Tuesday, November 17, 2009

Dear Diabetes Orgs & Society As A Whole

Yes indeed we grow up- CHEERS to that!

Dear Diabetes Orgs & Society As A Whole:

Well, its official (especially after my last few birthdays) I’ve been a grown up for quite some time and in some circles, I'm considered a bona fide lady - and I use that term with a wink and a smile.

I am no longer considered a cute & fuzzy child with type 1 Diabetes.

Here's the thing; while I still have a child like wonderment when it comes to cupcakes and manatees, and actually uttered the term “Ohhh, look at the Bunny!!” when I saw one running across the street the other night in an urban area, this former child with type 1 has grown up, like MILLIONS of my type 1 compatriots.

And on a side note: Growing up with Type 1 Diabetes is never a cake walk (no pun intended,) but for those of us 35 and over, it was quite the challenge.

We survived the archaic time in history (occurring after the Diabetes Ice & Prehistoric Ages) known as the Diabetes Dark Ages.

A time when “checking your sugar” meant urine testing, which required fizzy blue pills and test tubes that burned our fingers. When we needed to test on the road, Urine Test Tape was slightly less messy and definitely more portable, but just as inaccurate.

Only three types of insulin existed, Regular, Lente, and NPH, and there was no such thing as sliding scale o insulin.

Carb counting was unheard of and EVERYTHING super delicious was off limits.

It wasn’t easy, and many suffered complications from living in those dark times.

But I digress...

We, ALL the former children with Type 1 Diabetes, managed to grow up, and that’s a wonderful thing!

It's also a testament to not just "us", as people with diabetes, but to our parents and their never ending devotion to us- their children with Type 1 Diabetes.

We’ve transformed from children with type 1, into adolescents, and then to teens, and in what seemed like a New York minute, we have morphed into adulthood, just like the rest of the society.

We find jobs; we find (or our looking) for significant others. Many get married and have families.

We work the 9 to 5 daily grind and bitch about taxes, and the cost of our diabetes health care. We take care children and aging parents, while juggling all that life throws our way, including managing our diabetes 24X7.

We exist and are productive members of society.

So why don’t you remember us more?

Bottom line, we’ve done a great job managing not only life, but life with diabetes.

If we hadn’t, we wouldn’t be here.

Kids with diabetes grow up and become adults with diabetes.

Don’t forget that fact, or us.

We exist, and will continue to do so.

Thanks for hearing me out!

Your friend,

Kelly Kunik

P.S. Inspired by all those type 1's who have grown up; like Leeann & Hannah.

Those who didn't have the opportunity,

and those who are are still cute & fuzzy~


Crystal said...

AMEN sista'!!!! Amen!
I've been shouting about this for a long time. ALL kids Grow up at some point, ok, age wise definitely. ;-)

Diabetes does NOT go away after we turn a certain age or aren't considered kids anymore. This is a Lifetime disease. More organizations and people in general Need to recognize that, not put us to the way side.

Gosh I LOVE your letters! Thanks for yet another GArate one you fabulous Diazon!

tmana said...

You tell it, sister! I see this and I'm an adult-diagnosed Type 2. Until there's a cure, there will be adults dealing day-to-day with diabetes -- and as diabetes management evolves, there are the struggles (educational, observational, and financial) of adapting to the changes.

George said...



Araby62 (a.k.a. Kathy) said...

Well said. It's about time people notice! I actually have friends and relatives (who shall remain nameless) who think I "grew out of it" years ago. Ha! I wish!

Traci said...

Thanks Kelly!
Just had an interesting conversation yesterday w/diabetes educator on why the ADA and others don't recognize adults living with it. "Because it's too small a group and they aren't the focus." I would love to send this onto her! Thanks Kelly!

Wage Slave said...

Okay, now send this letter to the JDRF and ask them why they ignore the diabetic adults!

P.S. It's Lente, not Lenti.

Cara said...

Kelly, I was just thinking about this yesterday. Being a grown up with diabetes is so hard...because people think we aren't cute anymore. :P
Thanks for the words. Once again, you speak what's on my mind and in my heart in such beautiful words.

Sandra Miller said...

Kelly, it won't be long before my teenage son will be an adult living with diabetes -- and it makes me sick to think that his disease will just "disappear" in the minds of many because he's no longer a child.

Thanks for getting this message out there.

Lee Ann Thill said...

Well said, k2. As you know since you were there, I bi.. er, complained about this to you and Hannah Saturday because I was so disgusted our local JDRF chapters didn't even call me back, and I'm still pi.. er, hot under the collar about it.

Traci made the comment about the CDE who said we don't get attention because we're too small a group, and granted, we are compared to adults with T2, but relative to the number of kids with T1, there are even more of us, since it seems T1 is being diagnosed in more and more adults. Every time I think about how JDRF alienates us like they do, it leaves me shaking my head.

Scott said...

I think slowly, but surely, the powers that be are beginning to realize that just because kids grow up, they don't outgrow T1DM. I would LOVE for JDRF to have an ADULTS Congress where a bunch of us could testify before Congress. To be sure, kids are exploited to some extent by organizations like JDRF because no Congressman/woman can ethically stare a child with type 1 in the eyes and tell them they won't support funding it. However, the needs for adults change and JDRF needs to be leading the way for expressing those to our leaders in Congress!

Karen said...

So well said!! I remember those dark ages. I also remember that I didn't think I'd see my 40s. And if I did, I certainly didn't think I'd be healthy. But I am. I am a healthy adult who has had T1 diabetes for almost 30 years. We are here - even if we are forgotten.

k2 said...

Thanks for all the great comments -I appreciate them and I'm glad they struck a chord.
I'm not pointing the finger to any 1 org because I feel that all of them need to throw more attention to those of us who are no longer cute and fuzzy type 1's.

And it's not just the ORgs.
Years ago, before I was even aware of the DOC,
I sent a Writers Query to a Diabetes (mag who shall nameless,) and was called by an Associate Editor who said and I quote:"While my idea for a story was good, he felt there was more money and interest in Type 2 or stories regarding kids with Diabetes.

I was angry and hurt!

Scott- I hope your right! regarding the powers that be.

I think we should continue as a group to inform, educate, and make our voices heard to everyone we can, that life goes on and cute and fuzzy kids with diabetes grow up into outstanding adults with type 1!

The Poor Diabetic said...

I feel a little guilty that am a type II after reading this but I just wanted to leave my 2cents.
Diabetes comes with its own stigmas and myths to those who do not have it and it is an uphill battle just trying to raise awareness for it, I guess type II get a lot more coverage since there is a lot more of us. we all still suffer from it and by no means do I distinguish between the two, we are all brothers and sisters in the struggle so I stick my thumbs to the establishment I say who needs them all we need is each other.

Stacey D. said...

Great post K2! There's a lot to be said about the lack of resources for adults with type 1. That's what us at ACT1 are trying to address :) and hopefully we can make a diference!

Cherise said...

Amen!! Oh, all T-1's don't get dx'd as a child either! Us adults need love too:)

Scott K. Johnson said...

Amen sister!