A family living well with type 1 diabetes.

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Six.

Six years.

In two days it will be six years since diabetes became an official, uninvited member of our family. It has gone from being that thing that casts a dark, sad cloud over so much to being an omnipresent aspect of life that swings like a pendulum between almost–but not quite–forgotten, or all too there. 

Somehow, somewhere, at some point along the way, diabetes has woven itself completely into our family’s fabric.  We have found a way to see past it more often than not.  We only look directly at it and acknowledge its presence when we have to.  And then only for as long as is necessary to force it to submit by dousing it with insulin or pelting it with fast acting carbs.  All other times, we just go through the motions of blood sugar checks, boluses and carb counts.

Without speaking, we project what might happen in the next hour.  Or two. Or six.  And we do it almost subconsciously. Like breathing, but not quite.

It’s no longer a raw wound.  It seldom brings me to tears anymore. It isn’t that horrible hated monster it once was.

We have grown. Lived. THRIVED. Mostly in spite of diabetes.  But, at times because of it.

We would be different people today if diabetes were not a part of our lives.

Six years.

Three-quarters of her life.

Still hard to look at pictures from before D, though.

Oh. And I’m going grey.

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Diabetes Art Day

Art is a journey, much like life is. It is this journey that is important; the growth and learning that results from the experience of creating, or doing. We put far too much emphasis on the end product in art. We critique and judge. We decide if we like or don’t like art. We forget to honour the journey and the message.

There aren’t many better ways to open up a therapeutic dialogue with my kids than over a blank piece of paper with an assembly of assorted sketch pencils, paints, paint brushes and glue before us and the energy of creative potential that is so palpable. We sit together and discuss our approach to a certain topic. I reassure my girls, who are still learning to not be inhibited by what the world might think, that whatever they create–it is theirs, and it is good.

Yesterday when we sat down at our dining room table with our artistic accoutrements before us, we talked about our own personal feelings about diabetes and how we might translate that on paper using colour, images and even words. My oldest daughter, Jazmine, is a very literate 9 year old. She has ambitions of becoming a writer. Not surprisingly, she chose to employ words to express herself:

Image“The Rain of Diabetes” by Jazmine Roberts

My youngest daughter, Jenna, who has lived with diabetes since she was two years old, felt it important to convey how life with diabetes isn’t all bad. She spoke to me about how she feels it should be celebrated because of how strong it makes a person. She mentioned that people should have Diabetes Parties. I found this quite interesting and I told her how I loved the idea of a Diabetes Party. She proceeded to draw this:

Image“The Blue Surprise” by Jenna Roberts

I had been trying to plan and visualize what I would create for several days before sitting down to actually create. It was becoming a source of stress for me. This should have been a red flag to me that I was over-thinking it. But it didn’t occur to me until I saw a message from Lee Ann on her “Diabetes Art Day” Facebook page that might as well have been addressed to me, specifically. It basically said to not plan it and over-think it, but just sit down and DO it. I am paraphrasing, but that is the much needed message I took from it. So, that is how I approached things. I knew I wanted to incorporate several mediums. I have enjoyed working with collage and watercolour pencils lately. Of course, one of my favourite mediums is pencil, so I was sure to employ that. What I created was something that, to me, speaks of the dark, isolation one may feel while experiencing a low blood sugar. I can’t claim to know what that feels like; however, I have witnessed many low blood sugars and have talked endlessly with Jenna about how she feels. When I showed Jenna where I was going with this, her face lit up as she examined my partially finished piece. She looked at me as though she felt validated. “Yes, Mom! That is how I feel!” She then added her own spin on it when she said, “…and it’s like the tree has diabetes too!” I don’t know why I made the tree like something out of L.O.T.R.–it just seemed to happen. I didn’t want the tree to be menacing–more empathetic. That is just what Jenna picked up on:

Image“Low” by Sherry Roberts

Just as an aside, this morning Jenna requested a party on her diaversary, June 9th. This year marks 5 years with diabetes. I think a party is an absolute must.

Please visit the Diabetes Art Day site to see countless more amazing creations from the global Diabetes online Community. We are a creative bunch, indeed.

What if…

I’ve actually had docs tell me I’m being too paranoid about my daughter’s blood sugar control. One doc looked at my blood sugar check schedule, which included at least one–and often more checks in the night to ensure my daughter is safe. He scoffed, shook his head and said, “I know I couldn’t function on this kind of sleep schedule…” This doc insists my daughter will awaken if she goes too low. This doc assured me that “dead-in-bed” syndrome only occurs in type 1 teens who are rebelling and experimenting with alcohol.

Two things:

  1. As a member of the online diabetes community it pains me to say that I know this is NOT true.
  2. If he actually thinks this (false) information is a comfort to me he is crazy.

Earlier this summer I missed a night check somehow, likely because sometimes the natural need for adequate sleep wins out. I slept thru the alarm I had set. Jenna was 8 (144) at last check prior to my going to bed–a comfortable number with not much insulin on board to cause concern of an impending low. This may have contributed to my missing the alarm–a false sense of being on top of things. She awoke the next morning a very sick little girl. Her blood sugar was mid 20′s (450-ish) and she had moderate ketones in her blood–the most she has had since diagnosis 4 years earlier. She was nauseous, had abdominal cramps and generally felt terrible. This is a very dangerous situation for a person with type 1 diabetes. Ketoacidosis can occur very quickly and just a fast become life-threatening.

To say I felt guilt doesn’t even come close to conveying how I felt that morning.Image

Today I am devastated to read of a seven year old boy with type 1 diabetes who never woke up this morning. He was diagnosed at 2 years of age–the same age Jenna was at diagnosis. My heart hurts for this family. My heart hurts for the unthinkable “what if” I can’t help pondering–if only for one heart-wrenching, horrifying moment.

Type 1 diabetes is a vicious killer. Type 1 diabetes is a sneaky, unpredictable SOB. Type 1 diabetes deserves funding for research to find a cure.

Stephen Richert: A Man Living Vertical.

A few months back I “met” Steve Richert on Twitter. He commented on a link I posted–completely non-D related–and we got chatting. He introduced himself and told me about what he was planning to embark upon come the new year. I was instantly intrigued and impressed.

Steve is an avid rock climber who has started an initiative called Project 365. He plans to climb for 365 straight days in some of the most extreme environments our continent has to offer. With the help of his wife, Stefanie, he will document the journey.

Oh! And he also happens to have type 1 diabetes.

People like Steve fascinate and inspire me and I knew I had to keep in touch with him and watch his progress while he attempted to achieve his goal. As much as I want to believe in a cure for Jenna, the reality is that she may very well have to live with this disease for the rest of her life. I certainly don’t want her to sacrifice a single dream or ambition using diabetes as an excuse. Fortunately, there is no shortage of inspiring people in the diabetes online community and Steve is a shining example of just such inspiration. He is living proof that a person can do anything, be anything and live a rich and fulfilling life with type 1 diabetes. His determination and courage give me hope.

In mid January Steve and Stef began their 365 day mission. In between climbs Steve found time to answer a few questions I had for him and I am thrilled to share his words with you here:

* * * * *

Sherry: How long have you had diabetes? Would you mind sharing your diagnosis story?

Steve: 13 years as of January 16 2012. I was away from home, living in alaska at age 16. I came down with what felt like the flu and it just kept getting worse instead of better. Blurry vision, thirst, headaches, loss of coordination and I was constantly fatigued. After about a month of this I wound up having seizures and being hospitalized with encephalitis–which resulted in a concurrent diagnosis of type 1 diabetes. There were two days that I completely don’t remember and I just woke up in the ICU. I had been under an incredible amount of stress and it was all pretty disorienting–but once I got out of the hospital, it felt so good to not feel like complete shit, that I welcomed the application of insulin and the whole learning process that went with it.

Sherry: What prompted you to decide to embark upon this incredibly ambitious mission of 365 straight days of climbing in some of the most extreme terrain North America has to offer while managing your type 1 diabetes and what do you aspire to accomplish?

Steve: I want to empower people with type 1 diabetes and other chronic illnesses to think big. To not let a medical condition constrain their dreams–also I want to demonstrate the benefit of being active and eating a fresh, high quality, plant based diet and connecting with nature. Doing more with less (drugs/meds, “stuff”) is both possible and beneficial.

Sherry: You and your wife have taken some risks to make this adventure possible. You have sold almost all of your possessions and are using your savings to help finance this mission. Can you explain what emotions you experienced while you went through the process of preparing for this year long journey? Was there ever a “HOLY SH–! Are we crazy?!” moment? Any epiphanies?

Steve: Risk is an inherent part of life. Living in a conventional setting with an unfulfilled dream in our heart was deemed to be a bigger risk–so we decided to at least try. I think failure and struggle are vital components of human development that we as a society have managed to avoid to our great detriment. I am ok with failing or having to pick up the pieces if the money runs out. You definitely have to go all in and commit fully or else what’s the point? No one lives forever–so do what you can, while you are able!

Preparation has basically been DAYS spent on the computer, wishing I could just go out and climb. Trying to make other people care about this project. The most emotionally taxing part of this has been leaving our home and realizing that if this fails we literally have no home to go back to. Leaving our cat has been SO painful because in our absence he hasn’t adjusted to his new home and has run away several times for a week at a clip with no contact with anyone. It may sound weird but he is my little friend, not just a pet. I have never been a very social person and he (we call him Mr. Kitty or Mr. Bear) has always been there for me when people let me down and it rips my heart out knowing tht he is scared and feeling abandoned. I try not to dwell on that part.

Holy Shit moments? Every single day. Especially at night when your mind just goes to those dark places.

Epiphanies…yes…the little things, the small steps–those are where we succeed or fail ultimately in the big picture of things.

Sherry: You are on injections (pens?). Have you ever been on or considered using an insulin pump?

Steve: I am on pens–never been on a pump. I am not against the idea of a pump but I am used to taking shots and I don’t mind it. I am a fan of simplicity and the fact that it is a lot more affordable. I was offered a sponsorship deal from a pump company that would have cost me 400 bucks a month…needless to say, insulin pens started looking a lot better! I am sure that there are advantages to both–I am just more clued in to the advantages of my system because that’s what I know.

Sherry: As a substitute pancreas myself, I have a keen interest on the specifics of how you plan to manage all that diabetes will, no doubt, throw at you while you are dangling from a cliff in the wilderness. What challenges does having type 1 diabetes present while you are climbing and how do you plan to address them?

Steve: Type 1’s biggest challenge is the variability of insulin sensitivity that goes with varying levels of activity. Also, not being able to carbo-load before a big day of climbing can make it a bit tougher to recover AFTER that big day. Otherwise, you just have to be consistent and check a lot. I find that the quality of the foods I eat makes a HUGE difference in the consistency of my sugar. Low GI foods like Clif Bar Builders Bars and raw almonds keep me from spiking or tanking and give me energy when I really need to pour it on. Basically though I have found that everything is based on cause and effect. If you want to be all ready to roll in the morning, you have to take care of your meal the night before. Consistency is key.

I have redefined my relationship with food as part of being a type 1 diabetic–which is something I see others struggle with or refuse to do. That is their choice, but I can tell you without a doubt that I could not do what I do if I was unwilling to view food as fuel rather than entertainment or comfort. That is part of what I want to communicate to others throughout this project. YOU have the power–no, it’s not easy, but it’s POSSIBLE and you will be better off for taking control of yourself!

Sherry: Although I have never rock climbed before, I would think that it takes a well-planned, methodical, controlled approach–much like managing diabetes does. And yet the unexpected can, and indeed does happen with diabetes. Can the same be said of rock climbing? Do you feel the mental and emotional coping skills you have learned from climbing reflect or enhance your approach to managing your diabetes and vice versa?

Steve: Yes. Climbing is not about some RedBull commercial with a generic heavy metal riff playing in the background. Climbing is about self control, discipline and simplicity. That is the same approach that I have chosen in managing my diabetes and the two are inextricably linked, in my mind. Also, both have risks as a very real part of the equation–which is great motivation not to be lax.

Sherry: What suppplies do you pack with you while you are climbing and how do you tote them?

Steve: I usually take a pack of glucose tabs but I have never opened them. I think I have eaten 2 of them in 13 years. I avoid shooting fast acting insulin when I am climbing–I let my activity lower my blood sugar, which keeps the hypos reasonable and treatable with normal snacks. I carry a couple Clif Builder Bars and my meter–depending on the length of the climb, I may leave the meter down at the base of the climb. If it is one long route that will be an all day affair, then I will bring a small backpack that has enough food to last for several days, as well as my meter. When I was guiding, I would always have plenty of Clif bars to give to my clients because I always pack significantly more than I would eat in a given day.

Sherry: The physical demands of this project will, no doubt, be a challenge to manage and your diet will, undoubtedly, require as much careful consideration as your insulin dosing. Can you explain a little about what you will be eating throughout the year?

Steve: As much whole foods as possible. This means food whose identity can be discerned through simply looking at it, not reading a list of ingredients. Fresh, Raw (when possible). Predominately vegetable matter.

Breakfast: usually raw almonds and some form of oatmeal. Possibly part of a Builder Bar too or a little cheese. Eggs with mushrooms are an option too since eggs in their shell will keep for a good amount of time if you are careful with them. Onions, spinach, work great as add-ins.

Lunch: raw nuts, seeds, a salad (yes greens keep without refrigeration if you are creative!) carrots, crackers, Builder Bar, tuna fish with mustard or sardines, trail mix.

Dinner: salad, veggie stir fry (cabbage, broccoli, sprouts, peanuts, hot sauce, black beans) lentils, whole wheat pasta, raw almonds, sweet potatoes, garlic…and so on.

Fruits are always good too–apples and pears keep magnificently, strawberries…etc.

A few miscellaneous items I have recently explored are kale chips, almond butter and nori–and OH MY GOODNESS I am officially addicted. Sadly I am not going to be able to afford that stuff on a consisten basis, but it is super healthy and GOOD when I earn a treat!

Sherry: The publicity you are receiving by doing this gives you a great opportunity to send a message to other people with diabetes or other chronic diseases. What is the message you want to send?

Steve: YOU have the power to be healthy. Diabetes is a challenge but it does not have to stop you from being healthy. It is our responsibility to avoid adopting a victim mentality.

In the words of Captain Sub-text, “ A little suffering is good for you. If you embrace it instead of bitching, you will be better off for it!”

* * * * *

Thank you, Steve, for sharing your story with me. You ROCK! (pardon the pun. ;))

For more information about Project 365 please visit the website here. You can also check out (and “like”) Steve’s Facebook page where there are many more mind blowing pictures to view!

Verio Cool.

I have had the pleasure of trying out a new meter from OneTouch® — The Verio™IQ. And what a sweet little meter it is.

Upon first glance, it looks a lot like an iPod! Very sleek. Very user friendly, as any meter should be. The display is big, bold and beautiful. Jenna was impressed, as was I. Jenna enjoyed tagging whether her reading was before or after eating. This is the feature that helps the meter determine if there are any trends worth noting; another cool aspect of this sassy little meter! The only puzzler was what to do if the reading is neither. Perhaps a third option to opt out of tagging a reading would be beneficial.

Update: Evidently, there is a way to opt out of tagging a reading. You simply press the go back arrow to return to the results screen or hold down the arrow to go to the main menu. Helps to read the instructions thoroughly. :)

The next feature we liked was how little blood is required to conduct the test and the fact that you can slurp up your tiny sample from either the right or the left of the strip! This proved helpful in preventing test strip waste which is something that makes me crazy. At nearly a buck a pop, the last thing we want is an error indicating an insufficient blood sample. Sometimes this happens when Jenna is doing her own checks. Perhaps she is rushing, being the busy little bee that she is. But Jenna had no problem obtaining an adequate sample with the Verio IQ™.

This meter touts SmartScan™ Technology. It scans each sample 500 times to ensure precise results. I have no idea how it does this in just 3 short seconds but WOW! This is HUGE. We rely on meter accuracy to ensure Jenna is getting the right amount of insulin, and we all know how important proper insulin dosing is.

Besides its accuracy, the feature that really got me revved was the light. This baby has a built in light to help see in the dark during nighttime testing. I didn’t have to hold a flashlight between my teeth! And I could hang up my miner’s hat too ;)

One final note, this meter doesn’t use batteries. It charges via a plug, just like a mobile phone or MP3 player! Very cool.

Over all, I like this meter, Jenna likes this meter and I think its future is as bright as its colour, LCD display.

Disclosure: The OneTouch® Verio™IQ meter was supplied to me at no charge for evaluation purposes by LifeScan Canada Ltd. I was not paid for my opinion. The opinions expressed here are my own (and to some extent, Jenna’s). I was not required by LifeScan Canada Ltd. to mention this product on my blog but it is because I am an active diabetes blogger that I was contacted and given the opportunity to try this product gratis.

Hot Zone

It’s been lurking around the school since the start of the new year, picking kids off one by one. It started in Jenna’s classroom when one of her classmates let fly with a sudden barf-blitz that left one girl’s backpack covered, rendering it trash, and forced the rest of the class to the complete opposite side of the classroom to avoid the infectious, noxious nastiness.

I was bracing myself for Jenna’s first bout of a full-on case of gastroenteritis in all it’s abhorred glory after that day. I can honestly say I felt fear. The idea of my wee, insulin-dependent kindergartener throwing up for two or three days straight, unable to retain even the smallest amounts of solid, carbohydrate-providing food is enough to send me into a near panic state. This is mostly because I realize that a virus like that could easily land Jenna in hospital.

But days passed since the unfortunate “classroom yak-attack”, then weeks. Other kids came down with symptoms in the school here and there, but I started to feel comforted by the likelihood that Jenna had escaped the dreaded bug.

And then it happened again.

This time it was my older daughter’s classroom which is right across the hall from Jenna’s kinder class. I felt the all too familiar cold chill of fear when another Mom told me “Did you hear? So-and-so threw up in class today.”

“Oh NO! REALLY?!!” I’m certain my response seemed an over-reaction to this mom who appeared slightly taken aback by my concern, no doubt oblivious to the implications a stomach flu could have in my household.

I felt thrust back into the hot zone once more. I frequently detected the faint smell of emesis for days after, every time I entered the school. Perhaps it was my imagination … I don’t know. I wanted to keep my girls home until the danger had passed. But I didn’t. I wanted to follow the custodian around to ensure he was doing a good job of cleaning and disinfecting every bathroom stall, tap and door knob. But I didn’t do that either. Instead, I did what all parents do; I sent my kids to school per usual with extra reminders to wash their hands. What else can a parent do?

Then Jazmine vomited this past Friday afternoon after school. Game on.

I spent this weekend wrangling my daughter’s waist long hair out of the line of fire while she proceeded to involuntarily evacuate her stomach of all solid food taken, over and over and over again. For 36 straight hours she was unable to hold any sustenance down. Luckily, she was able to retain enough fluids to stay adequately hydrated.

But the real challenge was keeping the pathogen confined and away from Jenna. Luckily, we had no “misses”; Jaz hit the toilet or the bucket every time. But even still, it’s a messy ordeal that is not easily contained.

So, on Saturday Jenna spent the day with her daddy having lunch out at a restaurant then a movie and a trip to the book store, while Jazmine enjoyed a Gravol-induced nap and I cleaned house like a sleep deprived woman on a mission. Each bathroom was scrubbed and disinfected with a bleach solution, each counter top sanitized, each floor surface mopped. I even had time to run the vacuum and do some hot water loads of sheets and towels with a splash of bleach for good measure.

Jaz was finally able to retain food again mid-morning on Sunday. She is back to her usual, sweet self. Have we once more dodged a bullet and staved off what is no doubt, at some point, the inevitable? I don’t know. I’m almost afraid of getting too cocky at this point. Don’t want to tempt the fates. Jenna could still succumb to this vile bug, in spite of all our efforts.

But in the meantime, I’ve armed myself by boning up on my diabetes sick day management skills. I printed off the procedures for sick day management* and mini-glucagon dosing* from the BC Children’s Hospital website*. Even though I’ve read through these procedures several times in the past, a little refresher course never hurts. And now I feel better prepared to take on the dreaded barf bug while juggling diabetes if it is, in fact, in the cards for us to do so. Knowledge is power. And as lacking as our healthcare system can be at times, it is comforting to know it’s there for us should we need it.

Stay healthy, and if you can’t — stay knowledgeable. It just might save you a trip to acute care.

*Please note that these are Canadian procedures where we measure blood sugar in mmol/L, instead of the American measure of mg/dL. Also, this should in no way be considered medical advice. If you or your child is ill or experiencing flu symptoms you should consult your healthcare provider or diabetes medical team for assistance.

What’s Funny?

Let’s dispel a few myths, shall we?:

  • Your eyes won’t stay that way if you cross them. You may turn a few stomachs doing that, but your eyes will return to their normal position again, rest assured.
  • You won’t get a sty in your eye if you pee on the road, but you may just get arrested so don’t, okay? (I can’t be the only person who’s mom shared that little gem, can I?)
  • And finally, you can’t — CAN NOT! — get diabetes from eating too much sugar. Seriously.

You see, type 1 diabetes is an autoimmune disease. The body’s own immune system has made a mistake and turned on the cells in the pancreas that produce insulin, killing them and leaving their owner without a means to process the glucose ingested from food.  So people can stop with the inaccurate “jokes” regarding the eating of large quantities of sugar and the onset of diabetes.

Now, I know what some of you might be thinking: What’s the big deal?! It’s a joke! Can’t some people take a JOKE?! Why are you touchy people ruining it for the rest of us?!

Well, first of all, if your life’s happiness hinges upon feeling free to use false and misleading information to make fun of people with chronic illness , you have far worse things to concern you. Like the fact that your sense of humour SUCKS, just for starters.

See, the thing is, I love a good, leg-slapper just as much as the next person. In fact, there is a good case to be made for those of us facing serious life challenges and our increased ability to find the humour in them. But the joke has to be funny. And here’s why these sorts of jokes aren’t funny. First, a joke has to ring true. People have to be able to relate to it. If the joke were about a person with diabetes having to nip off to the loo frequently, well, that could easily happen. A rip-roarin’ bout of hyperglycemia can leave a person with a raging case of polyuria. Or if the joke were about a person with diabetes unknowingly walking around with used test strips stuck to her person, again — could happen. In fact, I’m living proof that it does happen. And it’s funny when it happens! Hell, you should see some of the places I have found used test strips! Uh … on second thought …

But a lame joke that perpetuates a misconception that leads the public to believe that people with diabetes are responsible for getting this disease, I have to draw the line there. There’s nothing funny about people asking you if you gave your child candy as a baby causing her to get diabetes. There’s nothing funny about people judging you or your child to be deserving of a horrible, all consuming, potentially life-shortening disease like diabetes.

Right now I am the one absorbing the emotionally taxing blows of insensitive, uninformed comments because Jenna is so young. But one day she will be the one facing the full impact of jokes and comments made by an ignorant, overly judgemental society. It will become her battle as well to set straight the uninformed among us. And it’s important that she does. If society mistakenly believes that people with diabetes are reaping what they have sown, then the public’s financial support to fund research for better treatments and a cure will be affected by this inaccurate depiction. And we can’t afford to lose donations toward a cure. This disease is on the rise. No one asks for diabetes.

Oh. And for those who are screaming “TYPE 2, you over sensitive Mom of a kid with diabetes! We are laughing at people with type 2 diabetes!!” — first of all, shame on you. Secondly, you should know that there are plenty of fit, slim, otherwise healthy people  out there with type 2 diabetes. Sure, it’s more common among people who are overweight, but it isn’t an exclusive club. There is a genetic predisposition at play and other factors which are not fully understood. And so what if being overweight does contribute to the development of type 2 diabetes in some people? The majority of us in the western world are above our ideal body weight!  Being above your ideal body weight increases your chances of developing other diseases too, like cancer. Would we say of an overweight woman battling breast cancer that she had it coming? How the hell do we know what factors caused someone’s disease? What does it say of our society if we believe those among us fighting disease are merely lying in the beds we made? Are we really that heartless and judgemental? What makes us think we are immune from suffering chronic illness and can therefore make disparaging remarks about those that do?

Be informed. Set people straight. Don’t be afraid to be the only one not laughing at the inappropriate,  callous and misleading “joke”. You never know when this disease — whatever type — will hit too close to home and you’ll wish you’d been a little more sensitive and a lot less judgemental.

D-Feast Friday From Jenna To You.

I haven’t posted a D-Feast Friday post in a long, long time.  I haven’t posted anything in quite a spell. I have been giving my undivided attention to my family these past few weeks. A recent move closer to town (read: closer to EMS) occupied much of our time and energy at the start of December. Then there was the whole Christmas to-do … life was just too intense for me to find time to focus on collecting and composing thoughts worthy of your valuable reading time.

So I took a little hiatus.

But it was only a matter of time before I found my way back to my laptop to share little snippets of life – our life – with diabetes tagging along.

Jenna requested this snack last night before she went to bed. Actually, to be completely honest, she was hoping for a bedtime snack, likely on account of heading for a scary low from a straight up bolus for supper that, in hind-sight, should have been a combo. But when we realized this, she was already tucked into bed with heavy lids. Carb tabs to the rescue instead.

This is what her palate fancied:

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What we have here is two toasted slices of whole grain bread with a skiff of butter, natural peanut butter and thinly sliced, organic, gala apple. When she requested it, I told her it was too late for a snack (unaware of the low that was lurking in the wings) and that it sounded like an excellent choice for breakfast the next morning. Reluctantly, Jenna agreed to wait until morning to have this considerably healthy and, I must admit, tasty treat. I ate it for lunch myself today! It really is lovely.

I don’t know where Jenna got the inspiration for it. Perhaps it was the few times I have offered her and her sister a half apple with peanut butter for a snack that gave her the idea. But I’m more than a little impressed with her choices with regards to both the satisfying taste and the nutritional merits of the dish.

I figure you can tweak the recipe any way you like; you might want to omit the butter or substitute the peanut butter for another nut or seed butter, or use another kind of apple, or even go with a pear if you prefer! If you are celiac, you can go with a gluten free bread for toasting. However you want to alter the recipe to suit your needs and palate, feel free. Enjoy!

Oh. And Happy New Year. I’ve missed you. :)

Diabetes and Doctors.

I’ve recently found myself in the upsetting position of having to defend the 8 to 12 blood sugar checks we perform daily on Jenna to a pediatrician. It was during a routine check up. An a1c drawn at this appointment revealed pretty darn good control at 7.8. Still, this medical professional felt that checking Jenna up to 12 times a day on occasion, was excessive.

Jenna does not wear a CGM. For those who read my blog but don’t live with diabetes daily, first – thank you. You give a damn. You want to learn more. That’s so awesome! Second – a CGM (continuous glucose monitor) is a device that has a sensor which is inserted under the skin and stays in place for several days, measuring blood glucose in interstitial fluid many times throughout the day and night. It is a great piece of technology, but it has a ways to go before it is a consistently accurate and reliable way to monitor blood sugar. We are waiting until the technology improves before investing money and subjecting Jenna to yet another jab and another device to have to wear. In the meantime, regular blood sugar checks are necessary to ensure Jenna is safe. This means we get up every night, sometimes more than once depending on the circumstances, to perform blood sugar checks.

You see, each reading is merely a snapshot. She may be 5.8 at 10:00pm – an excellent reading, but what you may not know is that she is headed down fast because of the insulin on board from that bedtime snack she had or the extra hard playtime when she ran for an hour solid earlier in the day! By midnight she could be 2.1! The only way to know is to check.

I left the doctor’s office that day feeling so many emotions – anger, frustration, annoyance – but the worst, the absolute worst was the self-doubt and shame I felt. I actually let this doc get to me! I questioned whether we were doing the absolute best we could be doing for our little girl. He made me feel like we were setting Jenna up for failure with our diligence. How would she be able to pick up the baton when it was time to hand it over to her? This question was posed to me as I defended our nightly blood sugar checks to ensure her safety. He stated that if it were him, he wouldn’t be able to function on the broken sleep we were getting.

Never mind that I made the valid point that she will not just suddenly, one day, be charged with her entire diabetes management – that it will be a gradual process that has already begun that won’t overwhelm her. No, he felt we were setting the bar too high and needed to pull back. He then went on to assure me that Jenna would awaken if she were to go too low. Absolutely, for sure. Without question.

Now, the whole idea of checking and monitoring is to avoid highs and lows. AVOID them! Not to let them happen and deal with the low when it materializes in whatever frightening form that may take, i.e. seizure, or worse. I DO NOT want to have to administer glucagon, call the paramedics and pray that my daughter survives, all because I needed my sleep. We have survived the past three and a half years getting up in the night to ensure Jenna is safe. We have adapted, just as countless other parents have done. And I happen to know that not all people awaken when their blood sugar drops too low. Tragedies happen only too often. How does this doctor not know this?

I was a broken woman when he was finished with me – as broken as Jenna’s pancreas. I never want to feel that way again. And I never, ever want another parent of a child with diabetes to feel that way.

Being a pancreas to a child who’s own pancreas is busted is NOT easy. It is a constant, demanding, ever-changing, exhausting, unruly, scary, unpredictable, 24/7 job. No breaks – no holidays. Any parent who does this – any person with diabetes who does this – deserves respect and support – NOT criticism.

I recently read a quote written by another mom of a child with diabetes that sums it up beautifully:

…I have learned that it is not just about the needles and the numbers –it is about the constant burden of having to perform a critical body function externally . Think for a minute about having to tell your heart when to beat…and how fast. Imagine what it would feel like to know if you slipped for a moment what the consequenc es would be. It can be a heavy weight to bear at times.

Just for the record, I did tell this doc that, with all due respect, I was the parent of a child with diabetes – not him. But I did let what he said hit too close to my heart and I shouldn’t have. It took me days to recover from it. But with the help of my husband, who was furious at this doctor for making me feel so inept, and the reassurance of members of the diabetes online community who validated my diligence and questioned this doc’s knowledge of type 1 diabetes, I bounced back stronger than before. I felt reassured that I am doing the very best I can to keep my daughter safe and healthy and I shouldn’t have to defend what I do to ensure that goal is met every single day and night, especially to someone who doesn’t know what it is like to be a satellite pancreas – medical degree or not!

To the doctors out there: I urge you to tread carefully when you are sitting across from the parent of a child with type 1 diabetes, or a PWD. I know your intentions are good, but unless you have a child with type 1 diabetes, or you have diabetes yourself, you can’t possibly know what it is like to do what we do. Be positive, supportive and understanding. But above all, please be humble. Know that each diabetic person’s disease is as unique as a fingerprint and the approach to managing it can be just as varied and individualized. We are all doing the best we can. It’s not easy and some days are harder than others. You are merely one member of a team in the management of this disease; you are not the definitive expert, as hard as that may be for some of you to accept. Also, a little praise goes a long way. A pat on the back for the 7.8 a1c would have been nice.

Luckily, we had a check up appointment with Jenna’s endocrinologist two days later and received the positive reinforcement and validation we so desperately needed. We always have a positive experience when we see Jenna’s endocrinologist – who, by the way, feels that we are, in no way, paranoid or checking Jenna too much. As always, she applauded our efforts and praised our approach. I am so grateful for her.

Tech Support Needed!

One of the many perks of pumping insulin with the Animas Onetouch ® Ping has been the software that comes with it. I used to take Jenna’s pump and meter and snuggle up to my PC, cup of tea in hand, download the data from the past two or three weeks, print off a couple of charts and then pour over the numbers looking for trends. This would help me to determine whether changes to Jenna’s settings were needed. This was especially useful to do the night before an endo appointment. Jenna’s endocrinologist appreciated receiving our package of printed out data. She could easily glance at Jenna’s blood sugars and advise us accordingly.

And then we moved. Our PC is no longer in service and we have jumped ship to Mac. The software that accompanies the Animas Onetouch ® Ping isn’t compatible with the operating system on my Macbook.

And our endo appointment is creeping up fast as well as a pediatrician appointment. I know I could resume logging all of Jenna’s numbers and carb counts on paper, as well as the bolus amounts and the kind of bolus. But MAN! That kind of sucks. Logging numbers is a royal pain in the keister. Ask any PWD and they’ll tell you, logging is a loathsome task. And what makes it so abhorred is the inability to stick to it. It is already a challenge to do all the absolutely necessary steps involved with maintaining this disease — adding this extra step is like asking someone to balance their cheque book. Several times a day. Every. Single. Day.

I was diligent about logging when Jenna was first diagnosed and was on multiple daily injections. But that was before I got a taste of the good life with diabetes software keeping impeccable records for me and laying it all out in beautiful, colourful charts and graphs. Now I always start with good intentions and a brand spanking new pretty journal (the theory being that if the journal is new and pretty, I’ll stick to my logging) but I derail rather quickly, sometimes as early as later the same day. Sad. I know.

I miss my software and all it’s fancy charts and graphs. I miss being able to see trends and make the necessary adjustments to pump settings. I feel like I’ve been trying to manage Jenna’s diabetes with one arm tied behind my back.

I’ve spoken to our Animas rep about it and he seems to think there is a way. But when I call Animas and ask, I’m told that there is a compatibility problem with the ezMax software and Mac operating systems. I’ve been put on a list of people that need to be informed as soon as the problem is resolved, but that was months ago. I have heard nothing.

And my withdrawl is escalating.

Jenna’s numbers have been pretty crazy lately. I sense that some changes need to be made but I have no way of seeing the trends to make these changes. I am getting my pen and paper ready because I know what must be done. It starts with an L and rhymes with dog. But oh, how I loath using such primitive devices. I’m far better with a hard drive, a dongle (what screwball came up with that name, by the way?) and a printer.

I could really use some advice or information on how I can install the ezMax software on either my Macbook or my desktop, if it’s possible at all. Has anyone used this software successfully on their Mac? If so, please tell me how you did it. PLEASE?

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