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.

Why?!?

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Why?!?

Did you ever go to bed with a normal or near normal sugar but wake up the next morning high? You increase your insulin or talk to the doctor about it & he raises your oral diabetes medication & it continues to go high. Why?!? What is going on? Among the many frustrations to experience, what appears a simple fix becomes a complex mystery.

Kurtis is in Grade 7. It is about late September. During that time, as most kids are, he is very active, back to school & still not ready to harness the energy he had from summer holidays. He plays football with his friends at every recess. He plays hockey in his local league. At that time he is in power skating to ante up his hockey skills for the upcoming season, with the primary reason to keep him active. When he isn’t at hockey after school he is outside jumping on the trampoline or catching frogs. Aside from sitting in a classroom his days are full of activity.

During that time Kurtis is on insulin pump therapy. It is very easy to manage him on this. Predicting trends in blood sugars is easier than injections. Between decreasing basal rates & temporary basal rates, I feel I am in control of his active lifestyle.

Within that time, there is a period of weeks where Kurtis is going to bed within the safe target for his age but waking up high. I automatically assume he is growing & needs more insulin. What does any parent do? Increase the overnight dose.

With Kurtis being on an insulin pump, I don’t feel the need to set my alarm every night to check him. If there are days where he is having multiple lows, I set my alarm to make sure he doesn’t have more through the night. Otherwise, I feel confident sending him to bed at a target blood sugar, he will wake up within a reasonable target in the morning.

One morning this is not the case.

At that time I worked for Novo Nordisk. I put in an average of 50-60 hours a week. I did a lot of driving. Working as a full-time Mom in a sales career, living & managing my own Type 1 diabetes & raising a son with Type 1 diabetes & keeping a balance for my daughter was very challenging.

This particular morning my alarm goes off. I am exhausted. As I hit the alarm, I say to myself, the kids need to do a few things before I get up with them anyway, it’ll be okay. The alarm goes off one last time. My feet hit the floor. As I stumble out of my bedroom into the Great Room where Cayla sits at the Breakfast Bar eating her breakfast.  I hear Kurtis’ alarm going off. I ask Cayla if Kurtis is up. I think to myself, “I don’t hear the shower?”. She responds, “It’s been going off for a while now, he won’t shut it off, he won’t get up.”

My heart starts to pound. My concern is overwhelming. At this point, Kurtis is not at the stage to sleep deep enough through an alarm.

Kurtis’ bedroom is at the end of the hall. His bunk bed is against the wall directly in front me. As I rush in the room, I see his back facing me. The alarm is still going off. I know something is not right.

I go over to him. He is a funny colour. My heart is pounding. I shake him gently & say “Buddy” (his nickname). His arm flops over & I see his face. His eyes are rolled back in his head & there is a lot of saliva coming from his mouth. There is not a moan or a groan. He is lifeless. There is a pool of vomit in his bed. My body floods with a warm rush, a pulse so strong I want to scream. I think my baby is dead. It seems so cold, but I check his pulse. It is barely palpable & fast. He is cold. I scream. I scream so loud. I yell at Cayla to get her father. I don’t have to explain. She can tell by my voice & what she is witnessing. I keep him on his side. His father rushes in and picks him up. He holds him on his lap while I run to grab the Glucagon. My hands are shaking so bad I can barely get the needle into the vial to inject the saline. What seems like forever, I pull the syringe out of the vial & plunge it into Kurtis’ leg. He’s not moving, he’s not talking, his eyes aren’t open. I pray, please God, please, I can’t lose my baby. I am trying to keep up my composure for Cayla. She is apologizing to me. She feels bad she didn’t check on him. I say “It’s okay honey, it’s okay.” as I try not to cry. Who do I call first…Kurtis’ Diabetes Educator’s home, not 911, but her home. Why? I don’t know to this day. At that point I have lost all sense. When she answers I cry to her “Shay, he won’t wake up, how long does it take?” My hands are shaking so bad I can barely keep the phone by my ear to talk or listen. She asks me, “Have you called 911?”. I feel so stupid. Me, a nurse, who has worked in critical care. I hang up & call 911. We live in the country. It takes 30 minutes for them to arrive. About this time, Kurtis is beginning to make sounds. He is trying to get on his feet but doesn’t have the strength. The lights are on but nobody’s home. Shortly after, Kurtis is hospitalized. It takes almost a day before he becomes aware of his surroundings & his Mom. I knew my Kurtis was back when he opened his eyes after who knows how many times confused & unaware & says “I’m hungry”. I knew by baby was OK!

There is not a day that goes by that I don’t thank God that He left him here with me. Days, weeks, months & years later, I tell Kurtis that God kept him here for a reason. He has a purpose. As we all do living with diabetes (& those who don’t!). Weeks & months after I would be driving to a city in my territory to call on customers & I would visualize Kurtis lying in his bed, looking dead. I burst into sobs.

My discovery with what happened to Kurtis is that he wasn’t high all night. He was experiencing the Somogyi Effect. He was going low in the night due to all of his activity but his liver was overcompensating giving him such a surge of sugar to compensate he woke up high in the morning. That day, his liver had no more sugar stores left to save him from what happened.

I share this very emotional story with you for a few reasons.

1. Don’t assume. Nothing, not even an insulin pump is predictable with diabetes. When I worked in the Intensive Care Unit, I was taught to look at the patient not the the machine. (Although, don’t override the pump all the time that is telling you changes on the pump need to be made)

2. Set your alarm for 3 am & test your child/teens sugars for 3 nights.  It’s like fishing…you’re trying to ‘catch’ a low.

3.   If the sugar is high in the morning don’t assume it’s because he/she is high all night. If your child is on injections or a pump that does not give the technology to offer Continuous Glucose Monitoring to decide what’s happening, there is technology available that allows your child to go live with their sugars for 6 days that your diabetes clinic may offer which will help you & your diabetes team to find out what’s going on over night 24 hours a day for 6 days.

4. When kids are as active as I described with Kurtis, compensate for that. Whether your diabetes team has advised extra carbs & protein at bed or decreasing overnight insulin.

5. Journals rock!! As busy parents working long hours & being all that for our kids, we lose track. But, we don’t realize it. We think we are status quo, but eventually something has to give. A journal will tell you what’s really going on. It’s the story you think you know but  because I’ve been there, you really don’t.

I share my experiences because I learn from them & they are in the past. I write these blogs because if I can save one child & one parent from going through what I did, I have done what I have set out to do.

How to Prove You’re Cool with Diabetes

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How to Prove You're Cool with Diabetes

“Did you make any friends?”

After the first day of Kindergarten or starting a new school there are many questions to ask. The answers are usually pretty straight forward. Kids usually come home from school telling of events that occurred with their friends. Some days it is the story of “So and so is not my friend anymore, they did this to me…” or “Look at the picture so and so made for me.” or “So and so gave me their cookies and I traded them my chocolate milk.”

Children are compassionate and caring. They are resilient. Children are honest but also cruel.

As a Mom, I was witness to a mob mentality with a group of Grade 4 boys.

As I mentioned in my blog yesterday, after speaking with the children in Kurtis’ class, it seemed some of the kids would play with him. He now had a small group of friends. Once they knew they couldn’t get diabetes by touching him, they were okay with playing with him.

In October of his Grade 4 year I started Kurtis on an insulin pump. Thankfully his teacher was incredible. She was a classmate of mine from primary and high school. She was very proactive in Kurtis’ care and the learning curve associated with learning how to pump. At that time I worked part-time in the hospital as a nurse in the Intensive Care Unit. The teacher knew she could call me at work or home for questions or concerns. The calls initially were frequent.

Upon starting Kurtis on his pump, I opted to start him on an angled teflon infusion set. I tried a straight-in set but they kept bending causing sudden, extreme highs. I felt the angled set would give us more consistent results. The introducer needle was large enough, depending on where it was inserted, it could be quite uncomfortable. I put EMLA cream on his site one hour before inserting so he wasn’t feeling the discomfort. It worked beautifully.

One afternoon I received a call from his teacher. She sounded excited. She wanted to tell me that Kurtis’ infusion set had ripped out during recess. She was so proud of him. There was no EMLA cream in his kit. Kurtis decided he would insert the Silhouette without it. Mrs. Sperry was awesome. Instead of sending him down to the office or nursing station to change it, she would over see the change. The class was curious to watch.

At this point, the ‘cool’ boys were not as interested in playing with him. This bothered Kurtis. He wanted to play the sport games they played at recess. He didn’t want to just walk around the yard, he wanted to be active. I told him although I understood his need. I also encouraged him to start his own games in the yard, but he wanted to play with the athletic, cool boys.

During the phone call I was told that the kids were so impressed with what Kurtis had done. They talked about it all afternoon. Kurtis had put a really big needle in his stomach. He was SO brave.

Not one Certificate of Achievement could ever make Kurtis feel as proud and accomplished as that day. Days and weeks later, the Grade 4 ‘cool’ boys began to invite him to play at recess. The icing on the cake for Kurtis.

As a parent I had mixed feelings. To me it was a form of intimidation. A child having to go through a form of initiation to be friends with children so he could gain the acceptance and confidence he needed to feel good at school. I understand this happens with all children to some degree, with or without diabetes. I have seen it in a milder form with my daughter.

I had to accept that this was part of learning and life with diabetes. Since those days of Grade 3 and 4, I have hoped and prayed that Kurtis would learn that he should never have to prove himself to anyone because he lives with diabetes. It’s hard to convey that to a child, especially when they feel isolated from their peers because of it. As with many things our children experience, we can teach and guide them, but sometimes they just have to touch the stove to understand it’s hot.

Tomorrow my blog will be on the situations and concerns about Kurtis’ safety with his diabetes at school.