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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. 🙂

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.

* * *

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

Makeshift Solution.

Arriving at the hotel last night, I realized my insulin pump needed a swap-and-refill.  I pulled out all the necessary supplies for a pump site change and dumped them onto the hotel bed.

The little insulin bottle protector* I use keeps my insulin safe(r).  But it also covers the vial, so I didn’t realize the bottle was all-but empty until I took it out.

“SHIT.”

I get made fun of for being over prepared.  My purse is a cauldron of pacifiers, extra clothes for the little Guy, spare infusion sets, insulin pens, and lip smacker (oh hell yes).  Most of the time, my shoulders are not thankful for this extra crap.

But last night, I was lucky that I had a spare Humalog pen rolling around in my bag, at the ready to refill my empty insulin pump.  After (all ten thousand of) the air bubbles were knocked out, I was good to go.

(Also, weird note:  I had two insulin pens in my backpack, and one was completely empty, all air.  Does the insulin eek out when I’m flying?  Yes, I keep the pen tip attached to the pen.  And yes, after typing all of this, I realize the insulin is probably squirting out when the plane cabin changes pressures.)  

Thanks, sometimes achy shoulders, for lifting all those “just in case” supplies.  And to my brain for knowing those supplies would come in handy at random.

 

* Here’s where you can buy an insulin vial protector.  Clicking on this link does not make me a cent.  But it might protect your insulin bottle from a SMASH.  So get on that.

 

Full Body.

The scar on my lower abdomen is close to healed, after six weeks of careful care.  The incision is evidence of the arrival of my son, the same place my daughter escaped from.  The skin above the incision is still swollen from months of pregnancy and oddly puckered due to surgery.  It’s not a flat, perfectly sculpted specimen of an abdomen.

But I try hard not to care.  My kids were created here.

The marks on my fingertips move every few days as I use a lancet to draw blood every few hours.  Sometimes the dots left behind look like I stuck my finger into a jar of ground pepper, other times they are light brown marks that appear to live deep beneath the surface of my skin.  But they represent moments when I needed to check my blood sugar and actually followed through on gathering that data.

When I look at them, I see evidence of me taking good care of myself.

The scaly patches of skin on my outer thighs are itchy and refuse to respond to lovely lotions and dermatologist intervention.  They are left behind by continuous glucose monitor sensors that I wear to keep tabs on my blood sugars throughout the day and night.  These skin issues are not comfortable or enviable, but the protection provided by streaming my glucose data helps me to sleep better.

My health is worth the inconvenient itch.

And, of course, there’s the shifting of my body, shaped by time and illness and exercise and pregnancies.  Baby weight.  Aging, even when I don’t remember to.  My leg muscles are softer, but eager to be used again.  My eyes have improved during this pregnancy, somehow.  My blood pressure is carefully watched.  My stomach is paunchier than it was 10 months ago.  I weigh myself to see what’s happened over the last six weeks and try not to get too excited or sad at the result.

But the number on the scale doesn’t define me.  Neither does the number on my meter.  Neither does my age.

… right?

I look at my body sometimes and feel a little embarrassed or ashamed because I don’t physically conform to what magazine pages and commercials suggest I should look like.  I’m not tall and willowy with shiny hair and slender arms.  And I admittedly care about the size of the pants or the cut of the dress.  It’s been harder than normal lately because I’m trying to recognize this new person in the mirror, the one who has carried two children and thirty years of chronic illness under her skin, never mind life’s normal wear and tear.

I’ve lived with body image issues that haven’t caused chaos but have given me pause from time to time.  Diabetes has forced me to see my body through a specific lens, not always rose-colored.  Sometimes diabetes makes me feel like I’m broken, unable to make insulin and struggling to create a child.  It’s weird to look in the mirror and see someone who doesn’t look sick but who has felt unwell physically many times, and who requires effort to stay emotionally well.

Other times, the diabetes lens makes me feel as if I have superpowers … like, shouldn’t I be dead because I don’t make insulin?  Every mile I’ve run or weight I’ve lifted stands in contrast to my unmotivated pancreas.  How has my body managed to stop producing a life-sustaining hormone and yet I’m still here?  Can’t I fly, too?  And melt steel doors with my eyeball lasers?

I have to remind myself that there are marks and imperfections on this body that I’ve fucking earned.  There are a lot of scars.  Some visible, others harder to see, but all of them, earned or self-imposed, have contributed to creating me.  This body is recovering from, responding to, reinventing itself in life, and that’s the image of my body I’m holding tightly to.

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