Reassurances

I am dedicating this to my friend Dee who has concerns that she will develop the mindset of an ‘old Diabetic’.  This mindset consists of being scared to death that having short-term high blood sugars will cause amputation, heart disease, kidney disease and stroke.

As a result of these fears, in the past many ‘old Diabetics’ learned to avoid high blood sugars, purposely running very tight sugars on old insulin such as Lente®, Humulin® L, NPH, Humulin® N, Toronto® and Humulin® R.  As a result the experiences of multiple moderate to severe low blood sugars occurred daily and weekly.  ‘Old Diabetics’ were not taught the mindset that a severe low could kill them or cause damage as well.  I know this all to well because I am one of ‘those’ ‘old Diabetics’.  Sadly, today many still live life like this despite the new technologies and choices we have to manage our diabetes.

I am not supporting anything more than the targets set for you or the A1C you need to achieve to attain a healthy life, but I do believe achieving these go beyond numbers and are associated with the mindset of getting there.

Whether you are an ‘old Diabetic’ or not, being diagnosed and living with diabetes can be empowering AND daunting.  You change your lifestyle to live healthier, a big bonus!  After feeling good about your accomplishments you suddenly experience a setback.  So frustrating!

Do you recall this picture?  Do you see an old hag or a young woman?  Can you change your perception of what you initially see?  It is so hard!

Old hag or young woman

 

It is the same with our diabetes.  What do we see when we look at our lives with diabetes?  How do we change our perception?

Reassurances

Is this picture of a lane a challenge that may be snowy and slippery leading to the unknown, possibly a struggle to walk back up, heart beating fast, muscles burning?  Oh the worry over what could be a beautiful journey if the perception is changed.  Or do you see the pleasure of an enjoyable walk with relaxing views including a beautiful winter blue sky in the horizon?  Do you see it?

How can I reassure you that you can manage your diabetes and avoid the things you fear?  Honestly, I can’t.

What I can reassure you is; YOU are not bad.  You are you as a person first who lives with a chronic disease called diabetes.  Don’t connect the two as to who you are and your accomplishments as a person.

You are not your sugars.  You are not your diabetes.  When I hear the statement “I’ve been bad.”, the next words out of my mouth are; “Hey, do you have diabetes???”.  We both laugh and I say, “That’s why you have high and low blood sugars!, HEY, You have diabetes!!”

So how can I reassure you?  I have changed my view of being an ‘old Diabetic’.

I see the picture differently now.  Do you know why?  Living with diabetes isn’t just about me.  What I understand now is that if I choose to not ‘play the game’.  If I choose to not adhere to the rules, if I choose to keep my perspective as an ‘old Diabetic’ and not learn a new perspective, I am not the only one I am hurting.

Who saves me or helps when I decide to run too tight and too low?  Who is SO scared that they may lose me because I was afraid of a short term high or got crazy keeping my sugars too tight?  It’s not me!

Reassurances

ReassurancesI have given my heart and soul raising my 2 beautiful children into young adulthood, I want to continue doing that.  In particular to my son Kurtis as he begins his life living with diabetes independently.

I want to live life. I want grow old with Steve and be able to fully enjoy our journey together.  I don’t him to worry about me.  He has to deal with my choices I make with my diabetes now and in the future.

 

So, with this, these are my reassurances to you:

You can live with diabetes.

You will change your perspective each day on how that will happen.

Through trial and error you will find your groove.

Do not fear the unknown.  Work with what you have today and change your game plan and perspective as need be.  BUT stick to the rules.

You are not bad no matter what the numbers say, the only change you need to make when you see them is to make it better, for your sake and for those you love.

An Unexpected Anniversary

Image

An Unexpected Anniversary

October 30, 2000 I am in the kitchen baking up Halloween treats for the kids Halloween parties at school. I loved these moments. The excitement, the energy, the creativity. Halloween was so much fun.

But…that day transitioned into a life I never thought I would ever entertain on October 31, 2000. That was the day I learned I would become the parent of a child with Type 1 diabetes.

On the morning of October 31st I got the kids ready for school. I packed the plastic containers with Halloween baked goods & saw them on the bus.

That afternoon as the kids unloaded off the bus & I walked them in the door asking how their day went & how their Halloween parties went, Kurtis say’s the words a parent does not want to hear.

“I didn’t eat any treats today because I felt sick to my tummy & drank & peed all day.”

I felt the energy drain out of my body. I didn’t even have to test him. I knew.

I asked Kurtis if Mommy could poke his finger like Mommy does to test her sugar. He flat out refused. I was on my own so did not have the help of another adult to convince him otherwise. Luckily I happen to still have Keto-Diastix in the bathroom. After I dipped & confirmed what I already knew with 4+ sugar & negative ketones, I placed the call to my GP’s office. He reassured me that based on the fact he had no ketones, take him out for Halloween as usual but don’t allow him to eat any treats loaded with sugar & bring him in first thing in the morning. At that point we would begin the transition to insulin with education to be a parent of a child with Type 1 & subsequently living with it.

Initially, the next 2 nights were the hardest. Halloween involved me trying to portray it was a normal night out with the kids trick or treating. With the exception that my 7 year old baby had just learned he had diabetes like his Mom. He would have to take needles & poke his fingers & have low blood sugars that didn’t look nice. As we walked up the road, from house to house, Kurtis would throw himself on the side of the road belly first & wail “I don’t want diabetes” or “I hate diabetes.”. I would leave him briefly then say as I tried not to cry “Okay Buddy, l know it sucks. Let’s go to the next house & trick or treat.” I honestly didn’t know how else to be. I knew he had to grieve even though it was about something he didn’t quite understand in it’s entirety but knew starting tomorrow he would begin to learn the essence of what living with diabetes was about. He only understood the external ‘bad’ things with diabetes….severe lows, needles & finger pokes. He didn’t yet understand the other side….how he’d feel being low, high, going to the Dr’s the next day to have blood drawn or the complexity of counting carbs, the demand it would have on his body & mind 24-7-365 & the ridicule he would receive at school for years to come.

The next day was emotionally distressing for both of us. I was the only parent present. His father refused to come home from out of town to support this critical event or his family.

While Cayla went to school, Kurtis & I made our way to the GP’s office. After a lot of coercion we finally tested Kurtis’ sugar by finger poke to determine his fasting sugar was 13.5 mmol/L. I blamed myself. I felt guilty. What have I done to my child?

The GP called the Paediatrician’s office & the hospital to arrange an appointment at the Adult Diabetes Clinic as there was no Paediatric clinic at that time.

We knew the Paediatrician from 6 years prior when Kurtis had an anaphylactic reaction to Benadryl & severely ill with chicken pox in which he almost died at the age of 1. We chatted briefly & said to me…”Mom, you have Type 1 & you’re a nurse, you know what to do. I’d rather not put him in the hospital so here’s the prescription for the insulin.” He gave me the dose to give him & sent me off to the hospital to learn how to carb count.

Once at the hospital I sat with the dietician as she taught me how to carb count. The entire visit Kurtis had marker in hand. Standing in front of a flip chart he wrote time & time again in big 7 year old letters “I HATE DIABETES” “I HATE DIABETES” “I HATE DIABETES”. It hurt so much to watch but I knew it was good for him to get it out. Me? I was on robot mode. Survival. Take it in. Learn it. Function. Sacrifice emotion for taking good care of my baby. Helping him through this time so that he accepted & transitioned into such a terrible diagnosis.

Once home, I explained to Cayla what had happened during that day. She was 9 & a mature 9. She grasped it fairly easily & knew she had to step back & let me care for Kurtis for a little while. Closing into supper time I explained to Kurtis that just like Mommy he will test his blood & take a needle. That’s where it didn’t go so well. Testing his sugar was a bit of challenge but doable. He tested at 32 mmol/L. I explained to him that he really needed his insulin to bring his sugar down as I didn’t want to have to take him to the hospital & have someone else do it. He didn’t care. He just didn’t want the needle.

After about an hour of trying to convince him, going into another room & having a little cry on my own, I called my Mom. Knowing she had been through worse then me with my diagnosis, I asked for her help. When Mom arrived my head was spinning, Kurtis was crying & Cayla was trying to keep the calm in a whirlwind of frenzy. I was also angry because his father wasn’t present in a time we all needed him.

In my mind I can still see Kurtis sitting on the kitchen chair on an angle from the table explaining to me in tears how he doesn’t want the needle & his rationale as to why he doesn’t need it. His eyes swollen with tears pleaded to me & it broke my heart. Thankfully my Mom had already been through the heartache of my diagnosis at age 5. She had raised a child with Type 1.

In her calm, she finally convinced Kurtis to let me inject in his arm.

After I got the kids settled to bed, I cried & cried. I felt it was my fault. I caused this.

How did I move forward? My Mom asked me a question that changed my attitude which helped me transition to a Mom accepting she has a child with Type 1 diabetes. “Would you have had him if you knew he would get Type 1?”

No regrets. It sucks but attitude & the choice to transition to a new life is essential to living life with Diabetes Beyond Borders. This year is another Diabeteversary. October 31, 2013 Kurtis has lived with Type 1 for 13 years. The transition continues.

Change or Transition?

Image

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.

Pain: Motivator or Deterrent?

Image

Pain: Motivator or Deterrent?

We read this sign as we entered S-21, the prison where Pol-Pot & the Khmer Rouge imprisoned, tortured and killed about 1 – 3 million Cambodians, approximately 25% of the total population.

As I read the “Regulations” I try to imagine what would go through my mind if I were a prisoner. I see pictures of what they endured. I ask myself, would these rules motivate me to do what they say, not because I feared the punishment, but with the hope of living and someday escaping? Or would it deter me from abiding by these rules because I felt hopeless and defeated, feeling like I wouldn’t succeed anyway?

Although it may not seem to be life and death, there are many events that occur in our daily lives that should be considered in a similar fashion.

No, it doesn’t appear that we are in a situation where we will experience terrible electric shocks or hang by our hands with our arms behind our backs until we pass out. These things are inhumane and disturbing at best.

BUT, what will the end result be in trying to ignore the things in our life that should be a priority? It certainly is not as acute or terrifying as what the Cambodians experienced but keeping that top of mind we have to decide what motivates us and what deters us if we know the ultimate price may be painful.

Would you read the “Regulations”, whatever those may be in your life and agree that your motivation to stay within those boundaries are worth living a full, satisfying, healthy life? Or are you deterred by the outcomes you have experienced so far and feel hopeless and defeated?

I want to encourage you that no matter where you are in your diabetes management or that of the one you love, there is always a reason to stay motivated. Move past the pain and look forward to what you want in life.

I urge you to start day dreaming. If you need to step away from your situation to do this, go for a walk, sit in a park, go to the library or book store. Visualize the final outcome. Take a piece of paper and write a letter to yourself like you would another person you care very much about. Explain to yourself the pain you are experiencing, the struggles you are feeling. In detail, describe what you want for yourself. List the steps on how you are going to get there and the length of time, short and long term. When you are going to get there? Take an envelope with a stamp and address it to yourself. Drop it in the mailbox. In a few days when you get it, read it, store it somewhere safe where you can pull it out and refer to it and act on it.

I met a man at the S-21 Prison in Cambodia, one of the last survivors. He wrote a book about his experience. I sat down beside this man and wondered how he could be so strong after enduring so much. Here he was, an old man, smiling, sitting in the same place that caused him so much pain. In his hand was the book he wrote. I imagine how difficult it must’ve been for him to write it. Recalling not just the pain he endured, but hearing people screaming and begging for mercy as they too were tortured and killed. Why would he want to write a book, sit at the place that he should never want to see again? Even in his old age it was apparent to me that the pain he endured did not deter him from the motivation to live life and be heard.

How do you want to live your life and what do you want to say? What will motivate you through those moments of pain?

Link

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.

Finding Balance

Image

Finding Balance

I just completed The Holmes and Rahe Stress Scale.

In 1967, psychiatrists Thomas Holmes and Richard Rahe decided to study whether or not stress contributes to illness. They surveyed more than 5,000 medical patients and asked them to say whether they had experience any of a series of 43 life events in the previous two years. Each event, called a Life Change Unit (LCU), had a different “weight” for stress. The more events the patient added up, the higher the score. The higher the score, and the larger the weight of each event, the more likely the patient was to become ill.

Below is the score Interpretation

300+ You have a high or very high risk of becoming ill in the near future.

150-299 You have a moderate to high chance of becoming ill in the near future.

<150 You have only a low to moderate chance of becoming ill in the near future.

Upon taking the survey, it did not consider that I live with diabetes, I have a 19-year-old 'child' living with diabetes who has recently experienced complications, I am still going through court proceedings trying to settle with my divorce, starting two new businesses AND most recently after months of severe undiagnosed pain I finally have a diagnosis in which I will be going for major surgery for in April.

So, not including the above mentioned, the score I 'achieved' is 687. Of the 43 items listed, I have experienced 22 in the past 2 years.

I am not writing this to have you think to yourself "Oh poor Tracy".

I am writing this for 2 reasons:

1. Understanding that everyone has life events that are very stressful. Sometimes when in the middle of it all, as these events pile up one on top of another, it is very difficult to step back and see what has occurred. It is even more challenging to see the positive or how to take care for yourself in the midst of it all. There are many events in life that we cannot change. It is important to accept this and decide ways to find balance by taking care of ourselves.

2. I need to write this to help me. I have wanted to do the survey for a while. I knew the score would be high, so it was not for that purpose. I took it today because I am so tired. So tired, I needed to make myself take the survey so I could sit down & figure how I could find balance among all of it. I am not taking the best care of me as I have in the past. It's time to change that.

The picture posted is from my walk yesterday. I had 2 choices yesterday; sleep or walk. My body felt full of toxins from the stress. I haven't been listening to my body as I should. Although I was extremely tired, my mind urged me to go for the walk. I needed to get the blood flowing and help my body clear out the toxins and my mind.

We ended up driving to a park in the city. We took the puppy and started through the park. I felt like I was in the country. No traffic noise, lot's of trees and snow. We didn't talk much. We both just needed to 'be'.

Initially in my mind, I didn't want to go far. I have an ongoing list in my head of tasks that need to completed at home both on a personal and business level. But as I walked further, I realized that this list never has nor will it be finished. That's life. For this walk I needed to let that never-ending list go and enjoy the moment for my health's sake.

We ended up walking 10 kilometres over 2 hours. Towards the end of the walk, the tightness in my chest and my inability to take a deep breath began to disappear. It felt so good to take a deep breath.

Today we will do the same. I will leave that list behind. I will leave the items I have marked off on the survey behind. I will envision taking these items and tucking them away in a closet only to taken out when absolutely required. But not on the walk.

I urge you to take the survey. Determine where you are at in your life when it comes to stress. Then, decide what you can do to balance these items. Whether it be reading, going to the gym, taking a long walk, yoga, stretching, having a long relaxing bath, lighting some candles and listening to music, playing with your kids, hugging the ones you love.

"Take rest; a field that has rested gives a bountiful crop." –Ovid

"Its not stress that kills us, it is our reaction to it."
–Hans Selye

“Are U Happy Having Diabetes?” – Facebook fan on Diabetes Beyond Borders page

Image

I was asked today by a Diabetes Beyond Borders Facebook fan if I was happy having diabetes. He then commented later he hated it.

The word ‘happy’ would not be the word to describe how I feel about living with diabetes.

How I see it is, I don’t have a choice with what I’ve been given.

I do see I am fortunate to have been diagnosed at age 5…I don’t recall not living with it. That makes it much easier to accept.

I could ‘hate’ it given my 19 year old son lives with it as well for the past 12 years. I could be bitter & angry but what purpose does that serve me & those that are in my life?

I have been given a gift to educate, motivate & write about my life with diabetes. It helps me deal with the feelings I have sometimes of being tired and overwhelmed with the constant demands of the disease. It makes me happy and I absolutely love that I can take my diabetes, the education and experiences I have to help, support and learn from others living with it too.

Throughout my childhood and teen years, my Mom taught me that I can let diabetes control me or I can control it.

I choose the latter.