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.

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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.

Reaching Target and Realizations

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Reaching Target and Realizations

Further to my post yesterday, I met with my Diabetes Specialist today.

Albeit, I was still a little nervous. Not as much as yesterday. My “Too Funny” (see yesterdays Blog) moment helped alleviate the intensity. As I am sure you have experienced, the unknown can cause the mind to create various role plays. “If the Doctor asks this, I will say this.” “If he reacts this way to my answer, I will respond this way.”

After my “Too Funny” moment I asked myself, why am I aggressively role playing my visits?

The answers I came up with:

1. About 2 years ago I was asked by my Endocrinologist to take meds to lower my lipids & prophylactic kidney protecting meds. I reluctantly agreed although I did not see the reason. My ratio is incredible. My HDL is amazing. My kidneys are perfect. I decided about 8 months ago to stop my meds. I decided this based on 2 reasons:

First, my LDL (bad lipids) were still creeping up. Why should I keep taking a pill that was not doing it’s job?

Second, I met with my hormone specialist that deals with the bio identical hormones that I take. He convinced me that I didn’t need my lipid lowering agent. In his assessment of the medications that I took, he indicated that the lipid lowering agents would cause an increase in my bad lipids as opposed to decreasing them as they should have. He claims it was a plot by the pharmaceutical companies to amplify the symptoms so the pharmaceutical companies could sell more of the treatment. He claimed there was a better therapy that was natural & clinically worthy of taking…Astaxathanin.

I am all for ‘natural’ remedies, i.e.: therapy via food, herbs & vitamins. I believe in taking natures remedies before I will pop a pill made by the ‘powers that be’. I visit my local health food store frequently. I decided to become a one person clinical study. There is obviously no clinical significance but worthy of trying to see if it provided benefit to me. The last visit with my Endo 6 months ago showed it was going down, so I fibbed when he asked if I was compliant with my meds. I told him I was taking them off & on. I felt SO guilty! I wasn’t taking them at all but I respected him so much, I didn’t want to disappoint him. By habit, I am not a liar. As far as my diabetes goes, I am very concerned with the long term results and want to take the best course of action. With that being said, what were the implications of taking something that, up to this point, I had not seen any improvements but had a risk of side effects versus taking something that has no side effects but clinically provided signs of improvement.

2. I have always been guilty of too many low blood sugars. If I was to pick a high or low, I would pick a low. Not because it felt better, in no way did it feel better. I mean, come on, does a high or low blood sugar feel better or worse? They’re just different. I preferred them because I knew I didn’t risk complications. Frequent low blood sugars happen because I am so keen on running my sugars tight to target that I have increased the risk of lows. Also, until the past few years, I have been extremely active which have produced a lot of extra lows. I have noticed that as I get older, having low sugars is becoming very taxing. In the past 2 years my Diabetes Specialist has reinforced to me how hard these low sugars are on me (I’m feeling it!) & if they are in collaboration with a low A1C, they are not optimal. Also, I am alone throughout the night quite often. He reassured me it’s okay to run a little higher (above 6.2 – 6.4%) without the lows if it meant giving up the lows with the near normal tight control I was trying to achieve to feel good & stay safe through the night. Lows are not on purpose. They are caused because of being busy, being too active, taking too much insulin or not paying attention. In the past few years due to a lot of changes and stress in my life, I have been guilty of not paying as much attention to the fine details of my diabetes to achieve this goal.

3. In the past, a prominent Toronto Diabetes Specialist told me that due to the fact I have lived so long without complications with diabetes, I would never have any complications even if I ran higher than guidelines. I was told that my ‘success’ was purely genetic. I was excited by this but I didn’t decide to ‘screw it’ or decide that I was invincible. I’m still so afraid of complications. 38 years in, what guarantees do I have? I get nervous because I’m afraid one day he will assess my blood work, urinalysis, blood pressure or one of a number of tests and tell me I have a complication regardless of my choice for tight control.

The results of todays visit:

1. I am back on my lipid lowering agent based as my LDL has continued to increase. My one person clinical study failed.

2. I am a 10+ on a scale out of 10 on measuring stress. This will be for a few months more yet. The goal is to try to deal with it as best I can so I can manage my diabetes effectively. Cortisol & stress are a detriment to my well being with my general being, paired with living well with a chronic disease.

3. When I can afford it, I will wear a continuous glucose sensor to keep my blood sugars in check.

4. I will have fasting blood work done in 3 months to measure if the lipid lowering agents are working to decrease the LDL.

5. I will have random blood work done in 6 months & see my Endo again to see how my A1C is.

Today my A1C is 6.6. I am happy with today.

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Parenting and Type 1

My daughter Cayla sent me this link. When I saw the picture of these parents with insulin pumps tattooed on their abdomens for their son because he felt like he ‘stood out’, it prompted me to write this…

How far should we, as parents, attempt to live within the world of our child & teen with Type 1 diabetes? What does it take? Type 1 is such an individual disease, are there certain ‘cookie cutter’ actions and reactions that will make or break a situation, a phase, a stage? Because of its individuality is it a ‘roll with the punches’ disease outside of management guidelines? What are the aim(s) to accomplish? And at what point in time? What is the final outcome we are trying to achieve?

We truly are a unique, specialized group.  When someone, especially a child or teen, lives with diabetes, it really does feel like they stand out, no matter how hard we try to sympathize, educate, network, or be an example.  As parents we can only do our best as we know how, by educating ourselves, networking with other parents, groups and utilizing your child’s diabetes team for support & resources.  Aside from all these things we do for our children, there will be experiences & feelings that they will have on their own, to learn from or not, that we will never understand, feel or be able to help them through.  BUT, this is what makes each individual living with Type 1 so strong.  If we come together in this élite club to help each other and our loved ones, it does seem to make the learning curve and journey easier.

What’s your journey parenting a child living with Type 1 diabetes? What part of the journey are you on?  Here’s a piece of mine….

Living with diabetes since age 5, I was always taught by my Mom I could do anything I set my mind to.  Parenting a child with Type 1 diabetes for almost 12 years (he is almost 19 now), I projected to Kurtis the same mantra my Mom taught me. I determined I would teach him this by always being in my finest diabetes form and successfully accomplishing whatever I chose to do. I wanted him to see I controlled my diabetes, it did not control me. I was very conscientious about expressing or showing the side effects of my highs or lows.  I hid it all from him.  I wanted him to emulate my actions and examples so I could save him from some of the lessons I had learned the hard way. I thought by doing this, he could learn, through an easier avenue, the example of how to achieve his personal & diabetes best in whatever it was he wanted to do. I went so far as to raise $5,500 for the Canadian Diabetes Association‘s Team Diabetes and run a half marathon, as well as establishing a successful career in the field of diabetes. I wanted to show both of my children that when you want something, you can achieve it, embrace the challenges of disease and empower yourself through it. 

I learned quickly that despite my goals, I could not save Kurtis from the experiences life would put before him living with diabetes. In Grade 3, Kurtis’ teacher asked me to come speak to his class.  The kids were afraid if they touched him they would get diabetes!  It wasn’t until Grade 4 that he ‘proved’ himself worthy of acceptance.  His insulin pump infusion set came out during recess.  At that time, he was using a teflon slanted 17mm infusion set (Silhouette by Medtronic).  For the few times he was ever required or willing to insert that infusion set without EMLA, he accomplished it on his own that day.  The kids in his classroom watched as he inserted this very LONG needle into his little body all by himself.  From that day forward, Kurtis was ‘cool’ and ‘brave’.  He felt so good about it, but it broke my heart.  I was so proud he was able to put a new one in without the EMLA, I know how much it hurt him, but I was also so sad that his classmates finally ‘liked’ him because he inserted a big needle into himself. For whatever reason, that was the day the children learned they could play with Kurtis and not catch it.

How difficult is it for us, as parents, when we can’t feel and live through everything our children experience no matter how hard we try.  We have concerns for today, tomorrow, the near & distant future. We want the best for all of our children but, the child(ren) we have living with diabetes concern us more.  We are in the midst of what some days feels like an unending barrage of demands which are beyond our control; low & high blood sugars, needles, pump management, tests, carb counts, emotional outbursts & potential complications.  It seems some days the attempts to keep it all balanced AND understand the psychosocial aspects feels like we are sinking into quick sand. Aside from all of the ‘normal’ questions we ask ourselves with raising a child, we have to ask ourselves deeper questions which seem accompanied by complicated answers such as; how do I empower my child so they can live a healthy, active, fulfilling life with diabetes. We are willing to do whatever it takes to show support and empower our children/teens.  I felt I had the upper hand in that, I had THE advantage, I had IT.  Until one day, at one of Kurtis’ diabetes clinic appointments it became apparent to me that my actions were teaching him he was not allowed to make mistakes. Inadvertently, I was not giving him permission to experience his diabetes, learning how to live with it, making it his own.  He felt like a failure when he had a high or a low blood sugar because he could not achieve the control I portrayed to him I had.  I thought I was doing what was best for him, living with Type 1 for 30 ish years, I was the ‘best’ role model for him.    But was I the role model Kurtis needed?

As parents, we try our best to understand what our kids are going through as they attempt to conquer the quest of living with a chronic disease that, for the most part is not evident to those around them. We want them to function ‘normally’ yet embrace their diabetes & manage it successfully, requiring intensive management, something that is difficult to hide.  As a parent living with or without Type 1, it is a difficult course to navigate. How much guidance and ‘pestering’ is too much? At what point should the reins be loosened for them to run free or freer?  Does it help to tattoo an insulin pump on your body to show your child you understand they feel different & you support them?  Do you raise money each year for JDRF and wear t-shirts that have pics of your child that say you want a cure?  Do you put them in the activity/sport they are passionate in, tell them they can do whatever they want and teach them to manage?  Who do you use for support?  Why?  What successes & learning curves have you experienced?  Do you join the Canadian Diabetes Association’s Team Diabetes and run a half or full marathon, whether it be alone, with your child or as a family? Do you volunteer? Did you start a website, blog, group? Write a book? How has your action(s) helped you with parenting your child & teen with Type 1? How has it helped your child & teen? What about your family as a whole?

Today we are fortunate as we have great groups available for them to participate in such as Connected in Motion & iChallenge Diabetes. Our Juvenile Diabetes Research Foundation’s local groups are very active & growing. Paediatric Diabetes Centres host a number of activities & meetings to bring parents & children/youth together. These groups empower all of us affected with diabetes to participate, connect & learn with others living with Type 1 diabetes. I encourage you and yours to seek them out.

Please share and discuss so that our children & teens now and in the future will live their lives with Diabetes Beyond Borders,

 Tracy