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Looking to make a difference? Here’s how.

Scrolling through a newsfeed these days can be downright painful.  There’s not a lot of happiness or success being highlighted, and that can take a toll on your mental health.  What can you do to make a difference?

There is something you can do.  Something you can do this minute.  And your actions have the power to save the life of a child.

Today marks the beginning of the Spare a Rose campaign, which runs every February 1 -14th.  The idea?  Instead of buying a dozen roses for your loved one, buy 11 and take the value of that spared rose – about $5 – and donate it to IDF’s Life for a Child program.

“Living with type 1 diabetes can be challenging wherever you live, but in some countries lifesaving insulin, management tools and education are entirely unaffordable or even unavailable. Life for a Child partners with diabetes centres in these countries to supply young people with these vital components for life. We are working towards the vision: No Child Should Die of Diabetes.

The program commenced in 2000 and currently supports over 18,000 young people living with type 1 diabetes. In 20 of the 42 countries where we work, we have the resources to help every diagnosed child. With your support, we can achieve this in all 42.”  – LFAC website

I looked in my fridge this morning and saw three months worth of life-saving insulin sitting there, all casual, in my butter compartment.  Seeing that stash of insulin made me feel lucky.  So I spared a rose.

And I hope you will, too.

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You can participate in the Spare a Rose campaign by sharing the donation link, spreading the word on social media (use the hashtag #sparearose), and asking folks in your family, neighborhood, and office to consider joining the efforts.  Thank you for helping make this campaign a success and for taking care of our diabetes community both here at home and across the globe.

Guest Post: DiabetesSisters Voices.

When it comes to research related to diabetes, I want to support those efforts as much as I can.  The power of sound data, plus patient stories, can move the needle on therapies, treatments, and empowerment for people living with diabetes.  Today, I’m lending my website to my dear friend Karen Graffeo, who wants to share some information on the DiabetesSisters Voices project.

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What do you think of when you hear the words “diabetes research”? To be honest, until recently I thought of really smart people wearing lab coats. They might be trying to cure diabetes or working on diabetes prevention. They could be researching better treatments or they might be running clinical trials. And I also wondered if they might be researching things that don’t really matter to me as a patient. But when I thought about diabetes research, I never imagined it could include connecting with other women with diabetes from the comfort of my own home. And often while still wearing my pajamas!

My perception of diabetes research changed when I became part of the DiabetesSistersVoices project. DiabetesSistersVoices is an online community that combines forums with research. Members use the forums to ask questions, share experiences and search for resources. We chat with each other about what is important for improving our health and well-being, and our discussion will later help guide the research community.

Anna Norton, CEO of DiabetesSisters, explains more about this project. “We created DiabetesSistersVoices through a collaboration between DiabetesSisters, The Johns Hopkins University, The University of North Carolina, TrustNetMD and our Stakeholder Advisory Board of women and diabetes advocates. This project was funding through an engagement award from the Patient-Centered Outcomes Research Institute (PCORI). Our goal is to provide an interactive, engaging website for women with all types of diabetes. The conversations that happen will help us determine the unmet needs and unanswered questions that women with diabetes have.”

At the end of the project, the top research and health care questions will be collected for a final report: The Patient-Centered Women’s Health and Diabetes 10Q. This report will help policy-makers, advocates, researchers, clinicians and other groups to better understand what priorities in research should be.

I’m serving as moderator of the site, and it’s really exciting to see all kinds of conversation and questions being discussed.   But it’s important to have as many voices participating as possible, so we can truly represent the needs of all types of women with diabetes. If you are an adult female in the United States and have been diagnosed with type 1 diabetes, type 2 diabetes, pre-diabetes or gestational diabetes, you are eligible to participate in this study. Go to our website www.diabetessistersvoices.org and click “Register”. Once you’ve completed a screening and an online consent form and survey, your account will be approved and you can join the conversation and help drive important research.

I hope you’ll register and come connect with us. We need your voice and your perspectives in our discussions. And you don’t even have to change out of your pajamas first!

Find DiabetesSistersVoices at https://diabetes-sisters-voices.org. Follow the project on Twitter at @ds_voices.

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Thanks for all of this information, Karen!!  I’m signing up today. 🙂

An Alarming Talk.

I had twenty minutes before my talk, so the double-down arrow didn’t unnerve me too much.  The TypeOneNation event in Connecticut had tables full of coffee, tea, juice, and other snacky things.  I grabbed a bottle of orange juice and downed it.

“We’ll mic you up and introduce you in a few minutes, ok?” the organizer asked.  I nodded, trying to pretend my brain wasn’t trying to remember my own name.

Usually, I try and run my blood sugars a little higher before I have to give any kind of presentation, keeping my numbers around 140-ish.  This strategy works, most of the time.  In the last ten years as a speaker, I have never gone low on stage.

Until that day in Connecticut, where I was tanking hard.

CGM alarms blaring, I had five minutes before I was supposed to be on stage.  I popped a handful of orange cream glucose tabs and chomped them up.  Low symptoms were in full effect, making my tongue clumsy in my mouth, the words hitting my teeth and getting chipped on their exit.

Thankful for a good friend in the audience, I tagged Karen for help.

“Karen … I’m dropping like mad.  Can you keep an eyeball on my CGM while I’m doing my talk?”

Friends will sit in the front row when you give a talk.  Good friends will sit in the front row with your CGM shouting into their face.

Glucose tab jar in hand (brushing glucose tab dust off my shoulder), I took to the front of the room and tried to explain my awkwardness.  “I’ve never been low during a presentation before.  It’s always been a concern of mine, but it’s currently happening.  Sorry about the glucose tabs in my hand.  And the CGM alarms going off from my phone.  And sorry if it takes me a minute or two to get my bearings while I start up here.”

If you want to feel instantly understood and empathized with, have a low in front of a room full of JDRF families.  Several moms in the audience held up snacks and gestured towards them, with “if you need it!” eyebrows.

It took me a good few minutes to climb back into functional range, but once I was back, I was able to talk without jumbling up my words.  After the talk, several people mentioned how “real” it was to watch the keynote speaker have a hypo right in front of them.  I was grateful for their understanding.

And I was able to check off “hypo on stage” from my bucket list.  Next up, perfecting this hot dance move:

I’m Not.

I’ve never had nightmares like this one before
Problem is, when I wake, it’s still there and I’m floored
Because every damn day there’s another news flash
Showing me that some leaders just follow cash.
I used to be iffy, and then was concerned.
But panic is what this new paradigm’s earned.

I’m a person and with me comes chronic disease
Not my fault but it’s mine until I cease to be.
I spend many hours maintaining my health
Despite big bites that it takes out of our wealth.
I have so many bills, premiums, and copays;
I sort them by health issue, person, and phase.
Hours on phone calls that are beyond numbing,
Yet bills for the baby I lost keep on coming.

“It’s not covered.” “Denied.” “You’re a burned down house.”
I wish I was that squeaky-cured research mouse.
“You can enter this risk pool.” But I need flotation
Not rejection from this powerful first world nation.

I’m scared and I’m nervous but I am empowered
Refusing to believe our whole country is soured.
I stand with my peers and I hope for the best
And until this is sorted, I refuse to rest.
I marched in a march and written my reps.
But there’s more I can do. There’s a series of steps.
Time to act, to rise up, to realign thoughts.
I know there’s a system.
It’s broken.

I’m not.

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If you know of places where people can take action and raise their voice, please leave links in the comments. Liking a Facebook status or a Twitter post is good, but making phone calls, writing letters, and standing up for your rights can be so much better.

Five Months.

To my Guy,

Five months old!  (And I’m pretty sure I forgot to write you a letter at the four month mark, so here’s a quick high five for turning four months old a bit back, too.)  Five months ago, I was excitedly awaiting your arrival and folding piles of baby clothes.  Now, I am greeted by your big, toothless smile every morning while you excitedly slap your legs against the crib like a mermaid.

Sorry.  MerMAN.

You are a tiny sweet potato with an appetite for both pears and destruction.  Despite being on the more petite side at the moment (single digit percentile for weight and barely double digits for height), you eat like you are a teenage boy.  In the last few weeks, I’ve had trouble keeping up with your food demand, so we’ve started working in the occasional formula bottle here and there.  I’m still breastfeeding and pumping as often as possible, but you need to eat, so formula is at the ready for the moments when I’m not.

You’re more tolerant about tummy time these days and you spent a lot of time on your play mat.  (Although when you’re feeling done being on your stomach, you fling yourself to the side to roll over, like you’re trying to roll down a hill.)  Just like your sister, you are content to holler happily at the plush animals dangling overhead.  This morning, though, you slammed a rattle against your head and engaged in your first “crying because of little injury” jag.  Real tears. It sucked.  And now you are giving that rattle some major side-eye.  Welcome to the world, little Guy.

Real food is also a recently introduced thing, and you’ve joined us at the table in your very own (belonged to your sister and is more than six years old but whatever – we like to save stuff) high chair.  The food you’ve tried so far are pears, and that first go wasn’t very successful.  Lots of confusion about what on earth a “spoon” is and also WTF “pears?”  But now, a few days and many attempts later, you wait with your hands on the high chair tray all excited, ready for the SPOON! and PEARS! and the mess that follows.

At the table. #milestone

A photo posted by Kerri Sparling (@sixuntilme) on

In the last few weeks, you’ve gone on your first trip to New York City to meet some friends, slept over at your Grammie’s a few times, and you’ve decided that Loopy is your favorite cat because she has a fluffy tail and she walks circles around you and makes you laugh, while Siah is the one who watches you sleep from afar, not daring to go closer but keeping tabs on you all the same.  The world is starting to crack open and let you peek inside, and it seems like you’re a fan.

It still amazes me, even though I’ve done this once before, how quickly the weeks change you.  You used to be a little thing with half-closed eyes and unable to hold up your own head, snuggled carefully and warmly against me at all hours.  Now you’re this much sturdier little man, smiling all the time and entertained by books, patty cake, and the series of foolish songs we make up and sing to you.  I’m afraid to blink because you’ll be crawling, then running, then refusing to eat your eggs before school every morning.

Time goes by very quickly, and I’m trying to appreciate these moments when you are little.  

Thank you for being part of our family. And for sleeping. And for the smiles that make me feel like I must be doing something right. You’re my littlest friend and I love you bunches.

Love,
Mom

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