Wednesday, September 29, 2010

Sacred, Cynical, & Protective Of The Diabetes Holy Grail

When I hear the term “diabetes cure,” I think of eradicating diabetes off the face of the earth for all people who live with diabetes, and preventing those who don’t from ever having to. And I will craw on my knees through crushed glass in order to support any person or organization that is working to make that happen.

So when you tweet me the word “cure” and then tell me that by cure you mean “managing diabetes and that I’m getting caught up in semantics re: the words cure vs. managing and Dr. Speak in general, and that endos and CDEs don't know anything about diabetes, and that you're a @cardiologistswife & that together, you write diabetes cookbooks.” Don’t be surprised if I take issue with what your saying; tweaching (tweet preaching,) or selling. And don't be surprised if I have questions for you.

Don't be surprised that I'm concerned that you tell some folks you have one type of diabetes and other people that you have a differnet type.

Be it your sincerity or your brand,I'm going to question both!


Insulin is not a cure for diabetes, neither are oral medications.

A no carb diet is not a diabetes cure. It absolutely helps with blood sugars and weight loss, and I know a thinner waistline is better for our diabetes hearts, but it's not a cure.

Same goes for electrolyte waters that cost $100 bucks a case.

Prayer is not a diabetes cure. I’m not against praying, but it’s not a cure. Nobody prays harder than the parent of a chronically or terminally ill child. If all it took was prayers to cure diabetes, this disease would have been cured long ago.

Dancing with the devil in the pale moonlight while naked doesn't = a cure either, but it’s damn fine visual.

I look at the term “diabetes cure” with a mixture of sacred (like it's the diabetes holy grail) and cynicism – and cynical or not I’m very protective of it.

How you treat "your diabetes" is up to you & if it works for you, GREAT. But please don’t throw the term cure around and not expect others to question it.

When I was first diagnosed. I sat in my endo’s office and listened as he told me that science was 10 years away from finding a cure. I was so excited! My 8 year old self looked at my mom smiling, ready to say "IT"S GOING TO BE OK," until I saw her face and heard her words.

Mom: They told me the same thing 10 years ago when my other daughter was diagnosed, we’re still waiting- You're no closer now than you were then, are you?

I realized then and there that I would most likely live longer as a person with diabetes, then a person without.

That would be the exact moment that "Kelly The Cynical," came to be.

10 years later, as I blew out the candles on my 18th birthday cake, I didn’t think about being legal or voting, those thoughts weren't in my head at that moment. No, I thought about the cure conversation from 10 years earlier. And yes, it really did put a damper on the celebration.

Years later, sometime in the mid 1990’s - before the DOC and broadband, back when the Internet was in it’s infancy, I sat my old Gateway computer and “dialed – up” the AOL so I could participate in a diabetes chat room.

There was lots people with and or affected by diabetes in that room – and there was also a snake oil salesman preaching a cure for diabetes courtesy of Taro Root juice - a magical elixer that had cured the ancient Hawaiians of diabetes.

Me being me, gave the taro salesman verbal smack down. I told that all the taro juice in the world wouldn’t cause my Islet of Langerhans to be produce insulin – if indeed they still existed at all.

I chided him for trying to make a profit off other peoples heartache. Eventually he left the chatroom and everyone was glad. A few hours later I received an email from a mother whose 18-month-old daughter had been recently diagnosed with type 1. She was willing to forgo her daughters insulin regiment for the taro juice/ battery acid/ voodoo if it meant her daughter would be cured.

We IM’d all night and I was really scared. I begged this woman to find a support group and to speak to a therapist. I told her that daughter would live a great life and that insulin, while not a cure, was a godsend.

This poor woman was so depressed that she was actually willing to harm her child if it meant curing her.

I felt helpless and was afraid for her little girls well being, and her own. The only thing I could do was listen and talk.

Finally, around 4 am, she agreed that she needed to seek therapy in order to accept her daughter’s diabetes. She promised me that she wouldn’t try any miracle cures – and to the best of my knowledge, she didn’t. I received a few more emails from her, telling me that her daughter was doing well on insulin therapy and that she herself was doing well since seeing a therapist.

In her last email she wrote that she was closing her AOL account and staying off-line for a while - at her therapists suggestion. I never heard from her again.

The memory of that woman and her daughter have haunted me everyday since.

I think about that woman and her daughter every single day and every single time I hear the words “cure” used in an egregious manner regarding diabetes.

Ever time I talk to a parent whose child is newly diagnosed - I think about that woman and her little girl, and yes, I also think about my eight year old self and my own mother.

So if your going preach a diabetes cure through a product or lifestyle, don’t be shocked when I have questions – I’m not just being a bitch or bully, and I'm not starting an argument for shits and giggles.

And I’m NOT just doing it for me.


Rachel said...

You are awesome - nobody should be out there peddling potential harmful remedies as "cures".

No carb brings with it its own problems, been there done that.

Nicté said...

When i was diagnosed, besides not being told much about what was going on, nobody promissed a cure but a lot of concerned friends and part of my family started looking for miracle drinks,seeds and potions.
I have always been very skeptic with non traditional medicine so I almost never tried what they suggested, but I can totally relate to the feeling you have because trying to make people understand diabetes itself can be tiring and frustrating, let along make them accept we are like this for all our lifes.
I thank God for having found your blog, because you've connected me to so many wonderful blogs that make me feel less alone in this battle, but overall, because I now, know this wonderfull and intelligent woman who has gone thru so much and is still smiling, giving me the hope that life is a bitch, but you can still have fun

Cara said...

We were "10 yrs from a cure" in 1986 when I was diagnosed too. Nearly 25 years later...still nothing. I HATE to hear people talk about "curing" their diabetes. And I agree w/ you 100%. Managing and curing are 2 different things.
Thanks for standing up for us Kelly. I may not verbally communicate with those people, but I'm glad someone (YOU) calls them on their crap!

Scott said...

Thanks for the post. When my daughter was diagnosed earlier this year that was my first question - when are you going to fix her pancreas (a little dreamy for a dad of a child with diabetes). I am all for managing the disease in order for her to live life to its fullest and we will do all we can with medical management. She recently started on her pump and that will help but it is not a cure. I want her pancreas/Islets of Langerhans to produce insulin and her immune system to leave them alone. Until that time we will manage her diabetes.


Scott Strange said...

Thanks Kelly and I agree 1000%

Seeing these predators and their "cures" always sickens and me. And like you, I fear for the newly diagnosed, especially for children and their parents who are desperate for a true cure.

I was dx'd in 1970 and have been hearing exactly the same thing for all these past 40 years. We all need to understand that while progress is being made, we will NOT see a cure any time soon. We may get better tools, such as the artificial pancreas, but the best tools can't cure us.

We are our own best guardians and I am glad that there are people like you out here calling the snake oil vendors out and holding them accountable.

Penny said...

You totally rock Kel. You know what I want? Not necessarily a cure, but to live every day to its fullest, with diabetes or not. It may be at my party, but it sure as heck isn't the life of the party. But frankly, it's still a party.
You go girl. And the phrase 'shits and giggles' leaves me in stitches every time. i gotta teach that to Grace, cause it would be really funny to hear it come out of her mouth. Ok I won't actually do it, but wouldn't it be a hoot???
Love ya

Renata said...

Along with Nicte, we were never told about a cure 13 years ago and I have not spoken about it in length with the kids. Our conversations have been mainly "maybe one day, but for today this is how it is.." I am can not get over her statement about semantics. Just absolutely blows me away how irrisponsible these people are.

Reyna said...

Good for you. There has been a little tweeter with promises of a cure out there pissed off a bunch of us. A cure means a cure...don't belittle it with mumbo jumbo garbage and empty promises.


Sunny Day said...

I have a book titled "Reversing Diabetes". I hesitated to buy it, but when I got it I was glad I did. No miracles, just plain old basic information. Their mantra was Eat, Move, Plan. While I have not followed it perfectly, I am glad I bought it. Had it said "Curing Diabetes" I would have run screaming in the opposite direction.

Kelly said...

Love it and you. *clink*

Lora said...

Your right, dancing naked with the Devil in the moonlight would be a damn fine visual. Let's make it double pale though because I am not 20 anymore ;)

Thank you for asking the questions. We need "answer seekers" to run off the crazies.

ferringb said...

If it's any consolation, in '99 when I was diagnosed they claimed 5 years...

Yes I want to gut punch them, same for them not getting into the details of the honeymoon phase (while a welcome respite occasionally not needing insulin, some forewarning and flat out "it will go away" would've been useful from the standpoint of false hopes)...

Meri said...

Love love love love who you are Kelly. Amen to everything you said.

If my kids didn't eat anything at all, and only drank water, they would still need insulin. Nuff said. Cure my arse.

Thank you for all you do to advocate for our community!

Wendy said...

At 1 am after checking her blood sugar, I'm refreshed to read this. I'm so happy there are advocates like you out there fighting off these crazy nutjobs.

Thank you.

The poor diabetic said...

So true, it seems today anything under the sun can cure diabetes, and these cures grow in sophistication as we trudge along, it is just so appalling that people will take advantage of the desperate but I suppose it is the world we live in.
The pulpit of realism falls far short of the glamor and enticement peddled by the unscrupulous.We have no choice however but to climb it megaphone in hand and push the truth until it is heard loud and clear...THERE IS NO CURE FOR DIABETES.

Leighann of D-Mom Blog said...

At diagnosis we weren't promised a cure. But our CDE's told us that there have been so many advances in treatment in the past 10 years that in the next 10 years there will likely be even more.

I usually just block anyone on Twitter that starts peddling their "cure" to me. But the other day I just couldn't resist talking back when someone tweeted me about cinnamon.

Here I am reporting that my daughter is experiencing a low of 55 and someone says to me "not sure if you've heard, but cinnamon can lower blood sugar."

Um, okay. Because I really want her to be even lower than 55!

And when I spoke up saying I didn't appreciate the spammy reply, the person threatened me. And called ME rude.

Whatever they're selling, I ain't buying.

sfincham said...

Amen sister! Ellie is only 4 and I have not even said the word cure to her yet. She often asks when her diabetes will go away. I have to answer that it isn't going to. Right now she accepts that answer and moves on, but the day will come. That stupid commercial that says, "never have to test your blood again for diabetes"...I wish they knew that it will stop Ellie in her tracks and she immediately looks at me with the eyes of "what do they mean?". The marketing uses hope to get the product sold, I get it...but it doesn't help our plight in keeping a 4 year old on the ground and in reality (what ever that is!). I'm about to face the music next weekend I think, we are doing the JDRF Walk and the term CURE will be thrown around quite a bit...guess I better get my answer ready.

Kerri. said...

*clinks* coming your way, K2.