G5: Clarity’s Not So Clear

I have always been one who, when analyzing my diabetes data reports, I like to see everything. The overview, the snippets and the nitty-gritty of the matter. I don’t know about you, but my diabetes is not always crappy, nor is it sunshine and rainbows, so I need to be able to look at the whole picture together as well as be able to zoom in and identify the things I did right verses the things I did wrong.

dexcom clarityLooking back in my Dexcom G5 Mobile app, I started on the G5 on 12/10… 4 weeks ago today. I have many thoughts on my first month of the G5 but that will be in another post. This one is strictly to write on the companion app, Clarity. It is, in my opinion, the most irritating thing ever… and is not clear at all, maybe cloudy at best. It does give me an overview, I’ll give you that. But I don’t see everything in it.

For the past couple of weeks, I’ve had a horrible time with my blood sugars going everywhere – even up to 400 at times and that is not like me. I tried to look at the reports, but it just made me frustrated because I no longer have all of the options that I do with Studio or even Diasend to mull over each day’s progression. And for a while, I was even logging everything in to my Dexcom G5 Mobile app thinking it would carry over into Clarity for when I did have time for my nitty-gritty day-by-day data munching, but it wasn’t there. So, I feel as though all of that effort is in vain. *edit: Apparently you can see the day-by-day if you access it from the web, but not from the report downloaded to the phone. Still not sold on it, though, because while you can see what you logged online, if you print it to take to your doctor, none of the facts of what was actually logged is printed.

And my biggest gripe that really gets me hot under the collar is knowing that there are two versions – one for home use and one for “professional” doctor use. This burns me up. The fact of the matter is, this is MY data. I should have access to all of it, in whatever manner I need it. If I had access to seeing it in all sorts of ways before in Studio, why cut me off now and give it only to my CDE or Endo? This mentality reminds me of a parent/child relationship and makes me feel as if they don’t believe we are responsible enough to handle our own data. The problem with that, though, is that if we are to be more informed, responsible patients, then give us the tools to do so, not cut them out. Dictating what you believe is too advanced for us is taking the power out of our hands to control OUR disease for those of us who choose to work our tails off to do so. *edit: From what I can gather, the Professional side has what you see, but with a bit more anonymity? I’m still confused on that point. Still, I don’t see the point of having two different ways of signing in. My endo needs to have my login for my Diasend account and needed it for my Medtronic account when I had it, so sharing my Dexcom user info would not be an issue. Generating a code would just make it more cumbersome than if they were able to have access at any time.

So, for now, I won’t be using Dexcom’s Clarity app or reports. I’ll continue to use Diasend for that (which means I have to go back to the G4 until Diasend at least gets the receiver to upload for now).

 

First Week With Dexcom G5 Mobile

G5 is here!After waiting 2.5 months, I finally received my upgrade transmitters for the Dexcom G5 Mobile system. To say that I was excited is an understatement. The thought of not having to carry around a receiver was pure bliss because honestly, I didn’t think I could lose my brain anymore than I did after my first kid and I was wrong – I literally could not find my nose if it weren’t attached. The balance of keeping order of all-things-diabetes in my life went out of the window, so I was leaving that receiver more places than ever. And if I kept it in my pocket, I would have that, phone and pump in various pockets and feel a bit tool-belt-ish.

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It’s true. Having my phone act as my receiver is liberating. I love only having to keep up with my phone. And my house is sort of small, so I can leave it in one central location most of the time and get signal most everywhere. But most of the time I have my phone with me for email, text, and baby-photo-op reasons, so that’s not an issue. The issue used to be that I was never near the receiver when the alarm sounded, and it would be at the most inconvenient of times, so it would get called all sorts of names and I would end up more frustrated than thankful most of the time. Now, it’s always with me since it’s built into the phone. Awesomeness.IMG_1169

The biggest thing I love about the app is now I can easily just tap in my BG calibration (NO SCROLLING – YAY!), and most of the time, I log my carbs and insulin now too. The app makes it easy to do, and seeing that blip helps. I also have used it to log my breast-pumping sessions so that I can figure out a better way to handle how it affects my BG by logging it as “light exercise”. I also like that the alert is shown with the actual BG number, not just “BG above ###”.

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I also love that my data is automatically stored into Dexcom Clarity, and accessing my report is as simple as opening the app, clicking a button, and viewing it. I can then email it to myself for in-depth review or just quick-glance over it when I have a couple of seconds free that I haven’t passed out from exhaustion.

Now, for the things that I don’t like or feel “meh” about:

The super private alert system. I think this is an area that should fall under “give us the ability and let us choose”. Personally, if I am being alerted of being high or low, I want to know what that alert number is WHEN I’m alerted, and not have to fumble with unlocking my phone first then opening the app. I want it to be an option that I can CHOOSE to turn on or off to see in that alert either “High Glucose Alert” or “High Glucose Alert – ###mg/dL”, and give us the option to open the app or dismiss the alert… which leads me to….

AW Alert

FOR HEAVEN’S SAKE PLEASE ALLOW US TO *ACTUALLY* DISMISS THE ALERT FROM WEARABLES OR EVEN THE LOCK SCREEN WITHOUT OPENING THE APP! This is my biggest pet peeve. If the above issue is solved where I choose to see my BG number and arrow within the alert, then also actually let me dismiss the alert when notified without having to open the app. I like the alert that comes up when you open the app, but it’s sort of pointless to me because I’m opening the app BECAUSE I’ve been notified, and I’m sure I’ll see the number once it’s open – no need to show a splash screen of sorts with it on there. I needed that BEFORE opening the app.

And along that same line – if I dismiss the alert from my watch, I shouldn’t still be notified every few minutes still from my phone. Especially since I’m required to have both the G5 mobile app and the Follow app to see it on my watch, and getting multiple alerts bugs the heck out of me. I get that the goal is to be sure to check the actual device for stale data, etc, but one would probably be keen to check if their BG remained static for hours on end. Heck, even instead of “dismiss”, let it be a “snooze” where you aren’t alerted seemingly every minute until you dismiss the actual alert. I would rather be able to “snooze” the alert for 10-20 minutes if needed rather than having that useless “Dismiss” option.

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Overall, I like the Dexcom G5. I think it’s a big improvement, but I also think it’s a big step back. The jist of it is – let us *actually* dismiss from wearables, give us a separate app for those wearables for G5 (NOT the follow app for those of us who use it for ourselves and to follow others [which doesn’t sound creepy at alllll, right?]) (update: I hear there is a G5 mobile app for the Apple Watch in development, it just wasn’t ready when the G5 was approved by the FDA), and for all things mobile – LET US CHOOSE if our BG alert actually shows the BG or not.

I’m hoping to find a work-around until the G5 Mobile app comes to the Apple Watch since I have to use Follow currently. Possibly using only the alerts through the Follow app and turning off G5 Mobile alerts and simply using the G5 Mobile app as the loader? HHmm. I need some thought time on that one.

Check back later for an update! I’ll soon have my G5 receiver (I chose not to update my G4 one to use as a spare for the G4 transmitter), and I’m sure I’ll have some comments about that when I get it!

Putting Diabetes Back Into My Life

Wow. It’s been 3 months since I blogged?! What?!?! I guess that’s how things go when you’re stretched at every end it seems between a baby, toddler, and a house to keep up with. I’m busy, but happily so. I’ve not had much time to think about blogging as it seems my day is full from the moment I get up to the moment I go back to bed. Some days are overwhelming but most are just full and things like blogging have taken a backseat.

So, if you are wondering how we’re all doing, we are good. The hubs is staying busy, baby A is growing (she’ll be 5 months old soon!) and E is quickly growing into a little boy rather than a toddler. Baby A is rolling over and already has 2 teeth (!!!), and E is in pre-k learning and filling his mind with all sorts of awesome things (Hey moma! Apples grow on TAAAAAAAAAAAALLL trees!).

Me? eh. I’m “here” most days. I get so wrapped up in what is going on around me that I forget “me” and, most of all, my diabetes. I’ve let things go so much that I don’t even want to remotely know what my A1c is right now. I realize that I can’t expect to be perfect with it, but I also know that I can’t let my control go. My husband and kids depend on me to be healthy, and I feel like I’m having more and more “episodes” and am not healthy any longer. My body is tired and worn out from the rollercoaster caused by my own “backburner” attitude I’ve had. I’ve just not had the time I had before baby A to sit down and upload. I used to think I would like to have a system of remote uploading for convenience sake, but now, it would be an absolute dream to upload everything with no wires, on-the-go, from all devices, and get instant feedback. That’s one thing I do love about Glooko’s updates to their app because while I can’t plug my pump into it, I can have my Dexcom data plugged into it from HealthKit and I can upload my Contour Next USB into my android tablet and at least get feedback that way by seeing comparisons between weeks, months, etc. I looked at it earlier this week – my average BG is almost 170. Yep. And while that may not be a big deal to some, it’s a huge deal to me since I usually keep a tighter, lower range goal.

I feel like I’ve let myself go too much and it’s time to get back. And what got my head back into the game after having E was blogging. It was my way of working things out in my head because rarely do I go back through and edit – I simply blog out what’s in my head and get better clarity of where I stand and what I need to do.

And this is the one, constant truth. As selfish as it may seem to put myself first, it’s really not because if I don’t it’s also not putting my family first. My health directly impacts them and my ability to take care of them, and I can’t take care of them if I am too sick to do so. So, putting me and my care first, is actually putting them first… and then you realize that there are no placeholders, only the ones we’ve created, and we’re all just one unit.. your family unit.

The time has come for me to put diabetes care back into my life and to stop “winging” it.

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Long time, no blog… The big update.

I promise it has not been intentional to not be consistent or to be absent in blogging. Things were becoming increasingly busy near the end of my pregnancy trying to prepare for the baby, which proved to be a needed thing because I actually went into labor on Father’s Day weekend.

Yep. Totally unexpected. I even had an OB check-up the Thursday before and there was absolutely NO sign of her coming early. I knew my pelvic bone felt as if she had shifted down, but my OB said he didn’t think she had dropped, and that labor did not seem to be any time soon. Yeah, right. My body thought otherwise. Late Friday night / early Saturday morning, I started having contractions. Not bad, but stronger than normal, and only a few of them. I went off to bed with no problem other than the usual hip/pelvic pain that I had all throughout my pregnancy. Saturday morning, we went shopping for the weekend and for things for the next week (food, etc). Halfway through the shopping trip, the contractions were very strong, but not consistent. I thought maybe it was the pelvic pain from walking as long as I had been. Activity was not something I could do without major pain anyway, and this was just over the top. All I wanted to do was to go home and rest in my recliner and wait for the contractions to ease too – because, ya know.. they just had to be Braxton-Hicks since I was no where NEAR ready for labor right?? Ha. They stayed steady all.day.long. And into the night. By that evening, I told my husband we had better go just to get checked since the contractions were then becoming about 4-5 minutes apart.

After a 2 hour stay at the hospital (SUPER strong contractions, but no dilation… only a half centimeter!!), I was sent home with a cocktail shot in my hip to make me sleepy and to ease the pain (which made me super drunk and sleepy, but did NOTHING to ease my pain)… and some juice, crackers and peanut butter because my BG was dropping… which wasn’t usual.

All day Sunday (Father’s Day), I had contractions. I stayed in bed or in my recliner and simply kept a watch on my contractions, and took warm baths to help ease some of the pain. We went to bed that night and by 1am, I was crying and moaning through the contractions. Something HAD to be happening. We went in and I had dilated to maybe 1 cm.

O. M. G… Seriously?!? Yes… Seriously. And they were going to send me home again. I fought against it. By the end of that two hour wait, I was so uncomfortable. I couldn’t sit any longer. Walking helped, but not much. The contractions made the pelvic pain so much worse than I felt I could stand. Finally, the nurse came in once again an hour later to tell me my options and insisted that she check me. I also believe she tried to ‘help’ the dilation along because I had gone from that measly 1cm to 4cm. She called my OB and came back  and said “Congratulations, you just booked yourself a c-section at 7:30am!”

I cried. I was so ready to not be in pain, but was so unsure if she was ready since I had JUST made it to 37 weeks that morning.

My section was bumped to 9:30 due to an emergency one. By then, I had no idea how much further I had dilated, but there was no going back. I knew it. The pain was VERY intense, and I shook, cried, and moaned uncontrollably through contractions. I wish now that I had an idea of how far I had dilated just for curiosity’s sake.

Funny thing about c-sections, once they begin – it’s super fast and over before you know it. I was wheeled in and being prepped at 9 and by 9:35, I heard the cries of my little girl. And this time, I got to see her because they took the blue sheet down far enough for me to see as the doctor suctioned her and cut the cord.

And just like that, I had 2 kids. One, so happy to be a big brother, and the other just as happy, content and healthy as could be to be out of her cramped living space and out in the world. She was perfectly healthy with only a dip in BG after birth that was brought back up with some formula while I recovered with no NICU time.

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As far as my BG the whole time? I owe a HUGE thank you to the Nightscout team – both for the push to get Dexcom to release Share and for them to have the Pebble app be able to get the info from my Share account so that I could be monitored VERY closely with just a glance by my husband at his watch, and my Dexcom and phone be tucked away in his pocket. Oh, and the medical staff was super impressed ( nurse: “hey, what’s her BG?” husband: “136” OB while cutting me open: “awesome!”… yeah… that’s pretty darn awesome!!)

Triple Shot

It’s been a while since I posted, I know. It’s not purposeful at all – I’m just either super busy or super exhausted most of the time now.

We are in the last month of this pregnancy (pretty much, anyway) finally and things are beginning to get “real”, if ya know what I mean. I’m so ready for her to be here, but not so much because I know this is the last time I’ll be pregnant, so it’s sort of bitter-sweet. I’m 34 1/2 weeks pregnant now, and yesterday, we attempted to schedule the c-section for delivery at 39 weeks if all continues to go smoothly as it has so far. This pregnancy has been a lot better toward the end than my last one, and I’m very thankful for that.

As far as the diabetes front, we’re doing well with it. I’ve had some very frustrating times as well as some moments of utter relief… and a few WHAT.THE.FREAK moments too. My OB was very happy with my logs yesterday (first time in 2 weeks!!) and my endo has been super supportive and encouraging the whole time. The major insulin resistance gets to me at times because it’s hard to believe a pregnancy can make you need so.much.more insulin than when you’re not pregnant and it’s a mental thing I’m having to overcome. I’m learning how to balance pre-bolusing, lower carbs, and also exploring multiple-site (sometimes three different locations – what I now call, the “triple shot” method) injections for larger boluses that would be over 8u so to keep the tissue where my insulin is being infused as non-irritated as possible (and it also seems to help with absorption as well).

Right now, the goal is to keep as healthy as possible to try to make it to the 39 week mark. After talking with my OB, I understand the reasoning for waiting until that week, and it’s sort of the sweet-spot for healthy mom and healthy baby. I’m sort of excited now to have a date (or at least narrowed to two dates!) so that if I don’t go into labor on my own, I know she’ll be here by then, and she’ll be healthy enough to be born. It’s put my mind at ease.

34 weeks today! Baby girl is getting big!!

A photo posted by Sarah (@sugabeticme) on

Jun 1, 2015 at 1:56pm PDT

Third and Twice

For most of the pregnancy calendars I’ve looked at, this week ( number 27) marks the beginning of my third trimester… or either the last week of the second. I’m going with the first of the third because of simple math reasons (40/3=13.3, so TECHNICALLY 26w6d would be the shifting point). Either way, I’m now in what they call “the home stretch” and I’m very happy to be.

Don’t get me wrong, the ability to be pregnant and feel a little one moving around inside of you is pretty darn awesome. From her kicks and jabs to just simply rolling around, it all amazes me and makes me so excited to imagine what she looks like. But there have been a lot of differences with this one – mostly I’ve had a lot more pain throughout this pregnancy, and I’m ready for it to be over.

One thing that is not very different and knew would be coming on full force sometime soon was the lovely insulin resistance. It’s like I was telling a lady friend the other day who was talking about how she hates the monthly resistance that comes before the week of her period. Pregnancy is the same way, except it’s a cycle that lasts 9 months. The third trimester is like the third week of that month where insulin resistance hits and makes no sense but you have to roll with it – except it lasts for about 10 or so weeks and increases with vengeance. I think I made adjustments two or three times last week. And I’m already very close to being at twice the insulin intake that I was pre-pregnancy. I have to remind myself that I’m not doing anything wrong and that I’m not a bad or irresponsible diabetic – I just need more insulin. When I have to bolus and what would normally have been only 3 units, tops, is now close to 7, I have to mentally keep myself from feeling bad and just realize that it is what it is because of my current state of pregnancy.

Looking at the overall picture though, I’m doing very well with this pregnancy just as I did with my first, and that’s what I’m most thankful for. I’ve been bumped up to 2-week visits now and will start that lovely Fetal NST (non-stress testing) visits twice-weekly when I’m 30 weeks along. Yay. 🙂

 

Getting Closer To A Decision

It’s no secret that I am someone who can’t seem to make up their mind when it comes to diabetes devices. Granted, I have (according to my Countdown app) 19 more months until my current t:slim pump warranty expires, so I do have some time to mull over this – which is a good thing. I don’t think that choosing a pump should be a quick decision for anyone, nor should it be one that a doctor should make for you – one should have the time to research all available options and to do as much research as possible. You are sorta “stuck” with the decision you make for a while – at least 4 years, 5 years for some, if insurance paid for it, so it needs to be a good one. And it should be one that you listen to your gut about as well.

I do have a Medtronic pump and while I have no issues with the pump itself in how it fits into my life – I do have issues with their CGM system and prefer Dexcom whole-heartedly over it. I’m not saying it’s a bad system, just that it doesn’t work for everyone and I’m one of those people. Which brings me to my next point.

Seeing as how they (Medtronic) will probably never answer the clicking of my ruby slippers and wishful thinking and offer a pump that also integrates with Dexcom, I’ll always have two separate data systems to look at when viewing my data. My endocrinologist works very closely with me and allows me to make tweaks as I see that they need to be done. He knows that I fully understand how my pumps work and also knows that I have taken time to study how my body works. And until this pregnancy, I never really cared about the data being separate. Now? It’s a huge deal to me. Maybe I’m losing my touch or I just don’t have the time to upload and analyze like I did before, but the separated systems irritated me to the point that I stopped making my own tweaks. And while I absolutely LOVE my endo to pieces, his office is busier and he doesn’t always have the time to get back with me.

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So, I’ve made a big part of my decision. Any system that I use HAS to upload to Diasend for Dexcom integrated reports. I don’t care whether the Dexcom is integrated into a pump at this point because I have the Dexcom Share receiver and it fits me and my needs better than having it integrated into a pump would.

I also know how my particular insurance works, so I also know that pumps that are partly disposable (ie, the Snap by Asante and the Omnipod by Insulet) will not be choices in my line-up due to on-going costs. I totally get that up-front, it’s cheaper, but I’d rather pay more upfront and have lower monthly costs than commit to a pump that I may not be able to afford supplies for. These pumps are good pumps as well, but for me, it’s a financial factor that’s swaying me.

And, to go back to Medtronic’s system for just a minute, cost is a factor there too. While I could just go back and order a Revel pump still and use the Dexcom separate – why would I want to get a pump that I know I’m not going to use it for it’s full functionality? It’s sort of a waste of money if you ask me, and not an option I can bring myself to choose.

So, that leaves me with either:

  • Tandem again (which hopefully their new t:slim G4 will be available and the upgrades they make to other things in the pump – like reverse correction – will make it better, though I’m sort of leery about going back with them after all of the problems I’ve had with that particular pump),
  • Accu-check – though I’m not a fan of having to use their dedicated remote for bolus calculations since it’s not built into the pump, and you have to use the integrated meter to even use the bolus calculator (you can’t input a manual reading to base it off of like you can with other systems), or
  • Animas – which seems to be a strong contender as I do like their Ping and I’ve honestly not had any issues with the pump or customer service from them, and it also works with Diasend. Plus, the Ping has a remote to bolus with, with FULL calculations, not just an “easy-bolus” of a pre-determined amount.

In short, I’ve made a decision really to stick to Dexcom, Diasend, and one of those three pumps. It’s just deciding which one of those now that I’m left to make the choice between, which I’m sure I’ll continue to think and weigh options between them over the next few..okay, several… months.

One Year Since…

Today marks one year since possibly the scariest day I’ve ever faced in my life of living with diabetes. It has been an emotional week leading up to it and I’m sure I may catch myself having moments today as well. As I look back, I remember and feel the fear and the feeling of failure that I faced that day just as raw as ever.

It was the day I woke up and couldn’t see anything but light and darkness out of my left eye.

Since then, I have gone through dealing with three different diagnosis’, with the final one being a macro aneurysm that dissipated before the vessel could burst. The fluid from the swelling was what caused the temporary vision loss, and without it, I would have never known it even happened. The final diagnosis was both a blessing and a wake-up call. I was blessed in that it didn’t burst, it was a wake-up call that I needed to (1) find a new doctor and (2) stop getting so stressed about everything and to be thankful for everything.

image (3)I’ve been one to try to be positive about things in life, especially my diabetes. The Serenity Prayer says it best – “God, grant me the serenity to accept the things I cannot change…”. I cannot change the fact that I have diabetes. I cannot change the fact that after 26 years, there is a much higher risk of developing complications. I cannot go back in time and change how horribly I took care of myself for so many years – especially those teen rebellion years. BUT, the next part? “…Courage to change the things I can…” – Yes, there are things I can change. I can continually do my best to take the best care I can of myself. And lastly, “…and Wisdom to know the difference”… We have to know that there are things we can and things we can’t change. There are sometimes things that no matter how much we try, will never make the situation better. We have to recognize them and learn to let it go.

Not too long ago, a post I had written was syndicated to DiabetesDaily about if I were to be cured, what would I miss? A few commenters on their Facebook page called me crazy for even thinking I’d miss anything about diabetes. I don’t blame them – if I hated diabetes as much as some do, I’d think the article was pure craziness. But you know, after all of this time, it’s one of those things I’ve had to come to accept – I cannot change that I do have diabetes, so while I do, I have to embrace it and try to find the positives from it. Is it hard? Yes. Do I have moments of utter anger and resentment for having this disease that I know will progressively cause damage to my body? Yes.  I still get angry. I still get upset. I still cry when no one is watching because I’ve taken all I can take for the time being and I need a break. But you know what? I also realize that I cannot stay in that mindset. I have to have it and move on because I cannot change the fact that I have diabetes.

What I can change, though, is my attitude toward it. And I can continually work on knowing when to just let go and move on.

It’s been a rough year, to say the least, but it’s been one filled with blessings. I can see, my eyes are healthy again, and most of all – the thing I thought would no longer be possible for me – I’m carrying the most precious gift God could have ever blessed me with, and we’ve continued to be healthy throughout the pregnancy.

Hope, Courage, Prayer, and Faith. It’s what it takes.

 

(I turn to music for a lot of things. This song helped me through some pretty dark times. )

Coordinating Devices with PumpPeelz

One little thing I like to do is design graphics. I piddle with it, mostly, so it’s not a big thing, but it gets my creative juices flowing and takes my mind off of other things that may be stressing me out.

So, I wanted to make a design to get a custom PumpPeelz made so that my Dexcom and Medtronic pump matched and looked cute. Crazy, I know, but that little bit of color and art makes having the devices not so mundane. So, I set out to make a design using a blank canvas in Photoshop and some “brushes” (some of them are more like stamps, like the ones I used). I also used color inspiration from my niece’s favorite show, Strawberry Shortcake. My favorite character is Cherry Jam because, well, she sings and her colors are pink (like, fuchsia pink), a purpley-tinged pink, white and purple. This is where I LOVE Adobe Color because I can pull the exact colors from the photo and use them in my design work in Photoshop. (okay, okay, enough about my geekiness…)

Scott was able to take my image that I sent him:

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And with it, he was able to make my matching skins:

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I love them.  And the purple almost matches the color of the pump too. And, since I really don’t like the pink that the Medtronic pumps come in (someone likened it to a naked mole rat once, so now that’s all I see with it!! hahaha!), this gives me a perfect mix of purple AND pink… a pink that I like.

Is this post about diabetes? Not necessarily. But I do believe that things that make us happy and creative around diabetes helps us to do better and be more encouraged to take better control of ourselves. And if a silly pump skin or Dexcom skin helps do that and also gives me a means to display my artwork, then hey, it’s all good. 🙂

So go and get creative. If we have to use these things to help us be healthy, why not get creative with them? No use in being drab all of the time, I say. (Unless that’s your thing… if so, go for it.)

 

If you like this design too and would like to have one like it, feel free to email me and I can let Scott know that you would like to purchase one. I don’t charge for the designs, so it would be the cost of a custom designed skin from PumpPeelz.