Sat down at the keyboard
And I couldn’t find the words.
I found the letters, that was easy.
Home row right there in my face.
But the words? The words? The words?
I can’t find those anyplace.
(I grabbed a pen and paper
To see if that would start the flow
… but it didn’t.)
I’ve run out of things to talk about.
Run out of things to say.
I don’t want to document the hold
That my disease has here today.
Yesterday we watched a movie.
And today, I’ll go outside.
I want to run and run and run until
inspiration and desire collide.
I’ll water plants – all the green beans.
I’ll log miles like a race.
I’ll hug my smallest Birdzone
And let the sunshine hit my face.
I don’t want to think about my meter.
Incessant arches of my graph.
I want to test and bolus and move on
Not let disease incite my wrath.
Burnout? No. Frustration? Nah.
It’s not like I’m done caring.
I just need a break. A small one.
And then I’ll go back to sharing.
I’m not a good traveler, but I am a good packer. Part of my preparation ritual is to make sure I only bring what I need and that outfits are tried on and coordinated before I go. (Because there was that one time I brought a shirt and forgot pants and that made for a different sort of panic before a presentation.)
Thinking ahead helps me prevent over-packing. (I have made a rule about not checking baggage, ever, if I can help it.) So before I left for a business trip on Thursday afternoon, my house was a brief flurry of coat hangers, dresses, and shoes. I tried on four or five different things before chucking them into my suitcase (who am I kidding – I military roll everything so it fits) and then it was time to get ready to leave the house.
It took me almost an hour to realize that, in my frenetic fashion show, I had my pump clipped to my hip but not connected to my infusion set. It wasn’t until I heard the Dexcom alarm let loose with the HIGH ALARM! that I realized my tubing was wagging like a tail. Disconnected from my body. Leaving me on an unintentional insulin hiatus.
So many variables influence my blood sugars – exercise! Insulin levels! Food! Stress! Exclamation points!
But sometimes it’s as simple as remembering to plug shit in.
In the last few weeks, I’ve taken some device breaks and reverted back to some of my multiple injection (MDI) ways (until skin rashes healed up, bruises started dotting up my skin landscape, and frustration with trying to draw up 1/4 of a unit of Humalog using a syringe tossed me back into DeviceLand). It was a good break and one I needed, but I was reminded of how many sharps I can accumulate during the course of a week on MDI.
Back when I lived at home with my parents, my mom used an empty detergent bottle to throw my sharps into. When it was full, she taped it up with duct tape and my dad disposed of it somewhere “official.” (But to be honest, I have no idea where he brought it. The shed at my childhood home could be filled with used insulin syringes shoved into fleets of Tide bottles, for all I know.) When I moved out and went to college, I continued the same system only I brought my full sharps containers to our local pharmacy.
These days, I don’t generate a lot of sharps and currently have a few containers that need to be disposed of (tips from Joslin on sharps disposal here), but that’s largely in part due to the fact that I rarely use syringes these days. Even when I’m on pump vacations, I tend to use insulin pens over orange-capped syringes. (Did anyone use one of these back in the day? I loved this thing. It was like a fingernail clipper for my drug paraphernalia.) I busted out a “formal” sharps container that I had in storage for the last few years and have been using it for pen needle tips, lancets, etc.
It feels strange and foreign to not be shoving my sharps into a discarded laundry detergent bottle. I feel like my sharps went all professional. Like they wear tie clips and have board room lunches. But, at the very least, they are properly contained and will be properly disposed of and that makes me feel like I’m properly PWD’ing.
“Your thing is going off.”
Though nondescript, that phrase is a loaded one. It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.” And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.
And by way of notification, I’m disclosing right here and now that I have a relationship with Dexcom. It’s kind of serious, and I look forward to when they meet my dad. Details here.
I’ve been using the Share for a few weeks, and have had some time to give it a good once-over. My take on the SHARE 2 application itself:
- Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops. (When I’m on a plane, this makes sense. When I’m at my kitchen table, it does not.)
- Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission. If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.
- It feels weird to have to put my password into the app in order to access the “followers” screen. Why protect that specific screen, but not the others?
- I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world. Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself. And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.
- (Does any of that make sense? Let me know if it does not.)
- Also, iOS only? Frustrating because anyone who is not using an iOS device can’t be added to my network.
- The alarms that are issued through the phone are wicked loud, and very useful. I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well. (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)
- The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate. I feel like the Share receiver holds battery life better than my previous receiver. I charge it once a week and even then, it’s not drained.
- I forget that the application is on and working because 85% of the time, it’s on and working. I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on. Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.
- Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use. Also, it’s easier to pack. And harder to forget.
And my take on sharing, in general, with this application:
- Sharing data is personal. Wicked personal. And it’s a choice, one I’m grateful I can make. Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.
- And sharing makes me feel a little ashamed, at times. I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on. Keeping my blood sugar data devoid of emotional valuation is difficult for me. I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.
- For example, two weeks ago I had a urinary tract infection (much like this epic one). It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere. This glucose saturation was sent up to the cloud and pinged out to the people I trust. None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas. I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself. My knee jerk response of justification kind of flies in the face of the security and trust. And it’s not because of them or how they judge me, but because of me and how I judge me.
- Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes. We’re talking HIGH with arrows still pointing up. I took a bolus that put every other bolus I’ve ever taken to shame. And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.
- Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed. On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written about several times). Also on that hand is the accountability that works to my benefit. As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking. Blood sugars on display are ones I watch more carefully, for whatever reason.
- But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny. I want to fail, or do what I perceive as failing, in private. Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity. Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce. (And there I go again, explaining away the things that make me feel ashamed. This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out. I test and exercise and track and eat well and truly make efforts and yet blood sugars bounce. I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for. Which is a fun dance.)
- Have I mentioned that sharing data is personal? Let’s go back to that for a second, because it is. And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.
I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have. Coming full circle, I can choose to share or not share. I can also turn off accessibility to others with the click of a button. Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit. And as an adult, I can decide how these data are dealt with because they are mine.
Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.
I’m not going to complain about the weather. Nope. Not even a little bit, because eventually it will be so balls hot that the sidewalks melt and crumble into an oatmealish texture, so I am going to be quiet about the fact that we STILL HAVE THE HEAT ON and it’s mid-April.
It’s time for some link-sharing, because there’s lots of curious bits and pieces to read.
Sixty-three years with type 1 diabetes.
Charlie Kimball and his continuous glucose monitor make the news again.
Is being a night owl bad for your health? (I hope not.)
I really like this Instagram account: Beyond Type 1.
Adam Brown issues ten diet commandments for better diabetes management.
What are your plans for July? If you haven’t attended the Children with Diabetes Friends for Life conference, this year would be a great year to get to know your extended diabetes family for the first time. Or to reconnect. Either way, your heart will thank you for it, even if your pancreas is still too lazy to even get out of bed.
In pursuit of closing the loop.
DHF Joins Diabetes Advocacy Alliance.
diaTribe takes a look at the Diabetes UnConference.
This stupid fucking headline made me want to throw my computer. The JDRF UK’s response on Facebook was awesome, though.
“Patrick Peterson discloses that he’s diabetic.” Yes, I had to cut-and-paste that headline because I know zero about anything related to football.
“Dexcom® Introduces Apps That Enable the First Ever Continuous Glucose Monitoring (CGM) on the Apple Watch“ Well hot damn, Dexcom!
I had no idea the Brontosaurus was ever up for debate.
And last week, I did one of those “drink wine and paint something while carefully supervised” sorts of events. It was fun. I’ve never painted anything before (other than the walls of our house and a birdhouse one time), and I followed most of the instructions. Until I got bored.
Turns out I’m not unique in experiencing the dreaded “Dexcom rash.” (Which sucks for anyone else who gets the major sensor scratchies, but at the same time, the diabetes community is innovative as eff. We work around the workarounds.)
When it comes to dealing with my own Dexcom rash, wearing the Toughpad underneath my sensor helps a ton, but it doesn’t remove the reaction entirely. Which means that after a seven days, I will peel off a sensor to find a raised, slightly irritated area underneath. (And that patch of skin usually gets worse the next day, particularly after showering or if I’m in recycled air like in an airplane.)
After talking about the rash with my endocrinologist, I asked her for some recommendations for lotions to use after the fact, when I need to soothe my skin post-sensor removal. She said that Amlactin was something that she’s used in the winter when hand-washing causes rotten skin, and suggested I give it a go.
So I did.
And it works better than I had expected. It’s not the best smelling stuff (kind of like a stick of butter mixed with stale toothpaste and a dash of freezer burn), and it sometimes makes my skin feel hot for a few seconds after application, but if I slather this stuff on my sensor-irritated skin, it helps so much. Rashes that took a week to properly mend were fine after two days, and the rapid-healing helped keep the curb appeal of my skin real estate intact.
There you go. A post about a lotion that helps deal with Dexcom rashes. No, it’s not sponsored. Yes, it’s kind of boring. But this shit works for me. And it might work for you. So go forth and slather.
Here’s a flying cat, just in case you wanted one: