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Posts from the ‘Real Life Diabetes’ Category

Alabama Scratches.

(Instead of Alabama Shakes?  No?  Might be a bit of a stretch.)

Over the last few days, my family and I were in Huntsville and then Birmingham, AL for a friend’s wedding.  The wedding was beautiful, the trip was fun, and mosquitoes have really taken a liking to me.

Actually, that’s an understatement.  The mosquitoes made breakfast, lunch, and dinner out of me, with a few snacks in between and now my skin is a fresh quilted mess of bites.  Eff.  That.

Mosquitoes have always made me their target over other members of my family, and even on this trip Chris escaped with far fewer bites with significantly less weltishness.  The marks on his skin were gone within a few hours, but mine remained raised landmines of itchiness.  (Birdy escaped with nary a mark on her skin.  I suspect the power of voodoo.)

“How many did you get?”

“Walking to the car just now?  Two more bites.”

(The walk was from the entrance of the restaurant to the car door.)

It became a sport, avoiding the bugs.  Walking from any building back to the car was a flurried attempt to secure Birdy in her car seat and then get into the passenger seat of our rental car.

“Hurry!  Get in the car seat!  Shut the door!” and I’d slide over the hood of the car like Luke Duke.

 

Bugs have always wanted to devour me whole, and I can’t figure out why.  Is it because I shower often?  Is it the soap I use?  Can they smell fear?  Is it because my blood is potentially sweeter than that of my counterparts?  Are they attracted to the smell of synthetic insulin?  Are people with diabetes particularly attractive to bitey bugs?

Whatever the case, I have laundry to wash, a suitcase to unpack, and a million bug bites to itch incessantly.

Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

Untethered, After a Fashion.

Around 8.30 am, I took an injection of Levemir.

At about 9 am, I switched my basal profile to “OTHER” and disconnected my insulin pump.  The OTHER profile has me at 0.025U basal rate per hour (as close to zero as I can get on my pump) but still holds all my other settings.  I kept the pump in my purse and the infusion set attached to my body, with one of those pump caps (there are two that come with every box of Insets) to keep the site closed.

At 9.03 am, I put on a skirt with a loose waistband that had previously been tugged down by the weight of my insulin pump BUT NOT ON THIS DAY.

Throughout the day, my basal needs are served by the Levemir injection, but I reconnect the insulin pump to deliver my boluses (allowing me to take my meal boluses and correction doses with precision and also without piercing my skin another time because the infusion set is still in place).

Around 9 or 10 at night, my Levemir injection is pretty much toast (over the years, I’ve seen that Levemir leaves my system after 12 hours, so I usually split my dose completely on pump vacations), so I reconnect my insulin pump and spend the overnight connected, receiving the basal bump at 5 am that is delivered to combat the dawn phenomenon my body experiences.

And then, depending on what I’m doing the next day, I’ll decide to keep my pump on or off during the day.  The Levemir pen in my toothbrush holder serves as a reminder to take a morning dose, if that’s my jam.

I like having a choice.  Can’t un-choose diabetes, so having a choice as to how I deliver my insulin is a plus.

It sounds complicated, but it works for where I’m at right now, because I am aiming to make good on the whole “fit diabetes into life, not work life around diabetes.”  And as petty and superficial as it may sound, it made me bananas (read: super angry, not yellow and slippery) when I went to get dressed for the sticky, summer heat and didn’t have a good place to shove my pump.  On the waistband pulled my skirt down.  Between the cups of my bra made for weird lumps and also unnecessary warmth.

This kind of frustration is the shit that can send me into a week-long DBM (Diabetes Bad Mood) and I am trying to mitigate as much of that as possible.  So off came the pump.  On came the highly structured plan to untether in the most graceful way possible.

Keeping an eye on my CGM showed when things were working and when things need tweaking, and I felt at peace with my diabetes instead of Rage Against the Islets.  Which, while a solid band name, doesn’t do much for my emotional health.

Pulled Over.

I had just buckled the girls into their car seats and was ready to make the drive home from day camp, and as I turned the car on, I reflexively grabbed my Dexcom receiver to take a peek at my blood sugars before I started driving.

Shit.  68 mg/dL with an arrow straight down and a blood drop signaling a need for calibration.

“Hang on guys,” I said to my daughter and her friend, who were already singing camp songs in the backseat.  “I need to wait a minute before we head out.”  I pricked my finger quickly to check my blood sugar and, sure enough, saw the 63 mg/dL on my meter waving its arms at me.  No worries – I always have a jar of Glucolift in my center console.

Except this time.

Shit.

“Hey girls. Do you guys have anything left in your lunches?”

“Yeah, I have strawberries and a pouch left in my lunch.  Do you want it, Mom?”  Birdy offered.

“Yep.”  I climbed out of the car and went back to the trunk to rummage around through her lunch bag.  Pulling out the snacks, I gobbled them while standing at the back of my car, a mom on a mission to bring her blood sugar up before driving.

We sat in the parking lot for ten minutes or so, and I watched the CGM graph arrow relax and point sideways.  A glucose meter check showed me at 78 mg/dL, so I felt I was on the rise.  We started the ride home.

Except the CGM alarm went off 15 minutes later, only this time it showed double-down arrows and the BELOW 55 mg/dL message on the screen.

“Shit.”

Certain parts of Rhode Island are relatively rural, and sometimes you have to drive for a while before you pass a gas station or a convenience store.  I immediately started calculating when I’d pass the next place to stop.  I also assessed my symptoms (none) and instinctively reached over to disconnect my insulin pump from my hip.  I thought the two little kids in my car.  I thought about where I could pull over.  I worried about what was safer: driving for another minute or pulling over and not having any food in the car.  And I hoped that worrying so intensely would make me feel stressed and hopefully jack my blood sugar up a little more.

But then, just ahead, I saw the familiar orange and brown sign of a Dunkin Donuts coffee shop.

“Yes.”  I put on my blinker and pulled into the drive through lane of the coffee shop.  “Girls, I need to stop here and get an orange juice, okay?”

“DOUGHNUTS!!!!!” they yelled in unison.

“Not this time, guys.  I need to get some juice and wait a few more minutes before we can keep going.”

Minutes later, I was in the parking lot with an empty bottle of orange juice and two patient kids in the backseat of the car who were peppering me with questions about diabetes.

“Why did we have to stop?”

“Because I needed juice to treat a low blood sugar.”

“What’s a low blood sugar,” asked my daughter’s friend.

Birdy piped up.  “It’s when you have diabetes and you have too much insulin or not enough food in your body and you need glucose tabs or juice or doughnuts but not today because these doughnuts have gluten in them.”  (All in one breath.)

“No doughnuts?”

“Sorry, guys.”

“Can we drive soon?”

“Yes.”

“Okay, can we sing until we start driving?”

“Sure.”

We sat in the parking lot while I waited for the orange juice to do its thing, keeping an eye on my CGM graph and an ear on the two little kids in the back of my car who were belting out songs they learned at camp and who trusted me to take good care of myself in order to take good care of them.

Only no doughnuts, because gluten.

 

Couched.

“Can I lay here?”  I pointed to the almost-available section of the couch, where if Chris moved his legs juuuuust a little bit and Siah got her fat furry butt off the cushion, I could curl up and let my brain go quiet after a full day of writing.

“Sure thing,” and Chris adjusted his body.

“No,” was the message Siah sent me with her cat telepathic powers, but I snuggled in anyway.

And in one, seamless movement, the couch cushion leapt up and grabbed the infusion set from my arm with its teeth and ripped it off.  The couch’s fangs were gigantic and its talons just as daunting, determined to keep any diabetes device from properly resting against my skin.  I was livid – this infusion set was only a day old! – but I knew I was no match for the couch.  It was huge, and it had an agenda of rage.

I eased away from the cushion slowly, trying to keep from agitating the angry beast.  The couch snarled and tensed, poised to make a play for my Dexcom sensor if I dared to get comfortable against its fabric again.

“You okay?”  Chris asked.

“Yeah.  The couch ripped off my infusion set,” I started to say, and then I felt the slow drag of couch claws against my shin, warning me to embrace silence.  “I mean, I ripped off my infusion set.  I did it.”

The couch quieted and settled back against the floor.  And I went upstairs into the bathroom to put a new infusion set on.  And when I came downstairs, I sat on the floor, the steady breath of the wicked couch prickling the hairs on the back on my neck.

“Next time …” it panted like Dr. Claw.  “Next time.”

 

Running the Gamut of Emotions.

In my diabetes life, emotions are right up there with insulin and food as influencers of blood sugar management.  And I wish it wasn’t so, because stress and excitement are hard to “plan.”  (Replace those actual quotation marks with finger quotes, because they fit the bill a bit better.)  And the emotions that come up as a result of diabetes crap?  Holy shit, they are a circus all their own.

The emotions of diabetes are a thing for me, and one that I need to work to manage as fastidiously as I work on my numbers.  Which is why my Animas column this month is about that exact thing:

“Diabetes is more than the lab work results and pricking fingers, taking insulin, counting carbs.  That’s the to-do list we have to check every day, but it doesn’t even begin to touch the other side of life with a chronic illness, and that’s the headspace part.  Some of my academic friends call it the psychosocial part; I think of it as the emotional portion of managing my diabetes, and in my life, managing my headspace is as important as managing my blood sugars.

There’s a whole range of emotions connected to diabetes that I run though on any given day.”

For the full article, click over to my columns at Animas.  And for more on emotions and diabetes, you can basically read anything I’ve ever written here on SUM.  :)

Feed Me.

“I spent [insert slightly obscene amount of money] at the grocery store this afternoon … again,” I said as I put the grocery bags on the kitchen floor.

Chris looked over and assessed the content of the bags.  “It goes into our bodies.  This is what we should be spending our money on.”

Food is an important topic in our house, ranging from its complicated relationship with my diabetes, its influence and  role in my daughter’s health, and overall how society pushes a confusing food agendaFood is a reward.  Food is a punishment.  Food is confusing as fuck and I’d rather just view it as food.

But as much as I’d like to say that I follow all the “rules” and do right by my body at all times, I slip a lot.  Unhealthy food habits creep their way into my regimen almost unnoticed at times.  (Sneaky little bastards.)  For example, about a year ago, I actively tried to cut back on the amount of coffee I was drinking, but after a few months of half-decaf and picking water over iced coffee, I found myself reintroducing that second, and then third cup of caffeinated awesomeness.  (Because that’s a huge problem for me – coffee is awesome, and I like it very much.)  But despite how much I might want to snuggle up with a giant iced coffee, it’s bad news to consume so much of the stuff.  I need to scale back.

I also have a tendency to defer to things like prepackaged and pre-measured yogurt in order to take a crack at keeping blood sugars from going nuts.  If I need a snack, it’s easier to reach for something already carb-counted, but that’s not always the best plan because I’d much rather avoid pre-packaged, if I can.

I won’t even mention the gluten-free journey, because that’s been an exercise in dedication and frustration all unto itself.

Basically, I’ve worked hard to cut out some bad eating habits, and some of them are working their way back in.  This trend needs to be met with an “Oh hell no” because I work too hard at being healthy to derail efforts by something as daily as food.  I need to revisit food logging, even for just a few days, to realign my brain with my mouth and hands.

In the past, I used an app to log food choices, but this time, I have a sharpie marker, a piece of printer paper, and a firm resolve.  I need to see my choices in black-and-white (or, specifically, teal-and-white, as the teal sharpie marker is really lovely) so I can make better choices.  Otherwise, I’ll end up swimming in an endless pool of iced coffee and protein bars.

… which kind of sounds delicious, aside from the whole “protein bars looking like poop” thing.  I think I need to stop this post now, because it just derailed.

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