PLan B Book

I have two sides to my personality, one that likes to fly free, moving on every whim of desire and taking every opportunity as soon as it presents itself, and the other, which is my practical side. It’s my practical side that likes to prepare and research and plan for every possible obstacle.  Single-handed sailing through the Florida Keys this February will provide a place for both sides of my personality to work together as one unit. While at sea all alone, I will be free to change course, to get a closer look at an island that catches my eye, to slow down and follow a manatee eating lunch, to find the craziest, out-of-the-way dive bar to grab some hot food and recharge my batteries (both my actual batteries- cell phone, laptop, GPS, and my more figurative batteries-, a friendly face, stable ground, and a warm meal).  But because of my diabetes, I will need to do a great deal of behind the scenes planning and preparation before I ever set foot on that boat.
One of my latest preparations is writing my own emergency manual, my Plan B Book. For the non-diabetic world this might consist of a first aid manual and the number of the Coast Guard. For me, it is a thirty page book organized from the most extreme emergency to the least.  If I need major medical care (short of a call to the Coast Guard to bring in the helicopters and rescue divers), I will need to get myself to a hospital, which is easier said than done.  If I were on a typical road trip, I wouldn’t even bother to find the names of any hospitals along the way. The amazing 911 system takes the hard work out of it. Simply call, tell them where you are and in a few minutes you’re safe. On a boat, it is a whole new game.  You can’t exactly pull the boat up into the hospital parking lot and jump out to find a nice orderly waiting with a wheelchair.  Thus, my creation of the Plan B Book. The first pages are for every hospital and emergency medical center in the Florida Keys. Each page includes a map of the hospital and at least three docks nearby. For each dock, I need the longitude and latitude, address to give to the ambulance driver, the phone number of the dock master so he knows why I am crashing at his dock, and in case I can’t contact an ambulance, the path I would walk to get to the hospital.
After that follows the plans for the mishaps. The “I forgot to pack my Symlin,” or the “Oh crap. I just dumped all of my test strips into the ocean,” or the “I never even thought of what the Florida heat would do to my insulin” mumbled as I roll the insulin bottle around in my hands and notice that the once clear liquid is now chunky and white. So in the next few pages are the addresses and phone numbers of every pharmacy in the Keys, all five pages of them, divided by region.  And just in case there is not a single one who will transfer my prescription (which of course I have every one listed with the prescription number and phone number of each pharmacy who holds the prescription), I have the number of the only endocrinologist in the Keys in case she might take pity on me and give me one of those free samples of insulin or strips or whatever it was that I ruined, or lost, or forgot.
My preparation goes far beyond the Plan B Book, too. It covers knowing that things happen, airlines lose luggage, I lose my mind and forget to pack things, electrical systems on a boat can break and leave my fridge as nothing more than a cheap cooler without any ice packs to keep it cool.  So I pack multiples of everything I need and I pack them in multiple locations and in multiple contraptions. I pack four blood glucose meters, one in each backpack, one in a waterproof Otterbox below deck and one in my ditch bag, just in case. I bring six vials of insulin, enough to keep me alive for five months, and hide it in all of the same spots and two more in the fridge. I pack my insulin pump, my old insulin pump, a loaner insulin pump from Minimed, and even needles (which I have not used to inject insulin in the thirteen years I’ve been pumping) in case all three pumps break. I bring Nick, my preferred CGMS with his extra sensors, and Johnny, my back up CGMS system, with his extra sensors. My bags will be so full with back up diabetes supplies, I will only be able to fit one swimsuit and one pair of shorts into the remaining spaces. Looks like shirts will have to wait for another trip.
After spending countless hours thinking of everything that can go wrong, and five ways to fix each problem, after packing and repacking to get all the extra equipment, equipment that I will probably never even use, to fit into my two bags, and after spending time typing up and printing my Plan B Book, I can shut down the practical side to my personality and fully embrace my footloose and fancy free side because I know all of my bases have been covered, and a few extra ones at that. I will be able to fully focus on the beauty in front of me, and the one hundred miles I have to cover, and the diabetes that I will be conquering by not letting it stop me from living my dreams.

Old Reliables

     After spending the last 14 years as a runner, I have easily run over 2000 times.  I have run different routes, in different cities, in different weather and in different clothes, but there are those runs that I will run over and over again. Routes that have cemented themselves in my mind, ones that I look forward to running every time.
        There is the 2.75 mile route from my mother-in-law's house in the inland hills of San Diego. This one I run every Christmas morning after the early morning present rush and before the afternoon extended family dinner. The first mile starts out easy. The first time I ran it I was convinced that I was having the run of a lifetime, where every thing falls into place and every step feel like pure joy.  After the first mile I looked at my watch and noticed it was the fastest mile I had ever run. And then I turned the corner at the bottom of Alpine Boulevard and realized that I had been running downhill the whole time and that the incline could not last forever. Those first steps around the corner taught me quickly that it would be a long uphill journey home.  I finally felt the elevation kick in and start to burn my lungs. Now, Alpine is not all that high up, but for a girl who has, with the exception of four weekend spent at the bottom of the rockies in Colorado, never lived above thirty feet of elevation, it feels like Everest. The next mile is spent in a gradual incline and then another corner. Then I am running straight up. At the top of the hill on the right of the road is a graveyard, and by the time I have reached it I feel like finding one of those empty holes, lying down, and just waiting for someone to come along and throw a little dirt on me. The rest of the run is a gentle downhill that lulls me into believing it wasn't such a bad run and that I will probably do it again next Christmas.
       There is the run from my parents house that is flat and fast and gives me a chance to see how much speed I have earned from my training.  Nine-tenths of a mile as hard as I can before I reach the turnaround at the end of the boat docks in the Seal Beach Marina, stop for a moment to breathe in the salty air, admire the 50 foot cruisers and racers, dream for a moment of taking to the sea for a year long voyage, turn around and sprint the nine-tenths of a mile home faster than I ran there. 
         There was the five mile loop I ran every Tuesdya in college. The one with someone singing cadence alongside me and yelling, "Run! Walking is for wussies." (I think that may be the edited version). There's the Torrey Pines loop that starts with a hike straight up the mountain chatting with Tony, only to be followed by a great dirt road gently sloping to the sea with enough stairs to descend and turns to make and tourists to dodge that you have not a moment to think of how tired you are, and the views that lull you into the false belief that you could do another loop, no problem.
      The great thing about these runs is that you know them so well. You know exactly how hard they will be, and the exact spot where the run will give you a great view, and when you know that it is all downhill form here. I usually seek one of these runs out when I am faltering in my training, or when life is spinning out of control and I want something to turn out like I planned it.  They never disappoint. For me they are a lot like my faithful meals. The ones that I am so familiar with that I know, without fail, exactly what they will do to my blood sugars, and precisely how much insulin to give to cover them.  The are the old reliables. After a day like today, where I am eating on another person's schedule, and the dinner that was planned for two-o'clock is served at three, and I have no idea what ingredients were used in the dishes served to me (did they use canola oil or butter? Or maybe just plain LARD!), when I have been chasing my blood sugars all day and testing every two hours, and checking Johnny every twenty minutes, it is nice to go back to the old reliables and be sure that my blood suagrs will turn out just like I planned.  I think tomorrow will be a day filled with them. A Met-RX shake for breakfast, an apple and string cheese for snack, a Met-RX shake for lunch, and a two egg omelet with a little veggie sausage and some bell peppers topped with a quarter-cup of shredded cheese next to a piece of wheat toast to wrap up the day and plenty of water all day to replace what all the highs took from me today. And hopefully balance will be restored and I will have one of those flat-line days that we all love to boast about and post pictures of on Facebook. You got to love the old reliables.

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.
For further information regarding Erin’s trip, go to www.diabeticsailor.com.

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, when I spring from my bed in a panic and begin the sprint to the kitchen before my eyes are even open, when 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.  I, most of the time, 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.
     When I finally make my way upstairs late at 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, when I find that I am currently low and am 10 feet too high to reach the fridge. 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 has had a good ten minutes of lead-time and is sound asleep. I shut off the light and hope for a low-less night avoiding another more chance of 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 ongoing 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 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 my 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 and 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 without containing any real food products in it.  I figured I would need to go cold turkey on that stuff for a while until I got a handle on it.
   So Monday morning the changes started. And Monday was rough, Tuesday was worse, Wednesday the headaches were throbbing, Thursday the blood sugar patterns were still undiscoverable, and 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, 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 would 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 then looking into the research they are doing in what causes it 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, Lower than 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 and without a call from my son to itch his casts or take him to the bathroom. I woke up at 6 refreshed and alert and not feeling like crap like I had for weeks before. I tested and was 116. When I laid down to sleep the night before I was 125.
     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.