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I have Type 1 (T1) diabetes.  Some people still like to call it Juvenile diabetes but I was diagnosed at thirty-nine.  I may behave juvenile but this disease is anything but.  That was four years ago. These days they call this thing latent autoimmune diabetes in adults (LADA).  Why? Because I got it when I was an older.  I’ve learned a lot — too much — about how food affects blood glucose (BG).  I’ve poked about a zillion holes in my body while testing my BG and injecting insulin.  Three times a day.  Or more.  Every day of every year for the last four years.  Yes, it sucks.  But it’s what I have to do to stay alive.  You see, diabetes is incompatible with life. I read that somewhere.

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My finger as featured in the Wall Street Journal

So how did I get this way?  The great minds of our times are not sure.  They do know it has something to do with the immune system. Somehow, my body got tricked into believing that certain cells in my pancreas were foreign invaders and kicked off a crusade.  Slowly over time, the insulin producing cells of my pancreas are being killed off.  Eventually they will be all gone.  Turns out those cells are very important.

Insulin causes cells in the liver, muscle, and fat tissue to take up glucose from the blood, storing it as glycogen in the liver and muscle.

In other words, without insulin, my body can’t absorb the glucose energy it needs.  Without insulin my blood sugar would continue to rise creating quite a toxic soup in the blood stream.  Untreated overtime, the brain, liver and other organs start to starve.  Badly managed, diabetes can lead to blindness and the loss of other body parts.  Like arms and legs.  It’s really not a good feeling.  My body knew this couldn’t continue so it tried to flush out the excess blood with water.  I was thirsty all the time. Just before I was diagnosed I was drinking a few gallons of water a day.  Imagine being on one massive water detox diets for weeks.  Yes, that sucked too but at least I had lost thirty (30) pounds.

On the morning of July 15, 2006, I was trying to brush my teeth.  I couldn’t muster up the strength to lift my arm.  I admit, I was concerned.  And so was my wife who was already on the phone calling our family physician, Dr. Anthony Frisoli.  Normally when I visit this guy, which was about once a year — did I mention that before T1 I was almost never sick — his nurses like to check my pulse and blood pressure.  Not this time.

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Photo by Vince Templement via flickr

We were whisked — it was more like zombie drag since I had such little energy — into a visiting room and someone started taking a blood sample.  I brushed off this lack of medical foreplay while the doctor asked me questions about symptoms.  He left and came back minutes later with some great news.  “You’re not gonna die”.  Yippee.  Then he told me I had diabetes.  Frack!  “Your blood glucose is over 500”.  Frack!

I spent about two (2) days in the hospital hooked up to an insulin drip.  The hospital endocrinologist let me start eating again on day two while the nurses started my diabetes education.  Carb counting.  How to use insulin vials and needles!  FRACK NO! Give me one of those damn pens I see you poking me with.

At home, over the next few weeks I learned to read the label of every fracking piece of food that goes into my mouth.  Pay attention to the carbs, not the sugars.  All food is converted into glucose for use by the body.  If I eat too many calories my body will convert excess glucose into fat.

On many occasions back then — and still so today — I would get warm all over, sweat all over, and start to shake like a Hawaiian dancer.  Oh yeah! Hypoglycaemia — low blood glucose! Sometimes known as “I fracked up, mis-judged the food and took too much insulin”. Scary shit that!   If I could visualise hypoglycaemia it would be the equivalent of leaving your baby at the Umbrella Corp day care.  Used to freak the wife out and scare the kids but not anymore.  Now they just run and get me some chocolate.  Yummy!

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Photo by turbozmr2 via flickr

Since no one else in my immediate family had diabetes, I started to feel a little lonely.  So I turned to my best friend — the Internet. I found some folks in a similar situation — older people with a young disease.  Amy Tenderich blogged about her situation and provided useful informational resources.  On one blog posting she mentioned the community work being done by Manny Hernandez.  Manny had recently launched a web site called TuDiabetes — a social network for people touched by diabetes.  I was member number twenty-two.  It was here that I discovered the early members of what would become the diabetes online community (DOC).  Thanks Amy, Manny, George (ninjabetic) Simmons, Bernard, Kerri, and other members of the DOC!  I’ve never met these people and yet, I feel strongly connected to them.

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I am 44 years old this year.  I was born in November which as it turns out is also Diabetes Awareness Month.  The DOC is buzzing with blog posts and tweets and meet-ups.  There is already a flurry of activity on twitterTuDiabetes, and on Facebook. Through the first few weeks of November, during the BIg Blue Test, millions of people with diabetes around the world will attempt to break the record for the largest number of holes poked in a finger. It will be the largest “Ouch!” heard around the world.  And I want it to be loud.

I want the world to hear us.  I want to scream loudly. “I WANT A FRACKING CURE ALREADY!”.

Sorry, major emotional outburst there.  I don’t want to live with this disease any more.  I’m sick — literally — and tired of it.  We’re going to keep talking about it until you are sick and tired of hearing about it. We want you, the ignorant, poorly informed public to get educated and involved. Open your ears and eyes.  Diabetes is all around you.  It’s on your street, your block, your neighbourhood, your schools, your offices. Do something!

Here’s how.  Support organisations that are funding research into a cure — like the JDRF or the Joslin Diabetes Centre.  Volunteer or get involved in one of fundraising efforts.  I’m raising funds now. You can help me by making a donation to my walk team.  Donate to organisations like the Diabetes Hands Foundation that works to raise awareness of the disease.  Just do something!

In the meantime I will continue to poke holes, study food labels, and keep hoping.