Say Boo to Diabetes...

Jesse

I’m weepy, sleepless, and compulsively checking Maya’s blood sugar during the night. I think I am in mourning for a child I never met. His name was Jesse and he died months ago, but I found out only yesterday. Jesse was 13 years old, and like my daughter, was diagnosed with type one diabetes at age three. 

Two years ago, when Maya was diagnosed, I had one of those brief, random contacts that happen over the internet, with Jesse’s mother. On a sleepless night of checking blood sugars and worrying, I posted something on a diabetes website; she responded by offering the comfort and solidarity of her experience. I only even remembered this brief contact and read her article out of curiosity, because two years ago her last name made me smile. Alswager. All Swagger. She’s All Swagger, I thought to myself. Actually, she was very nice. And generous. And how can something like this happen to someone I “know”?

http://www.dlife.com/diabetes/information/daily_living/Viewpoints/Michelle_Alswager/when-worst-happens.html

I spend so much of my life force trying to dominate blood sugars, trying to help Maya live a “normal” life, trying to take this disease in stride, trying to convince myself and everyone else it’s not so bad, that there is no need for fear. I disregard the fact that children DIE from type one diabetes. Beautiful, vibrant children who are well loved and apparently healthy. Until they’re not. Children just like Maya.

Rest in peace, Jesse.

Pump Refuse

Contemplating the crazy amounts of trash generated from one infusion set change, which happens every three days. Multiply this by 100 times a year (assuming, optimistically, that there are no incidents requiring additional site changes). How many people in the world use insulin pumps? I think if we want to save our planet it is essential that someone find a cure for diabetes.

My Rant for the Day

I am so profoundly sad. The one really awesome piece of diabetes technology that I've come upon during the last 1.5 years was the Pelikan Sun lancing device. It might not sound like much to most, but I poke my daughter's finger with a needle to draw blood 10+ times a day. This (expensive) electronic device allowed her little fingers to heal after just a few weeks, and was literally painless. After the first few times using the Pelikan Sun, she stopped flinching every time I came near her. For me, it was a miracle.

I just went online to order more lancet disks and discovered that the company has closed it's doors, and the disks are no longer available. I can't stop crying, thinking about telling Maya that we have to go back to the regular lancets.

I kind of knew all along that this was too good to be true. It was a very expensive lancing system and literally NO insurance company covered it, as the alternatives are so much cheaper. But it's not fair. I know earthquakes aren't fair, cancer isn't fair, and it's not fair that children are starving all over the world. In the scheme of things THIS unfair is so trivial that I can't believe I'm still so upset about it. But I am. And I blame the ridiculous, tragic American medical system and insurance companies for making it impossible for such a wonderful piece of technology to be financially viable. (Thanks friends, for letting me vent - I know you had no choice in the matter LOL - I feel better now.)

Rocky Mountain High Blood Sugar

Today is January 2, 2010. It sounds like a date in the future, but it's my New Year's Day since yesterday didn't didn't really count. It was just a blur of cold fingers and toes, luggage, and airports, as we made our way home from Steamboat.

We've taken a few trips with the kids over the past year: New York for theater and museums, Las Vegas and the Grand Canyon, the Bahamas, four times to Florida. All places with reliable cellular service; pharmacies and EMS easily accessible. This was our first "extreme" vacation since Maya's diagnosis with type 1 diabetes 17 months ago.

We decided to take this trip at the last minute, which, thankfully, allowed me relatively LESS time to obsess. Amidst preparations for Santa's arrival and Christmas house guests; while outfitting a family of four for exposure to freezing temperatures; as we frantically replaced snowboards, bindings, and boots that the boys in the ski shop thought worthy of an antique store, I was silently consumed with everything that could possibly go wrong. (At least I HOPE it was silently! Was I AUDIBLY blathering my doubts about taking a 4-year-old with diabetes onto a freezing mountain slope, which may or may not have 3G coverage, to practice a strenuous sport for the first time? I honestly can't remember.)

Does altitude affect blood sugar? Does exposure to extremely cold temperatures affect blood sugar? How many extra carbs does a 50 pound child need during a day of skiing to keep glucose levels from plunging? Or conversely, will the adrenaline rush of skiing keep her glucose levels too high, requiring extra insulin? Which kid-friendly protein snacks are easy to take along and feed a 4-year-old, while wearing thick, insulated gloves? How do I keep test strips, Glucagon, and insulin safely between 36 and 86 degrees? After a couple of frustrating conversations with the office of our pediatric endocrinologist, I posted inquiries on FB and several diabetes sites. Surely someone had taken their diabetic child skiing and would offer up some advice. Yet on the day before our departure, I still had no useful answers to any of my questions.

Day One: Checked Lucca into snowboarding school, Ricardo headed up the mountain, and I hovered around the Kid's Club, checking blood sugars, bolusing insulin, watching Maya in her skiing lessons, amazed at how quickly she went from Level 1 in the morning to Level 2+ by mid-afternoon. I guess altitude and freezing temperatures don't drastically affect blood glucose levels; she did great all day long!

Day Two: Checked Lucca into his second day of snowboarding school, where I'm pretty sure he was already better than me. Ricardo headed up the mountain, and I again stayed close to the "Magic Carpet" lift where Maya was having her ski lessons. Fueled by yesterday's success, I felt secure enough to venture out a little. There wasn't time between blood sugar checks to snowboard, but I did manage to shop a little and tour a beautiful new ski-in, ski- out property, conveniently located right next to the Kid's Club. After 2 days of lessons, Maya was a level 3 beginning skier; Lucca had mastered the chair lift and was working on his toe edge turns. I was happy that diabetes had so far not been an issue, but feeling a little restless.

Day Three: Ricardo stayed with Maya so I could spend the afternoon on the mountain with Lucca. The last time I was on a snowboard was 10 years ago when I was pregnant with Lucca. I was a little (read alot) worried that I would spend more time on my back than on my board, but things went really well and we had a great time! Things were going so well, in fact, that we decided to try going up the mountain as a family...

Day Four: I was feeling happy and confident as we headed up the mountain; even if a little worried that I might not be able to kick my board off quickly enough to help Maya navigate her way off the chair lift for the first time. Since childhood, I had always had this vision of my adult self, with my family, on top of a mountain covered in snow; it seemed as if that scene were about to manifest. Exit lift, kick off snowboard, run to help Maya. Maya exits lift like a pro. Lucca takes off down mountain. Ricardo and Maya take off down mountain. I sit to strap my bindings to my boots, stand, fall flat on my ass. And then the panic starts. Lying there in the snow, mini-backpack full of temperature sensitive supplies beneath me, I realize that although everything had been going very well diabetes-wise, I had yet to spend a full day outdoors with them. And they had never been buried in the snow with me lying atop them as they now were. I'm not sure if it was the panic, or as Ricardo suggested, the new snow that had fallen the night before, making for a more unpredictable descent. Either way, I spent MUCH more time on my back that first run than I had the whole previous day. At the bottom, I was totally freaked out, worried about the diabetes supplies, and upset that my morning of snowboarding was over.

Ricardo and Lucca went back up the mountain, while Maya and I headed to the lounge. No sense ruining everyone's morning. So I had a couple of hours to come up with a solution before meeting the ski instructor we had hired to spend the afternoon with us. The most obvious way to keep the supplies warm was with body heat, but I just couldn't figure out the logistics. The items were just a little too long and bulky to fit safely and comfortably inside my jacket; especially if I were going to spend so much time in a prone position. Then I had another idea. Before meeting the instructor at 12:30, I activated one of those wonderful little 7 hour hand warmers Santa had put in our Christmas stockings, and threw it into the bottom of the mini-backpack.

I have no idea whether this system worked or not. Maya and I had a wonderful, if unpredictable afternoon. Greg, the ski instructor, was amazing with Maya; truly a man who has found his calling. Having him along freed me to concentrate on keeping myself in an upright position without worrying about Maya. And Maya was navigating the chairlift and the "secret" trail through the pine forest like a pro. The first time I checked her blood sugar, after only half an hour of skiing, her blood sugar measured 54. Greg was very understanding and helpful as I went through a 20 minute mountain top ritual of glucose tabs, recheck, protein snack to get Maya back to a safe level. While we waited to recheck, Maya made snow angels and I enjoyed the heavenly view from 9000 feet above sea level.

I continued to check her every half hour throughout the afternoon, just to be safe. When it looked like she might be going low, I gave her a Hershey's Kiss to suck on, and sent her off down the mountain for another half hour of flying blissfully down the mountain.

Maya was so tired that, even in her excitement to get to the hot tub, she was asleep almost before I could get her swimsuit on her. When I checked her blood sugar level as she slept, it was 467. HOW DID THAT HAPPEN?!?!? Had the extreme temperatures rendered the insulin I had given her useless? Was it a delayed adrenaline reaction? Was it the emotions of the tantrum she threw when I made her take her skis off for the day? Did the hand warmer get too hot in my backpack?

Of course, we immediately trashed the insulin vial that had gone up the mountain with us, just in case. I corrected for her high minimally, with a new vial of insulin, as I was unsure exactly what was going on; and continued to check her at half hour intervals as she slept until everything was back to normal.

Is giving a child with diabetes chocolate while she skis the ideal solution to low blood sugars? No. Did our day go exactly as planned? No. But I did have a wonderful, unforgettable afternoon with my daughter on top of a mountain, with snow falling all around us. Maya learned to love a sport that I am sure she will practice for the rest of her life. And we both saw that with a little planning and precaution, she can do ANYTHING! Life is good.

To the Tune of "Piano Man"...

"It's ten to two on a Sunday night. Blood sugars were low. I've been feeding glucose tabs like a mom possessed, hoping not to call EMS. Three rounds of corrections and it still won't budge, I am starting to freak. Then low and behold she's at 1-4-9. Yes, now we can both go to sleep..."

It's 2am and the adrenaline coursing through my system is not going to allow sleep anytime soon. Especially if Billy Joel keeps singing this ridiculous diabetic rendition of Piano Man in my head. Sparky and Halo are sleeping so soundly that their ears don't budge as I rummage through the diabetes kit yet again, searching for a new bottle of test strips. Even knowing that a generation ago it was impossible to check one's glucose levels 6 times in 50 minutes as I have just done, without really even making Maya wince; I am cursing test strips, meters, and all the rest. She is used to it by now, but I'm jaded. I'm a technology fiend. I love my iPhone and my Kindle. I'm thinking that if they can send a guy to moon, transplant a HEART, for crying out loud, I should be able to test my daughter's glucose levels without blood and without all of this paraphernalia. Something like that strip thermometer that I use on my kids' foreheads would be nice. I love that thing.

Since 1:05 I've been testing glucose levels, treating, retesting. Since the second check at 1:20, after 12 carbs of pure sugar, 15 minutes of waiting, and a LOWER glucose level than we started with, I've been envisioning ambulance crews and emergency rooms. Flashing lights and neighbors standing in their driveways wearing PJs. Strategizing. At what point do I wake Ricardo? Should I start throwing a few things into an overnight bag just in case? How cold is it outside? Do we need coats? Who will get Lucca ready for school in the morning if I'm at the hospital with Maya? Will anyone take the dogs out if I'm not here?

It's 2:57, Maya is zonked out on the sofa. The TV is blaring. Moose is singing that "jams are the jelliest" on Noggin'. Stop sitting here staring at this computer screen. Go turn off the TV. Joni Hennigan has writer's block. Go to bed.

Every Little Bit Helps...

I am writing this on behalf of my daughter, Maya, who was diagnosed with type 1 (juvenile) diabetes on July 22, 2008. It is a date no one in our family will ever forget, as it has forever divided our lives into two distinct parts: pre- and post-diabetes.
Only 5% to 10% of all diabetics are type 1. It is not known exactly how one gets the disease, but there is certainly a genetic component, and either a viral or environmental trigger which allows it to develop. This diagnosis means that the body’s own immune system attacks and destroys insulin-producing beta cells in the pancreas. To survive, people with type one diabetes must test their blood sugar level by pricking their finger for blood, and take multiple insulin injections daily.
Maya currently needs 6+ finger pricks, and 6 to 10 insulin injections each day to stay healthy. That means that I, as her mother, have poked my daughter with a needle at least 4500 times in the last 13 months. No matter how much she runs, hides, or cries, these pokes are not negotiable. The complications are just too devastating: blindness, heart attack, kidney failure, stroke, nerve damage, amputations, death.
Maya is doing very well. She does everything any 4 year old girl should do. She takes ballet and soccer, has tea parties, and is very excited to be attending pre-kindergarden at St. Gabriel’s. Her routine is different than it once was. She must be monitored very closely; every carbohydrate she eats must be counted and compensated for with insulin injections. But she is active and happy, and for that we are very, VERY grateful.
The reason I am writing is not just to inform you of our situation and how Maya is doing, but to ask for your support. On October 31st, our family will be taking part in the Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes at Mueller Lake Park in Austin. JDRF is the leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. Insulin keeps people with diabetes alive, but it is NOT a cure. It does NOT prevent any eventual, devastating complications. The good news is that a cure is within reach.
This will be an important day for Maya. It will allow us to show her that she is not alone in her fight against diabetes. Money raised on this day will help JDRF to fund the cure. Please consider supporting Team Maya either by walking with us, or making a tax-deductible charitable contribution. Some companies will match donations, so check with your employer about doubling the power of your gift.

We would love to have you walk with us on Halloween morning (It will be FUN, i promise! Costumes are optional; Maya is going as Little Red Riding Hood.) and/or show your support to Maya by making a donation - it's EASY! In the left-hand margin of my profile page there is a picture of a THERMOMETER; click on the SUPPORT ME NOW button and you're there! Thank you. Really.

Love,
Leslie