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Posts tagged ‘emotions’

Revisiting Resolutions.

Almost a year ago, I resolved (in that non-resolution sort of way) to aim for more balance in 2013.

Now it’s October, and I’m fairly sure the quest for some kind of balance wasn’t entirely achieved.  But that’s okay, right?

Maybe it’s not about achieving balance, but staying in constant pursuit of it.

Did you set resolutions for 2013?  Now that we’re at the end of the year, how strong was your resolve?  (Isn’t there a rug cleaner called Resolve?)

Despite Insulin …

The Sparling household has reached a frenzied pitch of stress this week, with a big project for me reaching the finish line simultaneously as a big project for my husband begins.  Overall, we manage our family circus (… could Billy ever get anywhere without leaving a trail of dashes in his wake?  Gross.) without stepping into the ‘unhealthy’ zone, but the last few days have been an exception.

For me, stress usually leads to higher-than-normal blood sugars, even despite insulin.  (Or “to spite insulin.”)  And not in that, “Oh, I didn’t bolus enough, so I’ll just correct this high,” sort of way, but in the “What the EFF – I just rage bolused the hell out of that blood sugar and it still won’t budge.”  This week has been all sorts of that, with fasting blood sugars as the only ones I’m comfortable keeping.  For the last few days, it’s taking 150% basal to keep me even close to range, and my insulin:carb ratio has been tweaked to accommodate the exceptionally busy week.

That 233 mg/dL?  All emotional, no other influence.  Insulin is good, food wasn’t introduced yet, basal rate was solid, and no I’m not pregnant.  I was 108 mg/dL an hour earlier.  This high was the product of stress.  It always amazes me to see how tightly woven my blood sugars are to my emotions.

The bad news is that my meter average, with which I was very comfortable last week, has gone to absolute shit.  I feel more tired and the highs are making me feel grumpier and shorter-tempered than normal.  (Which, if you’ve met me, is sadly saying a lot, because my average fuse is the length of a whisper.)  I’m not able to parent the way I’d like, because these highs are sapping me of my funergy (energy for fun).  I hate when diabetes derails time with my daughter.

The good news is that I know the cause of these diabetes radar blips, and I know things will be much more manageable in a few days.  Until then, I need to do whatever it takes to coast.  Testing more and correcting while taking the insulin-resistent instigation of stress into account?  Trying hard not to consume coffee as though it’s a necessary and actual basal rate?  Moments like these make me thankful for the CGM, because I can respond to trends, and I get a head’s up when I’m over- or under-compensating for stress.

For now, I’m in “just keep swimming” mode, hopeful that the highs will abate and leave me the hell alone in a couple of days.

Friends for Life Frenzy.

Bringing Birdy to the Friends for Life conference was awesome, because I was finally able to introduce my bonkers Birdzone to my friends in the diabetes community.  (And by “finally,” I mean in a way that counted.  When I brought Birdy to the conference when she was two months old, it barely counts, because she was more in the “burping and pooping and sleeping,” which she’s still into, but in a different capacity.  Except the “sleeping” bit. She’s not really into that.)  This year, my daughter was part of the party.

This year’s Friends for Life conference was different, for me.  With my mom and my daughter traveling with me, my perspective was skewed, seeing the conference through my own eyes (as an adult T1D PWD and faculty member), my mother’s (the parent of a grown-up CWD), and my daughter (the kid of an adult T1D PWD – holy acronym).  I watched as my mom worked to find her footing, immersing herself into a large network of other parents, even though her own kid was now grown.  I watched my daughter reintroduce herself to some of my favorite people, like Scott and Christel, and hug them fiercely.  I saw how Friends for Life could touch the lives not just of people living with diabetes, but for the people who care about the people living with it.  Because they’re also living with it.

As part of the conference team, I was responsible for co-leading several sessions, including the impact diabetes has on dating, a discussion about pregnancy, one about parenting, and a session on social media and the diabetes online community.  These discussions always serve to reignite my passion for connecting with other people who have diabetes, and talking about ways to improve our collective experiences.  (That, and they’re fun.)  More on these talks later, as I unpack suitcases and reclaim the parts of my brain that smash words together.

It’s a busy conference – lots of running around – and the breaks are brief and coffee/glucose-tab fueled.  There are so many people there that I want to talk to, and so many that I want to give huge “thank you” hugs to.  Running from session to session, with stop-overs at daycare to bring Birdy to the bathroom and then drop her back off with the other little kids, I felt like there wasn’t ever enough time to do or see it all.  I wanted to slow everything down, but the week rushed by at an incredible pace that left me hoping for ways to stretch hours into days.

It’s sometimes too much, trying to find words to describe how this conference has changed my life over the years.  I knew I wasn’t ever truly alone, but sometimes diabetes can capture you in a cage of isolation, making you feel like even small changes are too big to make.  But then you look around, right?  And you see the sea of green bracelets on the wrists of people whose pancreases are the same as yours, holding tight to family members with orange bracelets, and becomes more than diabetes.  It’s more than insulin.  It’s more than meters.

On Thursday night, at the FFL banquet, Scott and I were honored with the Friends for Life award, recognizing our work on our respective blogs, and also in helping to bring the “adults with type 1” track to life for the conference.  That night, I couldn’t figure out what to say.  Even now, a few days later, I still don’t know, other than a “thank you” that doesn’t even begin to scratch the surface.  But I do know that those awards stand to recognize not just individuals, but what the DOC has done and changed over the last decade.  Every voice matters, and every story heals.  For me, sharing these stories has been part of the prescription for good health.  Being part of this community has improved the way I manage my diabetes, and I am forever grateful.

Our lives are all different, from those without diabetes, and even within our own diabetes community.  In a week at Friends for Life, we learn that our differences can be empowering.  And our sames can be uniting.

“Mawm, I wuv confwences,” Birdy told me, spinning the orange bracelet on her wrist.

I touched her orange one with my green one, and she smiled.  “Me too, love.  Me too.”

My Little Orange Bracelet.

At the Friends for Life conference, people who are living with type 1 diabetes wear bright green bracelets.  Green bracelet’ers are the people who know what my diabetes life is like, from the injections to the blood checks, from the guilt to the successes.  They get it.

But the orange bracelets go on the wrists of the loved ones of people with diabetes.  The moms and dads.  The siblings.  The friends.  The people who take such excellent and compassionate care of PWDs.

And this year, there’s an orange bracelet on the wrist of my three year old daughter, who is experiencing her first Friends for Life conference.  She’s played with beach balls in the exhibit hall and covered her name badge with stickers, danced in restaurants while waiting for ice cream, had her face painted, and made art projects out of colored pom poms and pipe cleaners. She’s meeting other mommies who have type 1 diabetes, who wear their insulin pumps on their hip and test their blood sugar.  And she’s meeting other little kids who have parents who are wearing green bracelets, who know that glucose tabs are for “whoa bwoodsugars” and that our bags are always packed with snacks … for everyone.

This is the magic of Friends for Life – it’s not just magical for me anymore.  It’s for her, too.

RIP, PTC.

Our cat, Prussia (known formally as Prussia the Cat, or PTC) had been ailing for a few months.  And over the last week, her decline was fast.

“She looks really skinny.  And her breathing is labored.  Also, I think she peed on the floor over there.  She’s definitely getting much sicker.  We should bring her to the vet.”

But Prussia had other plans, deciding to go outside and burrow underneath our back deck.

“This is exactly what the cat we had as a kid did when it was ready to die.”  Chris’s face fell.  “I think that’s what Prussia is doing now.”

We waited all day for Prussia to come out, but she didn’t.  We looked under the deck with a flashlight (the deck is very, very close to the ground, with barely enough room for a very skinny cat to hide), but couldn’t see her.  And even when we put food on the deck, and called for her, and brought out toys that normally enticed the cat to make an appearance, but she was a no show.

“I think she’s dead.  Poor cat.  If she’s not back by tomorrow morning, we should tell Birdy.”

The following day, after waking up and scouring the yard (and searching underneath the deck again) without finding a trace of Prush, we sat Birdy down to tell her what had happened to her cat.

“Birdy, Prussia was very sick.  And she wasn’t getting better.  She died, and she won’t be coming back.”

Birdy took the news like three year olds do (or so I was lead to believe, after reading countless articles about explaining death to small children – be direct, be very honest, and don’t be afraid to say, “I don’t know,” when they ask difficult questions.) – she bounced on her bed and said, “Can we get a new cat?  One with a really big head and a giant nose?”

It wasn’t until late that night, after Prussia had been missing and assumed dead for over 30 hours, that the mostly-dead cat showed up on the back deck, staring at us through the screen door.

“Chris?  Chris, can you come out here?”

And when he came out to the kitchen and saw PTC on the deck, his jaw about hit the floor.  “But she’s … that’s … ” and before he could finish, Birdy came skipping out of her room and said, “Hey! That’s Prussia!  She’s not dead anymore!”

But it was clear that Prussia was in a bad way.  She wasn’t purring, she wouldn’t eat, and she was barely able to hold herself up, deciding instead to collapse slowly against the kitchen floor, breathing heavily and looking so sad.

Chris and I talked about what the best course of action would be, and we decided to take her emergency animal hospital.  If there was anything they could do to help Prussia, we wanted them to do it.  And if there wasn’t anything they could do, we wanted Prussia to be cared for with compassion and kindness.  So we got out the cat carrier and we all said goodbye to Prussia, petting her on the head and giving her a last snuggle.  “Bye, Prussia,” said Birdy, touching the cat gently on the nose.  “See you when you get home from the hospital!  Love you!”

Ultimately, after talking with the doctor and finding out that the tumors had spread to her lungs and to her chest, there wasn’t anything we could do to “fix” our cat.  And, according to the vet, Prussia was suffering.  As much as I make jokes about the cats and how annoying and daft they seem some days, they are wonderful little critters and part of our family, so to have to say goodbye to Prussia, so soon after saying goodbye to Abby last summer, was horrible.

Bad is having to explain to a three year old that their cat, the one they like to crawl around on the floor with and have long conversations about trees and bugs with, is dead.

Worse is when that same cat shows up, a day later and close to death, staring at us through the screen door, and then bringing her to the animal hospital for evaluation, giving our kid the impression that “death” comes with a varying definition.

And the absolute suck is when you have to make the impossible decision to have the family cat euthanized, and then re-explaining to Birdy how the cat is dead.  Again.  Only it was harder than the first time, because she had just seen the cat, and the cat “seemed fine.”

“So we will get her from the hospital and she’ll feel all better!”  Birdy said, as we tucked her into bed that night.

“No, honey. She’s not coming back.  The veterinarian couldn’t fix what was wrong with her body so she’s dead.  Do you understand what that means?”

“Yeah.  So she’s gone, forever?”

“Forever.”

(At this point in the conversation, we’re trying to ignore the fact that we said this exact same thing to her that morning, only to have Prussia rally and come back for one, last hug.)

“Okay.”  She raised her arms over her head.  “So can we get a new cat?”

“Not right now, Birdy.  We can play with Siah and be her friend still, though.  And if you feel sad about Prussia, it’s okay.  Mommy and daddy feel sad about Prussia, too.  It’s okay.”

“Okay.”

“If you have questions, you can ask us.”

“Okay.”  She paused, wrapping her Bim around herself.  Her view of the world expands every day, as do her concepts of happiness, sorrow, and peace.  I waited for questions about death, and what happens when we die.  I thought she might ask about where people go.  I wondered if she’d ask about her own mortality, or that of her parents.  I prided myself on answering her questions honestly, and directly, and without any confusing imagery.

“Mawm, when I get bigger, will I have boobs under my nipples?”

Nothing in life is certain except death and taxes.  And boobs.

Looking Back: I’m Fine.

Revisiting a post from October 2012 about that concept of, “I’m fine.”  Because, even though I have diabetes, I am fine, but there is that … thing. 

*   *   *

“You have diabetes?  You seem fine.”

“I am fine.”

On an average day, diabetes falls under the “annoying but tolerable” category.  I test my blood sugar, wear any combination of continuous glucose monitoring device/insulin pump technology, do the insulin-to-carb math, eat decently, exercise as often and as hard as I can … blah, blah, blaaaaaaaaah.  For the most part, I don’t see extreme hypoglycemia or excessive highs, and even though I see bits and pieces of diabetes in so many of my daily moments, it’s not something that keeps me from pursuing the better parts of the day.

But on some days, diabetes falls into the “eff the effing islet you refused to ride in on” category.  Those are the days when my infusion set cannula kinks up underneath my skin and sends my blood sugar cruising into the 400′s.  Or the days when a blood sugar of 38 mg/dL serves as a sweaty and panicked wake-up call at two in the morning.  Or I let my brain wander around the fact that I’ve had this disease far longer than I’ll ever have anything else, and I fear the impact of these fluctuating blood sugars on my quality of life, and longevity, going forward.

It’s this weird dance, the one between feeling like diabetes profoundly affects my day-to-day health, both emotionally and physically, and the feeling that diabetes is just a blip on my daily radar.

“You seem fine.”

I am fine.  I think?  I have a chronic illness – a disease – that compromises the function of my pancreas to the point where I need synthetic insulin daily, and even with dedicated management, I may see serious and debilitating complications in my lifetime.  That’s part of the dance – feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of every day.

Is it an invitation for a pity party?  Nope.  But it’s a reminder that even though I feel fine, and I mostly am “fine,” there’s a part of me that permanently needs tending to, and ignoring it only leads to tougher roads.  The lows, the highs feel like they’re ships passing by, but what they may be leaving in their wake scares me.  I don’t live with any difficult diabetes complications at the moment (aside from closely-monitored and currently non-progressive retinopathy), and my A1C is at a comfortable constant, so diabetes does feel quiet and well-behaved at the moment, even after twenty-six years. But I know what it can do, and has done, and what it’s capable of.

“I am fine.”

It doesn’t mean I want people to ignore the severity and pervasiveness of this disease.  I don’t want people who might be thinking about donating their time, energies, and finances to type 1 research, funding, and advocacy to be deterred by the fact that sometimes we look fine.  What those outside of this condition need to understand is that this perception of “fine” is all relative.  One day you can be fine, and the next, things can be deeply and profoundly changed.

For November, the focus of the nation (and some parts of the world) will be pointed to diabetes.  Diabetes will be in headlines, and on television shows, and health and mainstream media websites alike will turn their attention on the disease so many of us live with and care for every day.  It’s in those moments when we need to show the world that even though we seem fine, we still need better treatments and a cure for this mess.  Advocacy is important, and we can make a difference in diabetes in our lifetimes.  Fine is status quo.  Fine is living with insulin therapy. Fine is tolerating stereotypes instead of changing them.  Fine is waiting patiently for things to change.

But we can do better.

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