A family living well with type 1 diabetes.

Posts tagged ‘raising awareness’

Health Time Capsule

For the month of April I am participating in the WEGO Health Activist Writer’s Month Challenge. This means I shall attempt 30 straight days of blog posts–one for every day in the month of April. I’m not going to lie to you, I have my doubts that I can pull this off. In fact, I’m already off to a less than stellar start, given that I’m a day late with my first post.

But that doesn’t matter. I will give it my best shot and aim to make a quality contribution to this event rather than push for quantity that may be lacking in interest and passion. I enjoy the challenge of writing from prompts but if I’m not feeling it, I’m not going to post something that I’m not proud of or pleased with. So on that note, here’s the first prompt and my humble submission follows:

The prompt: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

Hello people of the future. I am the mother of a child with type 1 diabetes. I’m sure you have heard tell of this disease of the past–a heartbreaking, life-long sentence of finger pokes, injections, blood draws, doctor’s appointments, high and low blood sugars and the ever-present fear of devastating complications. It most often struck our young children, suddenly and without warning. But no one was safe, really. You are very fortunate to live in a time when this disease is merely a part of human history.

Type 1 diabetes was physically, emotionally and mentally exhausting for the people who lived with it every day. The demands of diabetes were at times immense. Imagine having to check your blood sugar by poking your finger and summoning a drop of blood anywhere from 8 to 12 times a day or more. Imagine having to count every carbohydrate you consume and calculate the dose of insulin needed to inject to ensure your blood sugar doesn’t shoot to the moon. Imagine having to have access to a considerable arsenal of medical paraphernalia at all times to stay healthy and alive. And imagine that no matter how diligent you work, no matter how hard you try you often don’t get it right. High and low blood sugars were a given–a part of everyday life. That’s just the nature of this beast.

I have included in this time capsule a copy of the blog I started and kept for years after my daughter’s diagnosis so that you might know more of what this disease was capable of and how it affected entire families. I have also included all of the items type 1 diabetics required to be at their disposal 24 hours a day, every day to live. They include:

  • blood glucose meter
  • blood glucose test strips
  • lancets
  • lancing device
  • carb tabs
  • blood ketone meter
  • blood ketone test strips
  • urine ketone test strips
  • insulin
  • insulin syringes
  • insulin pump
  • insulin cartridges
  • infusion sets
  • batteries
  • sharps container
  • continuous glucose monitor

We lived in an age that saw technology propel forward at a dizzying speed! It was incredibly hard to keep up with the latest technological gadgetry pertaining to communication and entertainment. One could go broke trying. Yet the diabetes devices and pharmaceuticals of our time were shamefully behind the times.

For the last 30 years of the 1900’s a cure was repeatedly promised to be “just steps away” or “no more than 5 years down the pike.” Finally, doctors stopped making these promises with such reckless abandon. People got wise … and maybe a little cynical too. The focus started to shift more toward treatment and prevention–not solely on a cure.

To be personally affected by type 1 diabetes is to experience a full range of emotions to their most extreme degree. It isn’t easy to cope at times. It is difficult to trust that those in the business of finding better treatments and cures are really committed to looking for that which will ultimately put them out of business.

But at the end of the day, it’s all that the people living with diabetes and those who love them have.

We must believe.

I must believe.

This is why I have written this with optimism and hope. You must know what a world without type 1 diabetes looks and feels like. In 100 years, surely the break-neck speed at which wireless communication advanced in our day finally found its way to the treatment and curing of chronic and deadly diseases such as diabetes.

…all the walks, marathons, fund raisers, the billions of dollars raised…

We as a species must have gotten our priorities in order by now … haven’t we?

I try.

I sit quietly with my cell phone to my ear, listening while Jenna takes instruction from her support worker on what numbers to program into her pump to give herself her morning snack bolus at school.

“Okay. You are going to eat 36 carbs, so make that number a 36. Three – six.”

“Okay. Three – six?”

“Yep.”

A few seconds pass while Jenna presses the up button on her pump. When the pump flies past her goal (the numbers tend to get away from you if you just hold the button down which can be frustrating) she presses the down button to make the number what it needs to be.

“Oops — You went past.”

“I know…”

“THERE! That’s it. Okay, now you press OK. Good. Now you are going to enter your BG. What was your BG, Jenna?”

“14.6.”

“Right. Good job. Okay. So you make that 4.4 a 14.6.”

“Okay. 14.6.”

“That’s right.” More time passes and I listen to the din of children in the background chatting and laughing while they eat their snacks as Jenna toggles up to enter her rather high pre-snack blood sugar reading into her pump. The seconds start to feel like minutes. I know Jenna also hears the other kids — her friends. I know she wants to join them.

“Oops. You went way past, Jenna. Okay. Focus, my friend.”

“Ooops!!”

I hear a sigh of frustration from my little girl. I feel my jaw muscles tighten and I take a sympathetic deep breath for her. I talk to her in my mind. I don’t want to add to the frustration by chiming in. Just stay calm, Jenna. Focus.

Then Jenna’s support worker gives further encouragement,”C’mon, Jenna. Look at your pump. You’re almost there. 14.6.” I imagine Jenna is looking back at her classmates who don’t have to jump through such tedious hoops before they eat their snacks.

Then, in frustration, Jenna blurts out, “Why don’t you just do it?”

Her good-natured support worker retorts, “Ha! Because it’s your job, missy!”

And there it is.

It’s Jenna’s job to give herself her insulin, a life-saving (and potentially lethal if overdosed) drug. She’s five years old and she must do this. She doesn’t know that her support worker isn’t allowed to even touch her pump, let alone give her insulin.

Jenna often doesn’t want to be bothered with bolusing herself for every carbohydrate containing snack or meal she eats. She has worn an insulin pump since she was two years old — far too young to administer her own insulin dose. Oh sure, she would, on occasion press the OK button to initiate the actual bolus after I or her Dad had done the programming. But Jenna has been spared the monotony of bolusing for most of her diabetic life. She has been doing her own snack boluses at school for several weeks now and overall, she has rocked it. And I know that the more she does it, the easier it will be and the faster she will get at it.

Even still, no matter how fast she gets at it, it’s not what most people have to do before taking in nourishment. And it’s always prefaced by the ubiquitous blood sugar check. There are just so many damn HOOPS! Is it any wonder I worry about what the future holds?

I remember in my nursing training, when we were covering diabetes, we were taught that during the teen years it is common for teens to rebel when it comes to the necessary minutia they must constantly carry out to stay healthy. It is so common, in fact, that the training we received in caring for teens with diabetes focused heavily on our verbal interactions with them and the psycho-social implications of this disease on this particular age group. And then, as if to punctuate this theory for me, during my corresponding practicum for this unit, I was assigned to a teen with diabetes who had been admitted with diabetic ketoacidosis and was undergoing further patient teaching as part of his recovery.

It was a long time ago, and I don’t remember much detail, but I do recall getting a sense that this teen was struggling. The struggle was just as much emotional as it was physical. He seemed sad. Perhaps even depressed. I felt so inadequate. I felt like I knew nothing of what this young person was going through. I felt ineffective and in over my head. I was only in my early twenties at the time and this diabetes deal that I was just learning about seemed like such a heavy burden for any person! For a teen? It must feel like the biggest bullshit, shitty hand anyone could ever be dealt. How on earth could I be of any help to this person? I was young, in training, and knew nothing of the ever-present, constant, worrisome, unpredictable, obtrusiveness that is diabetes.

I was a good student and I imagine I did my best with this patient and tried hard to NOT sound like I was reading from a script in my verbal exchanges with him. Honestly, I think I was relieved when my assignment changed. But the sadness that was so tangible stuck with me. I knew this young man was dealing with demons I knew nothing about.

And now here I am, the mother of a child with diabetes. I don’t need to tell you I have my fears. I work hard at keeping them in check. I try to look at my past professional experiences with diabetes not so much as warnings of what lies ahead but as wisdom, if put into proper perspective. I keep reminding myself that just because it is common enough to be taught in nursing theory classes and just because I happened to be assigned to a teenager recovering from diabetic ketoacidosis due to lack of self-care from typical teenage rebellion, doesn’t mean my daughter will do the same thing.

But I know how hard this disease can be. I know how exhausting and maddening it is. I know how much it can mess with your head. I also know how much being a teenager messes with your head. I’ve seen these two forces collide. I’ve seen what can happen. Teenage years + diabetes = the perfect storm for noncompliance (a term I now loath but is all too common in the medical world) and disaster.

I try to not worry so much about the future. I read about other people’s experiences and try to glean from them what is useful without causing myself too much unnecessary, premature aging worry. I try to stay positive. I try to have faith in myself and my amazing, strong, smart little girl. I try.

… but it’s hard sometimes.

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!

Crafty D-Crafting.

So I’ve been busy helping my girls create homemade Valentines to hand out in class next week. I blame Pinterest for this sudden blast of creative ambition. If you haven’t yet familiarized yourself with Pinterest, be forewarned, it is habit forming. As if any of us need yet another online time-suck! But the cool thing about it is you can get some really neat ideas for crafts and art projects (and a plethora of other topics).

One such project that just dazzled and amazed me was this one:

You take a picture of your child holding out his or her hand as if clutching a lolly-pop, then use some sort of photo editing software to add text and embellishments, print it off, cut slits above and below the fist and feed a lolly through! Is that not the coolest thing?!

So after I had my Valentine fun with this idea, I got to thinking — how could I make use of this idea in a D-awareness sort of way? It didn’t take long for me to come up with this:

 

I think these would be cool to make bunches of and hand out at school events during Diabetes Awareness Month in November or any time there is an opportunity to raise a little awareness. What a great way to educate people about how people with diabetes can have treats too and are not relegated to a sugar-free existence. In fact, this myth is a dangerous one that really needs to be dispelled. We know too well how important and, indeed, life-saving sugar can be to a person with type 1 diabetes.

This project is more simple than it appears. Go ahead and give it a try, whether it’s to create Valentines or awareness!

 

Revisiting Our Early Days With D

This morning as I scrolled through my Facebook feed I read a post by a fellow D-Mom, Meri Shuhmacher, who blogs over at  Our Diabetic Life. Her post explained how she has noticed that her son has only been doing blood sugar checks on two fingers — his pinky and the finger next to it —  instead of using all his fingers (Jenna insists on this as well, only it’s her two pointer fingers that get picked on mostly).

In this post Meri goes on to tell how she asked him why he is doing this. He explains that he is “creating a shield”. (This made my D-Momma heart ache a little, I confess.) Her post was accompanied by a picture of a close-up of her son’s hand with calloused little digits that looked all too familiar. It brought me back to that first year after Jenna’s diagnosis and a post I wrote on September 15, 2008, just three months after Jenna’s diagnosis, discussing this unavoidable finger fate of all people with type 1 diabetes. It also brought back the heartache that I endured around the clock during that first year. We’ve come so far…

Here is a reposting of that blog post I wrote, because sometimes it’s good to look back and see how far one has come.

*     *     *     *

A Diabetic Rite of Passage

It was inevitable. We were warned about this by our diabetes nurse in hospital when Jenna was just diagnosed. I wasn’t the least bit phased by it at the time, but now that it has happened, my heart hurts for my little girl.

The tips of Jenna’s two index fingers have developed little callouses from the constant pokes with the lancet to test her blood sugar. My two and a half year old, beautiful little girl now sports the trademark of a seasoned diabetic.

I know it isn’t that big a deal, and I am without a doubt thankful for my blessings. It could be so much worse. But still I feel that familiar feeling of sadness that I felt so acutely upon her initial diagnosis every time I push that spring loaded trigger button and squeeze out her precious blood, drop by ever-loving drop.

When Jenna was first diagnosed, I remember friends and family saying that if she had to get diabetes, better now while she is so young. I remember at the time feeling both grateful for this small mercy and profoundly saddened by it at the same time. On the one hand, yes it is true that Jenna will be spared having to change habits that had been years in the making and will never mourn the loss of her far less complicated,pre-diagnosis days. But on the other hand, how tragic that she will never know what it’s like to occasionally eat with reckless abandon, or to run out the door to play with only the clothes on her back and not have to worry about packing glucose tabs or her glucometer with her, not to mention her ever-present insulin pump strapped to her little waist.

The thought that really gave me pause was the one that popped into my head within the first 24 hours of her diagnosis; My daughter can’t survive without the help of modern medicine. Jenna is sentenced to a lifetime of being a heavy consumer of pharmaceuticals for her very survival. She will never know any different.

Jenna is becoming more curious about her diabetes. She is asking questions and making statements, looking for confirmation and reinforcement, saying things like, “I have diabetes, right? I need my pump, don’t I?” I know she is attempting to understand and deal with it all. I also know that this is just the tip of the ice burg. Over the years there will be many more of Jenna’s questions to answer and emotions to feel and they aren’t all going to be as positive and accepting as they seem to be now.

I guess in the grand scheme of things a couple of little callouses isn’t the end of the world. But to me they represent all the pain, and trials Jenna has had to overcome and everything she has yet to endure throughout her life with diabetes. And because of that my heart breaks a little everytime I look upon those precious little two year old fingers.

…but the testament they are to her strenth and courage is what makes me fill to bursting with pride.

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.

Get Your Blue On!

Today is World Diabetes Day. Today is the day we don the blue attire and raise awareness. So here it goes:

  • Diabetes currently affects 246 million people worldwide and is expected to affect 380 million by 2025.
  • More than 3 million Canadians have some form of diabetes.
  • Over 300,000 Canadians live with type 1 diabetes.
  • Canada has the sixth highest incidence rate of type 1 diabetes in children 14 years or younger in the world.
  • The incidence rate of type 1 diabetes is rising by three to five per cent in Canada; the greatest rise occurs in five to nine year olds.
  • Worldwide 70,000 children develop type 1 diabetes annually (almost 200 children a day).
  • Globally, every ten seconds two people develop diabetes.
  • Diabetes is the fourth leading cause of global death by disease.
  • Globally, every ten seconds a person dies from diabetes-related causes.
  • According to the International Diabetes Federation, each year 3.8 million deaths are attributable to diabetes. An even greater number die from cardiovascular disease made worse by diabetes-related lipid disorders and hypertension
  • Living with type 1 diabetes requires approximately 1,460 needles a year (based on four injections per day) and 2,190 finger pokes a year to test blood sugar levels.
  • The World Health Organization indicates five to ten per cent of a nation’s health budget is spent on diabetes.
  • Diabetes and its complications cost the Canadian economy more than $17.4 billion a year.

This is a disease we can’t ignore. We must take action. Do something. Donate. Write. Talk. Educate. Test in public. Wear blue. Be heard. Be seen.

The Facts

I’ll be honest, I’ve been censoring myself. I’m afraid.

I’m afraid of posting too much negativity and offending people. And it’s not just here on my blog; I’ve been censoring myself on my facebook page too. I know people don’t like to read upsetting things, especially if it doesn’t pertain to them personally, so I have been trying to avoid posting too much upsetting information and news about diabetes. But that isn’t very honest of me, is it?

Many in the DOC have been talking about something. It is the most horrible side-effect of taking subcutaneous injections or infusions of insulin: nocturnal hypoglycemia resulting in death. The victim just never wakes up the next morning. This is a terrifying phenomenon. And I’d love to say that it is also a rare phenomenon, but that just doesn’t seem to be the case–not according to the latest findings.

1 in 20. Let’s do some math: thats 10 in 200, 100 in 2000, 1000 in 20 000! Does that sound rare to you? If you had a child on insulin therapy, thereby putting your child at risk of suffering this fate, would that be acceptable to you? Would you be comfortable with that? How many is too many? At what point do we, as a society, stop and say, “Shit! Something must be done!”

I don’t want to be a Debbie-Downer. I’m actually quite a positive person. But I am also a realist. I don’t shove my head in the sand, or for that matter, in piles of glitter. It’s just not how I choose to live life. I prefer to know what I’m up against. Knowledge is power. The only way to change this statistic is to get people pissed off about it. And the only way to do that is to share the information.

For, you see, we keep losing our children. They are still dying in their sleep from nocturnal hypoglycemia. It is happening. It seems like every few weeks I learn of another family who kissed their precious child goodnight one night and never got to kiss them good morning the next day. And I’m tired of it. I’m mad. I’m heartbroken.

Admittedly, I am also afraid. I don’t live every waking hour in fear for my daughter’s life, but I do admit that not a day goes by that I don’t worry about her. That worry is pronounced at night. It’s what compels me to get up every night, sometimes more than once depending on the circumstance, to check Jenna to make sure she is safe. Those routine checks have caught countless lows and thwarted many disasters.

We can’t just sit quietly by and accept these tragic losses. We can’t just shrug and say “well, that’s the nature of the beast known as diabetes.” Tell that to the families who have buried their children.

And I can’t censor myself and pretend that everything is just fine. It isn’t. We walk a fine line every day and every night. We act as our children’s pancreas–our children’s imperfect, clumsy, inadequate pancreas. We are on-call, 24 hours a day, 7 days a week. We must be prepared at all times for the unexpected. We must be diligent.

We fight every day and every night to avoid our children becoming statistics.

We want the world to know.

We want a cure.

World Diabetes Day Postcard Exchange!

If you haven’t yet heard, there is something going on in the global Diabetes community that you really don’t want to miss. Seriously. I mean, this is sheer brilliance. But then, it comes from the creative genius of none other than Lee Ann Thill of The Butter Compartment — the very same Lee Ann Thill who came up with Diabetes Art Day — so I’m not the least bit surprised.

If you submit your mailing address to Lee Ann, she will then forward it to another PWD (Person With Diabetes) and send you the address of that person as well and then you create a postcard incorporating the World Diabetes Day blue circle in the design, then you complete a mini D-meme on the back with details such as your name, your address, your connection to diabetes, etc., then you mail it off to your recipient and that person will return the favour! The idea is to make connections with people in other parts of the world who know the D as you do. It is a way to feel less alone — to connect.

But you should really just head on over to Lee Ann’s blog and read her description. She has all the need-to-know details there for you, including her email addy.

I am really chuffed about Jenna being a part of this. I know she will be tickled to get something in the mail from someone who “gets it”. Heck, she’ll just be revved to get her own piece of mail! And if this becomes an annual event (as I’m confident it will), she will look forward to World Diabetes Day every year for such a fun reason.

Anything that helps Jenna and others with diabetes feel less alone in this, as well as gets people’s creative juices flowing is a beautiful thing.

This Day.

This day a meeting was scheduled to take place at noon — an IEP meeting to assess how the school is doing at addressing Jenna’s needs in school. Both my husband and I were present along with Jenna’s teacher and the student support teacher. The meeting went well. I was able to voice my concerns about the fact that no one in the school has been trained to give life saving glucagon to Jenna in the event of a severe hypoglycemic episode. We were informed by the public health nurse before the start of the school year that the school is not permitted to give insulin or glucagon. For reasons that are all too obvious, I have grave concerns about this policy.

The support worker understood my point – that it is imperative that someone at the school is trained to administer glucagon. He too questioned why this is the policy. In an effort to demonstrate the steps involved in giving glucagon I reached into my backpack that contains, at any given moment, my laptop, a few books and a large makeup bag with an extensive array of back up diabetes supplies inside (no makeup, whatsoever). This includes, but by no means is limited to, a glucagon kit. I always have it with me. I keep it in an old rigid eye glasses case that used to house my glasses, before my laser eye surgery. I haven’t opened the case to gaze upon the prefilled syringe and accompanying ampule of glucagon powder in months. But today I did.

This day was all about the worst-case scenario. I went into detail about what can happen during a low and when it is the appropriate time to give glucagon. I noted out loud that our glucagon was expiring soon and J and I both agreed we would have to pick another one up at the pharmacy. I then carefully placed the glass syringe and ampule back into the case, closed it and returned it to the makeup bag, grateful for another year that we didn’t have to use it.

Fast forward to this evening:

It was around 7:00pm. The girls had just had baths and were enjoying a hot chocolate before bedtime. I was working at the computer desk and J was snuggled up with the girls in the living room. We live in a new, rural townhouse development with quiet roads that are only used by locals.

It was Jenna who first noticed the black SUV sitting right in front of our town home unit.

“Why are there cars sitting outside?” We all turned to look out the living room window at the black SUV sitting, engine running and brake lights on. Another car was trying to maneuver around the SUV in an attempt to get by. It was a little strange to see a car running yet stationary in the middle of the road with the driver at the wheel, making no attempt to park or continue driving. Just sitting.

We kept our eye on the vehicle for another four or five minutes.

“What the hell is this guy doing?!” J finally said.

“Go out and ask him if he’s okay” I replied. I wasn’t thinking this guy was in any need of medical help. In all honesty, I thought maybe he just needed some directions. But then J said he could see his hand on the steering wheel was moving up and down repeatedly.

“Okay. That’s a little strange” I said. Now it starts to cross my mind that this person may need medical assistance of some kind.

J got up from the couch, headed out the door and walked around to the driver’s side of the vehicle. Another woman, a neighbour, was also there. She had been out for a walk and was compelled to check on this individual who was stopped in the middle of the road, conscious but not responding to questions.

J knocked on the driver door and started talking to the guy.

“Hey, man. You okay?”

The man startled when J knocked on the door and made a feeble attempt at eye contact.

“You okay, bud?” J repeats the question.

Nothing.

I opened the deck door and J looked up at me.

“911” was all he said.

I headed right back inside and grabbed J’s cell phone from the coffee table and made the call. J came and took the phone from me to talk to the 911 attendant while I tried to help the man and keep my girls on lock down at the same time. The neighbour woman who was there told us she was going to get her husband to help and she would be back. I was attempting to get the girls to stay inside the house while neighbour woman’s husband (who we later found out is a medical doctor) arrived, turned off the engine to the vehicle and did a quick assessment.

“He’s sweaty.”

“Maybe he is diabetic” I said. “I’ll get my daughter’s meter.” I ran inside and grabbed Jenna’s OneTouch. Back out I went and performed the check.

Three….two….one….BEEP. 1.4 mmol/l.

“SHIT!” My suspicions confirmed, my heart suddenly broke into a gallop and my legs quickly followed suit as I ran inside to grab sugar. I raced around the house trying to find glucose tabs.

“JUICE!” J shouted from outside.

Juice! Of course! The poor guy can’t hold his head up, let alone chew, for shit sake!

I ran to the fridge but J beat me there. There were three boxes of grape juice sealed together in plastic. He grabbed them and started fiddling with the plastic. I had a feeling we would need more than one box since this was a grown person we were dealing with — not a five year old little girl.

“Just take all of them.”

Back out the door to the black SUV where a man was experiencing the very thing I have been terrified of happening to my daughter for the last three and a half years — the very thing I have been losing countless hours of sleep in an effort to prevent — the very thing that haunts me and compels me to advocate for her with a passion.

And all the while my little girl with type 1 diabetes is looking on — taking in the urgency and seriousness of the situation.

We started feeding the man juice box after juice box. He was able to suck the juice up through the straw. Seven minutes later, he was still very diaphoretic and still unresponsive, his head hanging down with his chin touching his chest. Neighbour-Doctor-Man (Doc, from here on) was attempting to palpate a pulse while holding his head up so he could continue taking in juice.

“Time for another check?” I asked with a voice I didn’t recognize. My words tumbled out of my mouth all at once. The adrenaline was flowing full chisel.

“Good call” said Doc.

Doc readied a finger for me and I cued up the strip and fresh lancet.

Three…two…one….BEEP. LOW.

“He needs glucagon” I said.

“You’re right. I will take responsibility for that” Doc states, reading my mind about the legal ramifications of this intervention.

I ran back inside and got the very kit I had pulled out just hours before to demonstrate to school staff the steps involved in reconstituting and administering glucagon. I then went back out to our deck, sat down on the cold concrete and proceeded to do just that — nursing skills kicking like an old friend, there for me when I need it.

I brought Doc the syringe loaded with a full dose of reconstituted glucagon, still inserted in the vial to avoid anyone getting an accidental stick and to show Doc what he was about to administer. He revealed the man’s forearm, unable to roll his shirtsleeve up past his elbow, and gave the injection.

At one point I looked up toward my deck to see Jazmine standing with Jenna, holding her in a full embrace while Jenna cried. My heart broke knowing my smart girl was getting a harsh lesson in what could happen to her. But I was also somewhat grateful for this. Jenna has never had a bad low. Not like this. And as I mentioned recently in another post, Jenna is stoic and prefers not to invite attention on herself, especially where her diabetes is concerned. She has insisted many times in the past that she is fine when a check reveals a blood sugar between 2 and 3. I worry that Jenna could opt not to speak up when she feels symptoms and therefore risk having a bad low.

Five more minutes passed and Fire and Rescue showed up followed by the paramedics. Finally. From the time we called 911 to the time the help actually arrived was a good 20 minutes, at least. By this time the man had received the proper help from his neighbours — who just happened to be a former nurse with a type 1 diabetic child and a medical doctor — and was now conscious and responding, insisting that he was fine. His girlfriend arrived on the scene at some point and asked him why he had driven so far down the road, passing his parking spot entirely. I quietly wondered if she was ’new’. He told her, in a manner laced with slight annoyance that she would even ask that question, that he had driven too far and missed his parking spot. Clearly, he had been confused and plummeting before he finally, somehow, fortunately made the decision to put on the brakes right in front of our house. We told him he couldn’t have picked a better place to have a bad low.

I apologized for the crazy high he would no doubt suffer after all the sugar we poured into his system.

“It’s cool” he replied through chattering teeth as he shivered in his sweat drenched shirt in the cool night air.

A few more words of relief and gratitude were exchanged and we decided to give the guy some privacy and retreat back into our home to deal with the emotional fallout our girls were, no doubt, experiencing. It was a little past their bedtime but I knew we had to let them express their feelings about what they had just witnessed, especially Jenna. I was interested to know what was going on inside her head.

Once we were back inside and closed the door, Jenna wrapped herself around me and we sat together for a while. She cried some more. I asked her if that was scary for her to see what could happen if a low was really bad. She nodded. She sobbed. I assured her that we do everything possible to make sure she is safe and that we would never stop doing that. I also told her how important it is for her to tell us or her support worker at school if she is feeling low so that she never has to go through that. She hugged me tighter.

This day has been a strange culmination of a series of events that I am going to be pondering for some time to come. I do believe, now more than ever, that there are no coincidences; things don’t just happen. I have seen too many “coincidences” that are just too uncanny to be such. This day was a gift on many levels. This day has strengthened my resolve to advocate for better care in schools for our children with diabetes. This day has left me dumb-founded.

This day has also left me without glucagon and with the sobering realization that we live in an area where timely emergency medical assistance can’t always be counted on. I’ll be making a trip to the pharmacy tomorrow and picking up a real-estate magazine while I’m there.

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