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Posts tagged ‘diabetes’

Looking Back: Taking the Plunge.

Summer is coming to a close over here and as we prepare to send Birdzone to kindergarten, I am spending the last few days of summer with my child velcro’d to me.  In an appreciation for family and for how mine handled diabetes as I was growing up, I wanted to look back at a post from five years ago where my aunt takes a stab (ha?) at giving me my insulin injection.   My immediate and extended family both took excellent care of me as a kid, and I’m glad that diabetes didn’t prevent sleepovers.

*   *   *

I’m from a very big family – my mother is one of seven and my dad is one of five, for starters – so I had plenty of relatives who used to babysit for me when I was small.  Overnight visits at my aunts’ houses were part of the fun, and I always looked forward to them.  (Because – let’s be honest – I liked that they let me put makeup on them and do their hair.  My pretty aunts were like living Barbie Doll heads to me.)

Things changed a bit when diabetes came into the picture.  Sleepovers weren’t as easy to manage, because now we had to juggle insulin injections, blood sugar tests, and being on the lookout for high and low blood sugars – especially back in that first year when everything diabetes-related was so new to all of us. I was still a little kid, and now all this medical stuff, too?

When I was first diagnosed, I didn’t do my own insulin injections.  At the outset, my parents did my injections for me, but after a few months, my extended family started to learn.  I think about it now, having baby-sat for my nieces and nephews and little cousins, and I can’t even picture that learning curve.  I’m so grateful that my family came together to learn to deal with diabetes, instead of leaving my mom and dad as the only ones who were “in the know.”

One of my earliest memories with diabetes is of me waiting on my aunt’s couch while my mother tried to explain to my aunt how to administer my insulin injection.  And every time I recall it, it makes me laugh.

“You need to uncap the syringe, check for any air bubbles one last time, and then pinch up where you’re going to stick the needle.  Once the needle is in, you press down the plunger and pull the needle out.  No problem!”

My aunt was nervous.  “I pinch the skin and then put the needle in?  How fast do I put the needle in?”

“Pretty quickly,” my mom responded.  “Don’t think about it.  Just jab it in there, as gently as you can.”

“Okay, so pinch, jab, plunge, remove.  Got it.”

“Great, so are you ready to give it a try?”

(Mind you, the entire time they’re debating this, I’m face-down on the couch with my pants pulled down, waiting for the insulin injection to be given into my seven year old butt cheek.  Another truly classy moment for me.)

My aunt came towards me, brandishing the syringe like a hot poker.  She uncapped it nervously, pinched up the top of my hip, and said (and I remember this clearly), “Ready, Kerri?”

“Yessh I amph.”  I said into the couch cushion.

“Okay, here we go!”

She expertly stuck the syringe needle into my skin, and I barely felt the pinch.  And then she pulled the needle quickly out, letting out an “Oooh!  I did it!”

My mother sighed.

“You didn’t push the plunger down.”

“What?”

“The plunger.  To dispense the insulin?  You didn’t push it down.  You just stuck her with a needle and then pulled it out again.”  I could hear my mother trying not to laugh.

“Oh shit!” my aunt exclaimed.

I laughed, despite the fact that they were about to advance on me again with that syringe.

“You shed de esh word.”

Guest Post: Keep Calm Once They Cover Dexcom.

Today, Colleen is taking over my blog while I’m taking a few days off.  And I love her introduction bio so much that I’m pasting it in without edits.  Colleen is terrific, opinionated in a way I respect deeply, and today she’s talking about the importance of having access to a continuous glucose monitor (CGM) as she ages.  Take it away, Colleen!

*   *   *

I signed up for Medicare this year. Deep breath. (I’m having a really difficult time believing that I’m 65.)

I’m not using Medicare (yet) because I’m still working. I like my job. I like my insurance. I like my five minute commute. But mostly, I like my Dexcom CGM (Continuous Glucose Monitor).

I always thought I’d be retired, lazing around, maybe playing some tennis.

Not really, I’m not lazy and I haven’t played tennis in a gazillion years. But, I really was looking forward to doing some volunteer stuff, especially working with kids who have learning difficulties. I’m a former Special Education teacher and I love seeing/helping kids to “get it.” Literally watching that invisible light bulb start shining when they would “get it.”

Instead, I’m working so that I can keep my Dexcom CGM.

Not to worry. I’m not suffering – I work as a church secretary, an absolutely delightful job!

Several years ago, when I started seeing a dermatologist, he explained that removing those things growing on me would be covered by my insurance because, “It’s covered by Medicare.” I was insulted and stated, “For heaven’s sake, I’m NOT on Medicare.” He then explained that if it was covered by Medicare, then insurance would pay for the procedure. “Oh…”

And now, turning 65 – my own light bulb has turned on. But it’s not going anywhere.

I remember talking with my primary care physician at an appointment once and saying how I work so hard to maximize my use of health insurance. I am careful to coordinate lab work with her and my endocrinologist. I keep up with scheduled appointments. I try very hard to be a wise consumer of health insurance. And she calmly replied, “You’re cheaper to Medicare if you’re dead.”

Well, that sucks.

Maybe – but – the cost of keeping me alive might be a sh**load more (Kerri said I could use bad words) [Editor's interjection:  You can use all the words you'd like, Colleen.]  without my CGM.

And I truly believe that soon – Medicare will figure out that the expense of a CGM is whole lot less than the expenses of ambulances and ER visits and hospitalizations.

There is no public transportation up here in the woods so, I have to drive.

I almost always (I’m being honest) (95% of the time!) check Dexcom before I drive anywhere. I frequently have to make short trips during the day for work and Dexcom has certainly kept me in my office/the parking lot sipping on juice before leaving.

I hate shopping. Yes, really. Shopping irritates me. Shopping and going low is really annoying. The nearest real mall is over an hour away and there have been times that I’m pulled over at an exit or a rest area because Dexcom beeped at me. More juice … (Not easy in the winter when it’s frozen. Yes, I have glucose tablets, also.)

We get a whole lot of snow up here on our hill. And it’s not plowed every hour on the hour. There are times we literally cannot get out (or in). I’ve checked with our local police to ask – what would happen if I needed an ambulance in the middle of a snowy night? The answer – They’d hike up our hill with a sled to get me out if needed. Scares the sh** out of me.

Way back when I was diagnosed, I knew I would want a pump. At that time, you had to have been on MDI (Multiple Daily Injections) for a couple of years before they (insurance) would even think about approving a pump. By the time I was ready to start pumping, it wasn’t that difficult.

Thank you to everyone who advocated for pumps for all of us who want one.

Way back when, Kerri was one of those people writing about her fight to get a Dexcom CGM – with letters and refusals and more letters and more proof and finally – Dexcom. By the time I was ready to start using a CGM (I always swore there was NO WAY – have you seen the needle in those things?), getting a CGM wasn’t as difficult. (That needle? Not an issue.)

Thank you to everyone who advocated for CGMs for all of us who want one.

And now – those of us who are and will be the d-elders need to be able to continue using or begin using CGMs for better health and safer living. And your help is needed. You’re not just helping the older d-people. You’re helping yourself. Because you know what? We’re all leading healthier lives even with Diabetes because we work hard to stay healthy. If a CGM helps, we should all have access to that.

How can you help?

JDRF makes it easy. Go here:

Help others, and help your future selves -  and the children who will grow up – just by contacting a few of your state’s senators and representative.

It’s a win-win for all of us.

*   *   *

From Colleen:  “I’m Colleen and I have type 1 LADA – Latent Autoimmune Diabetes in Adults. Diagnosed at the age of 55 (yes, really!), I was just a tad surprised. My husband and I live and work in New Hampshire and even enjoy the snowy winters. We could be retired but, the need for health insurance has us both working at a local church. Yes, together. Yes, we’re surprised. No, we haven’t killed each other, yet.  Hope you’ll introduce yourself and it’s nice to meet you!”

Please say hello to Colleen, either on this post or at her blog, D-Meanderings.  For more on the goal of covering CGMs for Medicare, check out these links:

Change Your Lancet.

This morning I woke up
And reached right over to the table.
Grabbing my receiver,
I saw my blood sugars stable.
Meter confirmation
Showed a 107 number
And that things had been quite steady
Overnight, while I did slumber.

(“While I did slumber?”
Yes, I used that phrase despite it sounding formal.
It’s fun to turn a stodgy phrase
To make sleep sound less normal.

“Okay, go on and tell you story,”
Thanks.  I almost blew it.)

I noticed, when I pricked my finger
That the lancet got stuck into it.

It was gross.  There was a shunk
As the lancet then deployed.
And the OUCH when it went in
Had me less shocked than quite annoyed.
Because I CHANGED that stupid lancet
Just the day before the last!
It wasn’t stale or all that old.
How dare it give my thumb such blast?

And not only did it sting
But the em effer didn’t bleed.
In order to check sugars,
“Change the lancet” was the need.

I gave it glance with both my eyes
After I took the lancet out
The tip looked worse for wear.
So what the hell – I swapped it out.

I tried again, this time determined
Not to let the prick be useless.
I resolved to change my lancet more
Lest diabetes think I’m truceless.
When the needle went in my finger
I squeezed it for a spell.
And blood came from the wound.
… and from a random spot as well.

What’s the moral of the story?
How can I work my D smarter?
Here’s advice for all the ages:
Change your lancet, or squeeze harder.

 

Gluten-Free Bread Showcase.

For those who are unaccustomed, gluten-free bread is kind of terrible.  It’s like the bread can’t commit to being bread.  It starts out strong – looks good, smells good – but once you try to make a sandwich out of that sucker, it falls apart into a crumbly mess in a matter of milliseconds.  For the last year, I’ve been entirely gluten-free (and I feel better for it – more here on the how and why), and over the course of my gluten-free adventures, I miss proper bread the most.

There are some decent options, though, and they’ve been tested by adults (Chris and I) and kids (Birdy) alike.  Here are some of the top contenders in the Sparling household:

Udi’s is the first kind of gluten-free bread I’ve ever tried, and I want to like it more than I actually do.  It’s not bad, but it’s my least-favorite option.  The pieces of bread themselves are tiny, the bread can’t hold up unless it’s toasted, and when it comes into contact with peanut butter, it becomes sludgy almost immediately.  But it will do in a pinch, and the other Udi’s options are infinitely better than their actual bread.  (Like the hamburger buns.  Those are legitimately awesome.)

Rudi’s is slightly better than Udi’s, but the similarity in names confuses the hell out of me.  Are Rudi and Udi brothers fraught with conflict who once had a unified bakery but then split off and created their own gluten-free fortresses?  Whatever the case,  Rudi’s bread is slightly studier than Udi’s but with the same “better when toasted” consistency.  The pieces of bread seem slightly bigger than Udi’s on the whole.  This brand is a little better but only marginally.

Three Bakers was my favorite bread until two weeks ago (more on that in a second).  This bread is decent in size, better than Udi’s or Rudi’s in consistency, and doesn’t have to be toasted in order to be tolerated.  This bread can hold up to cold cuts and doesn’t shrink and die when touched by condiments.  Three Bakers hold up pretty well when compared to the other kinds.  And it makes bangin’ French Toast.

 

For a long time, the frustrating fragility of gluten-free bread had me baking my own bread, and the preferred bread mix was Pamela’s.  While I’ve made my own bread from scratch before, it takes a reasonable amount of time, and Pamela’s mix on the gluten-free setting for the breadmaker works really well.  It’s thicker and more moist (worst word ever but it applies here) than the store-bought breads, but it falls apart pretty easily when not toasted.  (Sensing a theme here?)

Two weeks ago, though, I found a real winner.  A REAL WINNER.  The Schar brand of bread popped up in the gluten-free section of our local grocery store and holy shit, this stuff seems legit.  It can hold up without being toasted, which is the first kind of GF bread I’ve found capable of unlocking that achievement.  It has a consistency and texture closest to regular bread (in my opinion) and it stood up to the sandwich-in-a-cooler-on-the-beach-for-five-hours test.  I realize I’m holding this stuff up against a strange standard of failure (“This bread sucks the LEAST!”), but it’s been the most successful substitution I’ve found in my 12+ months going gluten-free.

The main drawback to all of these options?  They are pricey.  $5 or $6 for a loaf of bread is ridiculous, which prompts us to buy less of it and embrace other non-bready options more.  But the gluten-free world keeps expanding, and as someone who dove in headfirst and ditched a year’s worth of bellyaches, I’m wicked grateful for these options.

Diabetes Lifehack: Travel Tape.

Sometimes it’s an insulin pump infusion set that starts to peel back.  Other times it’s a Dexcom sensor that gives up on the edges and needs reinforcement.  And there are times when you just need a band-aid for one of those rogue blisters that pops up.

Which is why I keep little slips of Opsite Flexifix tape tucked into my wallet.  Because you never know when you might need an (opsite flexi)fix.

#diabeteslifehack

A photo posted by Kerri Sparling (@sixuntilme) on

(There you go, Opsite.  Your new tagline, perhaps?)

 

Panel: Challenges in Healthcare Leadership.

Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.

My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with:  medical device companies, diabetes advocacy organizations, magazines, publishers, etc.  I like the work that I do and I like the organizations I work with.

But, but, but.  Who do I work FOR?

The people I work for are people touched by diabetes, and to be honest, that starts with me and my family.  (My oxygen mask on first, right?)  One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None.  I decided to get involved when I was in my mid-20s.  Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.

I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes.  That absence of community drove me to seek out my peers and find people with whom I could be weird together.  And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.

Spent some quality time yesterday with the EMHL class of 2017 at Brown University. #rhodypride

A photo posted by Kerri Sparling (@sixuntilme) on

I spoke about the positive influence of patient communities a lot yesterday.  When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to.  “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done.  It’s not medical advice but it is honest and shows what illness looks like in the wild.  Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal.  And that’s what we all want, right?”

Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege.  “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to.  My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from.  I need to remember that and raise their voices, whenever I can.”  (See also:  Spare a Rose.  See also also:  CGM Medicare Coverage.  See thrice-so: DPAC)

I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists.  Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones.  Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively.  Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.”  Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.

One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game.  We’ve always had skin in the game.  Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.

I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes.  This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.

A Matter of Apologies.

“I was low.  I was frustrated because of the low blood sugar.  I’m sorry.”

“It’s okay,” and I can tell she means it by the look in her friendly, brown eyes.

I used to be very terrible at saying, “I’m sorry.”  I would hold on to frustration and anger in a way that was not good for me or anyone around me, making a grudge or the need to feel like I “won” the disagreement take precedence over a relationship.  I’d keep “I’m sorry” under my tongue because I didn’t want to admit that I’d done something that hurt someone’s feelings.  I felt embarrassed to admit my shortcomings.  It felt awkward and bad.

It took a long time for my head to figure out that my heart was better off if I let the sorry fly, but once I came to that realization, I tried to embrace as often as I could.  (I also had to work on the “does this interaction make me better or worse as a person?”  This is still a work in progress.)  Now I’m less terrible at saying, “I’m sorry,” and I feel better for it.

As much as I hate to admit it, my blood sugars are not only influenced by my emotions (stress, anyone?) but they influence my emotions, as well.  The way my numbers make me physically feel can cause me to act like a total crumb.  It’s another reason to be aware of what my blood sugars are, and if I enter the Crumb Zone, apologize for it.

I find myself apologizing to my daughter at times for entirely blood sugar related reasons.  Sometimes I snap because I’m taking yet another bolus to correct yet another high and my body is riddled with sugar and rage, and I will be far less than patient with my little one as a result.  Other times I raise my voice because I’m trying to treat a low blood sugar reaction and she’s at my elbow asking to [insert rogue request from active 5 year old here].  Losing my patience during the course of run-of-the-mill parenting is something I am not proud of, but losing my patience because diabetes is leaning on my parenting style is something I want my kid to understand as best she can, because I don’t want her ever thinking my seemingly random outbursts are tied to her in any way.

It’s a weird balance between feeling like I’m blaming diabetes for my actions and simply explaining my actions.  Am I in the Crumb Zone (or Mayor of Crumb City, if you’re nasty) because of diabetes?  Nope.  Diabetes doesn’t get credit or get blamed.  But sometimes this disease is part of the explanation, and I want my family to have a sense for how, and why, I’m wired a certain way.

There are moments when Birdy assumes my attitude problem is diabetes-rYes, this whole post was an excuse to use the Siah-in-a-banana picture again.elated when it’s not, and I’m forced to fess up.

“Are you in a bad mood because of a low blood sugar?” my daughter asks, pointedly.

“Not at the moment.  Right now, I’m in a bad mood because I just realized I left a banana in the car while I was on my trip last week.  And now I’m afraid to open the door and confront the banana stink.”

“It’s okay,” she says.  And then adds, “Ew.”

 

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