What Does 7 Years with Diabetes Look Like?

I'm deviating from the NHBPM prompts today because it's Dylan's 7 year anniversary of the day he was diagnosed with type 1 diabetes.

7 years ago today we found out that Dylan has type 1 diabetes (his diagnosis story can be found here).  That's significantly more than half of his lifetime. And while we're not big on celebrating his diaversary, this is how 7 years with diabetes breaks down, from a basic care standpoint:

15,340+ finger pokes

2190 injections (pre-pump)

609+ infusion set changes

1092 lows (avg of 3/week)

4 hypoglycemic seizures

3 hospitalizations

Approximately 63,800 units of insulin

$55,000+ spent on diabetes supplies

2557 days of worry

1 still-broken pancreas in a child only 11 years old

Diabetes is 24/7/365. Imagine what these numbers will look like after 20 years, or 40, or 80...

What Alternatives?

Write about alternative treatments / regimens / medicine. What do you support? What is crazy?

Some days it seems like everyone's great-grandmother, third cousin, and neighbor's friend has a supposed "cure" for type 1 diabetes. Be it massive doses of cinnamon, unique herbs, the bark of a special tree, or a new mysterious diet, the claims of diabetes being curable and/or reversible are abundant. Alas, they are also a load of crap.

Type 1 diabetes is autoimmune disease that is NOT curable, reversible, or preventable. The pancreas of a person with type 1 diabetes no longer produces insulin, so it has to be injected subcutaneously, either via syringe, pen, or pump. The ONLY treatment, regime, or medicine that will keep a type 1 diabetic alive is insulin. Period. There is no way around this. No insulin = death.

Sure, there are lots of things that might help a person with type 1 diabetes to live a long and healthy life. Exercise, a healthy diet, and good blood glucose control are all very important. But they alone, together, or in combination with any above said "cures" will all result in the same disastrous outcome. No insulin = death.

There will always be people spouting false and unfounded ideas about cures for diseases, just as there will always be those of us trying, again and again, to educate them. All we can do is address them one person at a time.

Question for Type 1 Parents

The NHBPM prompt for Day 19 asks us to pose questions to other patients. 

We have been riding a carousel with Dylan's diabetes care for quite a while now and I desperately want to get off the ride. Around and around and around we go, repeating the same problems over and over. Now I am asking for help/advice/tips from the DOC.

For as long as I can remember Dylan has been pushing for independence with his diabetes care. He has always shown a high level of interest in doing his own testing, entering carb counts for meals, and calculating his own correction boluses. I oversee everything, and do all of his site changes and setting adjustments, but for the most part, he handles the day to day stuff on his own. This system has worked for us. Until recently.

Just over a year ago, Dylan started forgetting to test from time to time. He'd come home from school and we'd realize he'd neglected to test for his morning snack, but gone ahead and eaten it anyway, resulting in a slightly elevated bg at lunch. I'd catch the oversights early, and the problem would go away. Then a few weeks later it would happen again, and again, and again. 

Then last November we adjusted the custody agreement between Dylan's dad and I, implementing a week on-week off schedule. Great for the kids, not great for diabetes monitoring. The forgetfulness with testing became more and more frequent, and without me hovering and reminding Dylan constantly to test, missed bg tests at school became the norm rather than the exception. Upon uploading the pump data, I would immediately see the problem, talk to Dylan about it, and it he would be more diligent at school, at least temporarily.

The cycle has continued on and off since and we don't seem to be getting anywhere closer to a permanent solution. His testing habits at home are great, but school is an ongoing problem. He doesn't have any support worker or aide anymore, and I can't be there to remind him. He has always been very good at recognizing highs and lows, too, so when he feels good, he is more likely to forget to test.

So my question is...

How do other parents ensure that their tween/teen tests at school? What system/precautions do you have in place?

Diabetes Playlist

Why do I associate certain songs with diabetes? Each of the songs below has a story; a memory that forever binds it with diabetes. These songs carry weight in my heart and can bring tears to my eyes within seconds.

Without further ado, here are the top 6 songs on my "diabetes playlist":

1) "Fix You" by Coldplay. Aside from the obvious message in the lyrics, this haunting song is my favorite diabetes song for two reasons. First of all, when Cyclebetes (the diabetes cycling team I am part of) was first formed, this was used as an unofficial theme song of sorts. Second, Dylan sang this song earlier this year in front of an audience of about 250 people and it was one of the most emotional experiences of my life.

2) "Breathe Again" by Sara Bareilles. I first heard this song at the 2010 Vancouver JDRF Gala, as the background music to an awareness video created by a mom who had multiple children with type 1 diabetes. The lyrics and melody touched my heart, and the song has been on my playlist ever since.

3) "Invincible" by Hedley. Dylan's theme song. This local band is from Vancouver, where I live, and I've followed their rise to fame for years. While this song is great on its own, the music video enhances its power, as the song speaks to overcoming any and all obstacles.

4) "Have a Little Faith in Me" by Joe Cocker. Just a little reminder to get stop believing in yourself because truly anything is possible if you set your mind to it.

5) "Superwoman" by Alicia Keys. I first heard this song at a benefit concert for TEAM DYLAN in 2010 and it immediately struck a chord with me. To all my d-mommas out there, this one is for you.

6) "I Believe" by Nikki Yanofsky. The official theme song of the 2010 Winter Olympics, this song speaks of the sacrifices we make to achieve our dreams. My theme song :)

Type 1 Diagnosis, Now What?

Day 16's prompt asks bloggers to use a picture or video to inspire a post. I've chosen a picture that contains a quote that I find particularly applicable to living with type 1 diabetes.

A diagnosis of type 1 diabetes can be devastating. Crippling even. And is it not a disease of patience. Diabetes doesn't wait for us to grieve, or be angry. It doesn't even afford us the time to let the enormity of its implications sink in. No, diabetes is a disease of action. It has requirements; things that must be done to enable survival. But how? Amid the shock, confusion, or overwhelming despair, how does a parent move forward and ensure the best care for their child? The only way we can: one step at a time.

2012 Health Activist Awards

Halfway through National Health Blog Post Month already! Today's prompt asks us to nominate a fellow blogger for a 2012 Health Activist Award. 

I've nominated some of my favorites, have you? Nominating your fave blog is super easy. Simply choose the category in which you wish to nominate, from the following options:

Advocating for Another Award – someone who advocates for the health condition of someone they love. 

Best Ensemble Cast – A group who advocates and raises awareness. 

Best in Show: Blog - Someone who exemplifies the use of blogging. 

Best in Show: Community/Forum - Someone who exemplifies the use of a community or forum. 

Best in Show: Facebook - Someone who exemplifies the use of Facebook. 

Best in Show: Twitter - Someone who exemplifies the use of Twitter. 

Best in Show: Video – Someone who exemplifies the use of video. 

Best Kept Secret –Someone in the online health community who hasn't gotten a lot of attention. 

Health Activist Hero – An inspiring, supportive, and knowledgeable Health Activist . 

Hilarious Health Activist Award - The Health Activist who makes you laugh alongside their advocacy.

Ms/Mr. Congeniality – Someone who always has a kind word, a positive note, and a virtual hug. 

Paperboy Award – The Health Activist who always delivers the latest and greatest health news and research.

Rookie of the Year – A Health Activist who came on the scene in 2012 but has inspired the entire community. 

Silver Stethoscope – A healthcare professional who utilizes social media to make the world a better place. 

Trailblazer Award – The Health Activist who is ahead of every curve and excited by new technology. 

Unsung Hero Award – The member of your community who may not know how amazing and valuable they are. 

Then head over to WEGO Health's Health Activist Awards nomination page by clicking here. It only takes a minute and anyone can nominate a blog, or as many blogs as they want!

LOL Post

Day 10's prompt asks bloggers to write something funny or share something they found funny.

First of all, I have to say right up front, that I don't find anything "funny" when it comes to type 1 diabetes. Diabetes is a serious, life threatening medical condition and, in our house, we treat it as such. However, in prepping this post I actually searched for "diabetes jokes" and "diabetes humor." Big mistake. What some people might consider funny, I find offensive and ignorant. Enough said.

That being said, funny things DO happen during the day to day care of child with type 1. Examples? Finding used test strips in all sorts of weird places; being overly tired and trying to poke my daughter's finger by mistake because she just happens to be standing closer to me; or overfilling pump a reservoir and spilling insulin down the front of my shirt.

And yes, I think that having somewhat of a sense of humor when it comes to diabetes, IS necessary. Without it, one would go crazy from the stress, lack of sleep, and inane comments made by those whose knowledge of diabetes is zilch. Don't even get me started on some of the ridiculous things I've heard when people find out my son has type 1 diabetes...

Exercise Induced Lows

Today's NHBPM prompt asks for a descriptive account of a memory. I've deviated a bit from the task, and written more of an evolution of a problem, rather than a specific, one-time memory.

In case you're not familiar with my blog, or my story, let me start off by stating that I do not have diabetes. My 11 year old son, Dylan, was diagnosed with type 1 diabetes in November of 2005, at the age of 4.

I, however, have struggled with hypoglycemia for as long as I can remember. Throughout my childhood and teenage years, low blood sugar was a regular occurrence for me. If I skipped breakfast, my blood glucose would tank by 10:30 or 10:45 am and I would start shaking uncontrollably until I ingested fast-acting sugar. I slowly learned the importance of breakfast, but then in my twenties, the causes of my hypoglycemic episodes expanded. Suddenly I couldn't handle large amounts of simple carbs anymore. I had to eat protein at every meal and keep simple carbs to a minimum. Over time, it became an easily manageable problem.

In my late twenties I took up running and at first everything seemed ok. But as my endurance increased and my runs consisted of 10-25km each, I was faced with a new cause of hypoglycemia: inefficient carb-loading. For the first few years of my running career, I could get away with a pre-run snack of a banana and a whole wheat bagel with peanut butter. And I would carry a bottle of Gatorade, and a tube of dextrose tabs, with me at all times to cover my regularly occurring mid-run low. That worked for a while.

Then last year the lows became more extreme. Suddenly the recovery got slower and I would feel weak and shaky for half an hour after treating the low, making the rest of my run near-impossible. At this point some people might have considered giving up running, but I love it. And not just for the exercise; running is my stress relief, my time to myself, and my time with nature. So I gave up the nature part and started doing all of my runs on my treadmill. Boring, yes, but still effective.

In May 2012 I got involved with the 90 day challenge and everything changed. The shakes I was drinking daily left my blood sugar stable all day and my lows stopped happening. Suddenly I could run outside again, plus I could run faster and further than ever before. It was amazing! I went 6 months without a hypoglycemic episode...until today.

I upped my exercise regime quite substantially this week, adding some intense strength training, and speed intervals to my running. The increase was clearly too much too fast, and my body responded with a brutal low. It kicked my butt. I had to stop moving, take in 45 grams of fast-acting carbs and wait half an hour before feeling somewhat better. I had almost forgotten how scary it feels during that waiting period. Almost...

NHBPM, Day 8

I am going to pass on today's prompt and use one of my 2 "Get out of post free" days!

Finding Balance

The prompt for day 7 of WEGO Health's National Health Blog Post Month is, “Be mindful. Write about what helps you stay centered in the present…"

Mindfulness has been on my mind a fair bit lately. Between having 3 kids and 3 jobs, my life is hectic, and I find that I have to force myself to stop and be present in my own life.

Those who've been reading my blog for a while, know that I promote the 90 Day Challenge. In fact, I am currently participating in my third 90 day challenge. My first two challenges focused on athletic performance, and I experienced some incredible results. My current challenge, however, is much more holistically based. Entitled, "Finding Balance," I am challenging myself to be mindful in my daily life  every day for 90 days, striving to find a healthy balance between body, mind, and soul. I am taking care of myself physically (via proper nutrition, ample exercise, and adequate rest), mentally (by reading both fiction and personal growth books, and writing daily), and spiritually (by identifying and dealing with stress, spending quality time with my children and husband, building relationships with others, and participating in daily meditation and prayer).

While this may seem redundant to those who already have a solid balance in these three realms, for me it is taking real effort. For years now, I have emphasized the importance of taking care of my physical health, but I have neglected my mental and spiritual health as a result. Finding balance is a real struggle for me, but I am up for the challenge and determined to maintain these healthy changes in my life.

Taking the High Road

Day 6 asks bloggers to write about a time they had to take the high road. I decided to repost a piece from last year...

Strangely, the best conversation I had this week was tonight, after Easter dinner. While at a small family gathering we got into a brief discussion about type 2 diabetes and its causes, and I quickly discovered that misinformation exists, even among family. 

An immediately family member on my husband's side has recently (a few months ago) been diagnosed with type 2 diabetes. After a few months of paying attention to diet and limiting high sugar/high fat foods, he has lost weight and reduced his need for oral medication by 25%. He is doing fabulously, and has adapted very well. Yet he was telling me how a nurse at the diabetes clinic had recently informed him that even if he loses more weight, eliminates his need for oral diabetes medication, and stabilizes his blood sugar, that his type 2 diabetes will never go away. The symptoms may disappear, but he will ALWAYS have type 2 diabetes. FYI - This was a direct contradiction of what he had been told at diagnosis, so thanks to that diabetes educator/nurse for setting the record straight.

He then went on to say how there have been numerous cases of type 2 diabetes in my husband's family, both on his maternal and paternal sides, thus greatly increasing the risk to other family members. At this point, a third person joined the conversation, casually inquiring about his personal risk. I explained that there are a number of factors that lead to the development of type 2 diabetes, particularly genetics, obesity, age, and race, and that his particular risk would be considered low because he is not overweight, exercises regularly, and is relatively young. Yet, he is hispanic (the prevalence of type 2 diabetes is 15% in people of hispanic descent, as opposed to 6% in individuals of caucasian descent) and carries a genetic disposition to the disease. I then said that the best way to reduce his risk is to continue to exercise regularly and maintain a healthy body weight, particularly as he gets older. But, I said, there are no guarantees. Genetics dictate that even with the best prevention, he may still develop type 2 diabetes at some point in the future.

At this point, the conversation shifted as two other family members jumped in and contradicted what we had been discussing, stating that as long as he exercised regularly, there was no chance he would EVER develop type 2 diabetes; that type 2 diabetes is caused by poor diet and a lack of exercise. 

Whoa whoa whoa, hold on a minute, are you effing kidding me? My own family? Tell me it isn't so...

I certainly do not claim to be any kind of medical professional or diabetes "expert," but with a son who has had type 1 diabetes for over 6 years, I've read a ton of diabetes literature, attended dozens of conferences and research symposiums, and have tried my absolute best to educate my family and friends about diabetes. And part of that education has been with a focus on eliminating myths and the spread of misinformation. If ANYONE in my family still believes that diabetes, be it type 1 or type 2, is caused entirely by lifestyle factors, I have clearly failed in my efforts to educate.

Gratitude

Today's prompt asks bloggers to write a #ListOf3 things that they are thankful for / excited about / or inspired by. Personally, the most challenging aspect of this prompt is narrowing the choices to only 3. So here are mine:

1. My children - a no brainer. My kids are the most incredible and inspiring part of my life. They fill my days  with joy, laughter, and love, and I am eternally grateful to be a part of each of their lives.

2. My health - I spend a lot of my time taking care of myself, so that I can better take care of others and ensure that I'm here as long as possible. I don't want to simply cruise through life, I want to live every day to its fullest and experience everything this amazing world has to offer. Without health, nothing else matters.

3. Diabetes treatments/technologies/medications - this is health activist blog carnival after all, and while I will tirelessly advocate for a cure for type 1 diabetes, until its found, I am thankful for what we do have thus far. The constant improvement and evolution of technology and medicine enable those with type 1 diabetes to live longer and with fewer side effects than ever before. 

There is still lots of time to participate in WEGO Health's November Blog Carnival. Simply click here to find out more info and to sign up for the daily prompts!

Full Disclosure

Day 4 Prompt: How do you decide what to share? What do/don't you share?

Anyone who reads my blog knows I share a lot. Maybe too much, in some people's opinions, but it's within my comfort level. My blog is like my journal - a place where I can share my feelings, my ideas, my hopes, and my fears.It's where I process my thoughts and deal with what is happening in my life. What I share on a day to day basis really fluctuates with my mood; some posts are in-depth and some more superficial. Some talk about personal issues, while others are more informative in nature.

Do I have limits? Sometimes. I don't write about my non-D kids very often. My readers certainly know I have 3 children, and they may know their names, but my writing focuses on Dylan. I very rarely write about my husband because he's not as comfortable as I am sharing his life with the world. 

For the most part, my blog focuses on raising a child with type 1 diabetes and all of the daily challenges and experiences that come with that.

There is still lots of time to participate in WEGO Health's November Blog Carnival. Simply click here to find out more info and to sign up for the daily prompts!

Talking to the Doc

Day 3 of NHBPM asks about a conversation with the doctor. It's a topic I've been considering writing about for a couple of months now, but haven't. Why am I avoiding it? Fear.

Rewind to spring of 2011. Dylan had been experiencing some edema (swelling/water retention) in his face, hands, and feet, and I was a bit worried about what was causing it. From what I could find, there didn't seem to be any correlation between diabetes and edema (though if I'm wrong, please let me know), so we asked our GP about it. Our GP (family doctor) thought maybe Dylan had developed an allergy, so he referred us to the allergy clinic at Children's Hospital (where we were added to the bottom of a 18 month waiting list). He didn't seem concerned, so I decided to let it go and wait for the clinic appointment.

At our next quarterly DEC (diabetes education centre) appointment, I mentioned the edema to our endocrinologist. She agreed with the GP.

Fast forward to August 2012. We finally received our appointment at Children's Hospital for the 28th. After a full medical exam and history, followed by a series of scratch tests for animal, plant, and environmental allergens, the allergist had no idea what Dylan was allergic to, if anything. He had no reaction to any of the scratch tests, and because the edema was constant, the doctor ruled out a food allergy. He gave us lab forms for celiac testing and Angioedema and sent us on our way. A 2 hour waste of time in my opinion, but at least we were one step closer to figuring out what WASN'T causing Dylan's inflammation.

A week later (early Sept 2012) we were back at the DEC for a check-up and this time it was anything BUT ordinary. After doing the routine weighing and measuring, evaluation of pump data, and quarterly A1c test, we sat down with the endocrinologist. As soon as she looked at Dylan I knew something was wrong. She was surprised he was still suffering from such severe edema. She had copies of the reports from both the GP and allergist, but had assumed the swelling had decreased since she had last seen him. She was noticeably worried.

There are not a lot of things that cause edema in the extremities in children and we had already eliminated the less severe causes. Her first suspicion was kidney failure, or a thyroid problem, so she ordered more lab work. At the top of the lab forms she wrote a message to the lab technicians asking to rush the tests and call her immediately with the results. She then told us to go straight to the hospital. Do not pass go, do not collect $200. Now I was panicking.

We live a block from a hospital, so we the lab work and went home. 2 hours after leaving the DEC clinic, I got a text from the endo stating that all the test results were normal. Dylan's thyroid and kidneys were functioning perfectly and all of the other bloodworm was also normal.

A wave of relief flooded over me, but again, it was temporary. We still didn't know what was wrong. The endo suggested Dylan go for an echocardiogram to make sure the swelling was not a result of a heart defect. Wtf? Are you eff'ing kidding me? Could this possibly get any more frightening? I was told to wait for Children's Hospital to call me with an appointment time.

Fast forward again, to last week, when we finally got a date for the echo. It's this coming Thursday. I'm emotionally torn, to say the least. My fingers are crossed that the echo reveals everything with his heart is normal, but a part of me is thinking, what else could it be?

Oh, the Weirdness.

Day 2's NHBPM prompt is, "Write about the weirdest thing about your health condition?"

Upon first reading this prompt, my initial reaction was, "what isn't weird about type 1 diabetes?" At its most fundamental, it's a disease that is essentially the same in everyone (an ability of the pancreas to produce insulin), yet it shows itself so differently from day to day and person to person. What works for one person may not work for another, and what works for someone one day may not repeat itself the next.

So I thought I would pick one aspect that is perhaps more frustrating than weird, but still a regular issue in our house. Exercise.

Last year and the year before, Dylan played ice hockey. A grueling, strenuous, and highly skilled sport that demands a level of fitness and commitment that can challenge any child, and parent, let alone one with type 1 diabetes. Yet we managed. After some trial and error with temp basal rates (and different rates for practices than games), we finally found a system that worked for us. MOST of the time at least.

Then this fall Dylan decided he wanted to switch back to soccer instead, so that he could play on a team with many of his friends.

Back to square one we go. While hockey and soccer may appear similar in terms of cardiovascular fitness and physical exertion, according to Dylan's blood glucose rates, they are quite different. Well, at least we think they are. Every time we think we've got the temp basal for games figured out, his post game bg is totally different than the previous game.

So many variables are involved - what position he plays (he'll run much more playing midfield than defense, for example); what the weather is like; how much playing time he gets (dependent on the number of subs available at each game); what time of day the game begins (is it right before lunch, or 2 hrs after lunch, for example)?

After the first game of the season we were convinced we were on to something! He ran a 70% temp basal starting 15 minutes prior to the game. He drank a 750ml 10 carb electrolyte drink instead of water, and had 4 orange wedges at half-time. His post-game bg was 4.7mmol/l. Not bad. The following game I wasn't there and he forgot to run a temp basal altogether. He drank water and his post-game bg was 11.9. Wtf? Without the temp basal his bg should have been low, not high.

And so it has continued every game since then. Up and down, up and down. The weirdness of type 1 diabetes...

Why Do I Write?

Today kicks off WEGO Health's National Health Blog Post Month, with a prompt asking, "Why do you write?" I wrote on this topic for a blog carnival earlier this year, so I've revised and re-posted my previous piece.

Why do I write about my health (my son's health) condition? My reasons for writing about my (my son's) health condition: I write for me and I write for Dylan.

I Write For Me

My blog is my journal; my diary; the place where I process my thoughts and feelings about raising a child with type 1 diabetes. There are days when I don't know what to write about, and yet once I start the words just flow out; other days I have a specific purpose for a post. Some posts are superficial, while others run much deeper. Regardless, I have become addicted to the cathartic power of writing. Not only is it an avenue for me to express my ideas, it is a tool that helps me to reflect on how I feel about diabetes and all that comes with it. 

Through blogging I have come to terms with my son's diagnosis, and feel a sense of peace that I never had before. It is no longer just about fighting for a cure. It is about accepting that this is the life we have been given. It is about understanding that each day is a gift. It is about knowing that I can choose to make the most of each and every day. It is about connecting and being part of something much bigger than myself (the DOC). And it is about making my voice heard.

I Write for Dylan

All of the above being said, this blog started because of Dylan and I will continue to fight for a cure for type 1 diabetes, for my son and for the thousands of individuals living with this disease. And until that cure is found, I will advocate and educate about type 1 diabetes at every chance I get. Why? Because I can't stop. I will never give up. It's that simple. 

A few years ago I gave a speech, at one of JDRF's Research Symposiums, in regards to why I walk with JDRF every year. I'm going to borrow a bit of it, as it can also be applied to today's topic. 

"When I ask myself why I walk (blog), I am always presented with the same image – the day Dylan was born. I think of that moment when the nurse put him in my arms and I held him for the very first time. I remember our first eye contact. That moment, be it very brief, felt like an eternity, and I could have lived in that moment forever. It was the moment that every mother is blessed with, when you realize that you love your child beyond all possibility, beyond all measure. And in that moment, your life is changed forever because everything you thought you knew about life, love, and what is important, is called into question and everything you thought you knew about yourself requires self-examination. In that moment the only thing in the world that matters in your child.

As parents we know that in loving our children we must also try to keep them safe. And when I think back to that first moment with Dylan, I know that I certainly never thought that keeping him safe would include safety from the immediate and long-term side effects of type-1 diabetes. But as long as it does, I will continue to walk – year after year after year – and I will never give up until there is a cure. I owe him that."

Visit every day in November as I tackle the daily prompts in the National Health Blog Post Month!