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Posts from the ‘Robot Life’ Category

Beach-Borg.

Yesterday, my daughter and I went to the beach (with my mom and my aunts and half of the state of Rhode Island) and I wore a bathing suit.  I also wore a CGM sensor on my thigh and an insulin pump infusion set on my arm, connecting to the insulin pump clipped to my bathing suit.

There were a few glances, but nothing too awkward.  (Except the older kid who was sitting on the steps heading up to the bathrooms who, after staring at my diabetes cyborg stuff, nudged his sister in the shoulder and said, “What’s wrong with her?”  To which I replied, “Plenty,” and kept walking because honestly, I had to pee.)  It always surprises me, though, that I’ve never seen another pump or sensor on the beach.  All these people who are supposedly living with type 1 diabetes – where the hell are they?

It reminded me of the lady who was so concerned about the cell phone she thought I was about to ruin at the beach … hey, there happens to be a video discussing that very topic right here!

I’m rarely self-conscious about diabetes, and thankfully I have a small child who doesn’t leave much room or time for me to be stressed out about beach-borging.  But I am reminded regularly throughout the summer that my tan lines are a little different from that of my insulin-producing counterparts.

(Yes, I’m ready for Friends for Life, where borgs are the norm.)

 

Robot Arms.

[You can read my Dexcom disclosures here.]

The low alarm slammed into my ears from across the bed, coming from my Dexcom receiver on the bedside table.  A half second later, it echoed from my cell phone, where the SHARE app threw out a loud warning of its own.

LOW.

I reached over and clicked on my phone, which was closer than my receiver, going to the app to look at my blood sugars.  I “follow” two PWD friends in addition to following my own data, so the screen showed three different profiles.  The two that weren’t me were fine – nothing to worry about.  They were perfectly safe.  Everyone was safe!

Everyone but me, because my data stream claimed “LOW.”  Somehow that number wasn’t registering in my head.  It wasn’t mine.  Clearly.  Wait, what’s happening?

I rolled over and went back to sleep, entering the fifteen minute cycle of hear beeps, respond to beeps by clicking a button, head back on pillow (drenched with sweat, but somehow the low still was recognized by my consciousness), repeat.  My daughter was asleep next to me (she had appeared in our room around 4 am) and for a split second, my brain wondered who belonged to the brown, curly ponytail spilling across the pillow.

And then all at once, the alarms made sense; their intention clicked firmly into place.  Their sounds reached across and tapped me on the shoulder, pushing me with frustration towards the juice.  I uncapped the little bottle and drained half of it, relief hitting the hypo-panicked parts of my mind.  It only took a few minutes to paddle back from confusion, and within minutes, I was fine.

Once I was downstairs in the kitchen, I checked my email on my phone while the coffee brewed.  I spun through the data on my SHARE app, seeing the long, red tail of the low that had wrapped around me for over an hour.  I felt frustrated by the fact that despite well-timed alarms, sometimes the lows themselves remove my ability to respond.

Some hypoglycemic moments are quieter and laced with a gentle fog of frustration, one that makes me reach for glucose tabs and forget how many I have already eaten but ha ha ha that’s okay, everything will be fine in a few minutes.  But the lows that come while I’m asleep and my body wakes up in the trenches of leave me entirely confused and oddly content to sit in a puddle of my own cold sweat, a bottle of juice within reach on the bedside table but my brain is too damn stupid to encourage my hand to reach over.

Eventually, science and technology will find a way to add two arms to my CGM receiver that, in the event of a low, will reach over and slap me, then hand me the bottle of juice.  Then those robo-arms will hand me a towel to wipe my forehead.  And once it’s over and done with, they’ll hug me quickly but firmly and tell me to suck it up because there’s shit to do.

Device Frustration.

Am I a crumb because I want to rip my devices off sometimes and throw them into a great, blue hole?  Like this one?  My skin is so irritated by the adhesives and intrusions of my insulin pump and my CGM that the desire to heave them into this abyss is intense.

the Great Blue Hole – I look at pictures of this thing all the time

I hate the bulk of them.  The amount of room that my devices take up on my body and the trauma they have a tendency to leave on my skin.  I simultaneously absolutely love the convenience of them.  The fact that I can take teeny, precise doses of insulin without using a magnifying glass on a syringe or when the alarm goes off in the middle of the night, alerting me to a 70 mg/dL that was sliding towards LOW … this is the stuff that makes wearing diabetes devices worth it for me.

The pros outweigh the cons by a long shot, but the cons are a thorn in my side these days.  Or, more accurately, a wicked itch on my skin.

I took my insulin pump off one morning because the site was so sore, and so red, and the mark it left on my body was like a little diabetes bullet wound.  I have a high threshold for irritation and itch, but this site was terrible and after pulling it out, I didn’t have anything even close to resembling the desire to put a new one back in.  I went on injections for 12 hours before realizing that being on the road wasn’t doing my blood sugars any favors (I was having trouble bringing myself back under 200 mg/dL – rage bolus, anyone?), so once my Levemir injection timed out, I reluctantly put a new pump site in.  Admittedly, blood sugar control for me these days is better on the pump.

It’s not just my pump sites that are irritating these days.  This morning, I noticed that my CGM site had become red, itchy, and irritated OUTSIDE OF THE TAPE.  What the actual fuck?  Usually, I have a skin response underneath where the sensor actually is, or where any of the tapes connect.  But this round, I have a proximity rash thanks probably to continuously compromised skin (linking to it here because it’s too gross to put on the blog).  So now I’m getting a frigging rash in the places where the sensor isn’t even touching?!  I’m in a hard place of feeling safer with access to CGM data but access to CGM data produces a fierce itch.

I need a breather.  But taking one leaves me exposed.  HEAVE this shit into the great blue hole!  That’s what I’m doing mentally, chucking all these things that make my skin hurt and itch into the watery hole and watching them sink to the bottom.

… but then diving in to rescue them.  Because I hate injections and I hate going to bed without seeing my CGM trend arrow.

Pump Peelz Giveaway Winners!

Time for the Pump Peelz Giveaway winners!  The original contest rules are from earlier this week are here, and the entries came in through blog post comments and Twitter. Some were poignant, some were silly, and all were written by people touched by diabetes.


Ahem … here we go.

All were so awesome
Random number thing picked three.
These are the winners:

It’s midnight again
Sugar monsters sucking life
Double-stuffs for win!

- Susan C.

Diagnosed last year
The only thing he can’t do
Is make insulin

- Maria Conroy


Winners!  I’ll be connecting you with Scott from Pump Peelz to receive your prizes, and for those who didn’t win, you can still use the “SixUntilMe” discount code at Pump Peelz for 15% off your order. Thanks for playing, and thank you so much to the team at Pump Peelz!!!

I Wanna New Tape, One That Won’t Itch.

I wanna new tape, one that won’t itch!
One that won’t give me bit, fat welts or make my skin twitch, twitch!
I wanna new tape, one that won’t give a rash!
Make it easy to wear my Dex, without the urge to “Hulk, Smash.”

(Channeling Huey Lewis and the News.  Click it.  You know you want to.)

I’ve been wearing a Dexcom on-and-off since 2006, but entirely ON and almost 24/7 since my pregnancy in 2010.  There’s a lot about CGM use that I’ve learned over the last nine years, but one thing I’m certain of is that the data is useful for me all the time.  I like the safety net it provides, particularly while I’m traveling.  So I wear my CGM, even when I’m not always happy with the actual blood sugars that it’s showing.  The data informs so many of my decisions.

But it’s tough to wear a medical device that you have an allergic reaction to.

In pursuit of CGM data and avoiding the stupid rash, I try out a number of different barrier tapes.  One that was recommended a few months ago was Mepitac tape (I bought mine on Amazon – no, this is not an affiliate link but only because they don’t let Rhode Islanders do affiliate linking) and I have been using it successfully for a while now.

I thought it would be a good substitution for the ToughPad, but it wasn’t wide enough to put underneath the sensor itself, so I use the Mepitac as a secondary tape (you know, when the edges start to peel and you need to reinforce them).  For a while, the Opsite Flexifix tape was giving me a red rash, so I wanted to move away from it and see if Mepitac was gentler.

It is.  While the tape itself isn’t nearly as sticky or sturdy as the Opsite Flex, it has yet to leave a rash (and I’ve been using it for about three months).  Unlike Opsite, the Mepitac tape can be removed and replaced without ripping up my sensor with it, which is useful for cleaning up my sites but not as good for durability.  It also travels well, and I keep a few pieces of it in my wallet in case of tape emergencies.  (I’ve also used it as a blister barrier for when shoes become unreasonable.  Useful stuff.)

I like options.  I’m glad there’s a less itchy one.  [insert The more you know star here.]

No Disassemble.

I need to exorcise the technology demons in my house.  Because everything is breaking.

It started several months ago, the issue with my laptop, but in the last two weeks, my computer has gone entirely bananas.  I have a Macbook Air as my primary office computer and the bulk of my work is on that machine.  And it worked fine for several years, until the trackpad on the computer started to over-react to everything.  I’d tap my finger on the trackpad and every email in my inbox would open, files would delete themselves, and browser windows threw themselves against the side of the glass.  Crazy shit.

“Why are you so sensitive?!” I yelled at the computer.

“I don’t knooooooooooooow!!” It sobbed in return.

I did a lot of Google searches, and my computer wasn’t the only one feeling super fragile and sensitive.  It was not alone.  (And if your computer is going berserk, you are not alone.)  But last week, while traveling, the computer refused to click on any damn thing while simultaneously clicking on every damn thing, it wouldn’t connect to wifi, and it bit me when I opened it.  (Sharp teeth on that little sucker.)  Because I do not work in a formal office but instead house my business entirely in a computer, I had to make the rotten decision to replace my computer.

Fine.  That problem is solved, albeit in the most expensive and irritating way possible.  Then last night my FitBit decided to go rogue on me, in the middle of an intensely competitive FitBit challenge (cough – @miller7 – cough), rendering it useless.  This morning, my Dexcom receiver did that weird “BEEEEEEEEEP!” thing where static electricity or something courses through it and it restarts on its own.  En route to a doctor’s appointment at the crack of dawn this morning, the GPS in my car took me to somewhere that was not the doctor’s office but instead a supermarket (so I bought apples).

Everything with a battery or a digital footprint is breaking.  I’m afraid.  And then I realized that the way I receive my insulin is via an insulin pump, powered by a battery, chock full o’ breakable technology.  A cold panic washed over me as I worried the tech demons were contagious.

“Shhhhhhh … you’re okay.  You’re my friend,” I said to my insulin pump, as I held it in the palm of my hand like a fuzzy hamster.  “Be good.  No disassemble.  Keep working,” I murmured to it, stroking it gently with one fingertip.

Here’s hoping.

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

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