Change or Transition?

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Change or Transition?

The words spill across the physicians desk or the hospital bed “You have diabetes.” or harder yet “Your child has diabetes.” Your head spins trying to absorb what that means. Depending on what your knowledge or experiences are, thoughts, emotions and response after this moment can vary dramatically. What you do know is that from that moment on your life has changed forever. Forever. Changed. Where do you go from here?

At this point I challenge you to substitute the word change for transition. Change is defined as an act or process through which something becomes different. Yes, this is true when receiving the diagnosis of diabetes. Something has become different. Transition is defined as the process or a period of changing from one state or condition to another. Do you see the difference between change and transition?

The picture you see is of the Peterborough Liftlock. It was recently taken on a beautiful Fall day on one of our weekend walks. Wikipedia provides a great summary of the greatness of this world renown landmark.

“The Peterborough Lift Lock is a boat lift located on the Trent Canal in the city of Peterborough, Ontario, Canada, and is Lock 21 on the Trent-Severn Waterway.
The dual lifts are the highest hydraulic boat lifts in the world, with a lift of 19.8 m (65 ft). This was a considerable accomplishment at the time when conventional locks usually only had a 2 m (7 ft) rise. It is not the highest boat lift of any type in the world today: the lift at Strépy-Thieu in Belgium has a greater capacity (1,350 tonnes) and height difference (73.15 m)…Many local residents of Peterborough skate on the canal below the lift lock in the winter.
The Peterborough Lift Lock was designated a National Historic Site of Canada in 1979,[1][2] and was named an Historic Mechanical Engineering Landmark by the American Society of Mechanical Engineers in 1987.[3]”

Picture yourself sitting in a boat on the canal at the top of this lock. You will have to trust me at this point but the view from the top is amazing. Add the transition of colour on the leaves on the trees. It is breathtaking. I say the leaves are transitioning because we know that eventually those leaves will fall off and the tree will become bare. The tree is on a journey with an evolving objective. At this point it’s goal is to shed its existing facade so it can rest for the winter to produce buds and beautiful bright green leaves in the Spring.

Back to the locks…It is understood when you approach the lock that eventually you will transition to the water below and your journey will continue on. Whether you have a plan as to where you to go from that point can amplify the quality of the experience when you arrive at the bottom of the lock. Most would agree that a plan needs to be made in order for the next phase of the journey to be enjoyable and memorable. Without a plan to transition to the next location, all could be lost stressing out on what to do next rather then taking pleasure in the journey.

To be successful living with diabetes one must not be satisfied with just accepting change but beginning the transition to living a life in a different state. There are many steps to achieving this, a plan is essential. If these steps are taken and transition is accepted, not just the understanding and acceptance of change, you can live a full and productive life with diabetes. I encourage you to always plan and be secure in your journey knowing you are transitioning to the next destination in your life with diabetes.

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.

March Break Travel Tips & Tricks

For those anxiously awaiting for March break…are you travelling away from home? How do you plan for travelling with diabetes?

Since 50% of our family had Type 1 diabetes, back in the day when my kids had March break, to keep organized and sane I created a standard packing list which also included everything imaginable for diabetes supplies. If we were going away for 1 week, I would pack double the supplies.

I gave both of my kids their own packing list. Kurtis’ list also included the diabetes supplies he needed. I would encourage him to pack it himself. I reviewed the list with him to make sure it was all in his suitcase and carry on, if flying.

A few tips:

1. If on an insulin pump, call the company and ask for a back up pump about 2 weeks earlier (or find out from the company how much notice they need)

2. If on an insulin pump, bring enough insulin, syringes or pen and pen tips to sustain you or your child for the entire vacation IF by chance your pump malfunctions and you have to go back on multiple insulin injections.

3. Make sure all medication are in its original containers.

4. Have your family doctor or diabetes specialist write a letter stating you have diabetes and the specific list of supplies you will carry with you. (Kurtis & I have been pulled over by Customs. We have had to pull the list out and go through the bag taking inventory with list in hand.)

5. Wear Medical Identification such as a bracelet, necklace or tattoo.

6. Pack a water proof container where sugar tablets can be placed for any activity that they may come in contact with water.

7. If packing insulin, make sure to keep the insulin between 2-8C when in transit. It can be exposed to temperatures between 15-25C for up to 28 days. The best product to use for travel to keep insulin safe to use is a http://www.frioinsulincoolingcase.com

8. Buy Travel Medical Insurance

9. Pack a Glucagon kit.

10. NEVER leave your diabetes supplies on the beach. (I had a young client I sold an insulin pump to just before he and his family went on vacation. Carefully folding his pump in his towel on the beach, upon his return from playing in the water to hook back up he realized it was gone!)

11. Bring an empty water bottle if you use needles. You can place them in the water bottle and safely bring them home for appropriate disposal. Make sure to put the bottle with sharps in your check in not the carry on.

12. Make copies of travel documents, doctors letter, and contact information. Give it to one or more of your family members and/or friends if you lose any of this information.

If you would like an example template of the packing list I have used and still use, let me know, I will post it.