I seem to keep reading that diabetes is the “Thinking Person’s” disease. Well, yes, I do think a lot, but I couldn't say that's why it picked me. Rather, if you are a mental, analytical type, I can imagine diabetes is easier to manage. It’s not hard to understand why.
Living with diabetes you're constantly collecting and examining data, experimenting, judging the results of your experiments, making calculations and making decisions. Hmmm...woke up at 8 A.M. with a blood sugar of 127. Most people would think that's just fine, but I've learned through experience that means my blood sugar is already on the rise, and if I don't stunt it now it'll be 145 within an hour. Darn, I should have taken that extra half unit of Humalog before going to sleep, I knew it. But that thought last night was led astray remembering that when I did that three days ago, my morning blood sugar was 55! But now that I am 127, hmmm...let me see ...I think I'll take just a smidge more insulin than usual. But, gee it really looks nice out, I think I'll take my walk around the park this morning. Hmmm...O.K., now, I have to increase my dose for the 127 and decrease my dose for the walk. "Hey, anyone got a calculator? I'm still a little sleepy, here."
You get it. There's the judging carb grams for every meal, the juggernaut being a restaurant meal, or a friend's cocktail party where you start eating foods you haven't eaten since college. There's the remembering to take your medicine and meter when you leave the house and ordering refills before they run out or you'll have to call the doctor, who has so many people calling him because every TV ad tells millions of people, "talk to your doctor!" My doctor's probably so busy talking to everyone, it will surely take him forever to do something as low on the totem pole as write me a prescription. And on, and on, today, tomorrow and forever.
I often think some of my friends, whom I adore, but would lovingly label as 'air heads' could never do this, never in a million years. Hmmm...this could be like the chicken and the egg question? Which came first? Are we thinkers first or do we become better thinkers living with diabetes because we are forced to? Oy, that's far too much thinking for me.
Except here's one more thought. Maybe we could use some of these brain cells for thinking about things, other than the every day mechanics of diabetes, that would also help us manage diabetes. Looking so intensely at the minutia of this everyday balancing act, we tend to lose sight of the big picture. In other words -- the "why" we're doing all this work. Isn't it so that we can live a long and relatively healthy life? Isn't it to enjoy our friends and our family? To discover our second career, watch the grandkids grow up, create the best vegetable garden on the block? It's so easy to lose sight of why we're working so hard to achieve good blood sugar numbers every day. But I think we need to remember it's to enjoy our lives; to find our mission, contribute our gifts, feel connected, loved, and present in the world. I think we need to find a way to keep that thought ever-present.
In fact, going further, I think every health care provider, whether it's your endocrinologist, physician, diabetes educator, podiatrist, opthomologist, social worker, dentist, reiki healer, I think all of them should ask us at every appointment: "What do you love to do?," "Who in your life gives you pleasure?," "What's your dream?" "O.K., great, now let's create a treatment plan that includes the answers to these questions and act on them. I'm prescribing you do 5 things you love this week, along with get more lancets and test strips."
True health is not just about controlling your blood sugar. While that's important, so is creating a full and happy life and finding your way to integrate diabetes into it. Yes, there is life outside of diabetes. Why else are we bothering? Somewhere in the middle of all the work is a road we need to carve; a life path, that offers a life you're fully engaged with and that you're happy to wake up to, along with the responsibility of learning about and managing diabetes.
That, I think, is where to aim when looking at your diabetes management, and that is truly worthy of all this non-stop thinking.
diabeteshappens, now that's attitude!
I do. It’s made by two young type 1s who’ve started a small company called diabetes happens to help enhance the lives of young diabetics. Right now, through the sale of their T-shirts, (on their site, look under 'news' and send an email) they're sponsoring a young type 1 girl or boy for a week at Chris Dudley's Basketball Camp. They'll learn how to take better care of their diabetes, and have an incredible week playing ball. Not bad for one's self-esteem, me thinks. On that note, I think my cool T-shirt is one of the cheekiest, most pride-puffing ways to say, "Yeah, I got diabetes, I got my head on straight, I’m handling it, so what?" Guess I read a lot into a T-shirt.
I saw this T-shirt at the Children with Diabetes conference this July while in the banquet hall eating dinner. A girl, who looked to be about 18, ran past my table wearing it. It was love at first sight; I had to have it. I waited for her to return to the hall, knowing she would pass my table again. When she sprinted back in, I stopped her gayly calling out, “Excuse me, I love your shirt!” She stopped, smiled broadly, and bent down for the question she knew was coming. She told me she’d gotten the shirt in the Exhibition Hall. I thanked her, gave her a thumbs up, and put ‘Exhibition Hall T-shirt’ on my Urgent Vendor Sleuthing List for the next morning.
To my disappointment there were no vendors in the Exhibition Hall selling my beloved T-shirt. Finally I learned they had been there the first day but alas, were gone. All I had to go on now to track down my shirt were two words, ‘diabetes happens.’ But I couldn't forget those words. They'd been reverberating in my head like a mantra since I'd seen them. A little internet surfing once home, brought up the the information I needed. I emailed Tyler, sent a check, and my shirt arrived shortly thereafter. Only days later I was meeting ‘A’ (see below) in the city and it was the perfect occasion to visibly wear my pride.
I felt happy from the moment the navy cotton slipped over my head. A few pairs of eyes read my chest throughout the day. No declarations from anyone, but I was grinning like a Cheshire cat. “Take that, world," I thought. "I am one proud diabetic!” If a shirt can have this affect, I’ll have to talk to Tyler about a coat, bed sheets, hmmm.......... an umbrella would be nice.
Sharing new technology
Deep in Conversation
Crossing the Brooklyn Bridge
'Paying it Forward'
On my Home Page you’ll see that my intention, (probably by early next year), is for this site to become interactive. A place where you can share your diabetes story and read other’s stories. Several months ago while I was thick in the process of interviewing people with diabetes and their loved ones, I was struck by the healing power of someone talking uninterruptedly for an hour, reflecting on what living with diabetes is like. Many of those I interviewed were able to look back and see the times they’ve lived, better and worse, with diabetes. They were able to see the progress they’ve made “taming it” and/or incorporating it into their lives. Many were able to view what they’ve learned along the way both in their ‘diabetes-life’ and ‘ordinary-life’ and how their priorities have changed. How rare it is that any of us have an hour to talk to someone who both listens and wants to hear our story.
After my interviews many people asked me if what they told me would help others? They hoped it would. They told me talking had helped them. When I first heard this it surprised me. The tenth time I heard it, I was glad. The twentieth time, I knew it bespoke a universal principle; when you feel heard you can let go of what you’re carrying, at least part of it.
As I started interviewing more people, my interviews shifted from face-to-face to over the phone. Sometimes I felt this arena was less intimate, sometimes more intimate because there were no visible judgments like facial responses. There’s an aspect of doing this work for me represented by the quote, “If a tree falls in the forest and nobody is around to hear it, does it make a sound?” I do not see the result of my work most times in any tangible way. I do not form intimate relationships with the people I talk to. But from time to time, I do make a new acquaintance or friend, and I do know from an email that I make a difference.
This happened with one young woman I interviewed in April of this year. She is 19 years old, developed type 1 at ten, she's in college and wants to be a psychologist and technology expert to help people better manage their diabetes. She reminded me of myself. Not because I had any intention to help people with their diabetes when I first got it, but she is now the age at which I got it, and her view of the world, her curiosity, maturity, sense of responsibility, and questioning mind, sounded like me at her age.
Since interviewing ‘A’ five months ago we have maintained an email correspondence and I have become a sort of mentor. It pleases me to pass on my knowledge and experience, and while I can’t speed her journey, maybe I am making the waters just a little smoother. I was tickled when earlier this month she wrote to me:
“It just came to me how much I've learned about myself and being a diabetic through your recommendation to read a couple of blogs. I'm up-to-date on technology, news, and all the current events with them. It's added a whole new level of meaning and personal understanding to diabetes --nothing that I was able to get from seeing a physician or nurse 4x/year since my dx. It's almost as if Drs only know the basics in the clinic and so much of the condition is a day-to-day battle that Drs can't be there to help out or offer input on the little things; those of us who are "in the trenches" can offer more support and medical advice (or at least hunches) than any physician. We're all walking calculators, scientists, and neurotic over-thinkers with a great sense of humor and positive view of life (because that's what we need to survive). Reading these blogs has been the best treatment, therapy, and source of knowledge I've ever found. In fact, it makes me a bit more proud to be a diabetic and whole lot less lonely. Reading about their frustrations, successes, tips, and funny stories has brought new meaning to my life, truly invaluable. I hope I will be able to keep up with them when school starts. (I read three: Diabetes Mine, Six Until Me, and aiming for grace--and of course, yours). They are a source of great inspiration and comfort. So thanks. :)
‘A’ and I had agreed when we talked back in April that we would meet during the summer since she lives less than two hours from Manhattan. This past Saturday she took a bus into town and I took the subway and, along with my husband, we met at Penn Station and spent the day touring around and getting to know each other. Over lunch I showed her the new lancing device I’m testing and she sampled it, agreeing how painless it is. We took the water ferry over to Fulton Ferry Landing under the Brooklyn Bridge. Then proceeded to walk back into town over the bridge since this is a must on my tour itinerary. While crossing the bridge I told her I thought my sugar was dropping. She offered her meter to test, but I said I’d wait another 10 minutes and keep tabs on how I felt. Shortly thereafter, on Chambers Street, we sat on the steps surrounded by majestic buildings (I realized I should have more lows and stop to enjoy the grandeur of Manhattan more) and I tested. Sure enough, 58. She and I both took some Sweet Tarts and rested for a few minutes. My husband later commented on the ease with which she and I shared meters and strips, but this is our special club after all. Revived, we scooted up to the Mac store in Soho, where she bumped into her best friend from high school who was in town from Michigan. We then meandered into Greenwich Village, and sampled some outrageous sorbet/ice cream – yes two diabetics who once on line said to each other, “I’ll just get a taste.” We are kindred spirits in the responsibility camp. Finally, my husband and I escorted her back to the bus to return home.
In the end I was pleased I could show her the city, and more pleased when discovering that she doesn’t have any friends with diabetes and is questioning herself as to, “Whom do I tell? How much do I tell?,” that I could be a sounding board. Yet, I felt just a little niggling feeling. I had wanted to do more for her, share more, reach out more, impact her more. Yes, this niggling was about me. My husband would say (probably did say) it is my longing, my wanting to connect with others at a deep level, almost hooking into them as if Captain Hook’s hook would come out from my chest and grab onto yours.
The next day there was a flurry of new emails, pictures exchanged, and there it was -- the questions I expected I would hear while we were together roaming the city. 'A' asked in her thank you email, “Is diabetes a factor in why you don't have kids? I was surprised how involved your husband was with your treatment. How did that happen? I'm just curious because it had to have been you and diabetes for a number of years before you met him and I can't imagine I would be very willing to allow another to wedge himself into the relationship. Do you feel guilty that he has extra worries about you that he wouldn't have about a healthy spouse? Only in the last month or so have I publicly proclaimed anything about blood sugars--e.g. announcing that I'm low or high. I'm still not sure I like being so public. It seems more like an excuse for my behavior, a crutch that I'm letting other people know about rather than just sucking it up and dealing with it. Then again, it's kind of nice to let them know about it, just so it's not so foreign.” And finally, “I loved our conversation re: the .5 vs .25 units of insulin at lunch. That, there, was worth the trip!”
So, I got my confirmation that yes, I may be making some small difference. Maybe that’s part of my healing, that I get to help someone by sharing my knowledge and experience, just as sharing our stories are healing for each of us. It also says something else on my Home Page, that “Each one must teach one.” I believe this is true in life, and, the greatest gift you can give to another diabetic. Remarkably, it’s a gift we give not just to another, but to ourselves. If that's selfish, I really don't mind, since it profits everyone. But you already know that, I'm sure.
I've generally been a "good" person. I try to do those ten things on Dalai Lama's list. You know, be kind, not hurt others, let people know you love them, hear a tree when it's falling even it you're not there. In addition, there are my hard-wired Virgoan traits: I'm responsible, loyal, a good friend and hard worker.
When I got diabetes at 18, after the "Why me?" stage passed, and the denial stage passed, I got back up on my feet and learned to manage this damn illness. Not that it was easy or simple, but it's happened over days and weeks, months and years. I changed some behaviors, like eating smaller portions and more recently practically vacuumed carbs out of my diet. I've made walking a daily ritual and caught up on the newest insulins that have made this so much easier to manage. I do well enough that these past few years my A1cs are consistently in the 5s, and my routine is integrated, quite well, into my life. Amend that, my routine is my life, but I don't mind, it works for me.
So here's the thing: even with all this hard work, commitment, dedication and do-goodedness, every once in a while there's a bump in the road. And I resent the hell out of it. "I've been good," I'm screaming inside. "How can you do this to me!" "Is this how you repay me!? I don't deserve this!!!" Don't ask me who I'm talking to, some great Kahuna out there.
I am totally brought up short when something bad happens due to my diabetes. And something seems to happen every few years. Once again I have to face and deal with the fact that I don't know what's coming around the corner no matter what I do. And, I resent that the road I've worked so hard to make so smooth, has potholes underneath.
Getting a second frozen shoulder six years ago, the year I was getting married, that required surgery and a three day hospital stay, was a pothole. Discovering, after 32 years of annual eye exams, with my eye doctor always astonished at the health of my eyes, that I have a slow-growing cataract, deflated me. Getting an official diagnosis a day before I left for Europe a few years ago, that I'd lost 25% of my hearing, devastated me. That wasn't a pothole, so much as a crater. And I cried and cried in the Amsterdam train depot while telling my husband. It's not widely written about, but hearing loss is associated with diabetes just like vision problems. The small blood vessels in the ear canal are just as susceptible to damage as those behind your eyes. O.K, buck up I said to myself looking around at all these tall blonde people eating herring. Life goes on. I'll go on. And I righted myself and continued my march valiantly forward.
Last week another pothole opened. Oddly this one's not due to a complication of diabetes. No, this one's from trying to make my diabetes better. After so many years of taking injections, I, like most, have developed a significant amount of scar tissue where I inject. Shots now hurt somewhat, and I take between 4 and 7 injections a day to keep tight control. Last year I'd heard of a device called iport and when I saw it recently, I decided to try it. It's a small, round plastic disc and like a pump, it has a little plastic tube that sits inside you through which to deliver insulin. Unlike a pump, it's not attached to an insulin cartridge, so you stick your syringe through it's little rubber stopper, plunge, and the insulin goes through the little plastic tube and into your body. So now, instead of feeling the prick of 12 to 21 shots in three days, I only feel one prick, when I insert the iport. Hallalujah, I thought the first day. The iport didn't hurt going in, although I'd been told it could, (an inserter is planned to be on the market early next year) and I barely noticed I was wearing it all three days. Wow, I told my husband, I kind of feel proud. When he looked at me quizzically, I said, "Well, I'm an early adopter. I'm doing something pro-active for myself, taking a new step." Then I discovered I spoke too soon.
The second iport I put in hurt. When the insulin didn't leak out I dismissed the first reason it might hurt, that there was a crimp in the plastic tube. Yet, that spot where the iport tube sat inside me felt sore over the entire three days. My initial feverous joy of being free from injections and pain burst into a million little pieces. I caved; this pothole turned into a crater. I held back tears for the final two days of wearing it.
After 35 years of living with diabetes, trying to make the daily tasks, which I've accepted and perform (because I'm a good person) religiously, a little easier, that scar tissue that's built up over those decades of injections conspired with the iport to hurt and humiliate me. (Yes, I could have removed it, but I'm good, you remember, responsible, committed) So, now, if I have 30 years of scar tissue, mostly in the same place, my abdomen, which is where I'd likely stick this thing so I can see and reach the little rubber stopper to inject, how can I benefit from this new device that could be really helpful? I'm pissed. But more than pissed, deeper than pissed, I feel penalized, tricked, cheated, saddened and maddened. I feel utterly betrayed, disappointed, and sorry for myself for all those years I've been so diligent taking my injections. Of course, this isn't rational thinking, but what emotional tornado is? Why do bad things happen when I'm being so good?
I told a friend who's used iport now for almost a year, and who has mentored me through this, "You know, P...., I realize I'm just exhausted. This experience has taken so much of my energy: to get the iports, worry through the insurance procedure, gear up for a possibly painful insertion, contact the company twice when a rep never called me, to have to now track when to insert and remove the iport, to watch for tube crimping and see that my insulin really gets in, to wonder where everything I wear will fall against it." Of course, I think this is about my being exhausted in the larger sense: from all these days upon days of ordering and keeping track of all my supplies, remembering to change my lancets and syringes, the daily food, exercise and insulin calculations, we could go on forever. What also dawned on me was that this experience killed my hope; that I could have made something better for myself, something easier and less painful with this disease. And I deserve my hope because I've waded through the river with diabetes for so long, and stayed afloat. And I deserve this device to work for me because I'm a good person.
Five days later I learned something else. When I began this piece I was thick in the middle of this emotional storm. Now it has passed. I have a new iport on. It didn't hurt going in, I don't feel it now, and I'm enjoying the freedom it gives me from painful injections. I learned, for the umpteenth time, that everything changes -- problems, circumstances, feelings, thoughts. You just have to ride it out, whatever it is, and know it too will change. And while bad things happen to good people, I have my hope back that more good things happen than bad.
I’m still hot on the Pelikan Sun (mentioned below) lancing device, and how lucky right now to have a lancing device that’s less painful. For after a truckload of new supplies hit my house yesterday: syringes, lancets, test strips and a new-for-me Freestyle Flash, last night and this morning I conducted a meter comparison test. And that meant a lot of finger-sticks.
I lined these 5 meters up to see if/how the results would vary. Pictured are the One Touch Ultra 2, Freestyle Flash, Freestyle Lite, One Touch UltraMini, and One Touch Ultra. One Touches seems to bond together like a family within a small variation. Last night, the One Touch Ultra 2 gave me a 90, Ultra Mini, 96, and One Touch Ultra, 91. The Freestyle Flash came in at 100, and Freestyle Lite, 105. A 15-point outside spread, not terrible. Yet what was somewhat disconcerting was when I got the Freestyle Lite (newest model, no coding) at the Children with Diabetes conference last month, I ran this comparison test there several times. Each time the Freestyle Lite came in 30 points higher than the One Touches. What was it doing now at only 15 points higher?
This morning before breakfast I tested again in the same order, the One Touches gave me: 98, 96 and 85 (I have to say here, though, I believe the 85 was caused by the One Touch Ultra being the last to feed off one poor, squeezed drop of blood, where some intestinal fluid likely got mixed in.) Meanwhile, the Freestyle Flash reported, 105, and the Freestyle Lite, 113. Eliminating the 85 test result, the outside spread was 17 points. Pretty consistent with last night.
I did a second test round only minutes later this morning. I was just going to re-test the One Touch Ultra, since it had given me that 85, but I couldn't help myself, and retested all the meters. This time I did the One Touch Ultra first -- beside wanting to see if that 85 was an aberration, I didn’t want it to feel left out. Boo hoo. It came back with 100. The One Touch Ultra 2, a 105 and the UltraMini, a 101. The Freestyle Flash was 109. I had no more strips left, unfortunately, for the Freestyle Lite so it was left out of the line-up. Again, pretty consistent with my two other findings, yet now I was newly amazed that only four minutes later my blood sugar was already on the rise.
So what have I learned? For me, the three different meters from One Touch all gave different numbers yet not far apart. The two meters from Freestyle similarly gave different numbers, but not far apart from each other. Yet, they were 10-15 points higher than One Touch. And in Florida the Freestyle Lite was consistently 30 points higher than the One Touch family. I could say that the 30 point high was the meter itself experiencing the stress of being in Orlando in July! However, I think that's probably not the answer. Unfortunately, I have no answers, just lots of questions.
If this meter comparison interests you, and you have a bunch of meters at home, see for yourself. However, you will likely be only more confused and frustrated when you finish, since the question then will be, "Which one do I trust and follow?" As a type 1 diabetic, I will take an injection of insulin to correct down if let's say mid-afternoon I'm over 140, and eat fast-acting carb to correct up if I'm under 50. Yet, if my blood sugar's really 110 and not 140, I wouldn't do anything, but smile. If it's really 80 instead of 50, my smile would be all the wider.
I spent some time this morning searching other blogs for meter comparisons and found a great batch of comments that made me feel many have experienced my angst: http://sixuntilme.com/blog1/2007/05/meter_meter_averageeater.html
This is from a great site I just found, SixUntil Me.
In the end, I agree with what many commented. Use one meter that seems to correspond to your A1cs and symptoms, and expect no meter is entirely accurate.
Still, I am both horrified and saddened that since testing is the best weapon in our arsenal to keep blood sugars in target range and complications at bay, we cannot even rely on the accuracy of our meters. So I want to ask someone -- why is there no universal standard, and where is the quality control in the meter industry?
I remember someone once telling me, “I don’t participate in trials for new medicines because you never know….but devices, that’s another story!” So, here’s my story. I’m testing a new lancing device that’s already on the market in Australia and coming to market here in the fall.
The device is made by Pelikan Technologies. I saw it exhibited at the Children with Diabetes conference I recently attended. It’s a great lancing device for anyone, and especially for children because it truly is less painful. Here’s the deal: it has 30 different depth settings, holds a cartridge of 50 lancets so you always get a fresh one and never prick your finger accidentally, but the real deal-maker is -- when you press the button to fire the lancet, you feel the lancet come out and just softly brush against your finger. A second later, it enters with the softest touch. It’s a little hard to explain, but amazing.
Now dialing a typical lancing device from ‘1’ to ‘2’ to ‘3’ seems so primitive. I’ve also learned using this device, that different fingers vary in skin textures, from rough to smooth, and benefit from a different depth setting. From my pinky to my thumb, I change the depth setting for each finger from 0.4, 0.6, 0.7, 0.8 to 0.9. 0.9 on my pinky would hurt like heck. 0.4 on my thumb wouldn't penetrate the skin. So once you work out the right depth setting for each finger, you're assured minimal pain and the amount of blood you need.
While I ordinarily change my lancets with the coming of each new moon, having them change automatically in the machine both combats my laziness, and really does help minimize pain. And of course, the idea is less pain promotes more testing.
This first digital, battery-operated, lancing device also results in less skin damage, minimal bleeding and faster healing of bruises. All around, this device is heads above anything else I’ve ever seen or tried. Its cool gold color is nice too.
The company is at work building in a meter to make the Pelikan Sun a one stop-shop. I’m glad to hear that because the only disadvantage this lancing device offers me right now is it’s bigger than I really want to carry around.
I’m sold on this company’s ethics too. As they say on their web site, “All profits from the sale of Diacare products, including the Pelikan Sun, go towards Diabetes Australia-NSW’s research, education, awareness and advocacy programs.” Personally, in today's global world of diabetes research, I don’t particularly care who gets there first.