A family living well with type 1 diabetes.

Posts tagged ‘educate’

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.

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!

 

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.

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.

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