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Posts tagged ‘type 1 diabetes’

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.

My IOB and Me.

There’s a lot of data that PWD (people with diabetes) spin through on a daily basis – carbs counts, insulin units, blood sugar results, blah, blah, blaaaaaaah there’s so much shit sometimes.  I’ve been encouraged by my endocrinologist to download my data and review it every week or two in order to assess trends over time, but I don’t do that as often as I should.  I’m more of a monthly downloader, and I definitely download every night-before-the-endo-appointment, but a systematic review of my diabetes data is one of those things I could do more consistently.

However, the data is crucial to my health success.  I just tend to lean more heavily on the daily data than the month-long reviews.

Like my beloved IOB.  IOB stands for “insulin on board” and it’s a tool in my insulin pump that calculates how much insulin from my most recent boluses is still “active” in my system.  And I don’t know if most pumpers love their IOB data as much as I do, but I LOVE mine.  Love.  Stupid love.  It’s part of the trifecta of diabetes that I rely on every night before bed.

The checklist is short, but always, always the same: every single night before I go to bed, I check my blood sugar on my meter, comparing that number against the CGM graph.  Then I click through on my CGM graph to get feel for how the day has mapped.  And then I click through on my pump to check my beloved IOB to see how much insulin might be in play.  (Okay, honestly I check on my daughter in her bed first.  She’s usually asleep with her hair tousled into a huge mess against her pillow, with Loopy curled up against her legs.  But then I do all the diabetes garbage.)

Checking the IOB in conjunction with the CGM graph and my glucose number gives me a fighting chance against middle-of-the-night hypoglycemia.  And in the last year or so, it’s been a check that’s worked really well.  Several times (last night, for instance), I will look at my data sources and determine that a low might be teased out overnight, and I can pop a glucose tab or run a temporary basal rate on my pump for an hour or two to keep me in range.

My overnight lows are way less frequent than they ever have been before, and that means I clean juice and sweat from my sheets way less often, so there is a practical bonus aside from the whole “not going wicked low while sleeping” thing.

There’s the takeaway:  IOB monitoring helps cut back on laundry.  Use all the money you save on detergent to buy a bionic pancreas!

 

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.”

 

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.

Time Consuming.

“Thank you for calling [insert every company name I had to call yesterday here].  Please listen carefully, as our telephone options have changed.”

“Please press one to continue in English, para español oprima dos.”

“Press two if you are a patient, press three if you are a provider, press four if you are a member of the media, press five to return to the main menu, press one if you noticed that we skipped right to two and didn’t mention one.”

“Enter your twelve digit prescription number.”

“Enter your date of birth.”

“I’m sorry – your date of birth is not valid.  Please re-enter your date of birth starting with a two digit month, two digit date, and four digit year.”

“Enter your six digit group number, followed by the date of birth of the primary policy holder.”

“What is your shipping address?”

“I’m sorry – I didn’t understand that.  Can you please confirm your shipping address?”

“Your shipment will be to you in seven to ten business days.  One of your orders requires special packaging and will arrive on your doorstep wrapped in pillows of ice with penguins stamped on the side and your neighbors might think you have ice cream delivered every three months in bulk but you and I both know it’s just insulin – wink, wink.”

“Your confirmation number will be given to you at the end of this call.  Please be sure to write that confirmation number down.”

“If you’d like to enroll in our automatic refill program, please listen to the following message.  If you don’t want to enroll in our automatic refill program, please listen to this message because you can’t hang up until you hear the confirmation number.”

“Please hold while we process your request.  Do not disconnect before hearing your confirmation number.”

“Your confirmation number is the sum of 5+4-(323 x 423)/9.  Would you like me to repeat your confirmation number?”

“Press three to speak with a customer service representative.”

“Are you sure?  Press three again, twice and really fast, to speak with a customer service representative.”

“Please hold while we transfer your call.”

“Thank you for continuing to hold.  Please continue to hold.”

“Thank you for holding.  We heard you pee, even though you thought we were on mute.  Thank you for washing your hands.  Please continue to hold.”

“Hoooooooooooold.”

“Still hold.”

“Thank you for calling.  Please listen carefully, as our telephone options have changed.”

 

Flick of the Wrist.

In the interests of getting through TSA in Orlando as quickly as possible and making my way over to my gate so I could find some iced coffee and a banana, I disconnected my insulin pump and put it through the x-ray machine, caring very little if it melted in the transaction because I was melting in the transaction.

The tram to the gates was arriving just as I was finished at security, so I grabbed my pump off the tray and held it in my hand. dragging my bag to the shuttle. Just after “stand CLEAR of the closing doors,” I reached around to the top of my hip and reconnected my infusion set, sticking the pump into my pocket.

A woman boarded the tram, her infant daughter strapped to her chest. I noticed her noticing me while I reconnected my pump.

“Insulin pump?”

“Excuse me?”

“Is that an insulin pump? Sorry – my son has diabetes and I recognized the pump.”

“Oh, yes.” I searched her wrist for an orange or green CWD bracelet but didn’t see one. “Were you here for the conference?”

“What conference?”

“The diabetes conference. It’s called Friends for Life and it’s put on by an organization called Children with Diabetes. It takes place here in Orlando, over at Disney.”

She smiled. “I’ve never heard of it, and I live right here in Orlando. What’s it called?”

“Friends for Life. It’s a diabetes conference for families with diabetes. Lots of kids with type 1 attend with their parents, and lots of adults like me who go to connect with other adults who have diabetes. It’s really nice, like diabetes camp. Community helps, you know?”

She nodded, and the baby on her chest flapped her arms happily. “My son goes to camp. He loves it. But I’ve never heard of the conference before.”

I reached into my bag and fished around for a pen. Nothing. Checked my pockets for a business card. Nothing. The tram was about to stop and ditch us at the gates, leaving me just a few seconds to try and explain how a few days in Florida can change your life for the better.

“What’s the conference called again?”

I grabbed the edge of my green bracelet and pulled it off my wrist.

It's on. #ffl15

A photo posted by Kerri Sparling (@sixuntilme) on

“I know this seems weird to hand you a slightly-used conference bracelet, but the URL for the conference website is on it. Everyone who has diabetes wears one of these green bracelets. You see one of these and that person understands, you know?” I handed her the bracelet, pointing at the website address. “I hope this doesn’t seem creepy. It’s just an amazing experience, being around all of those other families, and it would be great to have you and your family check it out, if that’s your thing.”

She took the bracelet and put it in her pocket. “This is very nice of you. Thank you. I’ll check it out for sure.”

The tram doors opened and we stepped out.

“Where are you headed home to?”

“Rhode Island.”

“And you come here just for that conference?”

I thought about the week that had just passed, when I was surrounded by people who redefined family.

“All the way here. Green bracelets are pretty awesome.”

She waved, and her baby waved, too. “Thank you for passing this along. Safe travels back home. Maybe we’ll see you next year.”

Usually when I board the plane home from Friends for Life, I like to look down at my green bracelet because it reminds me of my PWD tribe.  This year, with a flick of the wrist, I was grateful it had found a new home.

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