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Posts from the ‘Diabetes and Family’ Category

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.

A Matter of Apologies.

“I was low.  I was frustrated because of the low blood sugar.  I’m sorry.”

“It’s okay,” and I can tell she means it by the look in her friendly, brown eyes.

I used to be very terrible at saying, “I’m sorry.”  I would hold on to frustration and anger in a way that was not good for me or anyone around me, making a grudge or the need to feel like I “won” the disagreement take precedence over a relationship.  I’d keep “I’m sorry” under my tongue because I didn’t want to admit that I’d done something that hurt someone’s feelings.  I felt embarrassed to admit my shortcomings.  It felt awkward and bad.

It took a long time for my head to figure out that my heart was better off if I let the sorry fly, but once I came to that realization, I tried to embrace as often as I could.  (I also had to work on the “does this interaction make me better or worse as a person?”  This is still a work in progress.)  Now I’m less terrible at saying, “I’m sorry,” and I feel better for it.

As much as I hate to admit it, my blood sugars are not only influenced by my emotions (stress, anyone?) but they influence my emotions, as well.  The way my numbers make me physically feel can cause me to act like a total crumb.  It’s another reason to be aware of what my blood sugars are, and if I enter the Crumb Zone, apologize for it.

I find myself apologizing to my daughter at times for entirely blood sugar related reasons.  Sometimes I snap because I’m taking yet another bolus to correct yet another high and my body is riddled with sugar and rage, and I will be far less than patient with my little one as a result.  Other times I raise my voice because I’m trying to treat a low blood sugar reaction and she’s at my elbow asking to [insert rogue request from active 5 year old here].  Losing my patience during the course of run-of-the-mill parenting is something I am not proud of, but losing my patience because diabetes is leaning on my parenting style is something I want my kid to understand as best she can, because I don’t want her ever thinking my seemingly random outbursts are tied to her in any way.

It’s a weird balance between feeling like I’m blaming diabetes for my actions and simply explaining my actions.  Am I in the Crumb Zone (or Mayor of Crumb City, if you’re nasty) because of diabetes?  Nope.  Diabetes doesn’t get credit or get blamed.  But sometimes this disease is part of the explanation, and I want my family to have a sense for how, and why, I’m wired a certain way.

There are moments when Birdy assumes my attitude problem is diabetes-rYes, this whole post was an excuse to use the Siah-in-a-banana picture again.elated when it’s not, and I’m forced to fess up.

“Are you in a bad mood because of a low blood sugar?” my daughter asks, pointedly.

“Not at the moment.  Right now, I’m in a bad mood because I just realized I left a banana in the car while I was on my trip last week.  And now I’m afraid to open the door and confront the banana stink.”

“It’s okay,” she says.  And then adds, “Ew.”

 

Artist.

While I was making lunch for my daughter this afternoon, she occupied herself with construction paper, markers, scissors … and my glucose meter, glucose tabs, insulin pump, Dexcom, and lancing device.

“Mom, I made all of your diabetes things.”

Hard working artist. #diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

Her creations. #diabetes #diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

#diabeticmommy #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Caught the Bird making construction paper diabetes devices. #diabetes #diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

#diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

“So what’s the deal with the smiley face, Birdy?”

“That’s because you’re happy. And people with diabetes are happy.”

Thank you, thank you, little Bird, for bringing a smile to my face that should have been there the whole time.

Wild Krattsabetes.

Wild Kratts have invaded my house in a big way.  It’s okay, because Birdy loves watching them and she learns all this random stuff about animals.  (“MOM! The lion’s mane is the same color as the savannah grass,” yelled from her car seat as we’re driving.  So I’m learning too, apparently.)  She dons her version of a creature power suit and goes leaping all over the basement, pretending to be a lemur or some other critter.

“MOM!!  He has a Dexcom!!” she said one morning.

“What’s that?” I asked her, coming over and sitting next to her while she’s watching television.

“Look!” and she points to the screen.

Sure enough, the wrist communicator that the Wild Kratts use to talk to their team back at the Tortuga looks almost exactly like my Dexcom receiver.  (Please forgive me, because that whole sentence made complete and absolute sense to me.)  See for yourself:

“You’re right, kiddo!  That looks a lot like my Dexcom!”

“Yeah, but they use theirs not to keep an eye out for whoa blood sugars but to talk to Aviva.”

“Who?”

“Aviva.  She helps the Wild Kratts by building their creature power suits.”

And here I thought Aviva was a glucose meter from Roche.

 

Overheard.

Overheard from my daughter’s playroom, where two stuffed animals were having an intense conversation in high-pitched voices (and one soft toy was pretending to be me):

“Hi, I’m Kerri and we’re going to talk about type 1 diabetes.”  She paused.  “Or maybe type 2 diabetes. But either way, we have to talk about it.”

She makes a good point.  Either way, we have to talk about it.

 

 

Birdy the Kid and Jerry the Bear.

“Jerry has diabetes, like you do, mom.  So I give him food and insulin and check his blood sugar and he likes to play archery.”

A brief pause as Birdy rand her hands over Jerry’s soft bear ears.

“Mom, what’s archery?”


A photo posted by Kerri Sparling (@sixuntilme) on

[Disclosure:  Jerry was a gift from Hannah to Birdy.  We did not purchase Jerry.]

Yesterday, Hannah Chung from Sproutel kindly visited Birdzone and I to drop off a new friend for my daughter:  Jerry the Bear.  Jerry is a stuffed animal bear who has type 1 diabetes, and part of snuggling him and playing with him can also include checking his blood sugar by pressing a button on his paw.  Developed to help kids make sense of their own diabetes diagnosis, Jerry helps normalize diabetes by being a kindred spirit who also needs insulin and glucose tabs. 

He’s a stuffed animal who happens to have diabetes.  Similar to how I’m a mom who happens to have diabetes.

And that’s exactly how I want my daughter to learn about life with diabetes, with the constant, comfortable caveat that diabetes provides a to-do list, but it can be done.  And it can be fun.

Birdy knows quite a bit about diabetes, but mostly the brass tacks sort of stuff.  She likes to press the button on my lancing device (though she’s always surprised when a drop of blood comes out – “Does that hurt, Mom?”  “No, kiddo.”  “Are you sure?  Because I see blood.”), she prides herself on selecting the spot for my insulin pump infusion set, and she has a solid grasp on the meaning of the sounds ringing out from my Dexcom.

What she and I have not discussed, however, is what so many of the numbers mean.  She knows that my glucose meter gives me numbers of some kind and that I respond to them with certain sets of actions, but the numbers aren’t in context.  165 means the same at 50 means the same as 433 … nothing.  They are just numbers, or at least they were, until yesterday.  Yesterday, through her interactions with Jerry, Birdy learned what “high” and “low” look like as glucose numbers.

“Jerry is high.  See?  His number is one-seven-six.  He has to pee.  I need to give him some water and some insulin,” she said to me yesterday and she and Jerry were coloring at the kitchen table.

“Oh yeah?  So what will you do, then?”

“Mom, I already said I will give him insulin.  And some water.  I know what I’m doing.”

“Okay then,” and I turned away so she couldn’t see me smirking.

Later in the afternoon, she asked me how many glucose tabs she needed to give to Jerry if his blood sugar was low.

“How many do I usually take?” I asked her.

“You stack them up on the counter.  You take four.  Is four right, mom?”

(And this is where she teaches me something  – I do stack up the glucose tabs on the counter before I eat them.  I take out a set number and make sure I eat precisely what I take out, to help avoid over-treating and to also help protect me from forgetting to eat enough in the flurry of a hypoglycemic episode.)

“Yes, four should do it.”

“Okay.”  She “feeds” Jerry four glucose tabs and checks his blood sugar.  “Oh, I fixed it.  He’s not low anymore.”  She smiles, satisfied.  “Hey, do you know that if I smush his fur down and draw my finger through it, I can make eyebrows for Jerry?”

I want her to continue to draw eyebrows on Jerry.  Just because his little stuffed pancreas doesn’t splutter the way it should doesn’t mean he should have weak eyebrow game, yeah?

As she learns, I want her to feel safe and feel protected, empowered to ask and to help.  Resources like Jerry aren’t just for kids with diabetes, but for kids touched by diabetes on all levels.  I want my daughter to learn about my diabetes absent discussions about complications, fear, and pity.  I want her to see type 1 diabetes in the context of my actual life, which is filled with joy and chaos unrelated to my health.  She should know about this health condition because it’s part of what I do every day, and part of what she does, too, after a fashion.

Because it’s not about diabetes; it’s about life.

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