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Posts from the ‘Real Life Diabetes’ Category

Blame the Hormones.

I’m still angry that the UHC/Medtronic issue hasn’t been resolved.  There is/was a ton of discussion about how this is not a decision that takes patient needs and preferences into account but instead seems to cater to what’s best for business needs. “Resolved” would be a reversal of this decision and reinstating the patient/doctor team’s right to decide which therapy is best.  I am very curious to see what the financial disclosure looked like for this partnership. I’m unnerved that the slippery slope is being greased by apathy. Where’s our raised voice?

Sometimes I feel like I don’t have enough skin in this particular game because I don’t have United Healthcare as my insurer and I also have a business relationship with Tandem, but at the same time, I have a full pancreas in the game because I have diabetes. I don’t want insurance companies telling me what’s best for my diabetes; I want that decision made between me and my doctor.

What to do?  I’m unsure.  I know I can share my story about personal diabetes preferences directly influencing health outcomes (hey, like using an insulin pump that fits my current needs in order to achieve an excellent A1C and so-far healthy pregnancy?)  I know I can talk about how access matters, because without it, my life gets ugly fast (she says with the security of three months worth of insulin tucked safely into the butter compartment of her fridge).  But I feel like my frustrations are in a holding pattern of waiting for someone else to do something or suggest something, watching as time slips by and people become more meh about decisions about our health being made by people who don’t live intimately with diabetes.

I deserve the right to choose.  Whether we’re talking about the insulin I take or the pump I use or the meter I rely on, these choices play directly into my health and well-being both physically and emotionally.  I didn’t chose diabetes but I deserve the right to chose how I manage this disease.

I’m still angry about this.  Frustrated.  Confused about what to do next.  And swimming in a sea of hormones that makes me unable to keep my mouth shut and my blog quiet.  What comes next, unfortunately, still remains a mystery to me.

t:slim with a Twist.

Several months ago, I switched insulin pumps.  (Here is the post about the switch, and please read this post about the disclaimer that initiated the switch.  My full disclosure page is here.)  My first impressions of the t:slim pump were drummed up over a year ago, after trialing one for a few weeks, but my real t:slim immersion came once I switched in full.

Funny thing is the timing of that switch.  When I packaged up my Animas pump in favor of a Tandem one, I had also just found out I was pregnant.  Which means that I was adjusting to life as a pregnant PWD and also to a new insulin pump.

tl;dr – There’s stuff about the t:slim pump I wouldn’t have appreciated so soon were it not for the baby-en-route.

Because dude, if I had switched a year ago, I would have been all, “Oh, it looks so cool and the touchscreen is badass, and the fact that it’s flat all the way across the front makes it easier to tuck into my clothes,” making the wearability the most important part of my switch.  Yeah, wearability matters, but not as much as ease of use and OUTCOMES does these days.

(None of the following is medical advice; remember, I’m not a doctor and currently can’t even see my feet in full these days.)

#tslim #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Entering a bolus is stupid-easy.  And this matters, since every blood sugar counts double these days (for me and for my growing son).  It takes me a few seconds to unlock the pump and bang out a bolus, and only a few extra seconds to add crucial information like my current blood glucose and the carbs I’m consuming.  Part of my over-arching problem of diabetes management is keeping apathy from creeping in; the all day, every day tasks of type 1 diabetes wear on me in a way that prevents me from taking advantage of everything technology has to offer.  Oh, so an insulin pump can calculate my insulin on board (IOB) and the dose I need to bring down a blood sugar back into range, or what’s needed to cover X amount of carbs?  HANDY INFO!  The only thing I have to do is enter that information and it spits out a result?  ALSO HANDY.  But having to scroll forever to enter information is enough to keep me from entering that information.

It’s pathetic, how often I was taking 2u of insulin because it seemed “close enough” to cover what I needed, instead of spending the time calculating the proper dose.  Being able to input this necessary information in a matter of seconds makes me actually DO IT.  My endo is very pleased with this uptick in my management, and my A1C 100% reflects these efforts.

#tslim #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Changing my basal rates is stupid-easy.  Being pregnant means that my insulin needs are changing rapidly.  First trimester brought about insanely sticky hypoglycemic events, which equaled out to dialing down my basal rates significantly and making frequent use of the temp basal option.  (Again, it’s about the button pushing – it takes me seconds to set a temporary basal rate.  Ease of freaking use FTW.)  Second trimester showed a steady climb in my weight and insulin resistance, with a marked rise in my basal rates and my insulin:carb ratios.  And now, at the beginning of the third trimester, shit is changing all over the place, with some basal rates going down a little bit and my insulin:carb ratio almost double what it was pre-pregnancy.  There’s a lot of math going on in my baby-building body, and being able to change my rates after reviewing my data on Diasend and t:connect makes for easier management.

Holding more insulin is stupid-easy.  The t:slim holds a ton of insulin (300u) and as my pregnancy progresses, I may need that cartridge to be filled in full, instead of the half-way filled I’ve been doing for the last six months.

#tslim #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Seeing my status is stupid-easy.  One button push shows me how much insulin is on board, how long it will be active, shows how much insulin is left in the reservoir, the percentage of charge left in my battery, and the time.  Oh, and what day it is.  (This matters, as the day and time are bits of information that are being eaten regularly by intense pregnancy brain.)

Not everything is stupid-easy.  This isn’t a list of perfect moments with my insulin pump.  There are pros and cons, and the time it takes to change out the cartridge and infusion set is still cumbersome.  I also am not a fan of the luer-lock tubing bulge, as it takes on a “third nipple” appearance more often than I’d prefer.  And I’ve seen more occlusion alarms with the t:slim than I did in the past.  But I’ll these cons over the pros, especially when I review my lab work from Joslin and see how strong my numbers are.

Being more on-target through my pregnancy is not stupid-easy.  Let’s not make my successes as a pregnant PWD the product of an insulin pump, shall we?  I am working my ass off to make sure my body and my baby are healthy, with just over 11 weeks left to go before we release this particular Kraken.  But having a piece of technology that alleviates the bolus math angst, makes it impossible to forget whether or not I’ve taken my basal insulin, and being able to bang out a correction dose in a matter of moments helps take the pressure off, at least a little bit.

… even if the beeps and boops might startle my developing fetus.  (If that study has any truth to it, my poor kids are screwed.)

 

Diabetes Blog Week: Tips and Tricks.

Tips and Tricks:  Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Let’s jump right in and say that every suggestion I have is borderline dangerous.  Why?  Because I am someone without a medical degree writing about my personal diabetes best practices on the Internet.  That said, anything you read here that’s considered a “tip” or a “trick” is not something you should try without talking to your doctor.  Because I am not a doctor, nor am I your doctor.  And this morning I let the coffee pot run without a coffee cup underneath the spout thing.  Consider your source(s).

That also said, I have close to thirty years of experience with type 1 diabetes, so there is more than a shred of validity to my scope of experience.  If something resonates, party on.  But don’t take any of this stuff as medical advice.  Please.  For the love of god.

KERRI STOP WITH THE CAVEATING OKAY FINE.

Tips and tricks.  Here’s a bulleted list of weird shit I do to make diabetes less intrusive and more malleable:

  • I put Toughpads underneath my Dexcom sensors to keep my allergic reaction to the adhesive at bay.  This works reasonably well – the blistering welts have stopped, but long-standing patches of scaly, raised skin remain for weeks, if not months, at a time.
  • Re: the scaly skin bit, I sprayed anti-fungal spray on the most irritated patch of skin this morning.  Mostly out of frustration, but also because I read somewhere that it might help.  If it does anything useful for healing my skin, I will share that information.  For now, please don’t judge me because I off-labeled the shit out of athlete’s foot spray.
  • Out of pockets?  Wear your insulin pump in your bra (but beware those pesky disco boobs).
  • YOU GUYS THIS t:slim CLIP IS THE BEST.
  • During all three pregnancies (and most notably the two that made it past the first trimester), I downloaded my diabetes devices and examined the data.  This is cumbersome and annoying and one of my least favorite diabetes to-do tasks but it HELPS.  Citing it as a trick or treat tip feels goofy because I should be doing this anyway, but I usually don’t.  And now I do.  And it helps.
  • I charge my devices when I shower.  And since I am a hygeine-freak, I shower very regularly.  I charge my t:slim every three days or so (usually not letting the percentage of charge fall below 50%), and my Dexcom receiver (using the G4, per my doctor’s preference, until I deliver the baby) once or twice a week.  I charge my Verio Sync meter once a week, at best.  A full battery is exciting to me.  Which illustrates how much I need to leave my house today.
  • I keep a charger thing in my car.  And Tandem provides a snazzy one with their pump, which I keep in my glove compartment.  (Hey, disclosure.)  Seems like overkill when you don’t need it, but when you do need a power boost, it’s beyond handy.
  • I also keep a few slips of Opsite Flexifix tape in my wallet.  Has been busted out as necessary on dozens of occasions.
  • And while they are most noted for keeping cans of beer … safe?, I guess? … I have an insulin bottle rubber sleeve to protect the vials.  Has kept more than a few bottles safe from the bathroom tile.

Do you feel tipsy now?  All full of tricksies?  There you go.

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

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