A family living well with type 1 diabetes.

Posts tagged ‘JDRF’

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.

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

My 5K. And My Tooth.

Last night while I was composing my last blog post, a tooth that has been giving me some minor grief for a few months decided to ramp up its game. It hit me suddenly and caused me to decide to turn in as soon as my post was published. I couldn’t think straight so off to bed I went after I dosed up with analgesics. This morning, a call to my dentist at home (awesome dentist? Hell, ya!) resulted in a course of antibiotics ordered (he feels it is likely a nerve dying in a tooth I had crowned last fall) and a new best friend for me – my bottle of extra strength Advil.

Just completed my run. The treadmill looks tired, don't you think?

These little trials have such impeccable timing, don’t they? My tooth had to pick a Friday night to flare up. It also happens to be the 5k weekend. I was worried I would have to walk the entire 5 kilometers fearing the impact of my feet hitting the ground (treadmill) would jar the affected tooth. But the Advil worked its magic and I was able to run most of it.

My time was 40:24 minutes. I’m fine with that. In fact, I am rather proud of it. Not bad for a gal who wore the wrong runners (the ones I opted for rub on my heels and I am now sporting an angry blister) and has a tooth that’s begging for a root canal.  But I’m not complaining. Not one single bit. I enjoyed the run, even though I did it on a treadmill instead of my preferred outdoors. I wanted to be sure of my distance and time.

I just kept thinking about my daughter and all the other people with type 1 diabetes who don’t have a choice. They can’t quit diabetes. Its a part of who they are. It’s for life, unless a cure is found. So there was no way I was going to quit for a silly tooth or a poor choice in footwear (which must run in the family)!

BOOYA!

Dust Off Your Runners!

Okay. I’ve been terribly remiss. I’ve been like a dog chasing its tail – easily confused and distracted by shiny things, an unfortunate side effect of chronic sleep deprivation and a busy schedule. Something big is afoot (ha!) and I’ve not blogged about it yet! So without further ado – and before the next butterfly flutters by capturing my attention – lets talk 5K.

The awesome Reyna of Beta Buddies, has an amazing sister named Tara. Tara is a running machine. I mean, this woman doesn’t just run marathons, pfft! She trains for and runs ultra marathons!  We’re talking 30 miles or more (sometimes over 100 miles) of straight running! And she LOVES it! (You’d have to, wouldn’t you?)

She is incredible. Don’t believe me? Go check out her blog here.

But it’s not just her incredible running ability that makes her amazing. It’s also the remarkable support she is extending to her sister, Reyna, a fellow mother of a child with type 1 diabetes. Recognizing the urgent need for better treatments and a cure for her nephew and everyone living with type 1 diabetes, Tara decided to put her passion for running and her love for her family to work and came up with The Virtual 5K. Wendy at Candy Hearts has a fantastic post up that includes an interview with Tara and what motivated her to initiate The Virtual 5K. Clearly, awesomeness runs in this family.

This is an event that anyone can register for and participate in. You don’t have to have diabetes or have a child with diabetes or be a runner. You just have to want to help make a difference. But the deadline for registration is fast approaching. More participants are needed to meet Tara’s fundraising goal. So go here and check out the details of the event, then go here and register to participate!

I’m in. Are you?

We Walked.

Last Sunday was our third JDRF Walk To Cure Diabetes.  We are proud to say we came within 15 dollars of our goal of $1000.  We have many dear friends and family members who continue to support our passion to find a cure for this relentless disease.  Without their help we wouldn’t have done nearly as well in our fundraising efforts. But what is just as important (sometimes more so, even) is that we would feel more alone and misunderstood without the compassion and understanding of these dear, caring people. Diabetes can be a very lonely journey. The love and support of friends and family is crucial to the overall wellbeing of people with type 1 diabetes and the family members who care for them.

The walk was a success with our city raising over $100 000 for JDRF. The weather was more than cooperative and, with the exception of a poor choice of footwear for Jenna that I foolishly endorsed and rued my poor judgement for the entire walk as J and I traded piggy-back duty, our little family team enjoyed spending a couple of hours mingling with other D-families.

A pensive Jenna with her balloon animal.

To kick off the walk several people spoke to the crowd. One such person was Sarah, the woman I had serendipitously met only a couple of weeks earlier at a kids clothing store. Sarah, it turns out, is a real firecracker at fund raising. Dressed in a wedding dress she addressed the crowd, explaining her attire as a fundraising initiative to create a buzz and get people asking questions.  In essence, it was a way to get attention. She and other friends of hers dressed in wedding attire and called themselves “Brides Gone Wild”. They walked the streets of the city the night prior in a successful attempt to raise awareness and raise money. Her team accumulated $11 000 for the JDRF.  That’s eleven THOUSAND dollars! Impressive.

Sarah spoke to the crowd, giving a speech that was very emotional. It cut straight to the heart of every parent of a child with diabetes in attendance. After her speech she left the stage and made her way through the crowd. I was lucky enough to be in her path and I stopped her. Her eyes were red and her face full of emotion. I hugged my new friend. My fellow D-Mom warrior.

I asked her if I could somehow get a copy of her speech. Without hesitation she handed me the copy she had in her hand and gave me permission to print her words on my blog. She explained that her passion is raising awareness. Raising funds is secondary. She wants to make the world a friendlier place for our children who have been burdened with a disease that has so many unfair stereotypes and misconceptions surrounding it. She wants to educate. I couldn’t agree more.

Here are Sarah’s poignant words:

Last night I was a bride gone wild. Today I am an overdressed Mom determined to do whatever it takes to find our kids a cure.

Sarah giving her moving speech.

This past winter my husband and I taught our kids to ski. We started nice and slow on the bunny hill. Easily picking our kids up when they fell on the gentle slope and easily keeping them within arms reach.

Type 1 Diabetes is a lot like learning to ski. Except that you  don’t start on the bunny hill. You are thrown on the chair and when you get to the top you discover the only way is a double black diamond run and there is so much fog you can’t see the way to the bottom.

You realize very quickly that you are never going to get down safely without a community of support to guide you.

We are all here today because we are either on the icy slope or we are part of someone’s team.

[We are] Mothers that love [our] kids fiercely. Mothers, that have built teams of support that help their children live their best lives.

Janice is also a mother who loves her son fiercely. Tragically, her son, Kody, is no longer here with us. In March of this year, at the age of 22, Kody passed away from Diabetic Ketoacidosis.

Diagnosed with Type 1 Diabetes at the age of three, Kody had his ups and downs and challenges with Diabetes but he never let [it] keep him from doing anything.

Growing up … Kody had a great team of support, but as a young adult, Kody said his Diabetes was just another problem he had to solve. He thought he could do it on his own but everyone living with Type 1 Diabetes needs someone to watch their back.

In Prince George, where Kody was living at the time of his passing, he did not have a team looking out for him. If he had reached out and educated those close to him about his disease they may have recognized the dangerous warning signs. He might not have passed away.

Many people living with Type 1 Diabetes are embarrassed to share their disease with friends and co-workers because there are serious misconceptions associated with the word Diabetes and it won’t change unless we speak up and educate the larger community.

Don’t brush it off as no big deal. We all know that Type 1 Diabetes is a 24 hour, life threatening disease, that couldn’t have been prevented. By speaking up and advocating about Type 1 Diabetes we will grow our small community of support into a large one.

When we begin changing these misconceptions we make it easier for our teens … to build their own team that will have their back when they eventually leave the support network their family’s have carefully built for them.

Today we are walking … because a cure is our only way off the icy slope.

…. In the words of Frank Sinatra: “Walk on through the wind. Walk on, through the rain. Though your dreams be tossed and blown. Walk on, walk on, with hope in your heart. And you’ll never walk alone. You’ll never walk alone.”

… so don’t walk quietly. Walk loudly. Lets make ourselves heard. Lets start spreading the awareness.

Here Comes The Sun.

Welcome to Jenna’s Pet Monkey’s new home!

This is a move I’ve been contemplating for a long time. If you took part in the Diabetes Blog Week you’ll recall Blogger’s massive dropping of the ball which threw all Blogger using D-bloggers into a tizzy when no one could access their account for a couple of days. The timing of this Blogger glitch was unfortunate. The disappearance of some posts and comments was especially upsetting. Since then all posts and their comments have been restored, but it was enough to give me the nudge I needed to take my blogging business elsewhere and up my game a bit in the process.

Here comes the sun.

I’m still finding my way around my new digs here at WordPress.  There is plenty to learn and explore. My blog’s appearance may change several times over the course of the next few months, much like my blog did over at Blogger in the first year or so as I became familiar with all the functions and widgets. But I’m enjoying the change so far. It’s good to shake things up a bit now and then. The last six months of my life serve as proof that I am no stranger to change. This is just a drop in the change bucket.

Speaking of change, I’ve been struggling with all the change that has occurred in my life in the past half year. Not all of it has gone smoothly and, indeed, some of it has been downright painful. I’ve been soul-searching my ass off trying to come to terms with certain things. In the process I have found myself in a rather cloudy place on one or two occasions.

The last time was a couple of days ago in the wee hours. It seems like the blue hour is appropriately named. It’s when my brain wants to explore my deepest fears – when I am most acutely aware of all my doubts and hurts. I much prefer to be sleeping during that time because of this. But a spaghetti-induced, delayed high blood sugar was seeing to it that I would remain conscious and venture into a few more shadowy corners of my mind.

I had just crawled back into bed after performing my third check on Jenna, confirming that she was still high. I had completed the necessary site change to rule out a site gone bad and now I couldn’t shut my brain off. Sleep was not happening. I was missing my support network that I had before we moved from our home of four years –  my friends, family, fellow Moms of kids with type 1 diabetes. I have yet to meet many people here in our new city, let alone create any fabulous friendships or meet anyone in the diabetes community.

I’d made a decision weeks ago to sink my teeth into the diabetes advocacy role even further. This is my passion in life now. (Funny how having a child with a serious, life-threatening disease can do that to a parent). So I had contacted the local JDRF rep here in our new city and made arrangements to have coffee with her at a Starbucks. The meeting was to take place at 9 am later this same morning. I contemplated cancelling the appointment. How could I go to a meeting sleep-deprived and feeling blue? I was liable to fall apart right there in front of her! But I didn’t have a phone number to call and cancel, having made the meeting by email. Furthermore, if I were to cancel the meeting by email there was a good chance the woman from JDRF wouldn’t get the message in time. I don’t think it would make a good first impression on this woman if I were a no-show for a meeting I had initiated. I would just have to suck it up.

As it turned out the meeting went beautifully. It was just what I needed. She asked what brought us to the area so I gave her a brief synopsis of the previous six months. She was very kind and grateful that I wanted to volunteer with JDRF fundraising. She explained that there were numerous opportunities for me that would work with my schedule and my areas of expertise. And she also mentioned a few support resources for me. In fact, that was the very first thing she mentioned at the start of our meeting, as if she intuitively knew that this was what I needed from her.

She mentioned support for when Jenna starts kindergarten next year. She talked about the local diabetes clinic and asked if I had contacted them yet. And she mentioned the name of a local mom – Sarah – who is very active with JDRF in an advocate and mentor role. Her daughter is seven years old and was diagnosed at 18 months. She said that she felt Sarah and I would have much in common and she felt strongly that I should meet with her.  She asked if I would be okay with her forwarding my contact information to Sarah. Of course, I said yes.

The meeting wrapped up, we went our separate ways and I felt like I had recharged, having met another person in my new city with the promise of meeting still more people who have first hand knowledge of what it means to be the parent of a child with type 1 diabetes. I proceeded to go about the rest of my day running errands with Jenna tagging along. This included a stop at the mall to take advantage of a sale at a children’s clothing store. Both my girls have grown like weeds, as kids tend to do, and require new summery attire. As I was rummaging through the racks of summer clothes, trying to stave off Jenna’s constant requests for frilly dresses instead of the sensible shorts and tees that I was leaning toward, a woman approached me.

“Excuse me…hi there. I couldn’t help noticing your daughter has an insulin pump. I also have a daughter who has type 1 diabetes. She is seven years old. My name is Sarah.”

My jaw dropped. Could this be the same woman I had been told about only two hours prior by the JDRF rep?!

“Oh my gosh. I think I’m supposed to meet you!” I replied with a deer-caught-in-the-headlights look on my face.

I went on to explain about the meeting I had just had and how her name had been mentioned.  She confirmed that she was, indeed, the woman the JDRF rep had told me about. We chatted about a few things only D-Moms would chat about. She let me know about a few plans in the works for our upcoming JDRF walk and invited me to some D-Mom get-togethers. It was lovely.

The day had started so early and unhappily. Now it was taking a definite turn for the better. It was like  the universe was letting me know, at a time I needed the reassurance the most, that everything is going to be okay. I am where I am supposed to be, doing what I am meant to do. It seems the clouds are finally bugging out and the sun is promising to shine once more.

And to think I almost cancelled that meeting.

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