10 Jobs that rock, the year's 10 best movies, 10 lords a' leaping: 10's an excellent list number.
Nope, I'm not going to give you the typical symptoms like thirst, peeing a lot and fatigue. I'm going to give you 10 ways you know you have diabetes--my 10 things I find myself needing to consider because I have diabetes. My list emerged after I saw a TV segment about how America is in love with lists. Magazines and books are chock-a-block with them, "10 ways to conquer your phobias," "The 7 best cities to live in," "153 things to tell your lover in bed and out," etc. The reason lists are so popular is that they make magazines and books fly off the shelves appealing to our "quick-fix" in simple-steps mentality. I will admit after seeing that report on TV, well actually during that report, I battered my brain to come up with a catchy list title for the diabetes myths book I'm working on, but alas I am still title-less. Nevertheless it did prompt my list of 10 ways I know I have diabetes.
1. I find myself screaming, "How many carbs are in that pancake? You don't know?!" My day is filled with stuff ordinary people never think about.
2. Shit, shit, shit! (and really I don't usually curse) I wasn't going to walk this morning because they predicted rain and now the sun is blazing! Should I? Shouldn't I? Do I risk going low, do I have to eat when I don't want to? Shit, shit, shit! How many other people beat themselves up for wanting to take a walk?
3. I am afflicted with a major form of terrorist torture--sleep deprivation. "I'm so tired, can't I just lie here and fall asleep?" Nope, gotta get up, go into the kitchen and stick a needle in my finger to test my blood sugar. Sunday morning replay: "I'm so sleepy, can't I just lie here just a little longer. It's only 7:30 for goodness sake." Nope, gotta get up and stick 3 needles in myself!
4. "Hmmm... that's a cute designer diabetes accessory, it would carry all my syringes, vials, test strips." God, did I really say that? Do I really have to consider that? I want out of this club, never mind the cute accessories.
5. Wiping blood off my counter, my cupboard, my shirt, yuck my food, with absolutely no abhorrence, hesitation or dismay.
6. "When's dinner? When? You sure? Really? You're sure now?"
7. Glucerna just made a cereal for diabetics -- a product just for us, hmmm...I noticed there an "us." I don't really want to have to notice there's an "us." Yet now we're worthy of marketer's attention, right up there with aspirational Lexus drivers, Tide-detergent soccer moms, Sex and the City Garnier hair-coloring singles, and boy, "those special people with diabetes."
8. How often do I really have to go to my endo? I just found a prescription to get blood tests taken July 30, 2007, oops.
9. Sneaking lunch into a noon movie, no sweat, but how will I be able to see my syringe to dose in the dark?
10. Geez, I just tested my blood sugar and I just forgot the number! Alzheimers? Dementia? Who cares, now I have to do it again!!! Geez :(
In the back of my head, always, is a constant calculator of all the things I'm tabbing, analyzing and noticing just to take care of my diabetes, it feels like a second job. It's actually a marvel and a huge disappointment that no one else seems to notice all the noticing I have to do. Except, unfortunately, you.
I've been going along these last several months nose to the grindstone working on my book, when last week a package appeared for me from the arms of my FedEx guy. I couldn't recall ordering anything and I didn't recognize the shipper. The box was one of those delightful boxes, not colorful or funny-shaped in any way, actually quite the opposite -- a perfectly medium sized, square, brown paper-wrapped box that could contain almost anything.
I opened the box and there my eyes fell on a letter telling me I was a first place winner in the Inspired by Diabetes Creative Expression Competition sponsored by Eli Lilly and the International Diabetes Federation (IDF). I had entered last year and had pretty much forgotten about it. My winning submission is a photographic treatment and a narrative about how living proudly with diabetes helps my management and brings greater joy to my life. My executive husband said, "Where's the judge's report?" "Huh?" I said. "We want to know why they picked your submission." Seemed pretty clear to me, they liked it. However to satisfy his curiosity I called and asked if there was a judge's report. "Huh?" the girl said who answered the phone at the Inspired by Diabetes office. After I explained she gave me the judging criteria: relevance to diabetes, creativity, narrative and emotionally impactful. Yup, just like I thought, they liked it but at least that satisfied the executive.
The competition received 800 entries from around the world capturing the challenges and triumphs of living with diabetes in either photographic form, essays, poetry, drawings, paintings or music. There are four Grand Prize winners and 1st, 2nd and 3rd place winners. As a first place winner a donation of $500 is being made in my name to provide scholarships for children from low-income families to attend diabetes camps and in IDF's Life for a Child Program which provides life-saving supplies to more than 1,000 children with diabetes in 17 developing nations. Winners of the U.S. competition are now being entered in the global competition, winners of which will be announced in the fall. This is an annual competition so if you are just hearing about it and want to enter next year, check out the Inspired by Diabetes web site.
But back to the box. The box that my letter of congratulations came in contained a second box submerged under a hundred puffy pink Styrofoam chips. I didn't open that box however for two days, not until my husband returned from business in Holland. I thought it nice we open it together so he could share the moment as he is my biggest fan and supporter. The evening he came home we opened the box and pulled out this trophy you see. We looked at the trophy and then looked at each other wondering what it was. I can't remember what he guessed and I thought maybe it's a double helix DNA pattern indicating stem cell research. But we really don't know. All we know is we're pleased as punch to be honored, contribute to such a worthy cause, and it woke me out of my deep and long slumber.
Sometimes it's easy to forget when you work at home alone most of the time that what you do does have an impact on others. That is until a mysterious box arrives and a letter saying local media may knock on your door to hear more about your life with diabetes.
So, trust me, sometimes you can be awakened from a sleep by a kiss, as in fairy tales, and sometimes by a trophy. I'm just happy to be reminded now and then as I sit in my quiet living room typing away that I do make some kind of difference from time to time. Now you would really make a difference to me if you could tell me what this trophy represents, any guesses?
Sound the trumpets: To us, unrecognized heroes all
I've been further reflecting on this micro-managing mania of mine these past few weeks (see post below) and realize what an awesomely complex thing it is we do every day managing our blood sugar -- and what an amazing thing it is we assume we should be able to do what our pancreas does automatically by taking pills or injections of insulin, watching what we eat and trying to use exercise as a sugar burner. If you've had diabetes a while, you know we can't make any of these decisions with the clear confidence we're always accurate. We don't know what our body is doing at any given moment: secreting stress hormones like cortisol and adrenalin which raises blood sugar because we're frightened or stressed --I imagine many times my blood sugar skyrockets from 105 to 310 merely because I'm frozen behind this computer trying to come up with my next witty line.
Then there's getting sick but you don't know it yet, as in wow, where'd that cold come from upon sneezing. Again, your blood sugar's rising unbenkownst to you. There's the female once a month hormonal surge which many women suffer: more insulin resistant a few days ahead of your period, more insulin sensitive a few days in. Yet with increasingly busy lives lots of women don't make the connection each month. How about teens going through puberty with a host of uncontrollable growth hormones? How about seniors who've been told they have to change their whole lives or die early, with miserable suffering along the way?
Then there's the food thing, the label says this packaged corn muffin has 12 grams of carbohydrates, so you shoot up "appropriately" and two hours later your blood sugar is over 300, well mine was! 12 grams? I don't think so: a liberal use of the word carbohydrate on some regulator's part? Or how about the myriad of carb calculations in King's Calorie handbook that says 1/2 cup of cole slaw has 18 grams of carb. So I shot up for it and 45 minutes later was peeling myself off the floor. And merely saying to myself, "Oh, well, another day."
There are so many factors, external and internal, that affect our blood sugar that I marvel at our innocent hubris to think we can really regulate our blood sugar with accuracy, for a lifetime no less. I'm a 36 year veteran and I think what people find hardest to understand is each day I have to do the calculating and testing all over again, and again, and again... I hear you, this is the part where you say, "Get a continuous glucose monitor already!" But it's kind of like how I feel about the pump; I don't want an attachment on my body, beside CGMs aren't perfected yet, you still have to test with your meter so what's the point? And with 7 or so checks a day I pretty well know how I'm tracking, after the fact. 7 or so checks, that's rolls off my fingers, and lips, as though it's just everyday business.
There are no answers here, just wide-eyed musing that 14 milliion patients in the U.S. have been duped -- acting like we can really control our blood sugar. I mean really, it's a whopping assumption with our current practices; seems we are both foolish and heroic at the same time. Perhaps worse, doctors and diabetes nurses and educators are under the same delusion -- that we can do this with any consistent accuracy and not fall into despair from time to time befitting the everyday acts we perform.
I think we all need a good, fresh dose of reality: Do your best, appreciate that we have some tools, recognize it's still a barbaric and hopeful process -- and hang on to that hope because as things speed along we may actually crack this nut, or make managing diabetes a more automatic, less patient-dependent, emotionally-laden, burdensome process. For all my disgruntledness, I am excited to see what will be in the diabetes management toolbox five years from now, ten years from now.
Meanwhile, I've decided to cut myself some slack, no, lots of slack, not about the discipline I bring to my management, but my expectation of how often I should get it right, lather myself with forgiveness when I don't, and recognize in this crazy process the courage, valor, strength and optimism I bring to it all -- and should be congratulated for living this way each and every day. I think you should congratulate yourself as well for the mere fact that you've chosen to take it on day after day after day.
Which will I poke a hole in next--my frenzy or my finger?
I don't know what's gotten into me lately but for the last several days I seem to be testing my blood sugar almost hourly, micro-managing with a never before gusto. If I eat what I think merits a half unit of insulin I'll test and shoot up, even if dinner is only an hour away. My post-prandial checks have shrunk from two hours to one, I can't get enough information about how everything impacts my blood sugar. I'm almost obsessive; if I were a gambler, I'd have already blown a million on black jack, if I were a drug addict I'd be stuffing packets into carved out Statues of Liberty for export, if I were a sex addict I'd be too tired to think and if I had OCD, obsessive compulsive disorder, yes, if, I'd still be washing my hands and never have them free to write another blog.
What's happening? I suspect I like knowing where I am and feeling I can keep my blood sugar within target range almost all the time. I think it all began two weeks ago when I noticed my blood sugar rising dramatically in the morning if I hadn't had any wine the night before. I joke that I use wine as part of my blood sugar management for it lowers my blood sugar as any pure alcohol will, except of course the obvious carb-loaded culprits like beer, mixed drinks (by virtue of the mixer) and liquores. Not only does a glass or two of wine with dinner inhibit my blood sugar from rising, it lowers my blood sugar (bs) overnight and sustains a lower blood glucose reading and rise the next morning that lasts from the time I awake around 7 AM to the time I might eat breakfast closer to 9 AM. I have even worked out how to accommodate the overnight drop so I don't wake at 3 AM with the shakes as my bs lowers; I make sure my glucose level is around 130 or 140 before retiring.
But, after giving up the vino for a week, just too busy and needing a clearer than usual head, I saw that the inhibition of my morning bs rise was also gone. My lovely blood sugar read of 75 upon waking was 130 an hour later and 180 two hours later without doing a bloody, single thing. So I began testing in mini increments of time to watch what was happening and began to divide my rapid acting breakfast dose in two, sometimes three injections. Typically I now take one or one and a half units upon waking ( of my 3.5 unit breakfast dose) if I'm not going to be eating breakfast for an hour or so. This blunts my rise significantly and then I'll take the other two-thirds of my dose shortly before my bowl of oatmeal. I think in hindsight this bird's eye view into what my sugar's doing almost moment to moment has been mesmerizing and made me very aware of the benefits of micro management. So much so, I began blunting rises throughout the day with more small doses and I can't seem to stop. Well, I guess until they lock me up. (So there's no confusion I continue to take my long-acting Lantus upon waking as I always have.)
Yes, you pump people are going to tell me, "Get a pump!" and I do realize I am enacting what a friend once told me is "the poor man's pump" only I've raised it to an art, must be the beggerman's pump, not just multiple injections but multiple, multiple injections. So, yes, I began to look adoringly at an ad I saw the other day for Animas pumps. They seem to have gotten behind One Touch's mini meters that come in hot colors and added the same pink and green color pump to their signature line. The pink is awfully appealing, so appealing I thought as I usually do, I'll do it when it's half the size..... Unfortunately the idea of 24/7 hook up to a machine still isn't as appealing as its color.
So, I'm wondering now how long this micro-managing phase will last. Maybe it's just a micro period in decades of diabetes doings. Surely it can't last forever, there are meals to be cooked, a house to be cleaned, work to be done. Not to mention the multitude of little red injection dots showing up on my abdomen, thighs and rear. Then again, if I notice I'm playing connect the dots with my injection pricks and come up with the face of our next President I'll let you know.