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.

Another Shower Epiphany

I was in my thinking spot, more commonly referred to as the shower, the only place I can get a period of time long enough to complete a thought in my head, reflecting on my last piece of writing and more over the tone of the last four months of my writing, when I realized that I had once again fallen into the depressing part of my emotional tide chart.

Just like the tides come in and out with some predictable regularity, so too I tend to fluctuate between the heights of optimism, a I-can-conquer all attitude, and the depths of my dark humor and despair. I rode the tide of the dark side for long enough and decided it was time to see the moon pull on my side of the earth for a while.

The last thing I wrote was a simple exercise in letting the mind wander as I inspected me, twenty-five random things about myself. I realized how easy that was and thought I might be up for a bigger challenge: twenty-five good things Diabetes has brought into my life.

I am sure I could rattle of a good five or six typical responses, but to get to twenty-five I would actually have to think. I thought it might be interesting to see how many would be up for the challenge to look at their own tragedy or trial and try to see how many they could come up with. Maybe it’s just what the doctor ordered.

And so it is, 25 good things diabetes has brought…

1. It wasn’t cancer or Leukemia. Those were the other options my doc proposed that my symptoms would match.

2. It has brought great discipline to my life. I have always been an undisciplined sort and had been praying that God would give me more discipline for about two years before he obliged. Little did I know…

3. It gave me a greater appreciation for what an amazing body God has designed in that it can balance the amount of insulin released from the pancreas, the amount of glucose released from the liver, the signals of fullness after a meal, the amount of stress hormones flowing around and the ever changing needs of muscle tissue for sugar. And it only allows the amount of sugar running around in my blood to vary less than 40 milligrams in every liter of blood. When I am left to the task I sometimes can’t get it to stay within hundreds of milligrams.

4. It has allowed me to team up with some pretty amazing people who are charging and changing the face of diabetes. People who challenge the notion that diabetics need to be mellow when it comes to pushing their bodies to the limit. People crazy enough to do the Ironman Triathlon, to climb mountains and to run a 200-mile relay over 24 hours. They inspire me to push myself harder every day I am out training. Without diabetes I would never have pushed myself to join a group (I was never much of a joiner)

5. It has made my life hard enough that I often get to the point where things are so bad that all I can do is resort to laughing at how ridiculously hard all of this is. What else can I do when my blood sugar is so low that I can barely control my impulses and have come within seconds of pouring an entire box of cereal over my head because it seemed like it might feel nice.

6. Without Diabetes, I would not have found out so quickly how great my husband, Tony, would be at taking care of me and forcing me to talk about all that I was feeling.

7. Diabetes gave me the ability to take off an extra 6 months during my pregnancy with Eli. That was time that I got to be a stay-at-home-mom for my eldest, Shea, time I treasure. It also gave me nine months off when Shea was born.

8. Diabetes gave me a reason to write a book, or maybe I should say, be in the process of writing a book.

9. 25 is going to be hard…

10. Diabetes really drove home the divide between spirit and body. I can remember in the early days walking out of my doctor’s office in Los Alamitos and realizing my body was now broken. My pancreas just didn’t work like it was supposed to. But my spirit still remained as it was. It forever divided the two in my mind.

11. If Diabetes is the worst thing that has happened in my life, I have led a charmed life. There are many worse things that can happen.

12. I get to bring my own candy anywhere I want-- movies, meetings, etc.

13. It has humbled me in a way that I needed big time. Being an arrogant, pompous fool never benefited anyone. I figured out real quickly that I was just as susceptible to harm and tragedy as the next guy. The invincible teen years ended before their time.

14. Diabetes started my running, swimming and triathlon career. When I was diagnosed my doc said I had to exercise everyday. I was in college so I couldn’t really join any teams, wasn’t quite good enough for college ball. So I did what I could do alone and with no equipment, I ran. One of my friends got me into swimming at the pool at UCSD between classes and I already rode my bike daily (the result of personal budgetary restraints and expensive parking permits on campus.) My competitive spirit put all three together and I started tri’s.

15. My daughter is well trained in calling 911?

16. I think it turned the balances in my favor in getting sponsorship with the Power Puff Girls/Cartoon Network for surfing. I wrote some cheesy paragraph in how I am just like the Power Puff Girls because I fight my own monsters. Yeah, I know, I played the D card. But every now and then you have to.

17. I have a great relationship with my doctor because I see him so often. He is so comfortable that he’ll sit down and rap with me for a while about the good ol’ college days. So when I do have a problem he always takes the time to hear me out.

18. I can always look back and say the reason I got a C in O-Chem is because my sugars were in the 7 or 800’s when I took my final (even though when I took O-Chem C I got a C too but I was fine.)

19. I never have to pony up a doctor’s note for an absence if my employer asks because I have a chronic condition. (Anyone up for a Tuesday morning surf when the Santa Ana’s are blowing and everyone else is at school or work?)

20. It has on many occasions forced me to face my own mortality.

21. I have met a few good-looking firemen and paramedics when I have had to call 911 because my sugars had gotten too low.

22. Diabetes makes sailing solo through the Florida Keys for four days more than a self-indulgent pleasure cruise and turns it into a chance to inspire others to do what people have told them they couldn’t because they are supposed to be good little diabetics and not push themselves to find new ways to conquer what in their Pre-D lives would have been commonplace and so easy.

23. It gives me a cause to raise money for. Insulindependence.com has this same mindset of helping Diabetics push themselves and inspire other diabetics to do the same. Check them out. (And if you want to help me, check out http://www.firstgiving.com/erinspineto.) Yeah I know it’s a shameless plug, but what can I say? It is an advertisers world.

24. Maybe diabetes has just allowed me to give you a reason to see the bright side?

25. Diabetes gives me a reason to come up with twenty-five reasons that diabetes has been good to me and spend the last hour practicing some writing skills.

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.