Meaning

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Meaning

If you didn’t live with diabetes would you be the same person you are today? What has changed about you & your family as a result? Has it been a positive change?

Without a doubt I have a passion & a purpose that I believe would have been more difficult to discover had it not been for living with ‘my’ diabetes. Although there are days I wonder how much more energy (many without diabetes say I have more then they could harness so I hesitate to wish that upon anybody! LOL) as well as how much easier & clearer my mind would be to think & process daily thoughts (that again scares people that if I thought & processed more than I do I would be a very overbearing person). Maybe I am just really good at hiding how crappy I feel somedays. BUT, in the end, I have no regrets or misgivings about being handed this lot in life. Especially now that I sit with peeps & their families that live with diabetes & appreciate that I am their coach. I love sharing my experiences of 38 years of living with diabetes, as well as 13 years as a Mom of a child with diabetes to help others.

On the other hand, I do find at this point in time challenging as a parent of a ‘child’/young adult living with diabetes. At time of diagnosis & since he became a teenager I wish it had never happened or that I could keep him at the age I was able to manage him fairly easily. I tell myself that someday I will not feel that way. He too will find his rhythm, as I did, living with T1 diabetes. I don’t think there is a parent out there that can say that their family, them or their child is better off because of having diabetes.

My Mom’s perspective? Now that she knows I take great care of my diabetes & have a career that I love as a result of it she doesn’t worry as she did years ago. With that being said, I know she still has this ‘old’ diabetes mindset that one day I will announce I have kidney failure or I’m going blind. But as each day goes by I know she sees this will not happen…not in this day in age.

Being “Normal”

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What does every parent want when their child lives with Type 1 diabetes & it’s any special event whether it be Christmas, Hallowe’en, Birthday Parties or Easter? To portray it’s the one of the few times of their life they can enjoy what everyone else does. Well, sort of. But that’s the best we can offer, right? Do they remember or know any different? Kurtis never told me so. I don’t remember so.

From the ages of 8-11 I don’t remember what I did with Kurtis at Hallowe’en. That was the time when he took multiple daily injections. Life was a whirl wind. I worked shift work at the hospital. My whole life evolved around my children…I worked my job, my health, my diabetes…everything around the kids. I was a single parent a lot. I didn’t have a team mate I could pass the baton to & ask to take over. My focus consisted of; were the kids fed well, did they have lunches packed for school, were they doing well in school, were Kurtis’ blood sugars okay, what did I need to do make them ok, appointments for his diabetes, making sure Cayla didn’t feel like Kurtis was the centre of our family because of his diabetes, what did the kids have for homework, hockey, figure skating, testing Kurtis’ blood sugars day & night to keep him safe, setting my alarm to check him, arranging care for the kids for the few times I wasn’t there, making sure the people caring for him understood what to do with his diabetes…you get the whirl wind?

Do I remember what I did for Hallwe’en on injections? Vaguely. I know for a fact I would have kept his candy intake balanced so that his sugars weren’t crazy for days. I vaguely remember letting him pig out the night of after he returned from collecting his stash..to an extent. Then going forward matching meals with treats to keep it balanced.

Once Kurtis was on a pump, I was not so concerned. My mindset was eat it all sooner then later so that we have 1 week of craziness then 3-4 weeks of drawing it out & really messing things up. The bonus was he could put the carbs in his pump & burn it off with activity. I was lucky because Kurtis only liked certain candies. The rest he would never touch.

Christmas stockings & Easter hunts involved a lot of non-candy things from Wal-Mart & the dollar store. I kept it the same for both. The kids never said to me “where is my candy” or “why don’t get as much candy as the other kids”. I remember as a child living with Type 1 finding a brand new pair of running shoes (which I needed!) hidden for Easter! I was SO excited because they were the cool pair I wanted! You can’t substitute candy for something so wonderful as that!

Creativity & letting normalcy rule within the boundaries of keeping your child safe, is essential to an enjoyable, stress-free Hallowe’en.

An Unexpected Anniversary

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An Unexpected Anniversary

October 30, 2000 I am in the kitchen baking up Halloween treats for the kids Halloween parties at school. I loved these moments. The excitement, the energy, the creativity. Halloween was so much fun.

But…that day transitioned into a life I never thought I would ever entertain on October 31, 2000. That was the day I learned I would become the parent of a child with Type 1 diabetes.

On the morning of October 31st I got the kids ready for school. I packed the plastic containers with Halloween baked goods & saw them on the bus.

That afternoon as the kids unloaded off the bus & I walked them in the door asking how their day went & how their Halloween parties went, Kurtis say’s the words a parent does not want to hear.

“I didn’t eat any treats today because I felt sick to my tummy & drank & peed all day.”

I felt the energy drain out of my body. I didn’t even have to test him. I knew.

I asked Kurtis if Mommy could poke his finger like Mommy does to test her sugar. He flat out refused. I was on my own so did not have the help of another adult to convince him otherwise. Luckily I happen to still have Keto-Diastix in the bathroom. After I dipped & confirmed what I already knew with 4+ sugar & negative ketones, I placed the call to my GP’s office. He reassured me that based on the fact he had no ketones, take him out for Halloween as usual but don’t allow him to eat any treats loaded with sugar & bring him in first thing in the morning. At that point we would begin the transition to insulin with education to be a parent of a child with Type 1 & subsequently living with it.

Initially, the next 2 nights were the hardest. Halloween involved me trying to portray it was a normal night out with the kids trick or treating. With the exception that my 7 year old baby had just learned he had diabetes like his Mom. He would have to take needles & poke his fingers & have low blood sugars that didn’t look nice. As we walked up the road, from house to house, Kurtis would throw himself on the side of the road belly first & wail “I don’t want diabetes” or “I hate diabetes.”. I would leave him briefly then say as I tried not to cry “Okay Buddy, l know it sucks. Let’s go to the next house & trick or treat.” I honestly didn’t know how else to be. I knew he had to grieve even though it was about something he didn’t quite understand in it’s entirety but knew starting tomorrow he would begin to learn the essence of what living with diabetes was about. He only understood the external ‘bad’ things with diabetes….severe lows, needles & finger pokes. He didn’t yet understand the other side….how he’d feel being low, high, going to the Dr’s the next day to have blood drawn or the complexity of counting carbs, the demand it would have on his body & mind 24-7-365 & the ridicule he would receive at school for years to come.

The next day was emotionally distressing for both of us. I was the only parent present. His father refused to come home from out of town to support this critical event or his family.

While Cayla went to school, Kurtis & I made our way to the GP’s office. After a lot of coercion we finally tested Kurtis’ sugar by finger poke to determine his fasting sugar was 13.5 mmol/L. I blamed myself. I felt guilty. What have I done to my child?

The GP called the Paediatrician’s office & the hospital to arrange an appointment at the Adult Diabetes Clinic as there was no Paediatric clinic at that time.

We knew the Paediatrician from 6 years prior when Kurtis had an anaphylactic reaction to Benadryl & severely ill with chicken pox in which he almost died at the age of 1. We chatted briefly & said to me…”Mom, you have Type 1 & you’re a nurse, you know what to do. I’d rather not put him in the hospital so here’s the prescription for the insulin.” He gave me the dose to give him & sent me off to the hospital to learn how to carb count.

Once at the hospital I sat with the dietician as she taught me how to carb count. The entire visit Kurtis had marker in hand. Standing in front of a flip chart he wrote time & time again in big 7 year old letters “I HATE DIABETES” “I HATE DIABETES” “I HATE DIABETES”. It hurt so much to watch but I knew it was good for him to get it out. Me? I was on robot mode. Survival. Take it in. Learn it. Function. Sacrifice emotion for taking good care of my baby. Helping him through this time so that he accepted & transitioned into such a terrible diagnosis.

Once home, I explained to Cayla what had happened during that day. She was 9 & a mature 9. She grasped it fairly easily & knew she had to step back & let me care for Kurtis for a little while. Closing into supper time I explained to Kurtis that just like Mommy he will test his blood & take a needle. That’s where it didn’t go so well. Testing his sugar was a bit of challenge but doable. He tested at 32 mmol/L. I explained to him that he really needed his insulin to bring his sugar down as I didn’t want to have to take him to the hospital & have someone else do it. He didn’t care. He just didn’t want the needle.

After about an hour of trying to convince him, going into another room & having a little cry on my own, I called my Mom. Knowing she had been through worse then me with my diagnosis, I asked for her help. When Mom arrived my head was spinning, Kurtis was crying & Cayla was trying to keep the calm in a whirlwind of frenzy. I was also angry because his father wasn’t present in a time we all needed him.

In my mind I can still see Kurtis sitting on the kitchen chair on an angle from the table explaining to me in tears how he doesn’t want the needle & his rationale as to why he doesn’t need it. His eyes swollen with tears pleaded to me & it broke my heart. Thankfully my Mom had already been through the heartache of my diagnosis at age 5. She had raised a child with Type 1.

In her calm, she finally convinced Kurtis to let me inject in his arm.

After I got the kids settled to bed, I cried & cried. I felt it was my fault. I caused this.

How did I move forward? My Mom asked me a question that changed my attitude which helped me transition to a Mom accepting she has a child with Type 1 diabetes. “Would you have had him if you knew he would get Type 1?”

No regrets. It sucks but attitude & the choice to transition to a new life is essential to living life with Diabetes Beyond Borders. This year is another Diabeteversary. October 31, 2013 Kurtis has lived with Type 1 for 13 years. The transition continues.

Trick or Treat

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Trick or Treat

October 31st is a significant day for me. I have 3 major memories that I associate with this day.

1. Going out for Hallowe’en as a child living with Type 1 diabetes.

2. October 31, 2000 is the day I dipped my 7 year old son Kurtis’ urine to discover he had 4+ sugar and thankfully no ketones but knew he had developed Type 1 diabetes. I dipped his urine as he refused to let me test his sugar with a glucose meter. I had poked his fingers 2 years earlier and knew this day would come.

3. I became a parent of a child with Type 1 diabetes trying to figure out how to let him enjoy going out for Hallowe’en without allowing his blood sugars to go askew.

This Blog is 1 of 3 parts sharing my experiences with October 31st.

Part 1:

When I was a child there were no pumps, rapid acting insulin or carb counting. My Mom did not have the technology at her finger tips to count carbs, push a button &/or inject & eat the treats. For the first few years, my Mom & Dad would take me out for Hallowe’en. They would use the bag of treats for when I had low blood sugars. I don’t recall having them as a random treat.

I don’t recall how old I was but I was under 10 when there came a time my parents figured I would be old enough to keep the bag of Hallowe’en candy in my closet. They told me I could keep it in the closet in my bedroom on condition that I tell them when I felt “funny” so I could dip my urine…yes…dip my urine!! to test to see if I was negative (a possible low). Then I could ‘treat’ with my treats.

I recall trying to have self control but what child under 10 can keep a bag of candy in their closet & not eat it at will? I understand why my parents did what they did, they wanted to try and incorporate some normalcy for me. They felt by doing this it would help me feel included in choice.

What happened? Each day when everyone was busy I would sneak candy. How did I get caught? My Dad was an avid runner. He always chewed gum when he ran. One day he went to go out for a run and realized he was out of gum. He came to me and asked to take some gum from my Hallowe’en bag. I still remember the panic. I felt horrified. The bag was full of wrappers but nothing else.

Little did I know that my Mom had been perplexed for weeks wondering why my urine was dipping positive for high sugar. After trying to avoid my Dad from going into my closet to get my bag of stash that no longer existed I knew the jinx was up.

I stood there with a full body panic as Dad looked into my bag. Dad was pretty cool. I do believe in that moment in time he knew that him & Mom shouldn’t have allowed this to happen. It was explained to me the implications of what happened to my sugars as a result of my choices. Mom was relieved because now she knew why!! Two very important lessons I learned and interestingly will never forget.

What happened with subsequent Hallowe’ens? It was actually pretty cool! Mom, Dad & I with my little sister & brother would go through our stash as most do. When we did, Mom, Dad & I would negotiate the price of my stash. It was a game. With that money I was allowed to go shopping for my own treats. Off to the local convenience store I would with my $1-$2 and go buy whatever sugar free treats that were offered.

I don’t feel like I missed out. Not once.

Stay tuned for Part 2.

How Green is the Grass?

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How Green is the Grass?

This pic is where the movie Laura Croft Tomb Raider was taped. We were there when we visited Ta Prohm at Ankor Wat in Cambodia. I’m a big Tomb Raider fan. it was pretty amazing to be where it was filmed. The tree you see in the pic was jaw dropping. It was also amazing to think that something with such grandiose roots, reaching for the sky could survive in such barren conditions. It seemed it was in a totally foreign environment in which it needed to survive, yet it thrived & boasted so with its huge roots.

Thinking about that tree I reflect back in time. I remember being a “Diabetes Consultant” i.e. a sales rep for Novo Nordisk Inc. I fought hard to get that position. I knew I was fortunate to be there. I also was confident I had the passion to move it forward & benefit others, namely Health Care Practitioners. My goal was to influence so they would improve the lives of those living with diabetes en masse. I wanted to change the world of diabetes. I had been on the other side working in I.C.U. & I wanted to stop the madness. I believed that the best way to make that impact was in this way. Because I believed so passionately & so deeply about ‘my’ cause I passionately believed Novo Nordisk’s products were the best out there. No other pharmaceutical company selling insulin, pen tips, insulin pens or Type 2 oral agents could have a product as good as the one I sold. Their pipeline & success was overwhelming. Based on my steadfast belief & guidance from those who taught me to sell, I learned to sell & I sold well.

Did I sell like a pharma rep? I have & will maintain I didn’t. I had a hard time asking for the business, closing the sale. Instead, I believed through building relationships, earning trust & education inadvertently I did sell. When I left the company I was vying for 1st place out of 65 reps in less than 5 years. When I began the territory I looked after was flat lined, when I left it was growing in double digits. I steadily climbed the ladder of sales success. My drive wasn’t because of the money or recognition. Why did I ‘want it all’? Because I wanted to tell others that I succeeded based on building trust, relationships AND most importantly educating my clients with passion because I believed. I believed in the best for people living with diabetes & I wasn’t afraid to say so. My clients reassured me voluntarily they heard me loud & clear & I lead them to believe. They wrote the products I sold because they trusted that I would provide for them what was needed to take care of their patients living with diabetes. I would give them the information they needed to help them empower their patients.

Little did I know I was establishing my diabetes roots & standing out in an environment that is tough to penetrate. I was often asked why I wasn’t a diabetes educator. I just couldn’t envision myself doing it. I liked the rush of sales & the impact I made. I loved the relationships I had. I could walk into clinics & see Docs that other reps couldn’t. I didn’t think there was anywhere else I could make such a huge impact.

After my tenure with Medtronic, I honestly didn’t know where I belonged & believed exiting the diabetes world may be best for me to take care of myself & my family. What I learned was, when the roots are deep, it’s really, really hard to transplant somewhere else.

Seven weeks today I have been a Diabetes Nurse Educator at the most amazing clinic for Type 1’s. I don’t know of any other like this. As I said, first, I didn’t think I’d ever be an ‘educator’, which now I see I always was. Secondly but most importantly & the reason for this Blog is the deep roots I have established with the relationships & trust I developed over the past 9 years. All of these things have brought me to where I needed to be. Many I work with were my pharma clients, now they are my colleagues.

The greatest thing I have learned in the last 7 weeks? For all the products; insulin, meters, insulin pens, pen tips & pumps….my passion for certain products has dissipated a lot. I have realized & I have preached it…each persons diabetes is unique. It is their own. The product needs to chosen for the lifestyle of the person living with diabetes…not the other way around. I sit at my desk listening to my patients & I ask…what tools & education can I share with you to empower you to live with your Diabetes Beyond Borders?

The roots just keep getting deeper.

Losing and Loving It

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Losing and Loving It

Eden is SO busy!! This incredible young lady has energy abounding!!

Only a few days from the finish line of finishing her University Education, she has her nose to the grind. BUT….she has made the time to share with us more of her tips & tricks on her journey to losing weight in a healthy way while living with Type 1 diabetes.

Here is some more insight & inspiration….thank you Eden!!

“Hello Everyone,

Since I had an eventful couple days, I have not been able to post (after Saturday you will get one from me daily I promise!) So I weighed myself today and I lost 1.5 pounds….after a major plateau for a couple weeks and I am finally 172 pounds!!!!! SO HAPPY! Let me tell you I am learning a lot from about my own body on this journey!

I even learned a couple things this week.

First thing, I learned that cutting your sweetener intake ACTUALLY reduces your waist line. Now I am sure most of you use Splenda on EVERYTHING…believe me I did. On average I would use anywhere from 3-12 packets a day. In the last couple of months, I have been losing weight one week and having a plateau for 4…but as soon as I started using Truvia (Stevia) and using 1 Splenda with it, I started to see a change again. So if you can mix the Stevia and Splenda up, or just use Stevia.

Second thing, cheat days! Now lets talk about those glorious days ha ha. I follow a program where I do not eat very much gluten, and I eat 2 carb choices a day (these are usually a grain or sweet potato etc). On my program I should not have cheat days, and most people say it’s a lifestyle change and you can never have another regular cookie again. YEA RIGHT! For me (like today) I need a day sometimes to give my body something it wants because it makes me follow my program and see progress. Today I had 3 carb choices, a piece of cake and a small brownie (a bit too much sugar, but oh well). I NEVER have this every single day, and I haven’t had this much since Christmas. You do not gain all your weight back on because you had one bad day. You gain weight because you are not eating right the rest of the time. So if you splurge, do not quit! Get back on that horse the day after!

Third thing, people are so uneducated about Diabetes. Yet again in my town, I was taking insulin (by pen) in my stomach before I had my lunch on Friday…and someone came over to me and asked why I was doing a needle in public (I have actually been asked this a couple times). I explained I was Diabetic thinking she was curious, so I explained it further. During the first couple seconds of my speech, she looked like she wanted to hit me! After my speech she apologized, and thought I was taking a form of illegal drug in the local coffee shop when her child was present. I was like nope and kind of laughed it off, but I was shocked! I also have had the stupid arguments with people I know who were trying to educate me about my own disease saying it’s because I was overweight and ate too much sugar….Anyone else have this? Yes I could slap these people. If you have friends and family who know you have diabetes, maybe start educating them so they can educate others!

Sorry I had a long rant today HAHA.

Eden”

Link

Loss of Control – How Do We Regain It

I urge you to read the link I have attached.  Although it is from the Canadian Diabetes Association, I have read many links which involve Diabetes Associations that exist around the globe.  It seems on paper the protocol is in place if the school board or district is agreeable to implement & support.  Every parent past & present that has a child with Type 1 fight to keep their child safe at school.  The fact that our children are not viewed as ‘in need’ of special care in their daily management of diabetes at school is preposterous.  Every diabetes organization is posting guidelines & lobbying for change but it is happening too slow.  While school boards fight to keep their budgets or manage with less, our children living with diabetes’ risks of adverse events occurring is higher.

Examples to support the lack of guidelines & the situations Kurtis met as a result:

1.  In Grade 5 his class is in a portable.  Soon after the school year starts, Kurtis comes home to tell me during class that day he feels like he is having a low blood sugar.  He tells his teacher.  He tests & confirms.  The teacher sends him by himself out from the portable into the school to the office to get a juice box.  He tells me he is scared.  Two issues:  there are juice boxes in the classroom AND most important, she sends my scared son BY HIMSELF outside to enter the school & walk up a long hall & a set of stairs to treat himself for a low blood sugar.  What if he didn’t make it?

2.  In this same class, it is the middle of winter.  A similar event occurs.

3.  I discuss with the teacher the concern.  She explains she can not expect a student to go with him as they need to be in the class to learn.  She offers she can not leave the class to go with him & leave them on their own.

4.  I discuss my concerns with the principal.  She meets with the teacher & enforces a student needs to go with Kurtis when going to the office for a low…IF….there are NO juice boxes in the classroom.

5.  At one point, Kurtis has a severe low at school.  I meet with the principal & discuss options of having Glucagon for treatment if he becomes unable to take treatment orally.  She informs me the school board will not allow her or the staff to inject Glucagon.  I ask if children that have severe anaphylaxis to bee’s & peanuts have Epi-Pen’s at school?  She says “yes”.  I ask if the staff are allowed to inject the Epi-Pen if such an event occurs. She says “yes”.  I point out to her that both events need life saving injection of a drug.  She counters that she can call an ambulance with Kurtis & by the time they get to the school he will be okay.  I was furious.  How do you educate someone who is such an imbecile?  So stuck on the rules that they won’t consider a child’s life could be at jeopardy?

How did I deal with this?  I made myself on-call regardless whether I was sleeping from a night shift.  If I was working a 12-hour day, I was fortunate my parents were on stand-by.  I made it clear that the school was not to call 911 first (as the school was in the country), they call me.  I knew I could make it to the school quicker than the ambulance could.

Thankfully, with regards to his diabetes, nothing serious happened.

I am not sure how to make an impact to sway school boards to start a standardized protocol that allows for a budget for help in overseeing glucose testing, injecting & bolus of insulin, eating the correct food & bringing attention to the proper person the needs of a child with Type 1.  I do suggest lobbying & pressure by our local diabetes associations as well as supporting them in their campaign is instrumental.  Many voices are louder than one.  I urge you to take part.