights are usually unnervingly spot-on (nailing down my overnight basal has been the luckiest break ever, and I blame my in-range A1C on spending those 6+ sleeping hours in-target), low blood sugars still creep in and can cause chaos.  I liked being hooked up while I was sleeping.

“Why wear it connected throughout the day?”

It was more convenient than I thought to have the graph running on a watch.  I didn’t realize how often I go digging through my bag for my Dexcom receiver until I spent a few days not doing that.  I like the seamless flick of the wrist and the “Hey, that’s my number,” and moving one sentiment.  But, to be honest, I think I kept it hooked up during the day partly because I knew people would have questions/want to see the rig and I wanted to be able to show them. Nothing answers questions better than seeing the system “in the wild.”

“Why don’t you wear it all the time?”

What made it less convenient to keep the system “clouding” on this trip is that I haven’t purchased a data plan for the Android phone yet, and have been running it off of open wifi signals (the hotel, convention center, restaurants, etc).  That’s a definite hurdle, and since the system is most important for me to run while I’m sleeping during travel (or home while Chris is traveling), using wifi seems to work best for my needs.  It’s simple to connect/disconnect from the cloud system as I need to.  I’m also hesitant to tax the USB port on my Dexcom receiver because I don’t have a spare receiver and I also don’t want to break the device I have come to rely on.

“Do you really want your family seeing your numbers all the time?  What about your privacy?”

Really good question.  This is why I’m looking forward to the Dexcom Share application, because that app will allow me to revoke access to my data if I choose.  As it stands now, my CGM data is clouded to a site that I have shared with my husband and my mother, and if I’m hooked up to the CGM in the Cloud system, they have access to my data.  It’s not a password-protected application.  I would love to see the data protected by some kind of password system.  I appreciate the option to share the data for my safety, but not for their scrutiny.  However, when it comes to the overnights while I’m traveling, I don’t care who sees those numbers.  Their having access makes me feel less vulnerable, and I’m willing to sacrifice my data privacy for those 6+ hours.

Clouding CGM data is a work-in-progress.  Much like life with diabetes.

#wearenotwaiting

 

 

Snapshots: Fell Off.

Until next time.

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.

 

 

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