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.

Letting Go

There are a few significant events in every parent’s journey that mark a time of pride and excitement; first words spoken, first steps, the first time you say goodbye to your child at the babysitter, preschool, kindergarten… These are events worth documenting, photographing and celebrating.

But some of these events are also pretty darn anxiety laden. It isn’t easy for parents — often (but not always) moms — to say goodbye to our babies and trust their care to someone else. But we must, and we do. Sometimes it doesn’t feel natural, but it’s a part of life, right? …to say goodbye and help our children make that slow journey toward ever increasing independence.

Jenna has begun her school journey. She is attending full time kindergarten and, in all honesty, she is absolutely loving it. She no longer has to feel left behind watching her big sister walk into the school every morning. She is a big kid now, in real school. She is ready.

Sure, she had some anxiety at first. She was shy, withdrawn and a little lost. But her teacher, Ms. C, handled it beautifully and in no time Jenna warmed up to her.

Of course, the big pink elephant standing right smack-dab in the middle of the room is…

DIABETES.

Without question Jenna’s diabetes has been a tricky one to juggle. There are a few factors that make it so:

  • Jenna is far from completely independent with her diabetes management. (Of course she is, she’s five.)
  • Jenna is often unaware of her lows until she is well below what constitutes a low.
  • Jenna is stoic. This scares the ever-loving stuffing out of me as she is not apt to speak up if she is having a problem, preferring to avoid the spotlight and be “just like all the other kids.”
  • No staff member at the school is legally allowed to administer either insulin OR glucagon to a child with type 1 diabetes in our province.
  • A single teacher in a busy kindergarten class of 20 young children, all equally deserving of attention, cannot possibly be expected to do her job AND watch a child with type 1 diabetes for the often subtle signs and symptoms of hypo or hyperglycemia, let alone react to a low or high in the appropriate way. (I have two children and trust me – this is no easy task at the best of times.)
  • Since no staff are able to give glucagon, it is absolutely vital that Jenna receive timely intervention in the event of a low to avoid a dire situation.

Given these obstacles, it was crucial that we obtain government funding for an additional support staff in the classroom to assist Jenna with her care.

The trouble was, we had to actually prove that she really does need this assistance.

Jenna’s pediatrician likely anticipated this because I received a letter from him this summer stating that her medical condition placed her in the special category that makes her eligible for this added support. That letter turned out to be the means to a fabulous end and the way it played out was beautiful poetry to this D-Mom who felt all kinds of panic wondering why I actually had to prove my daughter’s need for help to ensure her safety while in school. To me it was as clear as the nose on my face. But this is the system we have and this is the way things are done.

This summer I met twice with the public health nurse who gathered all the pertinent data regarding Jenna’s medical needs and her care. She drafted a care plan outlining, to the utmost specificity, how Jenna’s diabetes management is to be conducted in school: If A, then B. Then follow up with C fifteen minutes later. However, if D, then E…

It is clear, precise and to be followed to the nth.

This care plan was presented at a meeting we — members of the school staff, the public health nurse and I — had last week in preparation for Jenna’s school start this past Monday. This meeting was to provide diabetes training to the staff and give a chance for the concerns of everyone involved to be voiced. The vice principle was also present. She is the lady with pull. She, along with the letter from Jenna’s pediatrician, was key in achieving the ideal outcome.

When the meeting was winding down, I noticed her eyes were wide as she digested the full scope of what she had learned. She realized that this was a life and death situation which would require constant diligence and monitoring beyond what one teacher would be capable of. She promptly excused herself from the meeting stating she had some phone calls to make in her office, assuring us that she would be back.

Staff members who had been pulling for us since last spring when this whole process got started gave me subtle, reassuring pats on the back. They knew her and knew that this reaction bode well for us.

I whispered to Jenna’s teacher “What does this mean?”

“It’s a very good sign. She realizes now what we are dealing with. She can make this happen for us” she whispered back then gave me a wink.

It was all I could do to maintain my composure. All the anxiety and fears I had been living with regarding Jenna’s start in the public school system that dated all the way back to her diagnosis were daring to subside.

The vice principle returned not 15 minutes later and announced that Jenna would have an assistant assigned to her in the class room for four hours everyday.

And it was like  letting go of something I had been clutching with a death grip for three and a half years.

It was validation. They understood how precarious my child’s health is — the fine line we walk.

So now Jenna is attending classes everyday and looking every inch the big girl, school kid that she is in her new school clothes with her giant backpack on her back. I still go in to the school to give her boluses for her snack and her lunch — that won’t change until Jenna is old enough to do so on her own with supervision — and, until today, I had been spending my days in that little room off her class room to be available in case there were any questions. But my presence there has become less necessary as her worker, who is so awesome, has become more confident and capable. I must remain in town (we live rurally, almost a twenty minute drive from the school) to bolus and in case there is a problem — a stubborn high, a dislodged infusion site, etc. — but I am quickly phasing out my constant presence there.

And now it’s my turn to feel lost — proud and relieved, but lost, nonetheless. Suddenly I am struggling to fill some free time and it’s a foreign feeling. I am trusting others to ensure my child’s safety, as capable as they are. I won’t deny it, I’ve had some moments of anxiety sneak up and put me in a head-lock. But I’ll be okay. If there is one thing I am, it’s tough. That is undeniable. I’ve been able to wrestle free from the anxiety when it does ambush me. I just remember that there are good people at that school who really care about my daughter and her wellbeing. They want her to be safe too.

Another milestone, complicated by diabetes, has been reached. Now there’s just the dreaded teen years and college to worry about.

Just keep blogging, Sherry — just keep blogging…

I Don’t Get It.

I am an advocate for people with diabetes. I am one because I have a child with type 1 diabetes. I did not choose to become one, but rather was compelled to become one after my daughter was diagnosed just a few weeks past her second birthday. It is my passion now.

Type 1 diabetes isn’t just a disease for which there is no cure. It is also a disease plagued by misinformation, stereotypes, stigma and blame. Many people still believe that you can get type 1 diabetes by eating too much sugar. The majority of people with type 1 diabetes will tell you that they have had to battle these misconceptions and stereotypes at some point in their lives, or have been the victim of judgement and ridicule. And many parents of children with diabetes have found themselves in situations where they have had to explain to the ignorant among us that they did not, in fact, indulge their child in too much candy or let them play video games rather that go outside for exercise, causing their pancreases to punish them for an unhealthy lifestyle because of poor parenting.

It gets old. And it can, at times, be hurtful. But it is what it is. Ignorance.

Now, as a nurse, long before I had children, I have had under my direct care, elderly patients who have battled type 1 diabetes for many years. They beat the odds and survived into old age; for, to be diagnosed in the 1920’s or 30’s with this disease likely meant a considerably shorter life expectancy than an individual diagnosed today. But they often didn’t come away unscathed by this ruthless disease. I have had amputees under my care. I have assisted a blind woman with her activities of daily living, her sight stolen by diabetic retinopathy. I have dressed toes, blackened and necrotic due to advanced peripheral vascular disease secondary to type 1 diabetes. I have arranged transport every week for a patient with diabetes for their weekly course of renal dialysis. And I have terminated that transport when the same patient made his decision to stop renal dialysis because it had become too exhausting to endure, knowing that this decision meant he would not live much longer.

I have seen far too much to be afforded the comfort of ignorance and denial about what my little girl could face at some point in her future.

My beautiful Jenna.

I also know that today, because of better therapies to treat this disease, the chances of our children with diabetes having to endure these horrific complications are reduced significantly. But they are still a risk. My little girl has spent the past three and a half years with a medic alert bracelet on her wee wrist; three and a half years of this disease waging war on every organ and system in her body. Three and a half years isn’t a long time, but when you consider that she has had diabetes for 70% of her life already and when she is twenty years old, this disease will have been chipping away at her health and longevity for over 92% of her life, it doesn’t take a nurse to realize her chances of developing complications are not minuscule, even with diligence and modern medicine working for her.

From my perspective, there is nothing funny about the complications of this asshole of a disease. Even before I was the mom of a child with type 1 diabetes, or even a nurse, I never really got the humour in making fun of people with disabilities, diseases or special needs. To me it feels like the humour of bullies.

So you’ll forgive me for taking exception to this “harmless” little limerick written by a very popular and well liked humour blogger

Normally, I let stuff like this go. I’m not one to speak up and open a can of worms that would cause me to have to defend my hurt reaction to ignorant people who are only too content to remain so. But for my daughter’s sake I saw an opportunity to raise some awareness and perhaps change a few hearts. So I penned a letter to the author of the blog:

Hi Jenny,
I’ll be honest, this is the first time I have visited your blog. I found a link to your most recent post on my Facebook feed. I’d be willing to bet it is also one of your shorter posts, which makes it interesting to note that it appears to have generated such a long comments list.

I am the mother of a five year old little girl with type 1 diabetes, diagnosed at the tender age of two. Clearly, you are an intelligent woman who writes a popular blog as you have a whole slew of people, your readership, who have your back. They have fiercely come to your defense when some people took exception to your limerick. And I do have a sense of humor. Really, I do. And I am sane. And I have no stick up my ass (as far as I know). And I can laugh about certain things pertaining to my child’s disease. When you live with a chronic condition every minute of every hour of every day for three an a half years, you learn to laugh about certain stuff.

Here’s the thing: What we live with? Parent’s of children with type 1 diabetes? It is something that breaks our hearts every single day. We watch our children go through a fuck of a lot. EVERY. DAY. And another part of our heartbreak is worrying about what their futures hold for them. Will they one day need toes or feet removed?…below knee or above knee amputations? Will they go blind? Will they develop hypertension, cardiac or kidney complications and the list goes on. So it is a lot to ask of people who are so emotionally invested in this disease to “lighten up”.

We also deal with the misinformation and judgement every single day. People asking me if my child drank too much juice as a baby, was overweight, or was given candy. And what is most heartbreaking about that is knowing our children will be out there dealing with this same misinformation and ignorance on their own one day too, much like the adults with diabetes do who took exception to your limerick.

I know you meant no harm in what you wrote. I don’t think you are a malicious person in the least. From reading a few other posts on your blog, you have your own crosses in life to bear. You’re no stranger to life’s shit piles. And you have chosen humor to deal with it. But what if it was your child with the chronic condition? What if your child had a disease that could do all that stuff I mentioned above and more, even IF you did everything in your power, every single day and night to try to avoid it? Can you honestly say you would have no problem whatsoever with a “harmless” limerick like that?

Perhaps we are a little hyper-sensitive. But you have no idea the fears we have for our beautiful children’s futures, both near and distant. They are fears that I keep hidden away. To let them exist at the surface would cause me to be a non-productive, despairing mom. I couldn’t function. Your limerick, took my breath away when I first read it. My heart went into my throat. It felt so cold and heartless. It brought to the surface all those fears and what-ifs I have as the mom of a child with this horrible, relentless disease. That, I guess, is my problem. But I think, if people consider this situation in the context of something that brings as much fear and heartbreak to them as my daughter’s diabetes brings to me, people might have more understanding as to why your limerick hit a nerve with some.

I guess what I am trying to accomplish is an increased awareness. I don’t expect anyone to recant their enjoyment of your limerick. I understand that not everyone has as much sensitivity to the plight of diabetics (both type 1 and 2) as those of us who live with it every day. And I am aware that some people with diabetes enjoy this kind of humor. But there are a great number of us who’s breath is taken away by something this callous – who’s hearts leap into our throats – even when the horrible, frightening reality of what we live with is presented as a “harmless”, clever limerick.

Thanks for the listen.

Sincerely,
Sherry

I didn’t expect much to come of my letter. I knew going in that it would likely draw more negative attention to me and my sensitivity than I was comfortable with and likely prompt some people, namely her fans, to launch an attack on me for being too PC and touchy.

And it did.

I had made up my mind that the most positive thing I would likely get out of this was a cathartic effect–a release–and that would just have to do. I did not expect Jenny, the author of the blog, to write a private email to me apologizing for the hurt her words caused me.

But she did.

She was kind and understanding and I got the sense that she was allowing me to see her serious, sincere side as she made an attempt to right a wrong. She too is a mom, after all. She explained that her brand of humour isn’t for everyone, but it is her way of dealing with the hardships and battles she has endured in her own life. I was truly touched by her sincerity. But she made it clear that her response to my letter would not be published on her blog as that was “…a place for laughter, not debate.”

It’s just too bad not everyone was laughing.

I know that this disease isn’t my disease, it is my daughter’s. And I know Jenna may grow up to find this sort of humour amusing. That’s fine. That’s her choice. I don’t know that I will ever be okay with it, though. It’s just not in me. It feels wrong, callous and hurtful. And right now, while she is only five years old, I will do what parents have done since the dawn of time and advocate for her until she is old enough to advocate for herself.

Another good thing came from my comment and it came in the form of a comment I received on my blog. It is Laura’s comment – the third one down.This really warmed my heart and validated my hurt and the hurt all parents feel in the face of ignorance and hateful judgement directed toward our children with special needs, whatever those special needs may be. Laura got it. And what’s even more awesome, she had the balls to write to me publicly and say so.

All in all, I feel like speaking up was the right thing to do and something pretty awesome came out of it. And at the end of the day, a few more people out there are a little more aware of and sensitive to what people with diabetes are up against.

Win.

Stuff. Very Important Stuff.

Summer stuff beckons but I absolutely must take a few moments to post some important tidbits. So are you ready for another, bulleted JPM post? Here goes:

  • Did you catch me featured on D-Mom Blog yesterday? Yup. I was there. If you missed it you can nip on over now, or better yet – after you finish reading my post. Just click the shiny button you see here.

  • I recently did a little online shopping over at Lexi’s Misbehavin’ Tees. She has a pretty cool lil set up over there. $3 from the sale of each tee goes directly to JDRF.  You need to go check that out too. I purchased two tees:

This one is for my husband. Now if only the girls didn't know how to read...and weren't so darn inquisitive.

This one's mine, except I'm still wondering what this "sleep" thing is that it mentions.

  •  Finally, it has come to my attention, and to that of the mighty Diabetes Online Community (affectionately known as the D-OC), that a profoundly uninformed individual named Wendell Fowler has been spreading misinformation and lies about diabetes. This individual actually had his dangerous, hurtful and false opinions published in a newspaper called The South Side Times. You can read his drivel article here.  Just cruise through the comments and you will see how upsetting his ignorant message is to those of us that are closely affected by diabetes. But the comment that I personally think kicks ass – likely because the author is a friend of mine and a fierce advocate for people with diabetes – is Kelly’s, affectionately known as K2. She blogs at Diabetesaliciousness and she is awesome. I love her response so much that I didn’t just want to link to it, I wanted to post it here in it’s entirety. And having received permission from Kelly, I have done just that. So sit back and enjoy the magic that is K2…and be thankful she is on our team.

Wendell – You speak of of magic and truth for the greater good – And I agree, truth for the greater good is indeed magical.
However your article is neither truthful, magical or good.
On the contrary Wendell, your article is incredibly dangerous, grossly offensive and guilty of perpetuating diabetes myths and stereotypes in the media and to the public. Speaking of your job Wendell, you’re research skills regarding both the event and people that your writing about SUCKS.

Diabetes is not “avoidable.” Are you even aware of the various types of diabetes?

Type 1 diabetes is certainly not avoidable, and just so we’re all on the same page, the event you so carelessly mocked was held to benefit “The Diabetes Foundation of Indiana,” an organization devoted to providing both education & support to children with type 1 diabetes. Smooth move, Wendell!

Type 1 diabetes is an autoimmune disease. The body of a person with type 1 actually attacks the part of the pancreas( the islet of langerhans) that produces insulin (which every human being on the planet needs to live) and destroys our ability to make our own insulin, rendering those of of us with type 1 diabetes depend on injections for the rest of our lives. Your diabetes myths of SUGAR CONSUMPTION & LACK OF EXERCISE HAD NOTHING TO DO WITH IT.

As a type 1 for over 30 years, I was diagnosed as a skinny 8 year old little girl. I was 20 pounds under my normal weight at my diagnoses. Undiagnosed type 1s resemble starvation victims because of our inability to make insulin actually starves our cells. I come from a type 1 family.
2 of my sisters had/have type 1, as did my father, my 2 aunts, my cousin & my brilliant and talented nephew. We did nothing to deserve our faulty pancreases and sugar consumption had nothing to do with our diagnoses! If it were that easy, my family would have gladly given up the demon sugar years ago!
As a matter of fact, I indulge in ice cream from time to time (cupcakes too) and my Endocrinologist (one of the top in the country) is more than fine with that.
As a person who lives with diabetes,I test my blood sugars litigiously, sometimes as many as 14 times a day. I count the carbs for every piece of food I put in my body and then administer the proper dosage of insulin to cover said carbs & blood sugars & I haven’t had a day off injecting insulin into my body for 33 years.
Now Wendell, if you can find away for those of us with busted pancreases to magically start producing our own insulin, go for it man – knock yourself out.
If you could do that, you could win the nobel prize for medicine and become a hero to millions – if not billions, and you’d never want for money again. Monuments would be built in your honor and every family would name at least one of their children Wendell (regardless of gender) and there’s a good chance the Vatican would anoint you the first canonized living saint.

But….. I’m not going to hold my breath.

And as far as my diabetes brothers in sisters in the type 1.5 Diabetes or LADA (latent autoimmune diabetes in adults) and type 2 branches of my diabetes family tree are concerned, – they are not carry the shame and weight of society’s blame either.

Type 1.5 LADA Diabetes is (and this is the Cliff Notes version) also autoimmune related and occurs in normal sized adults (mostly) who gradually lose the ability to produce insulin. Their inability to produce insulin usually occurs within months, have positive diabetes antibodies and low c-peptide levels.

Type 2 Diabetes is a considered a metabolic disease/disorder and genetics plays a large part in a person Type 2 diagnoses. Yes, weight and food are also known factors. But I know many type 2s who eat right and who aren’t over weight. Unfortunately, their parents, grandparents, and great parents were all insulin resistant.

And as long as were pointing fingers, how about you look in the direction of food manufacturers who over process the foods they produce and replace sugar with High Fructose Corn Syrup (HFCS) so they can have a larger profit margin.
Do you really think its a coincidence that in the past 40 years, since HFCS was added to our diets in ever increasing amounts, America’s weight has continued to climb?
FYI: HFCS is outlawed in Europe.

And here’s where more damage is done because of what you wrote.
YOUR WORDS directly effect fundraising and research efforts for a diabetes cure. People tend not to donate research funding when they think the people living with a disease “deserve what they get.”
I can assure you Wendell, nobody deserves diabetes, regardless of the type.
And HOW DARE YOU put research for a diabetes cure in jeopardy!

So before you write about my disease,and a disease that many of my friends; family, and coworkers have, take the time to at least GOOGLE! Take the time to know ALL the facts,do you’re research, and stop the diabetes blame game!

FYI: Karma is a bitch! And if you think Karma is a bitch, wait until you encounter “Diabetes Karma.”
Diabetes Karma is when people with diabetes, or who’s friends, family and loved ones who have diabetes read your callous words – And start to make noise.
And by noise I mean emails and calls to your editor; publisher and the many advertisers of the SS-Times, and let them know exactly how we feel about what you wrote.

You want Karma my friend, YOU GOT IT. You wanted people to talk about your article? Congrats – We are talking! And we are writing; posting, facebooking, tweeting, & picking up our phones. Our numbers our strong & our voices are very loud and we are incredibly passionate about our diabetes cause!
Sincerely
Kelly Kunik

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