Out the Window: Preparing to Sail Solo

I have thirty-four red marks on my outer thighs from the insulin infusion sets and continuous glucose monitor sensors that make their home beneath my epidermis for up to a week at a time. The tissue in my upper buttocks is currently too scarred up to even use to inject insulin.

I have a nice long scar at the base of my abdomen from having two c-sections to free children who grew very fat in utero from the excess sugar in my bloodstream. I currently have one penny-sized bruise on my stomach from the Symlin I inject there two to three times daily.

I don’t even want to think about what my kidney tissue or the back of my eyes look like, not to mention the inside of my vascular system after fourteen years of being ripped up by red blood cells that are strapped down with too many glucose molecules stuck to them because I couldn’t figure out how to perfectly mimic my own dumb pancreas. But, my feet- my feet still have their flip-flop tan well into December.

Diabetes has beaten up my body in so many ways over the years. It has done its best to screw with my mind. It has preyed on the fears of those who love me. But there have always been some things I will not let it take from me, the first of which is that flip-flop tan.

When I was diagnosed, my well-meaning doctor told me that I could never walk barefoot again, that from the moment my feet touched the ground in the morning until I retired them in the evening, they were to be strapped into a closed toe, well-fitted shoe so I would not lose them to gangrene. It was the first piece of well meant doctorly advice I chucked.

To a Southern California beach girl who was raised in the water, that new law was worse than the threat of the complications he had just handed down. The flip-flops went on that next morning and have rarely been off except to be replaced by a pair of heels once in a while when going out, or top-siders when on the water.

During my first year with diabetes, I read a few books on my new disease. Most chapters I skipped because they just listed in detail all the horrible complications I was certain I would never get. But there was one precaution I came across that I tucked in the back of my mind, knowing it was one I was going to have to eventually chuck out the window also.

I read in some odd passage that as a diabetic I would never be able to fly a plane alone, drive a big-rig, or sail a boat alone. I was not so upset about not having a career as a long-haul trucker, the hats never really looked that good on me, and flying I have always seen as a way to get to all those amazing places I want to see, not as a pastime in and of itself. But to be told that I wouldn’t be able to sail alone did not sit well with me. I knew it wouldn’t be something I could prove to my doctors the next day, but it was on my list.

As I have lived with this disease, I have learned the many different moods of diabetes and some very effective strategies to try to tame it. I have seen the technology come so far so quickly that things that once seemed scary and risky now seem very attainable with good, solid planning and a lot of attention to detail. Sailing solo is one of those things.

Unfortunately, the old wisdom prevails. People are being told the same old story when they are diagnosed. Here is the list of things you can’t do, you shouldn’t do, you will never be able to accomplish. Their dreams are being crushed at a time when it is so crucial that they be given hope and encouragement. Instead of helping them adjust quickly to a whole new way of living, they are being sucked dry of their hope of leading a normal life.

The time has come.It is now upon us. It is time to chuck outdated proclamations out the window. It is now safe to sail alone with proper planning, with a Plan B and a Plan C and a Plan D for when things don’t go the way you expect.

I’ve had enough conversations with the diabetics already out there sailing, gleaning anything I can from their experiences. I’ve read the horror stories of sailors who had trips where everything went wrong and what made the difference in their survival. I know I can be okay with enough attention to my body, and how it reacts on land, to food and exercise and stress and temperature and lack of sleep and inactivity, and a lot of activity.

In February 2011, I’ll come back with a whole body tan from four days sailing a 22′ Catalina the 100 miles from Key Largo to Key West, having proven to myself and to my doctors and to the world at large that diabetes should not slow us down.

The Two-Story Diabetic

When we chose our house I was thrilled to get one on a cul-de-sac so the kids could run around without having to call off their game of football with a resounding, "CAR!!". The panoramic ocean view from both kids' rooms was a great selling point as was the community pool and jacuzzi to finally teach the kids to swim. The one thing I overlooked was the fact that a diabetic should never live in a two-story house.

When 2 a.m. calls and my blood sugars have plummeted to 38, pausing for a moment just before falling off the cliff that some do not come back from, and I have to locate some sugar in the house, I spring from my bed in a panic and begin the sprint to the kitchen before my eyes are even open.My brain is still asleep and my body has been robbed of the sugar it needs for my muscles to move in any sort of coordinated way. While it's still dark and the stairs seem to be swaying in the wind, I attempt to hobble down those stairs without spraining my knee or falling flat on my face.

Most of the time I make it to the kitchen and force the chocolate milk sludge into my gullet, but I have certainly had some close calls. I have learned to count the seven stairs until the landing halfway down and the other seven to the bottom just so I don't step where there is no step, or forget to step when there is one.

When I finally make my way upstairs later that night with hardly the energy to climb those stairs, I often realize I have left my blood glucose testing kit downstairs on the coffee table. So I have to extricate myself from those warm covers I have just settled myself under to wander back down the stairs.

I climb seven and seven back up and get settled again under the covers to test my sugars before turning in for the night. Hoping to make the correct adjustments to avoid yet another nighttime low, I find that I am still low and am 10 feet too high to reach the fridge from my bed. So back down I go, pounding some choco-sludge and the back up seven and then seven more.

By the time I am upstairs again, Tony is still sound asleep. I shut off the light and hope for a low-less night avoiding a season-ending, blown ACL from only counting to six before turning.

So my advice to the diabetic world out there, go for a single story, maybe a ranch style or a sprawling mansion, but whatever the land-use gurus are promoting and the highly paid real estate agent is pushing, avoid the two story, and by all means, run screaming from a tri-level home. Believe me your knees will thank you for it.

Multivariable Equations

As any good scientist knows, if you want to find out what effect any one part of your experiment has on the outcome, you change only one thing at a time. Diabetes is much like an experiment that I conduct on an on-going basis. Recently it has all gone haywire and after months of not being able to catch up with it, I went a little ape-shit. I decided to change nearly all of it and hope it comes out alright. Some of the changes came at my own hands and some were dealt to me.

A month ago everything was stable: relatively consistent diet, workouts getting progressively but slowly longer and higher quality, and everything else in life just humming along. And then I got sick. Sickness, I think, is the ultimate diabetes enemy.

It makes it so you can't workout, which will change insulin needs. It makes it so you sit on a couch and sleep all day, which will change insulin levels. And then your appetite gets all funky and you get hungry at weird times and nauseous at others, which of course changes insulin needs.

So, after being knocked out for a week, I slowly rebounded and began training again. And then I got hit by another cold and was back on my butt. As soon as that was over I was gearing up for my son's surgery- 3 days in a hospital room with a crying child who just wanted to go home and not be in pain-10 days with not more than 20 minutes of sleep at a time and the other 23 hours of the day constantly tending to his needs. The needs of a four-year-old with two casts up to his groin are abundant and frequent. So my overall stress level changed in an instant. Which, of course, would make it the perfect time for my doctor to change the dosing of my anti-thyroid meds. More insulin change.

Now with all this change, one might think I would naturally shy away from more self-inflicted change, but, alas, I am not that smart. I decided to do a complete overhaul on my diet to try to discover what has been going on with my blood sugars and to finally get a leg up in the two-year battle with the pounds my funky thyroid has strapped to my ass.

And, of course, there was the addiction to way too many diet sodas a day to mention. I don't know how I got so addicted to a food that isn't actually a food, but a product made in a lab somewhere. I figured I would need to go cold turkey on that stuff for a while until I got a handle on my blood sugars.

So Monday morning the changes started. Monday was rough. Tuesday was worse. By Wednesday the headaches were throbbing. Thursday the blood sugar patterns were still undiscoverable.

On Friday I decided to cruise through a website that had invited me to blog for them called asweetlife.org. And I stumbled across something that I learned in that hospital Diabetes 101 class, but had failed to recognize in my wild sugars. I had been fighting frequent, random lows for almost 2 months and then huge swings up to the 300's after. It wouldn't matter how little sugar I gave myself to correct for a low, it always jumped right to 300 after. I read a blog on the 'dead in bed' syndrome , which I have to say is a far too cutesy name for such a horrific, life-shattering event.

I have always done well with my nighttime blood sugars, which is nice because if you can consistently have good nightly blood sugars you have conquered one-third of your daily routine without having any brownie cravings, or extra time on the bike trainer or a movie marathon on the couch messing you up. It's fixed and it's easy.

Well, in the last two months, overnight has been anything but easy. I either wake up low and rush downstairs to get some sugar and then, usually, a few hundred calories to follow up, or I wake up high. There was no in between. I was afraid to turn up my basal rate for fear of getting too low and dying in my sleep, but I couldn't turn them down because then my highs would be higher.

My nighttime basals have varied between 0.45 and 0.5 for the last 13 years that I have been on the pump. It is one of the few basals that hasn't really changed at all over the years. In comparison some of my other basals have changed from 0.8 to 1.6 over time, so the nighttime consistency is nice.

That is when I was reminded of the Somogyi affect and realized I might not be going about this the right way. The Somogyi affect is this weird thing that I always struggled with when I was on shots because my nighttime insulin needs are so much lower than my daytime needs. I would take a shot, but it would be too much and drive down my sugars. I would be low and asleep and not wake up from it. My body would get pissed off after a while at being so low and pump out a series of hormones to counteract it and let my liver release some stored sugar to counteract the low.

I would then wake up high and think I needed more overnight insulin, thus worsening the cycle. The insulin pump fixed the problem back then, but now my inability to listen to my body was forcing the same affect. Even though I figured this out, I was still pretty stubborn about it and didn't want to lower my basals for fear that I might be making myself go even higher.

But hearing a phrase like 'dead in bed' for the first time shakes off the stubborn attitude real fast and finding the research they are doing on what causes 'dead in bed' was even more alarming. There are studies out there that say that overnight low blood sugar can alter the way your hearts electrical system works and although more research is needed in this area, the thought of messing with my hearts beating was enough to scare the living daylights out of me.

After reading the second study, I promptly took my hand off the mouse, lowered it to my belt and grabbed my pump. Those basals never saw what was coming to them. Low, lower, the lowest they have ever been. Later, after sitting on the edge of my bed convincing myself not to be afraid, that I would probably wake up tomorrow like I have done for decades already, and very appreciative that I get to sleep next to my husband who would probably notice if I began to convulse with a low blood sugar and be able to rescue me, I laid down to sleep.

And God smiled down on me with the first night in three weeks without a low. I woke up at 6 refreshed and alert and not feeling like crap like I had for weeks before. When I laid down to sleep the night before I was 125. My glucose moniter registered at 155 that morning.

After this great night of sleep, I realized a few things. When I sleep through my lows, or even if I wake up (typically it's after being low for an hour or more) my body is more resistant to insulin for at least 12 hours after. Which makes the whole day a battle against my body.

On top of that, I wake up feeling hung-over and hazy and grumpy and unfocused, which is not a good combination for dealing with a classroom full of fidgety, talkative, well-meaning 6th graders for 7 hours at a clip.

So with my new basals in hand I guess changing up everything all at once wasn't such a crime. Although I think I could have come to the same conclusion if I had only cruised around on the internet a little earlier and not been so afraid to try something new. Now let's see if a happier, more well-balanced body will let go of the extra padding it has developed in some sort of hibernation preparation.