Tuesday, March 5, 2013

"5 to 10 Years" Can Be A Lifetime

The doc is a family, all families have issues and many of us are jaded optimists because living with diabetes for decades does that to a person.

Numbers are part of my (our) life with diabetes.
I’ve had diabetes for 35 years, and for 35 years  I’ve associated certain numbers with diabetes.
After 12,775 days (and then some) of living with a busted pancreas, how could I not.
Diabetes math is my constant companion. 
When I look my plate and I see carb numbers instead of food - And have damn near mastered the art of being a Diabetes Savant~ 
123 on my meter makes me smile. 
I am daughter number 4, diabetic daughter number 3 and child number 6 to the late John & Marjory Kunik.

15 minutes is the amount of time I’m supposed to wait after I treat a low with 15 grams of carbohydrates - And I test my blood sugars between 7 and 12 times a day. 

Live saving insulin is doled out of my insulin pump in varying degrees of both basal and bolus rates -
My self worth is measured by a test called an A1C - If it is above 7.1 I am crestfallen. 
The terms “high’ and “low” represent numerical phrases that a person with diabetes live with on a daily basis.

“5 to 10 years” is a term I associate with a prison sentence in all dimensions, both legally and theoretically speaking.  

“5 to 10 years” is the longest of life sentences  when you’re waiting for a diabetes cure.

Because the term "5 to 10 years" was how long I was told there’d be a cure when I was first diagnosed....35 years ago. 
"5 to 10 years" is what so many of us were told when we were first diagnosed..... And "5 to 10 years" have come and gone for us all.

The words "5 to 10 years til a cure," have broken more hearts than any hopeful phrase has a right to.

“5 to 10 years” is a phrase I wish scientists and the likes there of would stop using, period. 
It's an emotional phrase that brings back bad memories for so many of us who have been in the diabetes trenches.
As an 8 year who was diagnosed with type one - the cure was OZ and the Holy Grail all rolled into one - And when I turned 18, I remember what I was thinking as I blew out the candles on my birthday cake.
  1. I’m legal - so don’t do anything to get arrested
  2. I still have diabetes - And 10 years have come and gone.
And my heart broke that day. But a lot of good came out of that heartbreak, because my heart healed and become stronger and tougher and more sensitive to promises and phrasing when it came to all matters of the heart - diabetes and otherwise. 

It made me jaded.... But I still had hope.

Yes, of course I still have hope, about so many things - to many things to mention in one blog post. 

I hope that the Phillies will win the 2013 world series and I hope that people will grow out of this Kardashian phase.
I hope that the people of New Jersey & the Tristate area will continue to be JerseyStrong post Sandy.  

I hope that Congress will get their shit together so we citizens of the US won’t suffer for their faux bipartisanship bullshit anymore. 

I hope to God that I will age like my mother. 

And I hope for a diabetes cure and I welcome any and all shots in the form of research with every fiber of my being. 

And I will help any and all organizations when it comes to a diabetes cure - And I will continue to try and help people (including myself) living with diabetes strive for their best lives, cure or not. 
Living with diabetes has made us dreamers/realists who have learned to live in the moment while preparing for futures that aren't set in stone.

We are jaded optimists because living with diabetes has made us so.
Jaded optimism is both our shield and our armor. 

Which is why when it comes to a diabetes cure, or the potential for a cure - I prefer less anticipation/hype and more quiet facts. 
For me at least, anticipation can make emotions run up and down so much they resemble a Dexcom that’s gone crazy off the charts. 

Quiet facts keep hope’s flame lit around the clock while keeping all of our collective emotions in check. 


Nicté said...

I didn't expect a cure for quite some time after my diagnosis because when said diagnostic came, the doctor was blunt and tough and just straight up told me I had to get shots and deal with it (it was awful).
I barely remember anything else, as of course, I was crying my heart out but the one thing I can thank him for was never giving me that hope.
Then when I found the DOC I started getting more updates on a constant base and figured that maybe after all, we could have a cure close enough.
I have lived with the D for 7 years and in the last 3 or 4 years I've attended TEDxs other events fully dedicated to diabetes research; they all say that the cure is almost at the tip of our fingers.
After a major broken heart on the 3rd or 4th event, I stopped "caring" about the cure.
Every time I heard "the cure is so so so close" I just walked away. Then this DRI came in and it just teared me apart.
The fact that I found about it through the DOC gave it so much reliability in my head, as I thought that well, if they truly believe this then it must really be IT!!!
Cut to this morning when I finally had the time to log on facebook, google the news and see all that had been said and well, it wasn't what I expected even though I'm not sure what I expected.
It sucks because the research IS AMAZING, I mean like woah nelly! they are doing really neat stuff...but they hype it was preceded with was so much it nearly killed the fact its awesome.

I hadn't really given it much thought in the 7 years I've had with diabetes but I just realized how much I want a cure and how much I loathe having diabetes and today I just really want to go home and cry about this realization.
I have so many feelings mixed in, I feel like I was thrown into a washing machine and then fastly thrown out while the thing was still in motion. My head and heart hurt and it sucks...

Mike Hoskins said...

Tanks for this, K2. Your ending line is perfect and beautiful. Love the way you wrote that. I'm on t e same page, taking hope where I can get it and stating in the here and now. Just want to be told the truth and allowed to judge things as they are, not treated like a guinea pig in clinical trials on how to squeeze more money from people.

ALily said...

You test 7 to 12 times a day and you've had T1 for 35 years? I've just been recently diagnosed and my endo's are pushing me to only test 4 times max a day. I test about 10 or 12 and 7 at the least. I thought I was a bad diabetic because I can't "feel" when I am high or low and am bad at guessing. So I usually check. I just want to say that knowing that someone who has had T1 for 35 years and tests as much as I do makes me feel like I am just being a normal T1 diabetic. I don't want to guess (because I am most of the time wrong) about my BS and I like the fact that I am feeling good most of the time. Endo's be damned! Keep up the counting!

Bruce in the mountains said...

Wow, great piece. I was told 38 years ago that the expected lifespan was just 40 years. I guess that sucks just as much. Now I have to start planning for retirement! No complications (thank you God)

StephenS said...

Thanks for this Kelly... I'd like to make this required reading for everyone newly diagnosed. Great post.

But I hope the Reds can best the Phightin' Phil's this year:)

Unknown said...

Oh...the numbers, numbers, numbers...

Beautiful insight, my friend.

So thankful to have pals like you to ride these crazy ups an downs with!