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.

Gaining Perspective

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Gaining Perspective

This is me at age 8. It was 3 years after being diagnosed with Type 1 diabetes. I am standing at the entrance of Camp Huronda, a summer camp sponsored by the Canadian Diabetes Association for Type 1 children & teens. It was the first time away from home longer than a day since I was diagnosed with diabetes & hospitalized for 10 days in 1975. I learned to inject myself with insulin within a few days of being at Camp Huronda. From that day forward I didn’t want anyone else injecting me. I liked that I could control how my injections felt & when the needle was going in.

Fast forward to 1987. At the age of 16, one morning my Mom finds me in bed, unresponsive, laying in my vomit. After calls to my Paediatrician & attempts to give me fast acting sugar with no success, my parents rush me to the hospital. The things I remember of that morning are Dad standing me in the snow in my bare feet to get me into the car as I refused to, seeing my church as they drove by it & watching my Mom cry at the foot of my bed in Emerg. A few days later as I lay in my hospital bed I noticed that the nurses caring for me didn’t know a lot about diabetes. I mentioned this to my Mom. To this day it seems almost unbelievable to think my Mom prophesied my future career without knowing how big of an impact I would make in the world of diabetes. When I told her my thoughts, she said to me, “You can change that. You can educate them so they know.” She encouraged me to go into Nursing.

If you go back to several of my Blogs you can read about the many experiences I have had living with diabetes & being a parent of a child, teen & now young adult living with diabetes.

Fast forward to 1999. After working in a Licensed Daycare as the School Nurse & caring for 2 children with Special Needs for 2 1/2 years, I decided to start a Home Daycare so I could be home with Cayla & Kurtis. Within 6 months I had a ‘full house’. It was a very busy time but I loved that I could be home for my children & create a home atmosphere for the little ones who couldn’t be home with their parents. Once Kurtis started Grade 1 I felt it was time to gain some hospital experience. While running the home daycare I completed my Critical Care Certificate. Working at the daycare & running the home daycare taught me so many things; time management, communication, creativity, nutrition, working with Special Needs, how to be calm when chaos is all around.

I still remember my first interview at the hospital. The 2 managers interviewing me mentioned I didn’t have any experience. I asked them how was I going to get experience if they didn’t hire me? I surprised myself that I asked them that question. I wasn’t one to challenge anybody. They were surprised too. That got me in.

After several years of working in several areas at the hospital & particularly the Intensive Care Unit, which I loved, I didn’t like the fact I was caring for people with complications, mostly from Type 2. There was one patient who died from complications of Type 1. It devastated me. She wasn’t much older then me. My colleagues would ask me certain questions about diabetes. I liked that. It didn’t take long for me to realize I was at the wrong end of the diving board. My time in ICU was invaluable. I learned time management, critical thinking, stamina, diplomacy, focus, patience, perseverance, when it was the right time to cry when I lost a patient & when I needed to hold back my tears,. I also learned that there are times that the truth needs to be told no matter how hard it is to hear. Working in ICU made it very challenging for me to keep my sugars in check. A critical situation would drive them sky high & a missed break could bring me low.

In 2002 I attended the JDRF Walk For the Cure. To this day, I don’t know what possessed me to do what I did. Kurtis & I used a Lifescan glucose testing meter. I heard there was a new one on the market & I wanted one for each of us. I walked over to the Lifescan booth & began talking to the rep. He gave me 2 new meters. After a few minutes of conversation, my mouth opened & without plan or thought I asked him if his company was hiring. Huh? What did I just do? It just so happened that he was being promoted & his position was opening. WHAT?!? Timing is everything they say. So it was with this as well. The interview process went smoothly, the offer was ready to be presented when an internal applicant surfaced. As with most companies, he was given the position. How did I feel? I was okay with it. I didn’t think it was the right time. The kids were still young & I had a great job-share position that was flexible with shift work. It worked for our family at the time. The Rep I met from Lifescan told me he would keep me connected & that he did. My foot was in a door I didn’t even know existed.

In 2004 I ended up with one of the best jobs I could ever imagine having. I became a Diabetes Consultant for Novo Nordisk. It was one of the hardest but most rewarding jobs. I learned Type 1 & Type 2 diabetes inside out & backwards. The company kept me current in Clinical Studies & relevant literature. What I liked most about it was meeting Family Physicians for the first time & them telling me they don’t ‘do insulin’. Several years later I had these same GP’s thanking me for teaching them & how much easier it was then they thought. Through out my years at Novo Nordisk my Mom’s words echoed in my mind several times. I educated Nurses, Dieticians, Doctors, Pharmacists and Nurse Practitioner’s. I did business on all levels of health care including hospital contracts & nursing homes. Working at Novo Nordisk helped me learn time management, business planning, triaging, focus, drive, passion, knowledge about every insulin available on the market, knowledge about every oral anti-hyperglycemic agent on the market, every insulin pen, syringe & pen tip available & it’s implications on therapy.

One of the most difficult decisions I ever made in my careers was leaving Novo Nordisk to work for Medtronic. It provided me an opportunity to expand my career, work experience and meet more Health Care Providers working in the field of diabetes. It was a short tenure as Medtronic decided to restructure the Corporation both in the U.S. & Canada. I was one of ~ 100 in Canada who lost their jobs as a result. Being a Territory Manager at Medtronic taught me many skills I needed to become better at or hadn’t experienced. It was a valuable experience despite the outcome. I learned about all of the insulin pumps provided by the medical device companies. I got to know Pumps & Continuous Glucose Monitoring really, really well. Little did I know how much of an advantage that would be. I worked within a team of 3 & communication was essential to follow up & close each sale. I learned how to work directly with the consumer & their needs. Though out the years I learned how to read body language & verbal tone very well. It took a long time but I learned to listen to my gut. For the most part it was right.

After I lost my job at Medtronic, I decided I wanted to leave the world of diabetes. I didn’t know where I wanted to be. I was certain I didn’t want to be an educator. I couldn’t see myself sitting at a desk staring at someones blood sugars, listening to their excuses. Why did I have this perception? I have thought about that a lot. How could I think like that given I live with diabetes? I think that in my mind a diabetes clinic consists of Type 1 & Type 2 together, intertwined…somehow connected but shouldn’t be. I didn’t want to educate like that. They are 2 different animals & so they should be treated as such. It wasn’t the patients fault I felt like that, it is how clinics are structured that frustrates me. So…I went out on my own as an educator & consultant through my company “Diabetes Beyond Borders” to change that. As a result Diabetes Beyond Borders has over 6,700 ‘likes’ on Facebook. I became a Certified Pump Trainer for Medtronic & Accu-Chek. I had a contract with a large on- line pharmacy in which I created marketing materials, provided education on insulin pump infusion sites & cartridges.

I have applied & been through several interviews for diabetes sales jobs. I would’ve taken them if they were offered but I just didn’t feel it anymore. What was I meant to do? Where was my passion?

A few months ago I was invited to a conference. It is called Type 1 Think Tank. It’s mandate is to more or less “think out side the box” to provide better care & outcomes for people living with Type 1 diabetes. I didn’t realize I was that important! I didn’t realize my experiences were so valued. At the conference I met a long time friend & colleague. She is the founder of the Charles H Best Diabetes Centre. I called on her clinic as a Diabetes Consultant & Territory Manager from 2004-2009. My son Kurtis went there briefly after his diagnosis in 2000 before a Paediatric clinic opened closer to home. The founder, Marlene, approached me and asked if I would be interested in a position as a Diabetes Nurse Educator. I never turn down opportunity but I was pensive given it was a 2 hour/day commute & I would be ‘stuck’ inside 4 walls 8 hours/day.

As soon as I sat down to the interview I understood why I had experienced so much throughout the years. This is exactly where I needed to be, where I want to be. I just didn’t know it. I have travelled down a road of learning & ultimately making an impact though all levels of diabetes. It was time to share those experiences with the people that really, really mattered. It was time to share my experiences with the children, teens, young adults, adults & their families living with Type 1 diabetes.