I’ve been doing a lot of flying lately. A few weeks ago I flew to the Children with Diabetes conference in Orlando. I just flew back from Tucson. While aloft a few days ago in JetBlue’s comfy seat, I took out my syringe and Humalog to dose for my snack and realized how many things I no longer do that I was once taught to do. Conversely, I thought about how many essentials I’ve learned, through either personal experience or fellow diabetics.
I don’t use alcohol swabs before injecting. I stopped that in 1986 when I moved to Tokyo for six years. At my new Japanese company clinic, the nurse, who appeared to have never seen a diabetic before, handed me a jug-size bottle of alcohol and a suitcase-size bag of fluffy cotton balls. The type that shred and stick to everything. As she handed them to me in a brown paper bag, we both shared a look of dismay. That was the day I stopped using alcohol before an injection. (I later read from an official diabetes source that it is not advisable to use alcohol swabs because they dry out your skin.)
I don’t use cooling packs for my insulin. Maybe if I were going into the Ecuadorian jungle for two weeks I’d need them, but my usual jaunts always seem to have a refrigerator at the end, and moderate enough temperatures. As for insulin overheating in the car, I don't have a car.
I don’t have special compartmentalized bags for my supplies. My syringes get disbursed throughout everything I wear and carry. A few in my pocket, purse and zipper linings. When traveling, my insulin goes in my fanny pack or purse. Right now, I’m trying out the new UltraMini meter from OneTouch. It straps right onto my fanny pack, and I can fit it in my purse. I just don’t see the need to take a big carry-all.
I don’t use new lancets each time I finger test or a new syringe each time I inject. Really, does anyone? I know the points on these instruments become dull over time and can be tough on your skin. But I must have magic fingers. They heal immediately after being punctured. Maybe I’m just this side of a Clint Eastwood character, hanging tough. I change lancets and syringes when I pay my monthly maintenance or when I notice my pain threshold lowering.
I don’t check my feet or in between my toes every time I see them. Stepping on assorted items, crumbs in my house, fallen acorns around someone’s pool or that damn pen I couldn’t find, reminds me that my feet are fine and feel every sensation. (If you have neuropathy in your feet, ignore this advice!!!).
I do not advocate you do what I do, necessarily. We must all be responsible to our own bodies and needs. I am only making the point that many of the things we may have been taught are outdated, and that our fellow PWDs (persons with diabetes) are our teachers, as much as our health care providers.
If you’re new at this diabetes game, you're probably overwhelmed with all you think you have to do. Actually, I heard once that a group of diabetes educators stopped counting diabetes tasks when they reached 150! So I'm going to lend you my "To-Dos" list. It is very small and it has served me well:
- Learn everything you can – go on websites, question your health care providers, read magazines, attend local classes or a support group. There are always tips to be had.
- Test your blood sugars frequently, including post-prandial checks (that’s two hours after you begin a meal.) and correct when necessary. This, above all else, has kept my A1cs in the 5s.
- Test before bed, I always do. If I’m low, I take a few bites of an Extend Bar, it keeps me level till morning. Before, I was a sweaty, babbling mess at 3 A.M.
- Move everyday, it makes you more insulin sensitive. I walk an hour a day. When I was sick and didn’t walk for two weeks, my sugars rose.
- HABIT-IZE. Turn tasks into habits so you can stop thinking about them. For instance, I test first thing upon waking, and I always keep my meter on my kitchen counter. No looking, no excuses.
- Before you run out of stuff you need, get more.
- Ask for help when you need it, ask people to back off when you don’t.
- Bring food to the airport because: 1) They serve next to nothing on airplanes, and 2) You won’t find anything worth buying in the airport you'll want to eat.
- Use diabetes as a way to feel proud about how much you're managing in addition to your daily life. You won't get a medal for managing diabetes, but I certainly think you deserve one.
- (Since no list can end with 9 things), "Use caution when following this advice: side effects may occur". For instance, you may just find life a little easier.
‘Friends for Life’ is Children with Diabetes' (CWD) national conference and it is aptly named. If you are six or eleven or sixteen and have diabetes you will probably come away after three days of sports, fun activities and spending time with the likes of basketball marvel, Adam Morrison, with a friend or two or three for life. As founder Jeff Hitchcock says, “Forever is how long our kids feel they’ve known each other, even if they’ve just met. Forever is how long they will remain friends, sharing something that is so deep and so emotional that their other friends often will never understand.”
If you are the parent of a child with diabetes, you will come away with an armful of medical and research updates, a head full of innovative family therapy strategies and a wallet full of contact information for your new friends. You will meet parents from near and far whose lives are remarkably like yours.
This was CWD’s 25th conference. Laura Billetdeaux, who runs the conference with Jeff, writes eloquently in the conference’s pamphlet. Nine years ago when her 8 year old son was diagnosed with diabetes she left the hospital with a binder full of information and CWD’s card in her pocket. Her first night home the binder sat on the table as she took the card out, turned on her computer and became a CWD mom. Today she is a driving force behind ‘Friends for Life.’ I myself witnessed the email flurry a few months prior to the conference as my inbox was flooded by parent's emails excited beyond belief to be coming together.
This year more than 2,000 participants from ten countries attended. My husband proudly represented the Netherlands, and there were many from Canada, the United Arab Emirates, Scandinavia and Australia. Surgeon General Ken Moritsugu, M.D. kicked off the ceremonies and top research faculty from Diabetes Research Institute of Florida and Stanford, top therapists including current American Diabetes Association President, Richard Rubin, and a number of celebrated faces like former Miss America, Nicole Johnson Baker and American Idol star, Kevin Covais, heated things up. While I thought it a crazy idea to hold a conference in Orlando in July, obviously I am not a mom. The conference ended on Friday leaving the weekend for families to head over to Disney World.
In addition to three days of speakers, the Exhibition Hall hosted nearly every major pharmaceutical and device company in diabetes. I managed to pick up three new meters, a new battery operated lancing device from Pelikan Sunthat I’m now trying out, interesting information about wave sense technology and an application for the iport. It allows you to perform MDI (multiple daily injections) through a little plastic device dramatically reducing the number of needles that actually pierce your skin. I got a free Extend bar, which I highly endorse. A few bites before sleep always keeps me from crashing overnight. And, there were baskets full of every flavor Glucotab from Tropical punch to Mango right at the registration desk. How cool is that? I got the opportunity to be tested on my forearm for the first time but it is not for me. Rubbing my arm to get the blood to the surface and subsequently pressing around the needle prick made me feel a little faint. However, for many children it is a welcome, less painful method than finger pricks.
What I was at the conference is something I rarely am in mixed company – the majority. There was blood sugar testing going on everywhere, pumped up kids pumping, buffet tables littered with carb count cards and everyone intimately knew the frustrations of, and struggles with, high and low blood sugars. Parents who worry non-stop for their children’s safety, health and future shared their agony, learning, failures and successes.
One of my favorite workshops was given by Joe Solowiejczyk, RN, MSW and in my humble opinion, unparalleled family therapist. Joe changed the surface of the ground parents walk on when he said, “When your child doesn’t test or record his blood sugar numbers, since you will have already agreed this is their responsibility, treat it like bad behavior – and administer consequences. That’s how they’ll learn to be responsible.” How contrarian to the overwhelming desire to indulge your child. However, "The more you rush in to do," Joe warned, "the less they will do." I also loved Dr. Rubin’s presentation on ‘Diabetes Overwhelmus.’ Who of us has not been there?
Here are a few other resources I can point you to that may be of interest. Diabetestrialnet.org seeks candidates for trials that they are conducting to help prevent and cure type 1 diabetes. Insulin for Life is dedicated to providing insulin to children in countries where they cannot afford it. In these countries most children die within two years of being diagnosed. And maybe you want, as I have procured, that lovely little blue pin from Unite for Diabetes. I wore it the last night of the conference when everyone was invited to have dessert with the faculty. I should also mention that everyone on the faculty I asked for an interview readily agreed and gave me their email address.
As I go through my notes over the next few days I may share more highlights but here’s the bottom line. It’s inspiring to see this forum and the families who come. On the second day of the conference on the lunch line I met the mom behind me. When I turned around to hand her the serving implement, she saw the design on my T-shirt (above), Be a diabetes warrior, not a worrier. She immediately choked up and said, “Thank you, I needed to hear that today.” Later she came over to my table in the dining hall to tell me that her son had had a series of low blood sugars through the night and she was just wasted, frustrated and sad. Yes, I thought, that's diabetes. I later heard the author of Cheating Destiny, James Hirsch, put it so succinctly, "Diabetes is numbers going up and down."
The very first day of the conference I learned something that surprised all of us in the session. The biggest predictor of a child’s A1c one year after diagnosis is how supported his or her mom feels, as a wife, a mother, a woman, a person. I like to think the sentiment on my shirt helped one mother in some small way. On a larger scale, if you know someone who has a child with diabetes tell them about the 'Friends for Life' conference and CWD. They will find a world of support, understanding, knowledge and comrades who may well last a lifetime.
Today I'm heading off to Orlando for the annual Children with Diabetes conference. From what I hear, founder Jeff Hitchcock, puts on quite an event. There's predicted to be about three thousand participants, that includes both children and their families. It's 3 days of learning from speakers about both the latest research and 'how to deal' with this sometimes devil, playtime activities for the kids, bonding for the adults with others who live similar lives, and when it all comes to a close – Disney World for those who chose to stay on an extra day. Well, there ought to be at least one benefit having diabetes this young.
Having gotten diabetes myself at 18, right in the middle of my freshman year at college – where diabetes was not a family affair since I was 600 miles away from home, I wonder if it will touch a deep chord in me, or if I'll just be moved to see so many brave children. Will let you know upon my return.
My desire in doing this work is to help people live more successfully with diabetes. For me that means you know how to: 1) manage your blood sugars through food, fitness and medicine and 2) manage the emotions of living with a chronic illness. Given my nature, I’m more drawn to the psycho-social aspect. In general, the attitude we bring to our diabetes and how we cope. I’m also drawn to how we create happiness and contentment in life and curious whether diabetes impacts our happiness quotient. I have heard now from most people that diabetes hasn’t really changed their level of happiness. Many, in fact, tell me that it has enriched their lives, impelling them to reach out to help others and appreciate their blessings. Nice huh? This morning, however, I was brought quickly out of the clouds as I took my first out-of-bed reading.
I extracted a test strip and put it in my One Touch Ultra meter, pricked my index finger and got a reading of 144. Well, 144 isn’t terrible, but it isn’t my usual 98 or 85 or 68. Surprised and perplexed I tested again. Second prick – 113. Now with two numbers so different, I did a third test – 112. OK, now I could pretty much trust the latter two tests. Before I go any further let me first address those of you saying, “What’s she complaining about, I’d be happy with 144!” Well I’m not complaining, but I want to share something worth remembering – sometimes diabetes involves managing your head, and sometimes, managing your equipment.
If your blood sugar reading seems out of line, it may not be correct. It’s worth doing a second test, or a third. When I saw 144 I first thought, hmmm, I did eat a little cheese and fruit before going to bed. Darn, I knew I should have gotten up and covered it with extra insulin but I just didn’t feel like it. Then again, would a slice of Manchego and a few strawberries really spike me 50 points? Seems unlikely. So I thought what else could have caused this? And then I realized that when the blood crept up the test strip on that first test it didn’t completely fill the strip. This is likely why I got a false read.
Your blood sugars won't always make sense. There are just too many variables going on in your body for diabetes to be a perfect science. However, the more you test the more you'll get to know how food, exercise and medicine typically affect your blood sugars and that's valuable information. Particularly when something doesn't seem right. If your numbers in general don't make sense, do what every other TV commercial today tells you to do, "Talk to your doctor." If an occasional number doesn't make sense, think what could be the cause. It may avert an action, like an extra dose of insulin, that will cause an even bigger problem. Believe me I've been there too.