This Is My Brain: This Is My Brain On Diabetes - And Sometimes It's Exhausting

Diabetes is so damn different every day and at every turn - it's a goddamn crapshoot!

For example, 3 days ago I filled up a new omnipod with 150 units of insulin (180 unit is normally too much,/as in too wasteful for me,) and placed it on my side boob.

95% of the time, boob sites work really well for me. 

This boob site is working exceptionally well. 

We’re talking almost a solid flatline on my Dexcom for the past 72 hours, except for normal post-meal spikes and 3 actual low blood sugars. 

All of the above had me seriously thinking: Oh my God, did somebody kickstart my pancreas and neglect to tell me?

Anyway, pod expires in two hours, at 6:11 pm tonight. 

I currently have 36 units in my pod. Even if I keep it in for an additional 3 hours (half the 6 hour grace period after the time on your pod officially runs out,) and bolus for my dinner, I’ll still have more than 31 units left. 

Do I really want to start a new pod at almost 10 pm at night and post-meal? 

I DO NOT. 

WHY? Because then I’ll have to stay up and make sure everything is copasetic with my new site/pod. If it isn’t  - I have to start the process all over again. I have to work tomorrow - I don't want to be up super late!

Not to mention the fact that if I change out this pod late night tonight, that means in all probability, I'll have to change out the next pod late at night- unless I can sync my morning alarm with the 6 hour grace period and make sure I have enough insulin in said pod during that grace period. Or I run out of insulin before the pod times out. Or an occlusion alarm goes off. 
Or 390 other different diabetes wrenches getting thrown into the equation.
This isn't projecting, this is what is required for those of us wearing diabetes robotical parts. 
SIGH. 

If I put less insulin in my new pod, there’s a 50% chance that diabetes will switch it’s bitch-switch and I’ll go through my normal 150 units in less than 72 hours and will have to change out my site early - unless of course, that doesn’t happen. 

Again - who the hell knows what will be required from a new infusion site and no matter what brand of robot pancreas you’re using. YES, the same happens with tubed pumps.

Or like... do I put less insulin in the new pod and do correction injections from the remaining insulin in my previous pod? 

For fuck sake, insulin is the 5th most expensive insulin on the planet and I don’t want to waste it!

Yeah, this is only a small portion of the mostly necessary and seriously annoying diabetes minutia that runs through people living with diabetes minds and on a daily basis. 

This is also why when a healthcare professional asks me how much insulin I take a day I look at them with daggers in my eyes. OK, maybe not daggers - especially if they're nice. But I definitely channel my inner 13-year-old self and roll my eyes at them and I'm all like, WHATEVER.

Every day with diabetes is different - and requires a different amount of insulin - and for dozens of different reasons. And there are dozens if not hundreds, maybe thousands, (but for real it feels like MILLIONS,) of different diabetes scenarios having nothing to do with site changes or insulin or carbs.  

AND SOMETIMES IT'S GODDAMN EXHAUSTING. 

This my brain. This is my brain on diabetes.  

This spot-on cartoon was created by the amazing Haidee Merritt.
To see more of her work, laugh your butt off and maybe buy her books,  click HERE. 

#DTM2018: The Diabetes EcoSystem

A few weeks ago I attended the Diabetes Technology Society's 18th annual Diabetes Technology Meeting  (#DTM2018 on the twitter,) in Bethesda, Maryland on November, 8th, 9th, and 10th. 

It was an excellent opportunity to listen to lectures from diabetes tech-heads, FDA, researchers, scientists, healthcare professionals, and to learn more about the latest diabetes and dtech advances for people with diabetes. 

A tremendous amount of information was discussed at a rapid fire pace - as in it made my head spin - but in a great way. 

I’m glad I was able to experience it. 

Full Disclosure: I was able to attend thanks to Ascensia Diabetes Care, who sent me there to cover the event as their Guest Reporter. Ascensia covered all my expenses, (travel, lodging, meals,) and provided me with an honorarium for my time and my talent. 

As always - All thoughts are mine and mine alone. 

My first of two #DTM2018 articles is up on Ascensia's website, mapping out the topography of the Diabetes Ecosystem, its parts and booming expansion - and how “people with diabetes are more than the twin of their diabetes data. We represent what the data cannot articulate - the living, breathing, real life component of diabetes. Our voices need to be included on panels and discussions when it comes to diabetes tech.”

Click HERE and give it a read! 

Diabetes Hardware & The Moisturizer/Sunscreen Chess Game

Re: Dex, I am only referring to the G6

I need/require good moisturizers for both face and bod - because thank-you dry skin!

Also, I like to feel silky soft and smooth~ 

And I use sunscreens with built in moisturizers for both and you know I reapply liberally. 

But thanks to diabetes - I'm always playing a continual moisturizer/sunscreen chess game - 

as in thinking three steps ahead re: my next Omnipod placement and immediately after putting on a fresh pod.  

OK, 3 days ahead re: where my next Omnipod placement will be. 

Heck, sometimes even six days ahead! 

EVERY. DAMN. TIME. 

Bottom line: If you wear diabetes hardware, you know that moisturizers and pod/pump/cgm/libre stickums don't always work well together. 

The struggle is real. 
Calculating my next move on the chessboard that is my body - 3 days in advance has become part of both my diabetes brain and regiment, as is acknowledging that Skin-tac is both ally and enemy. 

Do you find yourself playing the diabetes hardware Vs moisturizer/sunscreen chess game ?

If so, what's your 'tactic' ? 

Diabetes Friends, Pod Changes, And A Lost Bottle Of Insulin

Last Friday night I spent time with local diabetes friends - a family who lived in the next town over. The timing was right and my Omnipod was about to run out. 

A few weeks back, I’d offered to fill a new pod/do a site change in front of the Dmama and t1 AlmostTweenT1 daughter so they’d know what to expect when they went for Omnipod training. Friday morning I texted Dmama, and told her I’d be changing my site between 4:30 and 5:30. If it was good for them, I ‘d stop over. If it wasn’t, we could schedule for another day.

People with diabetes do that. We show-off and explain our hardware; share experiences and help one another out when diabetes is being bitchy. 

We share because we “get it.” We speak the language of diabetes and in the same diabetes dialect. And it’s comforting.   

Those are just some of the gifts of our D community — both online and off - and I love and am so incredibly grateful for those gifts. 

Friday morning I packed my diabetes bag with my almost new bottle of insulin — as in I’d used it exactly twice. 

Plus 2 pods, extra skin-tac, and my PDM and test strips , which were already in my diabetes bag. . 

I was good to go. 

7 hours later I knocked on their door and we caught up on life and life with diabetes.

I also learned that American Girl sold Doll manicure kits with “real nail polish for the dolls and that they only cost $10.”  Also: Said manicure kit came with some hideous looking (at least it looked damn hideous on the computer screen), bubblegum pink nail-polish, that would thankfully wash off.

But to each her own. 

45 minutes later, with 3 units left in my old pod and 2 hours until my current pod officially expired, my friends watched as I cancelled out my old pod; filled the new pod with insulin, went through the PDM prompts, and prepped the skin on my left arm with skin-tac. 

Dmama asked questions and my assistant AlmostTweenT1, pressed the PDM button after each prompt and only after I gave her the OK. 

We were done in a snap. 

AlmostTweenT1 smiled and said “COOL,” then went to go play with her brothers.

I checked my blood sugar: 146. Dmama  offered me a juice- box. I did and bolused for it, and we kept talking.

20 minutes later I started packing up and came THIS CLOSE to forgetting my insulin. 

I didn’t - and made sure it was tucked safely in both its box and my diabetes bag before I zipped it up tight in my diabetes bag and tossed it in my handbag.

We said our goodbyes and promised to meet up in a few weeks. 

I went home, put my box of almost new insulin in the fridge immediately and completely forgot about it. 

Cut to Monday morning when I woke up with an itchy site and a 300 blood sugar. 

My arm site had crapped out with 12 hours to go and 13 units left. 

Shit happens and I went to grab my insulin. 

Which I did… except the box was empty, the insulin bottle was missing. 

I checked the fridge shelf where every bottle of insulin I open makes it’s temporary home - NOTHING. 

I checked in the veggie drawer where my unopened bottles of insulin live. 

I looked on every shelf in my fridge, and then under it. SO GROSS. 

Then I looked on my kitchen floor and under my stove. 

I dumped out my diabetes bag, handbag, and work bag. NADA. 

The clock was ticking, my blood sugar was high, and I needed to get in the shower. 

I also needed coffee. So I temporarily shoved the lost bottle of insulin to the back of my mind,  opened a new bottle of insulin and did what I had to do. 

I knew how lucky I was to have extra insulin bottles in my fridge. 

The cost of one bottle of insulin kept running through my head and the thought of losing one bottle made me sick to my stomach. 

 I looked for that damn bottle of insulin for two days. 

I KNEW I hadn’t left it at my friends. 

A. She would have texted me ASAP.

B. I knew that if I texted and asked if they’d found an extra opened bottle of insulin, my Dmama friend would worry. 

I didn't want that. 

Plus, I was worrying enough for the both of us. 

Last night I came home and kept thinking about that damn bottle - I had a feeling I’d find it 6 months later and in a place I never thought to look. 

Maybe it fell out of my bag as I was going up the steps. I checked in my stairwell and up my stairs. NOTHING. I flipped the cushions on the couch and then checked under it. ZILCH.

And if it was in my car — it was cooked. 

I thought about what if I didn't have backup - and what if I'd had to explain losing a bottle of insulin - the very stuff that keeps me alive to my insurance company - and I knew they would tell me that I was SOL. 

I took a hot shower, put on my pajamas and flipped through NetFlix. 

Before I went to bed I decided to check near the fridge one more time. Nothing. 

But something made me look in my pantry — which I’d already looked in multiple times. 

And there in the corner —  on my white and gray patterned floor…. was my white labeled bottle of insulin — blending in so well I could barely see it.

I washed the bottle under cold water, then swabbed it with alcohol. 

When it was dry, I marked it with a purple Sharpie , so I’d know to use that bottle first. 

And I was thankful.
I was so tired, but I couldn’t sleep. I kept thinking about others who weren't lucky -  because they couldn't afford insulin or were forced to ration insulin and  are no longer here.

Diabetes: Giving Up Control To Get Control

Starting 2018 with much needed changes that I made at the end of 2017. Asking for help, giving up control to get control. 

This is me - except my hair never looks this good or this effortless. 

After my last Endo appointment in November; struggling to lower my A1C; (it's stubbornly stayed at 7.4 since July,) lower my daily insulin intake and drop weight, I decided to listen to my CDE., give up some control and let her and my Endo look at my numbers and make changes. 

And as long as I’m being honest, I was scared shitless to upload my Omnipod’s PDM to Glooko (which comes with Omnipod purchase,)and have my CDE and Endo access my info. 

Even though I have a fantastic and incredibly supportive relationship with my Diabetes Team,  old fears die hard, and I was afraid of being judged and shamed - even though my CDE & Endo have never done either. 

My diabetes team is amazing - and I know how lucky I am. 

But it’s amazing how old shame and guilt can rear it’s ugly head and cause you to NOT get the help you need. 

Showing my numbers would mean showing my flaws - which of course I have - and I know my HealthCare professionals know I have them - but now those flaws, were going to be print and available to share via Glooko. 

Also, lets talk about the the whole "control thing." 

There’s so much we can’t control on life… and our life with diabetes. 

Like you, I work hard when it comes to diabetes - and I still wasn’t getting the results I wanted. 

My a1c wouldn’t budge; I’d only lost a couple of pounds and I don’t eat huge carb filled meals very often - all incredibly frustrating. 

What I was doing wasn't working - I was taking much more insulin that someone my age and size should be taking.

I needed to give up my control in order to get the control I need and crave. 

I sucked it up, took a deep breathe and did what I was asked. 

My first round consisted of uploading/ sharing 2 weeks worth of numbers, followed by a second round of uploading and sharing 12 days worth of numbers  - and apologizing for my sucky numbers. 

4 days later, my CDE responded in the greatest of ways: 
“Kelly, please don't ever apologize for your blood sugars. You're obviously putting a lot of work into this. And these two weeks are much more stable than what we saw in the last upload. 
You aren't staying high, you work hard to bring the BG back down.”

She also told me that I was actually doing too much work  - for the results I was getting. 
Her words literally made me cry tears of joy and I posted about it on fb and twitter.

Her response motivated me to take her suggestions to heart and actually make them. 

My CDE was convinced that I was utilizing too much basal and too little bolus and wanted to closely mimic my old, "less insulin" pattern with a few changes to simplify things. 
She made drastic changes to my basal, carb ratio, and correction factors and said that if I wanted to wait until the holidays were over to make the changes, I could. 
I didn't want to wait put them into practice as soon as I received her email - 5 days before Christmas. 

The changes were immediate. 
My first 5 days (including Chinese food for Christmas dinner with my family because none of us felt like cooking,) resulted in daily insulin totals between 10 and 13 units LOWER per day, than my old settings. 

On day 6 the cold; sore throat, congestion, and cough that had been brewing in my system went all mock 5 and I caved. Setting elevated temp basal rates. 

Here’s the kicker: Even with higher temp basal for sick days, I was still taking between 6 and 10 units less on those sick days than I would have been with my old settings. 

And I’ve lost 1.5 pounds. 

MIND OFFICIALLY BLOWN.

Things I've Learned/Been Reminded Of

This experiencereinforced that I don’t know everything, can be too proud for my own good,  

and that I’m not great with change, even when it brings good things. 
I'm glad I moved out of my own way, shared my numbers with my team and took their advice. 

I need to upload my next round of numbers at the end of the week and will embrace what ever tweaks are required. 

Bottom line: Change can be hard  - even when it’s good. 
Admitting; asking, and taking help isn't easy. 
IN 2018 I’m embracing change and those who help me make the changes needed to become what and who I want to be in my life…. and my life with diabetes~ 

Embracing Low Carb Dinners - And Trying Not To Over Bolus

If at first you don't succeed..... 

Since Monday (OK, really since Sunday, but that was because I had big lunch and didn't feel like eating much dinner,) night I’ve been consciously trying to eat low carb dinners for a multitude of reasons . 

Better blood sugars, trying to drop a few pounds, upping my veggie intake - all that stuff. 

Plus, low carb is easier to cook and requires less clean-up - at least in my kitchen. 

But while cooking/preparing low carb meals have been easy (tuna salad loaded with raw veggies, yogurt and fruit, eggs with 1/2 a baked sweet potato and lots of veggies, Bastard Homemade Chicken Soup,) I tend to over bolus for meals that are considered low carb. And then 9 times out of 10, I end up running low either a few hours after my meal, right before bed (and right after I've put my night-guard on,) or in the middle of the night - all of which negates the whole “trying to eat low carb dinners,” thing. 

So for the past 3 days I’ve been working hard on my bolusing skills for low carb.

As in actually looking up carb counts (which by the way - I’ve been freakishly spot on with,)  and not counting the carbs in my animal protein ( I always count the carbs in legumes or quinoa) at dinner. 

Animal protein is where I usually make my mistake when it comes to bolusing. 

As always, your diabetes may vary.

To be balls out honest, it was weird to see such a small amount of insulin flash up on my Omnipod PDM. 

On Tuesday night I had a meeting with myself and was like: If the 2.20 units don’t work out for my eggs,1/2 a medium size sweet potato, and green beans with hot sauce, no big deal - that’s what a correction bolus is for. 

Things went well. 100 blood sugar two hours later with insulin onboard, a very small glass of cranberry apple juice and a 130 bg blood sugar before bed.  

Cut to Wednesday morning, a blood sugar of 120 and no middle of the night lows. 

I ROCK. 

Wednesday dinner blood sugar was 111 and I made a tuna salad loaded with raw veggies and served with gluten free crackers. 

1.75 units did the trick and again - a little freaked out by the small dinner bolus - but I went with it. 

Went to bed with a bg of 135 and woke up at 116. 

And as I was drinking my coffee I may have uttered: WHO’S YOUR F^CKING DADDY, DIABETES?!

Pickings are officially slim in my fridge, and last night's dinner was a repeat performance. 

Eggs over medium, the other half of baked sweet potato, and the last of the green beans. 

2.75 units to cover my meal and 153 bg - all seemed right with my world. 

178 bedtime bg. 

hmmmmmm and interesting. I chalked it off as being tired - considered a full correction dose - but only gave 0.90 unit instead of the 1.50 correction because I was going to bed and I was worried going low. 

Sidebar: I don’t wear a Dex. I need to be careful with bedtime corrections  because nighttime is the right time for my blood sugar to drop.

Blood sugar this morning: 297

Clearly - diabetes was sending me a message and that message was: WHO’S THE F^CKING DADDY NOW, KELLY!!? 

And sometimes diabetes likes to f^ck with me.... because it can. 

Also, I should have known something was up when I woke up at 4:30 to go to pee and then couldn’t go back to bed.

This morning required a 6.25 correction bolus in the form of a shot and including insulin to cover the carbs for copious amounts of coffee. Then like we all do every damn day when it comes to living with our diabetes, I forged ahead. 

By lunchtime my blood sugar was 159. 

Current blood sugar: 131 as of 1 minute ago.

Takeaways

I was once again reminded diabetes is never the same disease two days in a row - and will prove that too you - and just when you think you’ve figured it out.

Diabetes can do whatever it wants - so can I. And want I want to do is to continue trying and fine tuning when it comes to managing my diabetes. 

And I’m going to take it one day... one carb... and one number at a time. 

My Omnipod Experience - Part 2

Yesterday I wrote about part 1 of switching things up and starting the Omnipod. 

Today I share part two of my experience, where I discuss the stuff I love about podding - and the stuff that takes some getting used to. 

#########

The Stuff I Love

Swimming in the ocean with my Pod - I LOVE IT.

Not having to disconnect, and more importantly - not worrying about the contortion issues re: access to my pump site to reconnect after swimming - which for some reason, was always trickier for me, is freeing in all dimensions. 

The same goes for showering without disconnecting and sleeping naked if I so choose. 

Also: YAY!!

Wearing dresses and not having to wear bikes shorts or pump garters - makes things so much easier. 

I still have to deal with Spanx on occasion, but at least I don't have to worry about dealing with infusion site issues!

Access/Utilizing Arm/Leg Sites Is A Game Changer 

I could never navigate arm sites with my tubed pump and the thought of getting tangled in tubing freaked me out.

Every time I tried a thigh site with my previous pump, they had a limited shelf life and normally only worked for 24 to 40 hours before crapping out. 

Thighs = high access area and the tubing was continually being pulled, yanked, etc. 

With Omnipod, I’m able to wear arm and thigh sites for three days and that makes my life with diabetes easier. 

Scar tissue was a huge issue with me on my previous pump and is the primary reason I chose the Omnipod. I was changing out my site every 30 hours - that’s no longer the case and I’m thrilled. 

Good To The Last Drop

Most of the time I’ve been able to use all the insulin in my pod - that wasn’t always the case with my old pump reservoirs - which normally would be less efficient when the reservoir went below 30 units.

Cool Techno:

When you activate your new pod on your person, the PDM tells you the exact date and time it’s supposed to expire, based on your personal pump settings and insulin amount.

My pods run low on insulin between 3 and 4 hours earlier. 

That’s not on Omnipod issue, that’s a Kelly issue - yours truly needs to do some MAJOR basal rate testing, which I  didn’t want to consider let alone  attempt until I was wearing new diabetes tech. 

Basal Testing is now on the horizon. 

Loud Alarms

 The first time my 15 unit Low Reservoir went off, my PDM was in another room and I thought it was my smoke detector.

The PDM & Pod do their priming dance BEFORE you put it on your body.

Cool Software 

I can download the Omnipod PDM to Glooko, making it easy for my CDE to access all my PDM info: Carbs; blood sugars, basals, carb ratios, etc. 

This should allow for easier tweaks and I'm looking forward to giving it a try.

Blood Sugars

4 out of the first 8 days, my daily 24 hour insulin intake was 10 to 12 units lower than my old “low side” of normal. 

That still seams to be the case 36 days in - sans elevated bg's due to a couple "dead sites," and the summer cold that's been the bain of my existence for the past week.

Facing Fears 

I have officially conquered arm, thigh, calf and love handle infusion sites. 

day 18 (and for the first time, ever,) I attempted a back /love handle site, it required some major twisting on my end, but mission accomplished!

BONUS: Great numbers with that never before used real estate space.

I tried an inner side calf site - it was easy but I had absorbtion issues. 

I’m going to try the back of calf to see if works better. 

Still have not tried back or front belly sites. 

I’ve decided that before I give my abdomen areas a complete break, I want to see how that area works with the omnipod verses my old pump - I haven’t done it yet - but I will. 

Issues /Learning Curves

The only insulin pump delivery system that’s 100% perfect is a fully functioning pancreas. 

I don’t have that - same goes for many reading this post. 

Andit makes sense that changing pumps = dealing with some issues and learning curves 

as I learn to navigate wearing/using the Omnipod insulin delivery system.

Bad Pod/Bad Pod sites 

Dealing with Pod failures and insulin reimbursement issues. 

Unexpected Pod Change Out On Day 2 of Wearing My First Pod  

I wasn’t thrilled, but shit happens - how many times did I rip my old pump's tubing out by walking by a door knob or getting caught on my car's emergency break? .

Answer: ALOT.  

Anyway, everything was working great with my first official pod (left arm,) the first 27 hours. 

Then I started noticing blood sugar spikes that wouldn’t come down, no matter how much I corrected. Something was up and the top of my pod looked uneven. 

I called Insulet's Customer Service and the Rep and I spent almost an hour on the phone. 

I told him my issue, answered a series of questions, emailed the Rep pics of the pod on my arm so Insulet could study the issue and send out a replacement pod.  

The Rep also talked me through my Pod change - it was only my second time and I was a little nervous - but it was easy and he was patient. 

CS Rep and I discussed the insulin reimbursement program - 7 cents per unit (OK, it’s something,) with an insulin receipt and 5 cents per unit without.

I emailed a photo of my insulin receipt from my pharmacy and via my phone to Receipts@insulet.com. 

Insulin Reimbursement takes up to 6 weeks to be approved and payment received. 

  

There’s two different procedures - one for dealing with a bad pod and or bad pod site, another dealing with insulin reimbursement issues - that can get confusing if you're new to  podding. 

I’ve learned to take notes and jot down the the case numbers for both, along with the date and the name of the CS I spoke with. 

Follow up

I’d like the follow up fort the insulin reimbursement (it takes 6 weeks,) to be better. 

I’d like an email to be sent saying they received my email and receipt photo and are working on my case.

Sidebar: My second pod (on my right arm,) stayed put for 3 days through daily showers and body surfing in the Atlantic, no problem.

ALWAYS follow up

7 days post my first pod site failure, I called Customer Service to check on the status of my insulin reimbursement and found out the wrong report had been filed.

The new CSR rectified the situation, immediately - and yes, I followed up to make sure.

Day 24 - Pod Failure Alarm

PDM called a Pod Failure while said pod was in Prime Mode and not yet attached to my bod. 

FTR, I liked and very much appreciate that the PDM recognized an issue with the Pod BEFORE it was officially up and running on my person. 

I called CS, they asked me some questions and then told me they’d FedEx me a new Pod. Filed both a failed pod report and insulin reimbursement report. 

This time, the phone call took less than 10 minutes and I received my replacement pod 

3 days later. I returned the failed pod to them in the package and shipping label Omnipod included with my replacement pod. 

All in all, I'm learning and going with the curve~

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Embracing Something Different 

Change is difficult - even when it's good. 

Diabetes or not, we get used to doing things a certain way and I love that going with the Omnipod is helping me knock down my walls when it comes to embracing change in life... and life with diabetes.

 I wore a different brand's insulin pump for 15 years, I knew the idiosycricies of that pump brand like the back of my hand - I was losing real estate because of scar tissue and I needed to switch things up - so I did. 

So far, I’m glad that I made the change - and I 'll keep sharing my podding experiences with you guys - The good, the bad, and the diabetesalicious of it all. 

And if you have any questions - ASK!