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.

Where Did All the Fun Go?

Do you remember the time in your life when all your responsibilities for the day could be filled in about 20 minutes? Get up, make your bed, feed the dog and clean your room. The rest of the day was yours.

And each day seemed to last forever. They stretched out for ever in front of you. LIke an eternal adventure you never knew in which direction it would blow. Stretch three months of those days together and it became forever. You'd suck every opportunity out of every last minute, too.

Roll out of bed at 9 to a warm breakfast and then off to swimming all morning in the ocean until your hands turned blue and your lips would match. Then running up to lay on the hot sand until you thawed out and finish it up with a lunch of a jelly-jelly-sandwich and a thermos of warm Strawberry Falls Kool-Aid.

Or sitting out on the curb in front of your house past 9 on a warm summer night with a few friends you just met that day trying to stave off the moment your mom would appear in the lighted doorway to call you to come in for the night. When all was about fun. Every minute was about fun. Where is all that fun now?

My last Thursday looked a little more like this. Up at 4:30, out to the garage for 40 minutes on the bike trainer, shower, get kids fed and ready for school, find missing shoes and mismatched socks, chase Eli around the house to get his birds nest of a head to look a tad bit more like an intentional hair style all as we are walking out the door.

Groups of 35 11-year-olds asking 472 questions an hour for 5 hours. Off at 12:30, stop by home to switch cars, get sandwich to eat in the car, hit the pharmacy to combat the latest cold and the local district office to get Shea an inter-district transfer to get her to a better school next year.

Running late. Fifteen minutes to get to a meeting 20 minutes away and no gas. Avoid El Camino Real which is a zoo at lunch time. Wrack my brain for an alternate route.

Fake it. Turn right on Rancho Santa Fe Road. It hits Leucadia Boulevard, right?

And then just for a moment, there it is again. I had never been on Rancho Santa Fe before and it's like driving through an old mountain town with old houses on big lots and tons of open space. And as I start down the road it all starts to slow down.

Just seconds in and a field of wildflowers catches my eye and I'm instantly back in the Spring of my Sophomore year at UCSD. Just about every weekend I would drive home to Seal Beach. I would sit the whole time and just stare out the window.

You see, there was this portion of the drive where the side of the 5 was literally coated with wildflowers, bright orange and yellow. And they made this warm, soft, carpet of color that made you want to pull over, get out and just lie in it. To feel the fuzzy flowers hold you up to the sun that would bake your skin. I could lie there for hours, thinking about nothing, fully engulfed in the sun and the flowers.

It was a good time in life when I felt like I had all I wanted and hadn't hit that part in life where the responsibilities start to encroach on every aspect of everything I do like the late afternoon high tide that comes up and slowly eats away all of the footprints and sandcastles and holes that the summer visitors had made. It creeps up, and wipes clean the whole beach until there's no signs at all that, once, earlier that day, fun was had there in that very spot.

This old song came on the radio from the early 90's. Its name escapes me, but it was one of those songs that was overplayed on all the stations until it really framed that era. Perfect, just perfect, I thought.

And the flowers continued as I drove. Another field over on the left, a patch behind that old church, a few scattered here and there.

And then Leucadia Boulevard. Make a left. Find gas station. Gift card won't work. Don't take Visa. They take debit, I think there's $4.30 left in the account.

I hope there's $4.30 left in the account.

Put in $2.50 just to be safe.

Check time. Need to be at the meeting four minutes ago. Like those odds.

Sit in an hour long meeting trying to improve math placement standards that have already been decided and solidified. Race home to cook dinner, clean up, showers for all, pack lunches. Pray and put kids to bed. Read stories. Get kids water. Race out to put in an hour tutoring.

Come home at 8:15. try to have a coherent conversation with Tony. Collapse into bed and wonder where my day went. Start all over again tomorrow.

With a day like that, I think it might be time for a change.

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.