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My Raised Voice.

I wear it draped around me like an invisible cloak, one you can't see until I show you the sharp edges.  This disease, this type 1 diabetes that you can't see or smell or taste unless I bring you in.   It's my hidden disease, my quiet battle.

Look at me and you'll see my father's eyes.  My mother's smile.  You might notice my engagement ring, or the earrings I bought a few weeks ago, with the little moonstones.  You might see that my jeans are hemmed because I'm slightly on the shorter side, or that my purse has a few little bite marks in the strap from where Siah nibbled on it as a kitten.

But look closer and you'll find my insulin pump, tucked into a pocket or resting in my sock.  My fingertips, dotted brown from testing my blood sugar.  My thighs, dotted red from past insulin pump infusion sets.  My stomach, dotted red and smudged from Dexcom's patch.  A pattern of stinging stars on my body, left by diabetes.

Listen to me and you'll hear my loud laugh.  You'll hear my off-color jokes and my foolish attempts at puns.  You'll hear me talking fast.  Or maybe you'll hear my music, either coming from my desk or my home or my car.  You'll hear me talking about my fiance, or my family, or my cats, or my much-loved nieces and nephew.  You'll hear my passion, my ideas, my voice.

But listen closer still and you'll hear the quiet 'boop beep boop' of my insulin pump, the gentle shunk of the lancet as it pierces my skin, the sound of the meter bag being re-zipped.  And if I let you in, you'll hear the veiled tone of uncertainty when I speak about my future.   

Its presence is folded into everything I do.  My wedding dress is fitted to my form, but also to my insulin pump.  A night out with my friends includes laughter, a few drinks, and someone gently asking, "Have you tested?"  A kiss is interrupted by "you taste ... high."  It explains so much of why I worry and why I work so hard.

I have lived with type 1 diabetes for over 21 years, and my future holds decades with this disease.  Diabetes is every day, and there is no cure.  But just because you can't see it doesn't mean it isn't there.  Those of us who live every day with diabetes feel it every day, physically, emotionally, and financially.  Type 1 diabetes deserves the attention of the nation and the promise of a cure. 

RAISE YOUR VOICE and let people know that diabetes is not invisible - we see how it touches every day of our lives, and the lives of our loved ones.

We deserve to be heard.  We deserve to be cured.      

Comments

Great post, Kerri.

Thank you for this!

You hit home with, "This disease, this type 1 diabetes that you can't see or smell or taste unless I bring you in."
I struggle everyday with letting people know about my diabetes, because while it is so much of who I am, it isn't me.

Love the post Kerri.

Well put. Perfect. Perfect. Perfect.

Thanks for including in your earlier post! And thanks to "in search of balance" for my first comment/welcome!

To T1s everywhere, Raise Your Voice! We are not invisible just because we are a minority based on numbers. We are not invisible because we "look fine". We are human just like everyone else. We all breathe the same air. Have the same fundamental needs.

T1s just happen to have a chronic illness that is misunderstood. Highly misunderstood.

So stand out! Stand up! Shout! Raise Your Voice! Raise your pens, needles and pumps! We are here to stay!

Great post!!
Kerri, I'm so glad you thought of this. What an incredible day this has been.

Re: "The veiled tone of uncertainty when I speak about my future"--oh boy, I *so* know what you mean there. So many people think I'm just being vague or coy, but it's not that at all, is it. Thanks for listing my blog today. (And I'm glad you like your OCD 'tag', ha ha!)

Kathy (araby62)

You always know how to word things in just the right way.

You all totally deserve to be cured. Too many good people have to endure such an evil disease.

I feel a little lighter on my feet today hearing so many people raising their voices! What an amazing group of people.

Thank you Kerri for pouring your heart into type 1 diabetes and everyone touched by diabetes, no matter how or what type.

Thank you for organizing Raise Your Voice, what an amazing addition to all of your hard work!

Kerri,
Thanks so much for a wonderful post and for organizing this. It is wonderful to have so many special people Raising their Voices for Awareness. All PWD need and deserve to be heard.

Got your link from Karen, great post!

I had gestational diabetes, and both my parents have Type 2. I most likely will develop it later in life as well.

After being pregnant twice and nursing two babies, I am finally ready to loose some weight and get myself into a healthier life style. I know how important it will be for me later on.

You know, the hardest part about the diabetes for me was hearing other women talk about how they could just eat whatever they wanted. I couldn't. It would have hurt my babies. The disease was never about just me, it was always about my kids. Sometimes I was so mad all I could do was cry because I couldn't have one lousy cookie. But my kids were worth it.

So, keep on doing what you are doing. I know it's not always easy, but you are worth it too!

You have the soul of a poet, Kerri.

Congratulations on, and thanks for, a great event! Let's make this a yearly happening.

Here here! I agree about making Raise Your Voice an annual event. I, too, am walking with proud today from everyone's post... and sporting an awesome new shirt!
Thank you, thank you for organizing this, Kerri!

I like how you said - we deserve to be heard, we deserve to be cured. That's a great way to put it.

Kerri-
I love this post. It's right on. I love the "look closer" and "listen closer" parts. That's exactly how it is.

Also, thanks SO much for organizing this. It was such an amazing day!

thank you for sharing your beautiful, truthful words.

Beautiful post. Thank you for raising YOUR voice everyday. Best to you, Kerri

I'm with Kathy - this was the line for me.

And if I let you in, you'll hear the veiled tone of uncertainty when I speak about my future.

That just says it all.

AWESOME, just AWESOME!

This was perfect, Kerri.

Thank you.

what a great post, kerri.. thank you for starting this!

you said it and you said it well. very well.

Well done, Kerri as always. I was a bad blogger, and didn't raise my voice until well after 10pm, and they told me to shut up so they could get some sleep.

Great post! I don't know if someone without T1 can ever really get it (like the uncertainty about the future that also hits home for me), but your words certainly go a long way towards promoting understanding that it is so much more then a couple (or ten) blood tests a day and a site change every few days.

Thanks!
Randee

I've been lurking here for awhile, but today is a very special day and I just wanted to take time to say thank you. I am T1, I am a pump user, and I am engaged, just as you are, and your words brought tears to my eyes. Today is also my birthday and I'm so excited to share this special day with such an important cause. May we all continue to raise our voices each and every day.

God, Kerri, you made this mom of a T1 kid cry.

Kerri,

What a beautiful post! Lovely! As a writing teacher, I'd give you an A. :)

Words, so powerful. Like art only better, I think.
You said it spot on..listen, look, and learn. THEN ACT. Thanks,
mum of Fabulous T1 girl.

As always, a wonderful post Miss Kerri.

THANK YOU guys, for everything you've said. And for everything you do. You make this disease so much easier to handle just by being out there.

The power of your words from the opening paragraph did it for me. It presence is 'folded' in everything I do...
Simply awesome.

Kerri, As usual you have a gift with words. I am a mother of a 5 year old with T1 and you never fail to give me hope for her future. I only hope I can fill her with the ability to face this life with your candor and strength. Thank you for your blog, your trailblazing, and your leadership in the OC. Even when I cry with you, my days are better for having read your blog. ~ Kelly

Thank you Kerri for sharing. I'm thankful people aren't calling type 1 childhood diabetes or juvenile diabetes because like you said, children with type 1 grow up to be adults with type 1 and a beautiful little girl I love was diagnosed at six (now eight) and I'm doing all I can to support her and love her and help to dream - I pray that dream includes eating whatever she wants when she wants someday

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