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.

Never Prepared

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Never Prepared

In all the years the kids were in primary and yes, even high school, I only missed one year of their first day of school. In my mind it was a given I would be there. I had to be there so I could take, what would become, the “First Day of School Picture”. It was very important to me and I felt for them, to be there to tell them to ‘have a good day, be safe, I love you’, giving them hugs and kisses before they got on the bus. The picture I took each year measured many things. Growth, happiness, anticipation, excitement, love, memories, health. I wanted to make sure the kids knew that school was a big deal. It was a positive place to be. Learning at school was as important as at home. This is a pic of Cayla, 9, and Kurtis, 7, in September 2000. Today I showed Kurtis the pic. He tells me he doesn’t like the picture, he thinks he looks like a geek. :p

In this photo, Kurtis is less than 2 months away from the day he was diagnosed with Type 1 diabetes.

Not knowing the ‘stats’, from the time my kids were born, I kept an eye on how much they drank, peed and gained weight. It didn’t occur to me to look up the ‘stats’ on being a Type 1 parent and the chances of ‘passing’ it on to my children until after Kurtis’ diagnosis. According to the American Diabetes Association, the stats read like this:

Both parents (neither have Type 1) have inherent risk factors that contribute to a child developing Type 1.

A child with a Dad living with Type 1 has 1 in 17 odds of developing Type 1.

A child with a Mom that had him/her before the age of 25 has a 1 in 25 chance of developing Type 1.

If Mom has her kids after the age of 25, the odds go up to 1 in 100.

A parent diagnosed with Type 1 before the age of 11 provides a risk of double that their child will develop it.

Regardless of the stats, in my gut I knew. I spoke with other parents who live with Type 1 diabetes that have the same worries as me. But is the effect of the diagnosis the same as a parent that has no idea until diagnosis that their child may develop it?

I try to put myself in my parents shoes as neither one of them have Type 1. Now mind you it was 1975, but hear me out. I am imagining myself as a parent living without Type 1 who has a child that is diagnosed with Type 1. The ‘radar’ saying “I will keep an eye out, just in case.” doesn’t exist. When that day comes. When my very sick child is before me and the Doctor tells me that he/she has Type 1, finally, because heaven knows in this modern-day of technology and knowledge it seems the awareness of signs and symptoms among many health care professionals still does not exist. I am told he/she will take injections of insulin to sustain them for the rest of their life. My mind would spin. I envision myself being whisked off to the hospital or clinic with my very sick child where I would be expected to take a crash course on how to keep my child from having lows so severe they could die and highs so high they become very sick with ketones with the risk of developing long-term complications, possibly dying from these complications. I would be expected to learn how to titrate a medication that is life saving but can cause death if not treated with respect. I have to learn how to poke my precious child with a sharp needle not once a day but several times. What are kids most fearful of? Pain. What do glucose tests and needles cause? Pain. What does a parent try to protect their child from at all costs? Pain.

I can’t tell you it was easier for me. If it was, it would be difficult to relate to the feelings of a parent not living with Type 1 prior to their child being diagnosed. I was ‘blessed’ to have more experience and knowledge. That’s all. At the end of the day, I am a parent first.

Kurtis’ ‘road’ to his diagnosis began 2 years earlier. He was 5, the same age when I was diagnosed. On one particular day he seemed to be drinking and peeing more than usual. I don’t know how, as he was my strong willed child, but I convinced him to poke his finger without much fuss. His blood sugar 2 hours after he ate his meal was 8.2 mmol/L (148 mg/dL). My jaw dropped. My stomach flipped. I called the Family Physicians office immediately. The receptionist told me to check his sugar after having him fast 12 hours. Now, I do have to say, this was not funny at the time but as a parent and now that I speak of it, it is. 16 hours later, I finally promised Kurtis I would take him to McDonald’s. I never took my kids to McDonald’s!! I was SO desperate & scared, I promised if he let me poke his finger I would buy him a McHappy Meal. He agreed. It is now 10am!! He must’ve been starving! Kurtis’ sugar was 4.8 mmol/L (86 mg/dl). I called the Physician’s office to report back. I wasn’t convinced that this made it all right. I had that gut feeling a parent gets when they “know” something isn’t right.

Fast forward to September and October 2000. From the time Kurtis was a baby he had a history of ear and sinus infections. He lived with one ear infection after another. From one sinus infection to another. He would finish one round of antibiotics and would be onto the next.

As usual, Kurtis had a healthy summer. On the first day of school, as pictured, he seemed great, looked healthy. Once exposed to the school environment of germs, sneezes and coughs, his health slowly declined to a point I knew he was going to be sick. Dark shadows under the eyes and very pale. I would keep him on a tight schedule of bedtime and keep him fed well with healthy, home cooked meals. It didn’t seem to matter.

But, this time was different. Kurtis had that ‘look’ I was familiar with. I was perplexed, he wasn’t getting sick. At that time, for his age group, track pants were the fad. He was always a big boy. Always in or over the 90th percentile in height and weight for his age. When he had a growth spurt he would get chunky and stretch up. Being 7 years of age, I didn’t weigh him often or become concerned if he thinned out a bit.

October 31, 2000. I had sent Kurtis to school with a plate full of treats for his classes Hallowe’en party. As well as making a point of being there in the morning to put them on the bus, I tried my best to be there to see them come home from school as well. As Cayla and Kurtis walked in the front door, I was excited for them. I looked forward to carving their pumpkins and get dressed up for our night out Trick or Treating. As I prepared and fed the kids their after school snack, in the conversation of asking how their day was, Kurtis’ informs me that he didn’t eat much at his Hallowe’en party because he felt sick to his tummy and peed and drank at the water fountain all day. I wanted to throw up. I knew. I didn’t even have to check him to know. But of course, I did.

After explaining to him my suspicions and what I needed to do to confirm, come hell or high water, Kurtis was not going let me check by finger poke. I did a dipstick of his urine. I wanted to cry. The test strip showed 4+ sugar. It was 4:30pm. I called the Family Physicians office again. In the background I could hear Kurtis crying “I hate diabetes” “I don’t want diabetes”. This time I knew it wasn’t going to be instructions to check his fasting. In my mind at that time, all I could think was, I GAVE my baby diabetes.

I believe my emotions with Kurtis’ diagnosis may be a bit different, but not much then parents who don’t have diabetes. In the end, I have come to terms with the fact, it doesn’t matter. It is what it is. BUT, with that being said, and why I write this post is that there are two things I learned that I want to pass onto you. Whether you are a parent that has ‘passed’ on Type 1 to your child or parents that carry those dreaded inherent genes that we know little about ….

1. I cried to my Mom many times about the fact I ‘gave’ Kurtis diabetes. I felt SO guilty!! Being the amazing Mom she is, do you know what she asked me? “So, if you were to chose whether you had Kurtis or he had diabetes, which would it be?” OH MY!! There is no choice! I would have him a thousand times over!!

2. A year later of Kurtis & I grieving (separately mind you, he never saw me grieve) he would sit on the couch trying to inject himself (he insisted) for a minimum of an hour morning and night. I would listen to him cry and wail about how much it hurt and he can’t do it and he hates diabetes …so painful to watch. I finally realized I was enabling him to be pitied for something he had no control over. I don’t believe in enabling people to be pitied. I then realized I needed to empower him. I told him he had no choice. I told him it sucked living with diabetes BUT he could do whatever he wanted to do! I asked him if he saw me wailing and crying over taking my needles? Did he see me feeling sorry for myself? I told him I would no longer tolerate pity. He could share his feelings but could not use his diabetes for pity.

Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future. Nelson Mandela

Yesterday and Today

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Yesterday and Today

In 1975, I was diagnosed with Type 1 diabetes after months of my Mom telling our family doctor something was really wrong.

He insisted it was a cold & I would recover in time.

Finally, after several months of symptoms such as wetting the bed at night (after having been toilet trained for years), having to pee before we got to the end of the driveway for a walk, weight loss (my Mom says my ribs stuck out, she thought when she picked me up she would break them), extreme thirst & sitting on the toilet crying because it burned so bad when I peed, my Mom felt relieved as she thought she knew what was wrong…. I had a bladder infection.

After the refusal of our family Doctor to see me anymore and upon the firm insistence of my parents, I was finally seen by another Doctor. When they dipped my urine for an infection, instead, they found large amounts of ketones. I was rushed to the hospital. I was also diagnosed with Whooping Cough. I was hospitalized for 10 days. Back then my Mom couldn’t stay with me overnight. I still remember that stay. It was very traumatic. I missed my Mom so much. I hated when she left each night.

I was just weeks shy of my 6th Birthday & weighed a mere 31 lbs (14 kg). I was started on 1 injection in the morning of Lente & Toronto insulin. Both insulins were unpredictable. The needle length went into my muscle instead of my subcutaneous tissue making the unpredictability worse, but there was no one then who was aware that a 13mm needle was too long for anyone, big or small. My Mom tested my sugars by urine through a dipstick. The goal was to have a dipstick with Trace sugar & no ketones. I did not receive my first glucose meter until I was 11 based on the cost which was about $200.

Based on my diagnosis, experiences, changes & the management I have experienced throughout the years, I am thankful for so many things:

1. My parents were told I would never have children. Although at the time I announced my pregnancies there was a lot of worry, I successfully have had two pregnancies (although very challenging) & two beautiful children.

2. I am blessed to have no complications after 37 years, which is rare.

3. I am living in a time where the technology advances in managing diabetes are becoming available faster then we can acquire them but provides the opportunity to get access to & manage it better.

4. We seem to be closer to a technology that allows for less management on our part & the reliance on bio feedback mechanisms that will reliably do most of the work for us.

5. Pharmaceutical companies that create, manufacture & produce insulin, such as Novo Nordisk Inc., are creating programs which offer easier access to children living with Type 1 diabetes living in developing countries that otherwise would not have it and risk dying due to affordability & access. Much still needs to be done about this (one of my passions) but the movement by corporate has started to fill this huge gap.

6. The choices and dissemination of media communication and access is the forum for supporting curiosity, access, acquisition of knowledge and action with regards to living with diabetes. This is essential to empower people living with such a complex disease.

7. I have been blessed to be part of a network with many gifts, experiences & an education that enables me to practically & clinically share with each of you, no matter where you live, what is needed to live with Diabetes Beyond Borders.