28 December 2010
25 December 2010
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.
22 December 2010
14 December 2010
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.
06 December 2010
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.
08 November 2010
Not that I don't want to go; most days it is the only thing that gets me through a day filled with students who don't want to listen and who are very fidgety and noisy, and errands after errands to run, and lunches to pack and bills to worry about. It is usually the last thing I think about at night when I am trying to get to sleep, although I think sometimes that practice is counterproductive because either I get too excited to sleep or too worried that I have too much to do to get ready or that my story will end like the far too many stories I've read of sailors bailing into their life raft to float for days or even months before they get rescued. But it is something that I am so ready for. My hesitation, is just part of my personality. I always want to be totally sure that big decisions have been looked at from every direction and every scenario planned for so that once I make a decision I never have to second guess myself. And today I pushed that button.
So I fly out of LAX to MIAMI and it takes almost an entire day to get there with the time change. I take a shuttle to Key Largo. Check in with Paul at the Key Lime Sailing Club and stow my belongings. I rent a bike and ride over to get a bite to eat, hit up the market on the way home to grab some groceries and try to get some rest on my new home for the next 5 days. I take off at first light the next day for four days of sailing and solitude. On Friday I pull into Key West, hand the boat off to Paul, wander around Key West for a few hours, grab some lunch and take one of those tourist buses to the airport. Check in and fly out on a little plane to Miami, then to LAX. I grab a ride home with my dad, wake up my kids who were up way too late trying to stay up until I got home, say hello and crash into my bed at my parents' house. Wake up the next morning to well fed kids who attack me with their excitement, try to tell my parents about my adventure between stories form the kids and their week, a quick hour drive home to see Tony who look refreshed and renewed with his week alone, too. Now why would I be hesitant to commit to that. Then I spend the next few weeks or months finishing up the book and take on the next adventure, dealing with the publishing world, which for me seems much scarier than a boat alone for four days.
01 November 2010
684 - Highest blood sugar on record- although it may be a bit inaccurate since the new meters don't go higher than 599
28 - Lowest blood sugar on record- They say you're supposed to pass out at 30
102 - Favorite blood sugar- high enough not to worry about lows and not the "perfect 100" that everyone else strives for-
15 - Pounds dropped at diagnosis
19 - pounds gained after starting insulin
8.3 - Last A1C blood test
5-6.9 - "good" A1C range
7.0 A1C I want
5.5- A1C that I would "shit bricks" over
9+ - A1C that makes me cry
36 - Number of A1C test results I have had to endure
8 - Mini boxes of candy I had last night on Halloween
10 - how much I hate Halloween on a scale of 1 to 10 because of the constant temptation of packages of candy just small enough not to register on the "to avoid" list
1,460 - Number of shots I took before giving up the shots and getting an insulin pump, never to look back
42,340 - Number of times I have sliced a tiny hole in my finger to extract enough blood to give to the machine who will grade my diabetic efforts for the last few hours and give me a result that will either make me smile or make me curse, but either way will better inform me of my enemies tactics and how I can outsmart him.
2,867 - Number of curse words spilled from my mouth in reaction to diabetes
1 - Number of entire boxes of Rice Krispies almost poured over my head in a state of low blood sugar
528 - Number of crying spells brought on by my enemy
2 - Number of E.R. visits due to freakishly high blood sugars
1 - Number of official D.K.A.'s because a box of recalled pump infusion sites got out to me and happened to get used at the same time I was battling the flu (and yes I am pulling out every reason in the world that this one was NOT MY FAULT)
2 - Number of crazy docs who thought they knew more about my body than I did and set me up to do or believe down right stupid things like I would never be able to walk barefoot or that to have 7 different basal rates on a pump is "not necessary"
3- Number of amazing docs who know I live with my body and my enemy daily and who work with me to sharpen my battle plan, who give advice on new research, new tests or new technologies to fight the bastard
14 - years I've had diabetes
12 - years I spent trying to battle diabetes on my own
1,000's friends I feel like I have through Insulindependence.org who help lend support and comfort as we fight together
20ish- the actual number of friends I have made through Insulindependence, though their support makes it feel like more
764 - the Number of times I've said to myself, "Now why didn't I join Insulindependence sooner?" and replied to myself, "Oh, Yes, That's right, they've only been around since 2005!"
864,357- people I wish I could tell to become a part of Insulindependence- It will change the way you attack the enemy
62 - boxes of pump supplies, glucose monitor supplies, sensors, tapes, I.V. Prep, glucose monitor strips and other assorted supplies in my closet/pharmacy
42,120- used blood glucose monitor strips I've sent to the landfill
24 strips currently in various crevices in my car
56 strips currently in my wallet/monitor case
138 strips in the trashcan in the bathroom
2 strips in my running bag
33,476 words written in my slightly humorous (but only to the warped minds of the world) memoir on life with diabetes and sailing solo through the keys
16,534 words to write by November 30 to be a winner in the NaNoWriMo or the National Novel Writing Month
551.13 words per day to write to meet that goal
665 words written so far today, oh wait make that 674.
16 Times I've said since I committed to NaNoWriMo last night, "Oh Crap! How am I ever going to be able to pul this off?"
14 sailing books I own and have read- most of which end in hideous disaster and ruin
3 boats I own, though the largest of the fleet is 15 inches long and attached to a stand so it doesn't tip over on my desk
8 - number of feet of the boat I will build this Spring Break
2- number of children who will help me build it
22 feet of the boat graciously donated for me to use for my trip this February by the Key Lime Sailing Club, my favorite sailing club in the world
4 days I will spend sailing alone int he Florida Keys
100 nautical miles I will cover from Key Largo to Key West
480 GPS waypoints beamed to the satellites and then back to mapmytracks.com where anyone can follow along as I sail
168 messages sent to the social networking sites to update everyone of everything I am doing, seeing, hearing, smelling and eating along the way
7500 dollars that I am trying to raise to benefit the oceanic recreation branch of Insulindependence.org
765 dollars I have already raised (thank you, by the way, to all those amazing people who have helped out in this)
105 days left to raise the additional $6735
64.14 dollars to raise each and every day until I sail
872 times I have said "Oh Crap! How am I ever going to be able to pul this off?"
4696 miles to fly
63 miles to drive
5 sunsets to watch
3 manatees to talk with
82,354 skeeters to avoid
459 pictures to take
152 minutes of HD video to take so I can edit it down to the 3 minutes I am not looking like a total dork
6840 minutes I will be truly enjoying myself as I seek to take some time away form my everyday life to reflect on what diabetes has done to my life and what the fight against letting it take over has done for my character and my life
40,000 words I will have left to write to finish the memoir expressing those new revelations I am sure to have while spending 6840 minutes alone on a boat in the middle of the sea (well, ok, maybe not the middle of the sea, but far enough away form land that it will feel like the middle of the sea)
17 minutes I have just forced you to read far too many numbers
63 useless numbers that have now been stored somewhere in your brain taking up valuable space that could have been used to remember your telephone number when you move into the retirement home when you are 89
1 person you have now far too many unrelated details about that may come together to form a slightly clearer picture of (sorry Mrs. Fullenwider for ending that one with a preposition)
19 October 2010
For over a decade I have been training for triathlons and the training is very straightforward. You will need to swim, bike and run a certain distance and so you go out and practice running that distance. On race day, you know the distance to be covered, know that you have put in the time to cover it and you do. After a few good years of this, you might have the good sense to add some strength training to counter some imbalances all the forward motion puts on your body or to counter the emaciating effects of endurance sports (have you seen the top Ironmen?) Not that that was ever one of my problems, but it all makes good sense. very linear thinking on that one.
Now that I am planning on a sailing trip I had to look at training in a very different light, because in reality what I will most likely be doing is standing or sitting for six to eight hours a day holding a stick to steer a boat and then pulling a couple of lines every now and then. Compared to hours of a triathlon, it didn't seem to measure up or demand the kind of training I might put into preparing for my next race. So when I was devising a training plan I had to make sure I could do a low intensity activity for at least 8 hours. That was an easy fix. Start building low intensity long runs and rides up to about 3 hours. If I can run for 3 hours, I can probably stand for eight several days in a row. But that would not be the only skill I might need.
The other skills I am training for, I can only pray I will not have to prove. They are based more on a worst-case scenario, the "what-ifs" as Tony would say. What happens if I fall off the boat? A man overboard drill isn't exactly going to work. So I will be dragging a 50 foot line behind the boat. In the event I fall off and have my wits about me enough, I can sprint for the line, and hope to reach it in time for the boat not to have sailed away into the sunset without me. Thus I have to incorporate swim sprints into my training. In the middle of my long swim, I will add some pickups and some all out sprints to make sure my lungs can handle the speed and that my muscles are ready and efficient should I need them. So, let's say that pays off and I now am holding the line dragging off the end of a boat traveling 5 knots. Or maybe I should say, being dragged through the water at 5 knots and needing to get 50 feet ahead on the line so that I can get back on board. Looks like I should add some strength training, and let's focus on some upper body strength. And not just weights machines in a weight room that really don't relate much to real life movements. For this I have tapped into an old program I did that built muscle and the ability to use it in real life situations, P90x. I have taken some of their moves and modified it to fit into a schedule that will be built around my specific needs. So three or four times a week I am doing all sorts of pull-ups and push-ups in so many different variations it can boggle the mind.
Now, just for argument's sake (don't worry Mom, this will never actually happen) say I miss the rope. With no one to radio for help or to swing around to get me, I may need to get moving. The rules of hypothermia say you never try to swim for land. But there are rules that say you should never try to hike to the bottom of the Grand Canyon and back up in a day. That was a cinch and the other people I saw RUNNING it fared far better than me. So I am assuming those rules are stated for the average person, one who has not trained for long distance swimming. The water is warm, it will be day light and sunny or at least warm, so I should be able to swim at least two miles straight. I have built long swims into the work week. I hit one mile last Sunday which is right where I left off when I was only moderately sick. After getting really sick a good swim became 600 yards, and even those were hard to get through. At my worst, seven minutes of yoga put me on my butt in the middle of my living room panting and thinking I would need at least four hours recovery sleep for it. At times I will not be more than a half-mile offshore. At the most, probably one-and-a-half miles. So a two mile prep swim should give me enough in the reservoirs to fight a little current if needed and make it to land. And, I suppose in this case, I should pick up a survival guide to the Keys so in case I have just swam to one of the many, many uninhabited islands that are out there I will know which berries to stay away form and how to build a shelter for a night.
And of course the least essential aspect of my training but really the one that flashes before my eyes quite often, I am going to document this trip and it takes place on a boat in Florida where it is quite warm. Since I am not the most talented photographer who knows all the right angles to use to make a person look their best, I better be comfortable with myself in a bathing suit, my uniform for the week out there, in the middle of February. So I am eating clean, bypassing the extra cookie, and getting out there at 5 am to get in the extra 20 minutes on the trainer or treadmill because every bit counts and even though I may hide it well, I am still a girl who, behind a few other more important priorities, still wants to look good.
11 October 2010
I think I will have to wait another three years at least before I can steal away, I have to give some rest to my support team between trips. I don't want to ask too much to often of them. They could tire easily of my journeys, what with my husband Tony having to listen to me talk his ear off with a long litany of, for him, meaningless details, and my kids having to miss me while I am gone, and my parents who lend child watch services while Tony works so I can concentrate on sailing and not worry about the safety and happiness of the children. Maybe in three to five years I could do a Newport, R.I. to Bermuda passage; five to nine days alone with no stopping on land would be a good stepping stone. And then a TransPac, from Long Beach to Hawaii - two to three weeks alone- sounds interesting and enticing. Maybe in seven or eight years, when the kids are in high school and would be more than happy to get rid of me for a few weeks. I am sure some Type 1 Diabetics have done it before, but it would be pretty great to be the first at something. I wonder how you go about finding out if any Type 1's have done a TransPac or a Newport-Bermuda before. Do you know of any?
27 September 2010
20 September 2010
13 September 2010
Many people have asked me why I couldn't bring someone else along with me. A few were concerned for my safety, a few trying to solve the problem of finding a boat to charter from companies that seemed to outlaw solo sailors. I tell them there is an extreme difference between sailing solo and going with someone else. It's in the freedom to indulge every whim right when it hits. To go out as far from land as I want without having to consider another, to see what I want to see, to stop where I want and to drive on when I want to meet a goal. It is so unlike my life on land where it is always a compromise, when I am pulled in a million directions other than the one I truly want to go. Work pulls. Bills pull. Even having to choose a place to eat involves balancing the needs and wants of everyone else. Tony needs to eat clean foods and needs to eat in the next fifteen minutes. Shea won't eat meat. Eli will only eat foods that involve begin dipped in ketchup. I need to sit in a place that involves direct sunlight on my face and all of this has to be done for under twenty dollars. But, it is not so when you are solo. It is all me. It is simple to balance the things that I want. One opinion to sway the vote, one need to satisfy, one desire to fulfill.
It's not just about indulging my will, though. It's about testing myself without having any fallback. No one else to confer with or lean on when things go wrong, no one to brainstorm with if something breaks, no one to choose a course or to figure out where we went off course and what point on the chart that huge tower actually is. It will just be me. When the wind picks up or the boat gets grounded, I alone will have to fix it. If you want to know yourself, to truly know of what you are capable, you have to put yourself in those situations where there is a chance that you are in over your head. It is only then that you can find the outer extents of what you are capable of. If you never get to the end of your rope, how can you ever know how long it is? I hope I am able to find that point so that I can come back knowing that I can handle anything this pedestrian, land-locked life can throw my way. We will have to wait and see...
30 August 2010
07 August 2010
As I was perusing the MacGregor website, as I do on a regular basis, I noticed that Captain Mike Inmon who runs the MacGregor factory has an offer for a free DVD if you go visit the factory. Maybe it was all of the old books I had read or maybe just my imagination, but, I was always under the impression that all the boat builders were in some old wooden garage somewhere tucked away on the East Coast. So when I found out MacGregor was only a 45 minute drive from my house and that I was more than welcome to stop by at any time and learn how they made a boat out of rolls of fiberglass and resin, I put a visit on my calendar.
Last Friday I made the drive up to Newport Beach and paid a visit to Captain Mike. He greeted me with warmth like a proud papa excited to see me and show me all that his factory held. We started
05 August 2010
You know those moments in your life when you stop and look at yourself as if from the outside and realize you had become the people you had looked up to for so long. The first realization came during my first year teaching at Santa Ana High School. Being barely older than the students themselves, I often felt like I was playing dress-up wearing business suits to try to hide my youthful appearance. I had been chased out of the office a time or two because someone thought I was still a student. During the first test I gave,
I have had the great fortune of trying out a new continuous glucose monitor recently. I currently am using the one my insurance says they prefer, but, a friend of mine happens to work for another company out there producing the CGMS’s.
So, I thought I would give it a try. Being a scientist by training, I decided to run both sensors at the same time to see first hand which is more accurate and which I like more.
As I did, I was began to get the distinct impression that wearing two sensors at the same time is a lot like dating two guys at the same time (not that I speak from experience, I have rarely been lucky enough to find one guy to date, let alone two at once).
GIRL MEETS BOY
I realized that Johnny, my first CGMS, had developed a sort of relationship over the last year and a half. The first couple of numbers he spits out with any new site, I tended not to trust fully until I had confirmed them with my regular blood sugar meter.
Once a day or two has gone by and he was consistently telling the truth, I began to trust what he was telling me. I slept a little easier knowing he was on guard to wake me up if my blood sugars got a little too low or way too high at night.
I could have a conversation with him (really a series of pushed buttons) to decide on a range of acceptable numbers where he wouldn’t have to alert me. And the more I worked with him the more time I spent in that range, that range that would extend my life by at least a few months if I could stay there permanently.
Working with Johnny changed my diabetic world. I could finally sleep at night without great fear, I always had an extra set of eyes to search out wayward sugars. He was my first CGMS and I will never forget what he taught me and how he changed my life.
GIRL MEETS OTHER BOY
But then Michelle, my friend with an inside track to new technology, introduced me to Nick. And Nick was different. Instead of just dumping Johnny, I decided to try having a relationship with both at the same time.
And that’s where the trouble began.
I set up both sensors to start at the same time so neither one would have the advantage.
Just like a first date where both people are a little bit nervous and not quite themselves, sometimes with a CGMS the first few numbers can be a bit off. Then, when everyone is relaxed and comfortable in their new surroundings, we can really get into the groove of things.
So, I let both boys chill out for a day and then the testing began. With every new gadget comes new enthusiasm and the race between Nick and Johnny was no different.
I tested on my regular meter almost hourly. I wanted to see who was more accurate, who would follow my trends up and down quicker. In effect, who was the better partner.
The problem was that I couldn’t develop any sort of trust with either one. I would be 148 on my hand-held meter. Nick would say I was 120, Johnny 180. They were both off and Johnny was high.
An hour later I would be 250. Nick says 276, Johnny 221. They’re both off again but Johnny’s low now.
WHO WINS OUT??
I did find that Nick was clearly better on one thing, catching my lows. I felt a little low and tested to find out I was 56. I pulled out both guys and set them in front of my face waiting to see who would figure it out first and how long it would take.
Nick was up just 2 minutes later with a 56. Spot on. I downed some sugar to get back into the normal range and waited.
Five minutes later Johnny came back with a 85. Still not low enough to set off the alarm. Five more minutes and a 78, low enough to set off an alarm but not accurate enough to convince me on a normal day to go running for the sugar.
Johnny was a full 12 minutes late and 22 points off.
GIRL CHOOSES BOY #2
Since one of the most important reasons I got a CGMS and that I continue to deal with all the hassles and pain that come along with the technology is to catch lows I was no longer feeling, Nick clearly wins in this category. Huge points in his favor.
I decided that to give Nick a real chance I really needed to start that relationship with just him and so got rid of Johnny for a time.
One of the things I realized in this time is that Nick listened more. When you use CGMS, two to three times a day you test on a regular meter and feed that data to the CGMS.
With Johnny reading 158, if I tell him I am really 120, he just says, “That’s great. I accept that you say you are 128. But I still say 158.” There would be no change in his data.
Nick would listen immediately. I tell him I am 128 and he replies sweetly, “I had 158, but if you tell me 128 let’s meet in the middle. How about we go with 143?”
AND THEN BOY LEAVES GIRL...
Shortly after I started my relationship with Nick, I was moving and after bumping into a lot of furniture realized that we had separated. I mourned the loss, but busied myself with all that moving demands.
It wasn’t until about a week later when my life slowed down and I had time to go back to Johnny (my supply of Nick's sensors had run out) that I realized what had happened.
I had charged Johnny’s transmitter, stuck a new sensor in the gun that I use to inject the sensor under my skin to give it access to my blood stream, swiped my hip with alcohol and got ready for the pain to come.
I sat for a moment while I tried to convince myself to pull the trigger, a process that sometimes can take minutes, my self-preservation struggling with having to purposely hurting myself, and I thought back to when I started with Nick.
It was surprisingly painless. I kept waiting for the pain to set in and it never did. The sensor is by far way thinner and round, a seemingly petty detail but when you are injecting a long, metal thread into your tissue, the shape can make a huge difference in the way it rips through your flesh.
The sensor Johnny uses is rectangular. As far as piercing skin goes, rectangular tends to tear much more and cause considerably more pain.
And it wasn’t just the pain. I realized I missed Nick’s accuracy and how he could yell loud enough for me to hear him while I slept.
And how he doesn’t have to hurt me as often. The sensor he uses goes for 12-14 days (off label, of course). Johnny hurts me every 5-6 days.
And because of that I tend to take more time between when I remove one sensor and start the next. Time I need to have data and reminders. Time that, with sugars swinging more wildly, could add up to more complications and complications that strike when I am younger, really taking days or months or years off my life.
I don’t have that kind of time to waste. I need all of my days. I have stuff to do.
GIRL GETS BOY BACK
And so I have gone back to my friend Michelle like a now addicted druggie, begging for any way that I can get my next hit. I have started the paperwork to once again fight with my insurance so that they wil cover a better product even though they usually like to play with their own pre-picked companies that put out an inferior product.
Lucky for me, the people who make Nick are exceptional people. Not good customer service, although it is, but good people.
Everyone I have met who works for Nick's company are genuinely interested in helping Diabetics get good technology. They have seen how it can change a person's life and will work above and beyond to help you get what you need.
And it is never a call to some company somewhere in the world who is working just to get a paycheck. They are real people with real email addresses and real cell phone numbers who will come over to your house to let you borrow a system and show you how to use it and actually care how you are doing with it. So battle I will.
My last insurance battle took 6 months and countless letters and research and follow-up, but at least this time I know I will fight alongside some great people to get an amazing technology.
Nick, baby, I am coming to get you and I won't stop until you are back in my life.
09 July 2010
There’s a chickenish stubble, and fish belly skin
On that face, once so blazin’ and brave.
Now no one is fearing his look or his lash
Or his threats of a watery grave.
Since ol’ Captain Blackbeard shaved.
I was raised in bookstores. Not the loud, corporate, superstores of today, but the small, local, muted versions that were scattered around the towns of America a few decades ago. When I was three, my dad would bring me to an old used book store in Seal Beach, right on Main Street, with rows and rows of used books stacked to the ceiling. The owner kept the children’s books in a small room in the back that had one of those plastic children’s slides to entertain the kids. I found stacks and stacks of books to thumb through and never once took a ride on that slide. The smell of a used book, to this day, immediately brings me back to that place.
When my first bookstore closed down we migrated to another, Dodd’s Book Store in Long Beach. This one had a well defined kids section in the very back bounded by one solitary shelf. When I was a bit older my dad would drop me off in the back while he perused the rest of the store. It was here that I first met Shel. In the midst of the cacophony of color of the children’s books was a white book, plain and simple, with a great hand drawn picture of a boy with a house for a head. It was goofy enough for me to pick it up and begin to read. The first page spoke to me in a way I understood, a way that I valued, a way that I had never been spoken to before. I read the next page and then the one after until I had devoured the whole book in one sitting. When I finished, I turned it back to the front cover and ran my hand over the drawing. I had for the first time met someone who had a mind like mine, one that appreciated the bizarre and one that enjoyed twisting reality until it no longer resembled anything I had seen before, but, was still so familiar. One who found humor in simple things and one who piqued my imagination. I had found the first of a small group of people I could call kindred spirits. And in this I found comfort. I no longer was a weird freak who thought about things that weren’t taught in school and who would spend hours lying on my back staring at the clouds and considering the strangely impossible. For the first time in my young life, I had someone to ponder with, someone to bring up new questions, and someone to laugh with at the tiny peculiarities of life.
When Dodd’s went the way of all small bookstores of that era, we moved further south on Second Street to a bookstore that had the most wonderful find ever, one that, I can see now, forever shaped the direction of my life. One day as my dad and I were taking our usual walks down the street, he stopped just as we had walked past the store and said quietly, “Erin, there’s something I want to show you. Let’s go in here.” We walked quietly down the aisle until he stopped, pulled a book off the shelf, and slowly turned a few pages in. He ran his finger down the page as if he was looking for something in particular. He found it. There about two-thirds of the way down the page it said Basketball Bribery Scandals, 1947-1951 by William Roberts. My jaw dropped. That was my dad’s name next to an actual published book. A book so published that it was written down inside another book that had been published. In that moment a whole new world had opened for me. A world where a normal, everyday person could write something about what they were interested in and what had meaning for them and it could be published and people they had never met could read it and have it shape the way they thought and perceived the world. His thoughts were out there. He was part of the discourse. In that moment, I knew that it was possible for me to join in the discussion, too. I just needed to find what it was that interested me and what would hold that meaning for me.
In these bookstores, over the years, I thrived. Their rules were ones I loved. They required quiet voices and eager minds, both of which I was cursed with. I grew up a hushed girl, not ever saying too much, not once mentioning to another how I felt. I would quite often tell anyone who would listen what I thought or how I figured, but, to let it slip how I felt, was not a mistake I would make. I found out when I was a bit older that ‘slow to speak’ was a curse rather than a blessing, but, it was one that could be broken when I was left to myself with a good deal of time after any particular incident to think and let my emotions cool. When I was left alone to write, what was so hard for me to find words for to speak, became easy to dispense with if I could write it out. I felt like Rousseau when he said:
"Two things, very opposite, unite in me, and in a manner which I cannot myself conceive. My disposition is extremely ardent, my passions lively and impetuous, yet my ideas are produced slowly, with great embarrassment and after much afterthought. It might be said my heart and understanding do not belong to the same individual. A sentiment takes possession of my soul with the rapidity of lightning, but instead of illuminating, it dazzles and confounds me; I feel all, but see nothing; I am warm, but stupid; to think I must be cool. What is astonishing, my conception is clear and penetrating, if not hurried; I can make excellent impromptus at leisure, but on the instant, could never say or do anything worth notice.”
Over the years, my quiet ways began to be read by others as hardness, as a callous shell. I was someone who never let people in. It was my poker face, ‘once so blazin’ and brave.’ And then one day, just like Silverstein’s version of Captain Blackbeard, I did something completely out of character; I got the wild idea to start writing about my life as a diabetic. To take all the thoughts that had been so jumbled and pushed down for so long and begin to make sense of them and to let them out in a way that might contribute to the discussion. The experiences that are universal to people who are dealing with Diabetes, to people who are dealing with any sort of chronic diseases, and, more universally, people who deal with adversity of any kind became interesting to me and became the thing that held meaning for me.
And so I wrote. And as I wrote I could see the hard exterior begin to fall. And people were no longer afraid of me. Just like “no one is fearing his look or his lash, Or his threats of a watery grave,” I could no longer keep people at bay with my stoicism and I no longer wanted to.
Still in person I am naturally shy, but in writing I have found my voice. I have found a voice for all that I have learned through diabetes, to share with those just starting out on this journey. A voice to speak all that has built up inside my mind over the past thirteen years. A voice to speak of the friendships that last a lifetime and shape who you are and how you live. And now that I have found a voice for all that’s been running around in my head, my mind is finally free enough to take on new challenges, to actively pursue those pipe dreams that have been my escape when I wasn’t able to speak; to sail off into the sunset.
11 May 2010
The thyroid problems I have been having lately have made it so that it is very difficult to get any sleep of
29 April 2010
And while they are doing such a good job being so polite, possibly they could post a sign
22 April 2010
I was driving up to Orange County the other day and it was finally quiet in the car for a moment and I'm looking out the window round about Camp Pendelton and I notice two red cars. They start to form this
06 April 2010
30 March 2010
17 February 2010
Just to make this trip a little more challenging, as if I thought it was a bit too easy to simply manage the twenty-seven foot sailboat, Pagan Charm, and the chronic and often deadly diabetes while all alone on the ocean, I thought I would pick up another chronic disease. I shopped around and thought it might add a little challenge to have my immune system off another organ, this time the one that manages my metabolism and thus a myriad of other aspects of my body and life. I thought my immune system did a good enough job with my pancreas; so I would go with it once again, no need to reinvent the wheel with a whole new mechanism here. After weighing the options I decided on Hashimoto’s disease. Its pleasant enough, and just my thyroid. I thought it best not to off an organ that was critical to my immediate survival like a heart or lungs, though in my case the later aren’t exactly the strongest, with the Exercise-Induced Asthma and Asthmatic Bronchitis they often throw at me. And, so, I settled yesterday with the newest addition to my encyclopedia-thick medical charts, a soon-to-be totally defunct thyroid. Bring on the challenge. I'm ready.