Skip to content

Posts from the ‘Real Life Diabetes’ Category

Spotty Service.

In the earlier part of this week, I was up in Ogunquit, Maine with Chris and Birdy, following through on our family obsession with Maine (“the way life should be!” claims the sign you drive by when you cross into the state, marking the moment when Chris usually points a finger at the sign and says, “YES.”).  The place we stayed at had a fantastic view but spotty cell service, making access to the Internet (aka “how Chris and I do our jobs”) difficult.  But cutting back on emails and access wasn’t the worst thing.  In fact, the first few hours give me twitchy fingers but then I love it.  Love.

Last photo from Maine (probably not, though). Photo credit to CSparl.

A photo posted by Kerri Sparling (@sixuntilme) on

My best girl

A photo posted by Kerri Sparling (@sixuntilme) on

Maine

A photo posted by Kerri Sparling (@sixuntilme) on

When I signed back online to catch up on things, I saw that there was a whole crossfit clusterfuck that took place, with the Crossfit CEO running his mouth about diabetes and making crappy attempts at humor (?) that lit a fire underneath the diabetes online community, bringing my Twitter feed almost to capacity with back-and-forths about misinformation, stigma, and a pile of -isms.  A few people pinged me for my reaction on this whole thing and I felt embarrassed that I didn’t really have one.  Yes, I thought his joke was fucking stupid and offensive and perpetuated countless stereotypes and misconceptions about diabetes on the whole.  I was happy to see the diabetes community rally in support of education. I was also encouraged to see how many people stepped up to raise their voice.  I was disappointed to, once again, see the whole “Wait, he means type 2 diabetes!” shouted out as if we de-stigmatize one portion of our community by further stigmatizing another.  And also, I was frustrated to see that people were quick to talk about how sugar doesn’t cause diabetes (which is doesn’t) but there wasn’t a whole lot of recognition about how fucking gross it is that there is so much added sugar in our diets (which there is), unrelated to diabetes but entirely related to overall health. 

Basically, this whole thing made made me a little mad at myself because I couldn’t drum up the desire to care too much about the whole thing, making me feel like a crumb of an advocate.

But I think all kinds of advocacy are necessary and important, even if all the issues on the table aren’t ones I’m super passionate about.  Everyone gets to pick their battles, to a certain extent. I hope we continue to attack issues like policy and under-served populations with the same vigor as we correct misinformation on Twitter.  If it were up to me, this brouhaha would segue into a broader campaign of awareness and advocacy that helps touch the lives of people outside of our bubble of privilege.  (I’m adding a link here to Spare a Rose because when I think about bursting a bubble of frigging privilege, this campaign comes to mind in a big way.  Yes, I’m biased.  In related news: my bias is not news.)

I’m experiencing spotty service again, only this time it’s in my own advocacy mindset.  Brain attention flits between wanting to make a difference in how society, and our own community, views diabetes sometimes and exhaustion at the effort of attempting that whole “difference” thing.  Which is why I’m looking forward to Friends for Life next week, with a special focus on MasterLab.  I want to hear more about launching your advocacy movement from Kim, and about changing policy from DPAC, and about alerting the media from Stacey.  I need to take a little bit of my advocacy burnout and frustration and channel it towards something useful. A reboot of all kinds would be good. I hope FFL does it for me because I sorely, sorely need it.

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.

Reboot.

Diabetes and I are not getting along these days.  Not even a little bit.

Funny how that shit happens.  You’re rolling along [insert lilting "do de doooo" tune here] and then BAM Dexcom graphs start to get weird and BAM other health concerns start issuing commands that dominate the conversation and BAM all of a sudden, my blood sugars are absolute garbage and I need to reboot my whole system.

So okay, fine.  I’ll reboot my system.  Only it’s having trouble rebooting because of a few hard-to-change-at-the-moment things.  Like a demanding travel schedule for work.  And some meds that are gaffing up my blood sugar numbers all on their own.  And my unparalleled ability to instantly be distracted.  These aren’t excuses, but they are reasons, and these reasons are keeping me from rebooting entirely.  Instead, I’m temporarily stuck in that spinning pinwheel of rainbow doom that my old laptop was stuck in, going around and around in an attempt to reboot but ends up being a “press the power button until the whole thing powers down” moment.

(Yes, I also cannot stop staring at that thing while it spins.  It pulls me in.  Siren song of Mac doom.)

I’m aware of a lot of my shortcomings, though, and I recognize that a full reboot isn’t going to help.  I am not a “change everything all at once” sort of diabetes repair woman.  I’m more of a “change one thing, then change something else” type, leaving me with a breadcrumb trail of good decisions that eventually brings me back to better blood sugar control.  It’s a mixed metaphor that has yet to involve Hansel (he’s so hot right now, so I should get on that), but in time, I can wiggle these glucose numbers back into a better groove.

This time, I know it’s my response time to data that needs the most attention.  I have to be checking my glucose more regularly (and not simply in the morning, before bed, and whenever the CGM needs to be calibrated) and responding to the data I collect ASAP.  (Calling it “data” helps keep me from feeling like those numbers are little pockets of judgement and self-worth assessments.)  High?  Correct it.  Low?  Don’t over-treat it.  In range?  Do a happy dance in the kitchen because hot damn.  But the bottom line is PAY ATTENTION.

Complaining about this crap helps, but working to fix the parts I’m complaining about helps more.  This was my whine.  Now it’s time to work.

 

Does Not Compute.

“Do you guys have any fun plans for the summer?”

The question was simple enough, but not even close to a level my hypoglycemia-addled brain could handle.  I had trouble formulating a response, and the lag time was embarrassing.  We’ve only moved to the neighborhood a few months ago and haven’t solidified relationships with our neighbors yet, so being wickedly low in front of someone new wasn’t my favorite way to disclose my diabetes.

Thankfully, a disclosure had already happened, to a certain extent.  When she had asked me about my work travel this past week and what I did for work, I said that I worked in patient advocacy and that I’d had diabetes since I was a kid.  She nodded in recognition and shared that her college roommate was also T1D, so my disclosure was pleasantly subtle and streamlined.  No big deal.  What I hadn’t anticipated was going low during the course of our conversation.

And I was low.  Wickedly low.  The kind of low that made my face feel like it was full of Novocaine and that my hands were like birds at my sides, twitching and flapping absently.

I scanned the trees in the front yard for some kind of hint.

“Pssssst.  You guys!  You, trees!  Do I have fun plans for the summer?  HELP!”

They only waved their leaves at me.  “We have no idea!  Go get something to eat, dummy!”

“We go to Maine.  MAINE.”  I said it twice with way too much emphasis on the second one, an angry seal barking out their summer plans.  My neighbor didn’t seem to notice that my eyes weren’t able to focus on her, and I’m fairly certain she didn’t hear my Dexcom receiver hollering at me from the front steps of the house.  But I knew that another minute or two was the chasm between attempted conversation and calling for medical help, so I had to embrace the awkward.

“I’m so sorry; I know I mentioned that I have diabetes and you said your college roommate also had diabetes.  So I’m really, really low at the moment and I need to go inside to grab some juice.  Would you excuse me for a minute?”  I was trying to be polite and not let on that my thoughts were knocking around in my head like socks in a dryer.  She nodded and I took off for the kitchen, where I downed a glass of grape juice as quickly as I could.  My CGM only told me I was “LOW” and I cursed myself for not responding faster to the beeping.

Coming back outside, we stepped back into conversation without much pause, watching our kids play in the front yard.

“Sorry about that,” I said.  “No problem at all,” she warmly responded, not missing a beat.

And I kept an eye on my CGM graph, watching my blood sugars rise and kindly deposit thoughts back into my head.

Gluten-Free … Still.

I don’t have celiac disease.  I don’t have gluten-sensitivity antibodies.  My endocrinologist ran a slate of tests to determine if my body was pro- or anti-gluten, and nothing came back weird.  As I mentioned last September, the basic gist is that my body seems to have no trouble at all with gluten.  Except that it totally does.

For a good, long time, I felt crummy.  To revisit last summer:

“I was exhausted – falling asleep on the couch and having trouble maintaining my normal vampire hours.  I was moody and grouchy, especially later in the day.  (And I’ll just offer this up because I know you’re thinking it:  I’m not pregnant.)  My hands, on some mornings, were tingly and pins-and-needlesish.  And my stomach was angry, but in a really passive-aggressive way.  I had sharp pains in my stomach, but not all the time.  I had wicked bloating, but not intensely all the time.  I just had a permanent belly ache, and it was becoming the norm.”

I’ve been entirely gluten-free since last August, and those symptoms up there are gone.  The bloating, tender belly pain is gone, as is the majority of the thick brain fog that had settled in for several months.  (Not all the brain fog, though.  I am still space shot in ways that will never repair themselves, but gluten isn’t to blame for that.  That’s all organically me.)  No more pain.

Overall, I haven’t included a new pile of gluten-free replacements for foods, but instead am just cutting out gluten sources.  I bake our bread, so that’s gluten-free, but I don’t often eat bread.  Or pasta.  Subbing in more vegetables, meat, and fruits works better for my personal diabetes crap and preferences than replacing my diet with a bunch of gluten-free specialty foods.  Again, this is easier for me because I don’t have a problem with foods that have come into contact with gluten (I can pick the croutons off a salad without having a belly ache afterwards) and also because my response to eating gluten isn’t an immediate gastrointestinal disaster but instead a sharp bloating that, all things considered, I can totally work through for a night.

I just don’t want to feel unwell; the change is worth the effort, for me.  So I am totally gluten free.  And I am still squeamish to talk about it because it seems like stupid trend-following witchcraft and food bandwagon’ing.  “Gluten-free!  It’s the modern MUST for foodies!”  I kind of feel like a tool requesting a gluten-free meal or asking a server if they have a gluten-free menu, but the handful of times that I’ve eaten gluten in the last year have left a now-predictable and very uncomfortable mark.  I feel lucky as fuck to have figured this out, because I felt like absolute garbage before cutting gluten.

Which is what I try to remember when I’m sheepishly asking someone about the gluten content of a meal.  I’m not doing this to be trendy or snobby.  I am doing this so I don’t feel terrible the majority of the time.  I’m doing this so my kid can hug me around the waist without me wincing from pain.  I’m doing this so Chris doesn’t think his wife is suddenly 98 years old.  Whether lab work proves a sensitivity or not, my body has spoken loud and clear, and I’m listening.

 

Diabetes on the Red Carpet … Ish.

For Chris’s Sea of Trees premiere this past weekend at the Cannes Film Festival, diabetes was almost the furthest thing from my mind because we were so damn excited about the event.

Diabetes came into play for a brief moment when I was looking for a dress. I tried to adopt a “dress first, diabetes second” philosophy, picking a dress that felt comfortable and pretty without caring if my insulin pump fit into it. After spending some time looking for and trying on a bunch of dresses (a post I’ll never write, because I made the mistake of looking for formal ball gowns in the same week that girls were shopping for their prom dresses, leaving the ladies that worked at the dress shops very confused about why this older woman was coming in amongst the sea of teenyboppers and leaving me just as confused about my place in this world of women … not my best moments), I settled on a navy blue dress that hit the marks for fancy and comfortable without making me feel like I was trying to be someone I was not. Trouble was, my insulin pump did not fit into the dress easily. Or at all. Instead, it felt once again like I was clomping around with a toaster clipped to me. Which is why I decided to go on injections for the night and not wear my pump. Going MDI meant I needed my CGM data more than ever, though, so I kept my Dexcom sensor on my lower back, underneath some of the lace overlay for the dress, which perfectly masked the subtle bulge of the transmitter. (Hee hee … bulge.)

Thankfully, going back to injections and monitoring via Dexcom receiver wasn’t too tricky because my insulin pens fit easily into the glittery clutch I had for the night, as did a tube of Glucolift. I decided not to carry a glucose meter for the night because it was too bulky. Chris tucked my Dexcom receiver into the inside pocket of his tuxedo (“You turned it to vibrate, right?” “Yes, I promise you won’t go off during your own movie.”) I deliberately ran at the 160 – 180 range so I wouldn’t go so low as to need a snack or so high as to need to dash to the bathroom.

Aside from checking my Dexcom a few times before we arrived at the event, diabetes took a wicked back seat to the whole experience. Instead, we were able to focus on the surreal aspects of the event itself.

Cannes SEA OF TREES red carpet

A photo posted by Kerri Sparling (@sixuntilme) on


CSparl on the red carpet

A photo posted by Kerri Sparling (@sixuntilme) on

After party for SEA OF TREES at the Cannes Film Festival.

A photo posted by Kerri Sparling (@sixuntilme) on

After a grumbly critical review the day before, it was amazing to watch the filmmakers receive a two and a half minute standing ovation after the screening. I have always felt proud of Chris and I recognize his tremendous talent as a writer (insert all my bias here), but it was so nice to hear from people who felt the same way, both in his industry and in our diabetes community alike. We are very grateful for everyone’s support, and it means the world to me to know our DOC family supports one another in diabetes-related ventures and decidedly non-diabetes adventures.

Thanks for being there on this insanely odd, hard-earned, and exciting journey, you guys. I’m forever grateful.

Follow

Get every new post delivered to your Inbox

Join other followers