July 2010- The Plan

So here's the plan...

July 2010. Fly into Miami, grab a car and drive to Marathon, about halfway down the keys. Check Continuous Glucose Monitor to see how sitting still for 6 hours has affected my blood sugars. Adjust accordingly. Find a place to stay and get some grub at a nearby eatery.

Bolus.

Try to find an internet hookup to update blog, revel in the fact that most people down here are too busy living real life to worry too much about having internet connectivity in every possible location at every possible moment. Think about moving here for that very reason.

Walk back to my shack. Stop in amazement at a sunset over land. A new thing for this west coaster. Get some sleep, probably the last I'll get for a while.

Morning of Day 2, calibrate sensor so I get good readings on my CGMS, go meet Pagan Charm, my 27 foot Balboa that will be my home for the next 4 days, get familiar with the boat. Load the food for the trip that has become both my savior and my tormentor. Set sail.

Play around with my basal rate to try to get it to match the change in activity that you make when on a boat. First stop, Big Pine Key. Anchor, check out Key Deer, smallest deer around, looks more like a small dog then a deer.

Take pictures.

Get some pizza, bolus, and return to the boat. Change infusion site which involves ripping off the previous one, filling a new cartridge with insulin, jabbing a new needle with new infusion set into my upper buttox, priming the system and then hooking up the quick release system. Watch sunset #2. More pictures. Sleep.

Day 3 to Key West. Eat at Margaritaville on Duval St. and mark off one more on my bucket list. Maybe hit Hemingway's house and a couple more tourist traps. More pictures. Look for that elusive connection to the web. Alone on board, enjoy another perfect sunset. Watch as the winds change. Check weather. Can I beat this storm home? There's only one way to find out (well, only one stupid way.)

Pray.

Leave anchor early, real early. Sail to Bahia Honda Key. Storm has failed to materialize, thank God profusely. Apply another coat of shelack, oh wait, I mean sunscreen, lie on one of the only white sand beaches in the keys (mostly just rocks on the shoreline there) increase basal insulin rates because I always need more insulin when I don't move for long periods of time.

Flip over. Breathe. Flip over. Breathe. Swim back out to the boat.

Barbeque the fish I just caught (I can dream, can't I?)

Eat. Bolus. Watch sunset #4. Notice the slight variations from the last 3 perfect sunsets. Wonder why I keep missing these at home.

Change infusion set again. Change CGMS sensor which involves a much larger needle (should be illegal to make needles this long and this thick.) Jab it in the other cheek, slowly remove needle to leave sensor still in there, wait 5 minutes, attach transmitter, make sure it is talking to Johnny (my pump), tape it down, wait 2 hours without any food, exercise, or insulin boluses, calibrate, go to bed knowing Johnny will be watching over me as I sleep and waking me if I get too much or too little sugar in my blood.

Now if he could only fix me a snack at 2 a.m. when I am low and incoherent and looking for sugar in the middle of the night. Double check to make sure I have good sugars readily available.

Try to take it all in, my last night on Pagan Charm. Wake to see a sunrise over the water. Been waiting my whole life for that one. One more off the bucket list.

Leave early to get back to Marathon. Pictures, sea breeze, warm sun. Take it all in. Lodge it in my memory banks so that next winter when things get cold and things get hard I can pull it back out and revel, if but for a moment. Revel in the fact that I lived, and I lived with Diabetes. I never let it slow me down, never let it beat me.

Return boat. Drive back to Miami in a Jeep, loving the thick air blowing by, fueled by the memories of a great trip. Jump in a plane and crash. Me, not the plane. Sleep the whole 6 hour flight.

Come home and share with all the guys on Insulindependence.org the new data and management strategies I have discovered for everyone to apply next time they are out sailing. Experiment Finished. Conclusions positive.

Florida Keys 2010

For thirteen long years I have contended with Diabetes on my own. Of course I had family and friends to lend their support, a husband who was amazing at helping me deal with the emotional side of Diabetes, and good doctors to give me Diabetes Basic Training and to run their tests, but I never knew a single other person with Diabetes.

You see, Diabetes is a tricky opponent. The goal is to keep the amount of sugar in your blood at a constant level between 80 and 120 mmol/dl. In a healthy person the pancreas works like a thermostat turning insulin production on and off to keep it even keeled, like a heater in your home to keeps it a perfect 72 degrees. It does an incredible job, seldom a moment does it miss.

In my case, I have been entrusted with this never-ending job. And so I balance. I balance everything to keep it steady. I balance my food, my exercise, the insulin I give myself, and my Symlin (an extra medicine given in a shot at meal times). I have to account for stress and all the other “normal” illnesses.

Even things as simple as a scary movie can throw things out of whack. With so many variables to balance, the math becomes difficult and complex. And it’s hard to get any valuable information on the finer points of management from a doctor who has to specialize in so many different diseases. When I came up against a new roadblock in figuring out this equation, I had to use myself as a guinea pig to experiment on to find the best course of action.

After thirteen years, the roadblocks were getting more frequent and more frustrating. It had gotten to a point where I needed some help. Never a joiner by nature, I had decided to pass on the support group and, instead, check out a more anonymous Diabetes Conference. It was there that I first ran into the guys who run Insulindependence.

Now here was a group of people who were doing things. Big things. Like running the Ironman triathlon, climbing mountains in Peru, and surfing in Costa Rica. They had gotten together to play and to swap all the data they had gathered through years of using themselves as guinea pigs.

This was just the help I needed. Why reinvent the wheel if you don’t have to? If someone else had come up with a good strategy for mastering one of the hundreds of situations that would drive my sugars skyward, I could save myself another long, drawn-out experiment. The best part was these people were into anything you could think of, running, triathlon, surfing, snowboarding, just about anything challenging and active. For me, my passion was, among other things, sailing, and I wasn’t alone there either.

I think I have always dreamed of going to sea. From the moment my grandpa, Captain Jack, let me come aboard when I was eight, I found a place where I could finally feel at home, as if I had been called to the sea. Just the sight of a boat heeling over at the perfect angle, cruising along at a good clip is enough to instantly cause my body to relax in the midst of a stressful day (thus why my classroom is plastered with sailing pictures.) The thought of one day being able to sail away, even if for but a little while, was enough to keep me going through the rough patches in life.

When I got Diabetes, I could feel that dream slipping away. Common thought at the time was that there were things a Diabetic couldn’t do, or maybe shouldn’t do: drive a big-rig, get a pilot’s license or sail a boat alone. People feared that if a Diabetics sugars got out of control and rendered them incapacitated there might be trouble.

But times have changed. The technology we have available to us now-- from insulin pumps that deliver a steady stream of insulin to Continuous Glucose Monitors that measure the amount of sugar in your blood every five minutes—have changed that belief and the attitude that is sweeping the Diabetes community is that, with enough planning and attention to every minor detail, Diabetics can do, and should do, anything.

So to prove my doctors wrong, to prove to myself that I can conquer anything, and to be an example to al the people out there that are still discouraged by others telling them that they can’t, in July 2010, I will complete a 4-day, single-handed sail through the Florida Keys.

Alone.

With only myself to manage a boat and a disease.

And I ask you to join me. Join me in getting the word out that there are people with Diabetes who are challenging outdated concepts of their boundaries, everyone knows someone with Diabetes. Tell them. Tell them there are others just like them. Others who like to play, who are better controlling their disease through rigorous exercise and who would love to swap their war stories and their strategies for dealing with this complex and sometimes bewildering disease.

Why Sail?

Type 1 Diabetes is a multi-talented killer. It kills quickly, it kills slowly and it can kill by stripping you of any desire to truly live. One slip up in your dosing math, one time you forget your safety sugars, one underestimation of how hard that workout really was and the amount of sugar in your blood plummets to the point where there is not enough to support your brain and heart function.

I’m sure you can guess the outcome of that, and it can happen in the blink of an eye. We all do a pretty good job of staying on top of it, but slipups do happen in the diabetic community. It’s a tribute to all of us that it doesn’t happen more often.

But even if we can prevent the Superlows from happening, it is virtually impossible to keep from getting too much sugar in your blood from time to time. Whether its that hot fudge sundae you’ve had your eye on for a week, a forgotten bolus of insulin because one kid’s crying, one was screaming and that pesky telemarketer just knew it was the right time to call, or you got sick and your body decided that it just doesn’t feel like responding to the triple dose of insulin you had to give it.

Then little by little your blood gets thick with those killer glucose molecules that like to attach themselves to any available red blood cell like an over-forty, still-single, overeager, “my-biological-clock-is-ticking” woman when she finds any man who shows even the smallest smakeral of interest in her.

So what if your red blood cells get a little bigger? So what if trying to pump those enlarged cells around your body will wear out your heart a little quicker or that they start to tear at the littlest capillaries like a three-year-old through presents on Christmas morning? Those capillaries aren’t in anything really important anyways, just your kidneys, eyes, hands, feet and one other really important part.

And so very, very slowly Diabetes silently wears out your body. We all work hard to slow this process. We all use the latest technology, we analyze all sorts of data and walk around like Robo-diabetic with pumps, meters, and continuous glucose monitors strapped to our bodies, belts, and in every bag, backpack and purse we own all in attempt to slow the coming tide.

But, I think worse than both of these, is Diabetes’ ability to strip you of all desire to truly live. Your doc tells you never again walk barefoot, no flying or scuba diving, forget Ironman training, just walk for 20 minutes a day.

Everything in moderation, he tells you. And that’s the killer, Moderation. When was the last time you got the least bit of a thrill from Moderation? Have you dreamed about your Moderation for two years straight, saving every extra penny, telling everyone you know, being possessed by your Moderation?

Never.

But talk to any diabetic who has stepped out of the cloud of Moderation and they will turn your ear bloody talking about their training plan and what their blood sugars were every 15 minutes during their last sub-4 hour marathon and every detail of their next trip climbing Machu Pichu.

They are truly living. And they are talking to anyone who will listen. But for years they were talking to those who didn’t know much about diabetes, those who don’t know Type 1 from Type 2, those who couldn’t help with the right basal rate reduction for an 11 hour hike, those who don't know a thing about the low blood sugar induced Midnight Munchies.

That is until a few of these diabetic athletes happened to sit down together at a table together at a conference and started talking. What was born out of that conversation was the plan to build a community to get diabetics together to talk and to support their moderation-busting adventures.

I, too, have been bit by the bug to abolish moderation. For me its a sailing trip. Four days, alone on a 22 foot Catalina, in the Florida Keys. To sit alone for 96 hours, to sail, to think and to write. To get a grasp on what diabetes has done to my life and what I am going to do to diabetes.

And to support others who want to do the same thing in their own way. I have decided to use this trip to raise funds for Insulindependence and to spread the word that Moderation will never win. We can't let it.