Pet Peeve

Today's Prompt: Sensationalize. Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

There's nothing I would rather write about LESS than cure claims. They don't deserve much chatter. And they piss me off. Not to mention that I've written on this prompt before two years ago.

My community had a recent "upset" (that's a nice word for it) when one of our respected members claimed to have insider knowledge that the cure might be at hand.

Spoiler alert: It was bullshit.

Some of us who have played this game for a while knew it was going to be bullshit. We braced for the aftermath. But others didn't. People wept. Genuinely wept. And it got so unnecessarily ugly.

The "end" has been in sight for NINETY YEARS. I'm not joking. The earliest news articles about the discovery of insulin in the spring of 1923 touted that scientists had figured it out - insulin was the cure.

Then FORTY years ago, scientists figured out how to cure diabetes in mice via transplant of islet cells! So, really, in humans it would be any day now. Whew. That's a relief. We can wait 5-10 years. 15. 20. Okay, so it's like 30, 40 now, but who's counting. Off by a hair. Islet transplants are still where researchers are spending their energy. We'll have it. Just, um, I'm sure, it's probably 5, well, I mean, after FDA approval, surely at least, you have to consider red tape and all, so maybe like 10 years out.

I was diagnosed 23 years ago. My pediatric endocrinologist looked at me, a 10 year old girl in a hospital gown just coming out of a coma, and told me point blank "They've been saying a cure is 5-10 years out for many years now. Who knows - maybe they're right? But you more than likely need to learn to live with this disease for the rest of your life."

Listen folks, I won't stop you from believing. Hoping. And I desperately don't want you to stop funding research. Every bit of research gets us closer to 'functional' treatments like insulin pumps that work with continuous glucose monitors.

But when you are brand new to this game and want to chide me for giving up?

Sister, you have just found the way to press my biggest button. You had best take a step back.

I meet these women in forums for parents of type 1s where I lurk. One recently told all the other parents how she was going to cure her daughter with a restrictive diet. That she'd cured her other child with behavioral/developmental problems through diet. And that she wasn't willing to "sit back and take" the diagnosis like the rest of the parents.

My first thought: These are the parents you hear about in the news. The holistic ones. The faith healers. The ones with the dead kids.

And then I met one.

Not Going There

Today's Prompt: Miracle Cure. Write a news style article about a miracle cure.

There are a hundred or more autoimmune diseases, all caused by an unexplained attack of the immune system on an otherwise working body. Millions and millions of people suffer with the chronic consequences.

These are the twenty I've heard of - and for most of them, know someone with. And many of us can claim more than one.

Take a moment and drink this in.

Addison's disease
Celiac disease
Crohn’s disease
Diabetes, Type 1
Endometriosis
Graves' disease
Guillain-Barre syndrome
Hashimoto's disease
Lupus
Multiple sclerosis
Narcolepsy
Peripheral neuropathy
Psoriasis
Restless legs syndrome
Rheumatic fever
Rheumatoid arthritis
Scleroderma
Sjogren's syndrome
Ulcerative colitis
Vitiligo

Now I'm supposed to write about a miracle cure for autoimmune illness.

Funny, but I just can't pretend I'm that naive.

Message in a Bottle

Today's Prompt: Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

I've never participated in putting together a time capsule. I remember, as a kid, hanging out at the city fire station where my dad worked and staring quizzically at the plaque on the city's time capsule that was there. I don't remember what date it was set to be opened. Just that I promised my x-year-old self that I would make a point to put it on my calendar so I could see what went in it. I'm pretty sure I missed its unveiling and I'm pretty sure I am okay with that.

That being said, I do wonder what a person with type 1 diabetes will be like in 2112, a hundred years from now. I know there is a large contingent of my community who believe that we will have eradicated the disease by then. The cure has been "five years out" for at least half a century already. I hope they're right. I hope that Diabetes is a story that people tell in a healthier future - a cautionary tale about immune systems gone haywire before the development of miraclefuntimeshappycure.

Either way, I'd want them to be able to touch and feel the implements of management from 2012. The bulky meters, the sharp lancets, the fragile syringe needles, the glass insulin bottles, the ARCHAIC pager-like insulin pumps that are 20 years behind other high tech personal devices. I'd want to give them a good laugh and a sharp poke.

I'd include my blog posts somehow. (Will they still be able to access our version of the web? Or a flash drive?) I'd share my diagnosis story - at once so personal and yet so typical - of symptoms, DKA, coma, education. I'd throw in some pictures of my kids (because they're hella cute).

If I could, I'd find a way to capture and encapsulate the stigma of diabetes in the early 21st century. The sneers, the judgments. I'd want them to know what the media did to hype and blame. Tell how health care practitioners did not educate themselves for the sake of their patients even under the threat of epidemic.

I'd share a sample of my blood sugars, my diet, my day-to-day life. And I'd tell them that I hope they live well. Better than us. That they know more than we did.

Maybe by then someone will have figured out how to accurately bolus for pizza.

My Personal Brand

Today's prompt: My Personal Brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess? It's okay to toot your own horn today - you have full permission to indulge. Don't hold back. (Heh. Me? Hold back?)

I have to branch out a bit for today's blog post because, not only is it day 9 of WEGO Health's National Health Blog Post Month, but Nov 9, 2011 also marks the 7th annual D Blog Day, hosted by Gina Capone at Diabetes TalkFest.

The challenge for D Blog Day was something I didn't take the time to accomplish this year - which was to create a 12x12 scrapbook page. I had three reasons I didn't do it.

1. Shopping for scrapbook materials when you have no idea what you're doing can be overwhelming and is especially hard with a toddler in tow.

2. Putting together my first scrapbook page with Sweetie running around with my tape and scissors would prove exhausting.

And the real reason...

3. We were supposed to include the words "I want a cure."

I don't talk that way.

I don't believe this disease will ever be cured.

At least not for those of us who've already been diagnosed.

And so I don't ask for one.

For me to lament that there is no cure, I feel, is to waste the time that I could be living, doing, singing, writing, playing with my daughter. To beg the cosmos to cure me of something is to assume that there is a reason I have it and that if we just follow some rules and wait patiently, the cure will be revealed to some scientist finally. Nobody asked for this. We've all got to go on. We have to deal.

It's not that I wouldn't get in line for one if it were found, and I know there are talented researchers working hard toward understanding diabetes, but I'm not going to hope for something I can't see on the horizon. That's not how my mind works. I don't sink money into it - I'd rather spend my money on my own diabetes management than on cure research. I don't usually ever even think about a "cure."

When the human race cures anything, I'll be impressed. But we haven't yet. And there is a lot more we understand about the illnesses we can at least vaccinate against or send into remission. Diabetes' genesis is still so misunderstood that I think it's ludicrous to suggest we're "five years away," as they've been saying since the 70s.

Which brings me back to my personal brand and the niche I fill in my community.

I believe I stand for those that need to know what to do right now. How to live with diabetes. You and I both have to wake up every morning and deal with the reality of this. And I think I get that across. So I think I know how I'm viewed.

My hundreds of friends in the Diabetes Online Community - 40 or so of whom I've had the joy of meeting in person by now - see me in much the same way that my close friends and students have always seen me, I think: maternal, creative, compassionate, empathetic, occasionally wise, occasionally funny.

The members of TuDiabetes have twice honored me with member-voted awards - the "Life Coach" award in 2008 and the "Uncertified Diabetes Educator" award in 2009. I know that people trust that I will give my experience honestly, that I'm not afraid to share personal info, and that I genuinely want to help.

People who nominated me said things about me like:

-Her advice is always reliable, dependable, and on-target. She is so smart! I appreciate all the time she spends with us.

-Melissa's contributions are chockful of information. They are "meaty" and objective. She has contributed a lot to this community by sharing her experience, advice given to her over the years from her valued educators and her general knowledge of diabetes. There is no question she has done a lot of homework over the years and she knows her stuff!

-Melissa shares valuable information almost daily:) Her practical tips on pumps, CGMS, etc. provided w/ kindness and support...have made living w/ my diabetes so much easier.

I spent eighteen years doing diabetes all alone, thinking wrongly that I must be doing a horrible job because my blood sugars were not that of a normal non-diabetic person's. Once I discovered the D-OC, I realized that everyone felt that way. Everyone was overwhelmed, occasionally burnt out, thinking they were the odd man out.

And I realized that I had this HUGE wealth of experience stored up that I could share. I was a veteran in the trenches. And thanks to my husband's support and a good medical team, I'd started to turn some things around. I was working on my Happily Ever After. But I'd been down, I'd felt sick, and I had been motivated to find answers.

One of the things I love about this community of people is that we all know how scary, lonely, tedious, and thankless this condition can be. And we get out here and we say, "hey, I need someone to hold me up today." And suddenly the troops are rallied, advice is offered, hands are held, and we soldier forward.

Finding support online ultimately changed how I viewed myself, my struggles, and this condition.

In most areas of my life, I barge in and assume I'm wanted. Assume everyone appreciates my perspective. Assume I have a right to share it. I'm the girl in the elevator eavesdropping on your conversation and itching to give you my take on it, and probably my life story. I've got an anecdote and an analogy for just about every situation (ask my students).

In the Diabetic Online Community, I've been lovingly accepted for those quirks. Instant family. Blood sugar is thicker than water.

And to take one final turn in this post, I want to address the conversation I've been eavesdropping on this week concerning JDRF's controversial ad stating that "1 in 20" of us "will die of a low blood sugar." Because it directly relates to the hope for the cure I gave up on.

I applauded the JDRF for the first time when, last year, they addressed issues of living with type 1 diabetes as part of their mission statement rather than narrowly focusing their efforts on cure research and fundraising. People like me who live in the now, in the disease - we were so thankful to have this media powerhouse working toward technologies that would make our management easier. Many parents of young children felt it was a distraction from JDRF's stated mission over the last few decades. Veterans like me breathed a little easier.

This new ad, based on research that says that 5% of us will die of low blood sugars, aims to encourage the FDA to act more quickly in approving insulin pumping systems already available abroad that include LGS (low glucose suspend) - a feature that will shut off insulin infusion during a low blood sugar episode.

But strangely enough, this ad focusing on what I've been wishing they would focus on, made me think about the fact that I don't want it to be a single "1" of the way more than "20" people I know who fear those lows on a daily basis. Hell, I have two to three low blood sugar episodes EVERY DAY OF MY LIFE. It could be me. I've largely come to terms with that over the years. But when you make it about my friends...my family...and now the family I'm building....

I still can't bring myself to say "I want a cure," let alone immortalize it on fancy square paper. I think it makes me feel too vulnerable. But I have no trouble saying, yes, WE need a cure. Because I have to stop thinking about what I can handle myself and start thinking about how there's no one in that community I'm ready to say goodbye to.

I would love to get together with them on Wednesday nights someday and reminisce about the condition we all vaguely remember having.

1 in 20. We've lit too many blue candles already.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J.