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Posts tagged ‘insulin pump’

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)

Miss Idaho: #ShowMeYourPump!

Have you heard?  Sierra Sandison just earned the crown as Miss Idaho, and she accomplished her goal with an insulin pump clipped to her hip.  Yes, that’s right – another Miss America contender has hit the stage with diabetes front-and-center.  And since winning Miss Idaho barely a week ago, Sierra has already brought type 1 diabetes to the national stage via stories on NPR, People Magazine, Buzzfeed and a host of other media outlets.

Diagnosed with type 1 diabetes just after she turned 18, Sierra is helping empower people with diabetes to wear their devices proudly with the #showmeyourpump hashtag as her rallying cry.  Today, Sierra is sharing some some of her diabetes story here on SUM.

Kerri:  Sierra, you were just crowned Miss Idaho and are off to compete for the Miss America crown this September.  Congratulations!  And you’re also living with type 1 diabetes!  Can you share a little bit about your diagnosis story?

Sierra:  My dad is a family practice physician, but I was diagnosed shortly after my 18th birthday and had recently moved out of my parents’ house, so we didn’t catch it as quickly as we could have if my dad had been able to see the symptoms. Fortunately, I was never hospitalized!

I was extremely thirsty and hungry! It finally got to a point where it was ridiculously inconvenient. One day, I was snowboarding, and had to buy water bottles every time I got done with a run. I would drink them on the way up the chairlift, and then have to “relieve” myself at the top, and then again when I got to the bottom. Then, the cycle would repeat. On the chairlift, I called my dad and said, “Dad, I have a problem. I am an aquaholic. Can I go to rehab for a water addiction?” He immediately knew what the real problem was, since my late uncle and grandpa had diabetes, and my second cousin does as well.

However, when it was confirmed, and 550 [mg/dL] popped up on the glucometer, I bawled and bawled and bawled. A diabetes educator came and spoke to my class the next day, because I was terrified that they would make comments along the lines of “it’s your fault”, “maybe if you ate healthier…”, etc.

Kerri:  I saw on your Facebook profile that you were proudly rocking your t:slim insulin pump onstage at Miss Idaho – were you nervous about showing the judges your diabetes device?  What made you decide to go for it and share openly?

Sierra:  I’m going to be completely honest, it still scares me sometimes to wear my insulin pump. Getting the confidence to wear it on stage has been a journey.

When I was first diagnosed, I hated diabetes so much. I just tried to ignore it, and let my blood sugar be high until I felt to sick to deal with it. It was awful. In July, my friend asked me to compete in our local pageant, Miss Magic Valley. I met the director for lunch, who told me everything that was involved. When our food arrived, I pulled out my insulin pen, and she immediately told me about Nicole Johnson, Miss America 1999.

Nicole wore her insulin pump on the Miss America stage while she competed for her title. Knowing that has had such a huge impact on my confidence. As a young woman, we often long to look like the girls in the media: movie stars, super models, cover girls, etc. The media gives us unrealistic expectations, and most of us will never measure up. We soon begin to think that, because we are different from those girls we see, that we are somehow worth less, or less beautiful than them.

What a disgusting lie! Unfortunately, I don’t think we can ever completely escape the influence the media has on us. I hope that someday the media can be filled with a variety of beauty! That is one of the reasons I love the Miss America Organization:  Nicole Johnson rocking her insulin pump in 1999; Alexis Wineman, the first woman with autism to compete at Miss America, in 2012; Heather Whitestone, the first deaf Miss America in 1995; Nicole Kelley, Miss Iowa 2013, was born with one arm.  And countless more women who have inspired the country while competing at Miss America!

So, eventually, after thinking about, researching, and following Nicole Johnson, I got the guts to get a pump. However, it took me another year to compete with it.

This year at Miss Idaho, I was honestly terrified. I was nervous the judges wouldn’t ask me about it in my interview. I was nervous that the audience would be confused. I was scared the other contestants would think I was using it to try and get pity from the judges.

I walked into my interview, and the very first question was about diabetes. It was a huge relief. “I can do this,” I thought, until I walked out of the dressing room, and was immediately asked about the pump.  The person who asked me was Miss Idaho’s Outstanding Preteen, McCall Salinas. While my heart sunk when she first pointed it out, that quickly changed when she explained she was a diabetic, but was too scared to get a pump because of what people would think.

That was it. I was doing it. I was going to wear the pump for McCall, no matter what people said or thought, and no matter how badly it may affect my score. I walked on stage, and the rest is history.

Kerri:  Since the competition, you’ve also encouraged others to wear their devices proudly, with the #showmeyourpump hashtag/mantra.  What’s the response been like?

Sierra:  It has been so overwhelmingly AMAZING! You have to understand, I am a completely normal person. My sisters and I are getting embarrassingly excited about all my new followers and likes. It is so crazy how many people were so inspired by me doing such a simple thing! I was prepared for a lot of negative backlash for competing in a beauty pageant with a swimsuit competition involved, but as far as I know, most everyone has been positive!

The response to my #showmeyourpump campaign has been crazy as well! I can’t keep up—it is unreal! We have had responses from diabetics all over the country, and from all over the world. I have also heard from kids with hearing aids, feeding tubes, etc. How awesome that it is having an impact even beyond the DOC! Keep the pictures coming(:

Kerri:  Is diabetes advocacy part of your competition platform?  Can you tell me about how you plan to use your voice to improve diabetes awareness?

Sierra:  It was my original platform, but before I was Miss Idaho, I didn’t have much of a voice. My platform now is actually a program my sister and I started for kids with developmental disabilities. We put on sports camps for them! The program is called Possibilities for Disabilities. Originally, we just wanted to give them the chance to participate in the fun extracurricular activities their peers do, because we think that sports and music are important to adolescents in finding their identity, discovering their passions, and building confidence. What we soon realized is that the program was doing so much more! We have students at the high school volunteer as “student coaches” and work with the campers. By placing the kids with disabilities in a fun, empowering, positive environment with their peers, it breaks down barriers and helps the kids form friendships with their peers. This has transformed their lives more than anything else! The entire culture of the high school we work with has changed towards the kids in special ed. They have formed identities beyond their disabilities, and are accepted more than they ever would be at another school. I am so excited to have the opportunity to spread Possibilities across the state, and even across the nation, as Miss Idaho!

With my diabetes, the message I try to get across to everyone I come in contact with is this: whatever obstacle they are facing in their life, they can not only overcome it, but use it to become a stronger person, as well as impact the lives of others. There is one girl in my camp who is a high functioning autistic, and has decided to put on a Possibilities camp for her senior project next year. I am so excited. She is doing exactly what I hope I can inspire others to do: take their challenges and use them to serve others.

I love Possibilities for Disabilities, but now that I have a more powerful voice as a diabetic, I am ECSTATIC to use it! Who said I couldn’t have two platforms?

Kerri:  There’s a lot of discussion in the diabetes online community about diabetes stigma.  Have you ever been discriminated against in terms of diabetes?  How did you handle it?

Sierra:  Before my family and close friends were educated, there were some hurtful comments about how my diabetes was my fault, because of the confusion between type 1 and type 2. Aside from that, I cannot recall any other negative experiences, aside from confused and slightly cold questions about my insulin pump. I have been very fortunate!

Kerri:  How can the diabetes community help support you as you make your moves for Miss America?

Sierra:  In a couple weeks, all the Miss America contestants will be publishing their “People’s Choice” videos. America can vote one contestant into the top 15! Only the top 15 get to compete in the televised portion of the pageant. It would mean the world to me if the diabetic community would help me win People’s Choice to guarantee that I have the opportunity to compete with my pump on national television!

Kerri:  Sounds like a plan, Sierra.  Is there anything else you’d like to share?

Sierra:  I am so happy I can have a voice to inspire others who are similar to me, and hope to serve the diabetes community to best of my ability this year! The best way to reach as many diabetics as possible is through the DOC and social media! You can follow my year as Miss Idaho in the following ways:

Twitter: @sierra_anne93, @missidorg
Instagram: missidahoorg, sierra_anne_nicole
Facebook: Miss Idaho Organization

I have also had a lot of people ask me about sending letters and gifts! I adore snail mail, so everyone is welcome to send mail to:  Sierra Sandison, P.O. Box 6159, Twin Falls, ID 83303.  I love you all so, so much! Thank you again for all your support!

Thanks, Sierra!  You can follow more from Sierra on her personal blog, Miss Idaho, and via the #showmeyourpump hashtag.  We’ll be following your journey to Miss America this fall, and supporting you along the way!

Guest Post: The One Diabetes Rule I Always Follow.

Thanks to the magic of the Internet and how words can travel from CA to RI by email faster than a sneeze, I’m happy to be hosting a guest post from friend and fellow PWD, Christopher Angell.  (You may remember him from such glucose tabs as GlucoLift and such guest posts as the one about decAY1c.)  Today, he’s writing about the diabetes rules he’s willing to bend and the one he always follows. 

*   *   *

When I was first diagnosed and started my testing and insulin regimen, I did everything by the book. I disinfected test and injection sites with alcohol swabs (no longer recommended). I used a fresh lancet for every finger stick, and I always removed and properly disposed of my pen needles after each injection. I was a model patient (except on those nights when I washed down a giant bowl of popcorn and a chocolate bar with a bottle or so of pinot noir…).

Over time, however, my diligence started to show some cracks. After one too many meals out where I fished out my Humalog pen only to realize I was out of needles, I started leaving my last used needle on, and only changing it right before my next injection, so that worst case, I wouldn’t have to skip dinner or run home and force everyone else to wait while I retrieved my supplies. After using that “emergency needle” one or two times with no adverse effect, I got more and more lenient, until I was only changing a needle when it started to hurt (or required noticeably more force to do its job). Then of course I figured that if needles could be treated like that, lancets certainly could too- they were far less delicate to begin with, since they weren’t hollow.

When I started on a Dexcom CGM, it didn’t take me long to realize that those expensive sensors could have their lives prolonged without consequence as well, and I was regularly getting more than 14 days out them (I still do). Unlike reusing the relatively cheap lancets and needles, that had a real financial advantage. I also quickly learned that I could save my skin some wear and tear by using sites other than the FDA-approved abdomen. In fact, now I can’t remember the last time I wore a sensor there.

Even insulin, I discovered, was often (though not always) good well after its expiration date, or its 30-day window after opening, and subjecting it to a life outside the fridge was usually surprisingly benign.

Now that I’m on a pump, I generally change my cartridge and tubing every 6 days. I still take Lantus as well, and use one needle for the life of each pen, and I’m confident that I will never have to buy another lancet as long as I live (even if I were to live for 1000 years). So to say that I play fast and loose with the usage guidelines of my diabetes devices is to put it mildly. I don’t do it to be stubborn, and generally speaking I don’t do it to save money (though that’s a welcome result). I do it because every second not buying, storing, or changing a lancet, needle, sensor, or pump cartridge is a second that diabetes hasn’t stolen from me, a second that can be spent sleeping, talking, eating, ANYTHING but diabetes-ing. And if I’ve learned anything from living with a chronic disease, it’s that ultimately there are no small things – over time they all add up. Those seconds becomes hours and days over a lifetime with diabetes, so they’re precious to me, and I will only surrender them to diabetes if I truly believe I’m getting something better in return.

Which brings me to the one rule I DO always follow: I never leave an infusion set in longer than three days. Why? Limited real estate. I already know that prolonged injection/infusion of insulin changes my body, and I can tell the difference between a site that has been in one or two days and one that has been in three. I know that over time, the ability for certain locations to absorb insulin can be compromised, and I know I only have so many locations. I also believe that the next substantial improvement in my treatment will be some version of a dual hormone closed-loop pump (quite possibly Ed Damiano and Steven Russell’s Bionic Pancreas). This means I will need twice as much serviceable tissue to enjoy the full benefit of that treatment. So I’m doing my best to preserve what I have. Spending that time now correlate to very real potential benefits  in the future.

In the meantime, I’ve found other uses for my lancets.

Don’t Mind Me.

Don’t mind me …

… I’ll just be sitting here with 1 unit of Humalog left in my pump because I went to bed with 9 units left and tried to use my insulin to the very last drop.  I’ll let my dawn phenomenon-induced morning basal rate suck up the rest of this cartridge before swapping it out for a full one.  Insulin isn’t something I take for granted.  It’s precious stuff.

LEGO Easter Robot.

Easter morning dawned bright and early (with a confused little Bird wondering about the strange relationship that appeared to be in place between her parents and a giant bunny).  Egg hunt, breakfast, and then off to visit relatives throughout the day.

Easter has always been one of those “Sunday best” holidays in my family, where people dust off their dresses and shirt-and-tie ensembles and work a higher octane look for the holiday.  I like this tradition.  I like dressing up once in a while.  (It’s a stark contrast to my work-from-home attire, which only includes a nice shirt on the days when I have a video conference call … notice I didn’t mention anything about nice pants.)

But holy eff did I want to throw out every single diabetes device yesterday and go back to shots for a few hours, all because of one, stupid dress.

The dress I wore didn’t have any pockets.  It was a fit-and-flare style dress, which meant that it was cinched in a bit at the waist and didn’t leave a lot of room for my insulin pump to be stashed in the waistband of my tights without looking bulky.  And the disco boobs route wasn’t a good fit, because the dress was fitted in such a way that the pump looked like a giant LEGO stuffed into my dress.  My Dexcom sensor kept getting caught on my tights (I wear the sensor on my outer thigh) and looked again like I was infusing LEGOs to random parts of my body.

I was the LEGO Easter Robot, and it was frustrating.

But despite my fashion-related bitching, it was better for me to keep devices on this time, instead of trying to make the flip to MDI (multiple daily injections) for the day.  Despite eating several times throughout the day and indulging in foods that are historically rough on my blood sugars (read: Peeps), my blood sugars stayed reasonably in range, and I was able to stalk my numbers on my Dexcom graph.

Sometimes it’s better for me to embrace being a robot.

So Maybe Don’t ALWAYS Pre-Bolus.

I like to pre-bolus.  It helps keep my post-meal blood sugar spikes from rocketing out of range and taking a sizable bite out of my overall diabetes control.  (… I’m sorry.  I laugh every time I type the word “control.”  It’s not a word I toss around lightly when it comes to diabetes.  I’m not Janet Jackson.)

The art of pre-bolusing has been instrumental in keeping diabetes shit in line.

But it only works when it works.

Last night, we ordered pizza to go along with our birthday cake for Birdzone (we rounded out the meal by eating a stick of butter each and guzzling soda – healthy! – only the butter part is a lie) and the promise was “delivery in 30 minutes.”  Since pizza can be insulin’s kryptonite, I thought it wise to pre-bolus so that the initial carb influx of the pizza would be headed off by the first bolus, and then I’d chase my meal with more insulin to grab the fat-induced-blood-sugar-bump that hits about two hours later.  (I don’t have a #DIYPS, so when my food choices edge towards pizza party, I have to improvise a touch.)

Basic gist?  I took my insulin way too freaking early because the pizza arrived an hour later.

My Dexcom was freaking out by the time the pizza delivery man left – “Kerri, your Dexcom is vibrating like crazy over here, and says you’re low.”  “Like how low?”  “Like spelled out as LOW low.” – so the first piece of pizza was inhaled in a matter of seconds.  The second piece went just as quickly, and then I chased my dinner with a handful of glucose tabs.  (Wildberry – the perfect palette cleanser.)  Pre-bolusing doesn’t always work – its success leans on timing.  My pre-bolus was working right on schedule … if the pizza had arrived on time.  But due to tardy carb arrival, my blood sugar was in the trenches and covered in pepperoni.

“Mawm, is this good pizza?”

“The best!”  I answered her, through a mouthful of glucose tabs.

Inset/Outset.

Most of the time (read: every other time except this one), the cannula is laced through the insertion needle on the insets for my insulin pump infusion sets.  But this infusion set was attacked by diabetes gremlins, because the cannula made a run for it before I even opened the spaceship pod:

Insulin pump inset ... er, outset.

Insulin pump inset … er, outset.

Scott, on Facebook, quipped it best:  “It appears that instead of an Inset, they gave you an Outset.”

UPDATED:  I opened the set this morning.  No tubing, either.  Gremlins!!

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