Attempts at Perfection & It’s Failures

“Have no fear of perfection – you will never achieve it.” – Salvador Dali

I can’t get my head around it.  Does anyone with diabetes who is motivated in their management think they can’t achieve perfection?  Yes I said CAN’T.

As a Person With Diabetes I think that not only can I achieve challenging feats beyond my day to day life, such as ascending the Peruvian Tundra to over 15,000 ft BUT I can also achieve perfection with my diabetes.

As a PWD I know that this mindset is superfluous.  BUT, I still want to pursue it, just in case I can achieve it.  You never know, right??  Isn’t that a great goal to set and pursue. Almost like a cure, really.

BUT….yes, I said BUT…I am reminded of how the attempts of trying to be all that to my endocrine system and diabetes management isn’t that simple. Even after coming into 40 years of living with diabetes and being a Mom of a PWD for 14 years.

I am reminded on our flight to Peru, no matter how hard I attempt to make my diabetes perfect, I cannot.

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Upon take off I am aware of the potential impact the air pressure can have on my insulin pump delivery.  The rule of thumb despite there is not total clinical evidence with regards to this is to disconnect on ascension and descending. Why?  The talk of the town is that upon take off the pressure can change the delivery of insulin to cause a low blood sugar. During the flight the pressure change can create air bubbles resulting in missed insulin after landing.

I have experienced this throughout the past 14 years of travel on an insulin pump but was not aware of the ‘talk’ that circulated about this until the past few years.

So, whether clinically relevant or not, I decide to take heed to try and avoid this.

We are prepared for take off at Pearson.  Status quo.  Prior to boarding I check my Continuous Glucose Sensor.  All is good in my diabetes world.

As the plane positions itself for take off on the runway I disconnect from my site with the intention of reconnecting within a few minutes after the rapid ascension is complete.

I am excited.  I am thinking about our trip, the flight which is 21 hours with stop overs.  In my mind I am running through what we packed versus the list I print and check off.  I am nervous.  I am landing in a city that has an elevation of over 8,000 feet.  I am worried after the stories I am told of elevation sickness.

The airline steward serves our snacks.  I give it to Steve.  Packed full of gluten. I don’t need a snack anyway.  I’m not hungry.  I look at some magazines.  I do a Word Search.

Several hours pass by.  I start to feel like the Sahara desert lives in my mouth. My stomach feels like a brick made a home in it.  My chest feels heavy.

I question these feelings.  Why?  It feels like I am high.  How come?  I don’t clue in to check my sugar though.  I attribute it to the elevation, the dry air, the excitement.

The steward comes around again.  Offers snacks.  I pass mine onto Steve’s again.  Maybe if I eat and drink a ton of water I’ll feel better.  I take one of my gluten free bars out of my bag.  I bolus, I eat. I feel like crap.

Is it the flight?  The cabin pressure?  I just can’t make sense of it.  Obviously my brain cells are not firing on all cylinders.  Doesn’t being on guard all the time with managing diabetes do that to a person?

Then…I get an itch at my site.  And so I scratch. It is so itchy I must lift my shirt enough to place my hand under so I can make skin to skin contact to find satisfaction. While scratching I realize my tubing at my site is flopping back and forth….I am NOT attached to my site.

I forgot to re-connect after take off.  That was 3 hours ago.

In my effort to achieve diabetes management perfection, I fail.

Now, forgiveness is mine. I am so insulin sensitive that I only end up with a BG of 11 mmol/L.  I check for ketones as well.  They measure at only 0.3.  So…I correct for the gluten free bar and basal rates missed as well as a small amount for the trace amount of ketones.  It takes several hours to come down and even though my sugar is only 11, I feel like I’m on the edge of DKA.  I  know what it’s like, I’ve been there.

We land in Peru and I am almost in target.

After that incident I make a promise with myself.  Disconnecting on a flight to achieve perfect blood sugars is not a goal I wish to achieve.  For what I wish to achieve I fail.  I avoid a potential low but instead end up high and feeling terrible.

What’s the lesser of two evils.  I can’t answer that but I will tell you I will no longer disconnect my site.

Where to Start…Our 12 Day Crazy Busy Trip to Peru…The Intro

I have heard this song “Home” by Edward Sharpe and the Magnetic Zeros off and on while listening to Songza.com for the past few years. Yes, the tune is catchy but the words hit the deepest chord within me.

What is Home?

The days my daughter Cayla and my son Kurtis were born I found my home. They were and still are the centre of my being and when they were little that was where I trusted I belonged. Where I felt beyond comfortable. I was in my realm. I always wanted to be a Mom. I knew I would protect them as best as I had in me to the death. They have been, still are and will always be a part of me and the core of my being.

Growing up my Mom was very fond of the story of Ruth and it seemed she quoted a verse in particular often and in a very fond way.  I didn’t understand the impact it would it have on my life until the past few years.  And so I also associate this Blog series on our trip to Pero to what Ruth says in Ruth 1:16.

Ruth 1:16 (ISV) | In Context | Whole Chapter

16 But Ruth answered, “Stop urging me to abandon you and to turn back from following you. Because wherever you go, I’ll go. Wherever you live, I’ll live. Your people will be my people, and your God, my God.

Besides my children I have never trusted anyone so much in my entire life as I have my husband Steve.  Even early on in our relationship with the decisions I made, I felt he always had my best interest at heart.  I trust he will love and accept me, diabetes and all. Never once has he ever had to say to me “Trust Me.”.  My gut just says I should. One should never have to say “Trust me.” to make one believe they should.   Actions speak louder than words.

In our conversations in the past many years, aside from our trips, Steve has been to 42 countries.  A majority of them have been for pleasure, as well, some for business and missions.

Of these countries he often speaks fondly of Peru.   He tells me it is the most beautiful place on the earth.  Then I must go there!!!

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We are aware of ‘rumours’ that Machu Picchu may not be open to the travels Steve experienced years before.

So, when do we go?

Well, life is funny like that.  In 2014 both of my children announce that one is moving to Edmonton, Alberta and one is moving to Wellington, New Zealand.  They won’t be home for Christmas.

For all the Mommies out there I can hear and feel your overwhelming voice of sadness and “that sucks”.  YEP!  It really sucks.

In early Summer I say to Steve that I can not see a Christmas tree standing tall, all lit up with the kids ornaments for the past 23 years hung in all its glory and no kids.  I threaten fetal position in front of the tree.

And so I ask.  Can I please go away with you to the most beautiful place on earth.  And it is written in stone, so to speak.  We commit ourselves to a trip to Peru to experience Machu Picchu on Christmas Day and Plaza Des Armas in Cusco on New Years Eve. One of the top 10 places for New Years in the world!

I am excited but as I research and speak more to those who have been I get nervous.

Despite my nervousness and apprehensions based on others fear mongering, Steve reassures me I can overcome anything that comes our way while we vacation in Peru. Just like Vietnam and Cambodia.

We are a spontaneous pair.  Our Vietnam/Cambodia trip begain with “hey do you want to go to Montreal for a long weekend?” and 3 days before taking flight instead of Montreal, we book a flight with no plans except a hotel ‘base camp’ for Vietnam and Cambodia…for the same price.

There wasn’t a glitch in that whole experience  (except running out of underwear in which I realize I barely fit into even a large size of women’s Cambodian underwear!)  I look back on that trip and it was worth every minute. So much so, we both want to go back.  Despite all the low blood sugars from the heat and humidity as well as losing my beloved Continuous Glucose sensor because it just couldn’t adhere to my skin. (I know how to make that baby stick now!!!)

Despite our challenges and crazy, spontaneous trip while in Vietnam and Cambodia, I experience great apprehensions with Peru.  The two potential issues I am most concerned about are elevation sickness and keeping safe from gluten and wheat so as to avoid a reaction, at worst a severe one.  The stomach upset is one thing.  The hives are another.

I am proactive with elevation sickness and speak with my family physician.  He advises I don’t need anything, I’ll be fine. He was just there and all was good.  He tells me I will be okay. This gives me reassurance.

I admit, on this trip I am not fully proactive in my celiac disease as I should be.  I am still in a learning curve.  This is my first trip as a person living with Celiac disease.  We assume given the Peruvians very large crops of corn and potatoes…there would be very little wheat.

Not so.  Stay tuned.

I’m OKAY!! Really!?

Wedding Cruise5With the exception of the time we dated in high school, my husband Steve is diagnosed with Type 1 spousal diabetes for just under four years.

It may seem silly but I assumed in all this time he knew diabetes like I did.  I can’t even tell you why I thought he would learn 39 years of living with Type 1 diabetes as I have experienced by observing signs, symptoms and random sharing of how I feel in certain situations.  He has never had formal education in the less than 4 years we have been together.

The moment I understood I need to share my life with diabetes more?

We arrived in Lima, Peru.

After settling on the last leg of our journey we decide to head out in search of a few markets and sites for some art pieces.

On the way back, my pump alarms that my sensor is telling me my blood sugars is 4 mmol/L.  My sugar is going down.  Stupidly, I have no sugar on me…Steve is so good he usually does have lifesavers in his pocket…but he has none.

I feel it is lower than 4 mmol/L.  But I am stubborn.  Steve asks if I want him to go into a store and get sugar.  I say it’s OK .

First, when my sugar trends towards low but I feel like I am not in danger, I don’t treat with rapid acting sugar, I set a temporary basal rate.  I think it’s a control thing.  I want to change the stupid system that really works…just to see if I can make it better.  I am so anti-sugar….I really want to take it…mental block.

So…I say to Steve, it’s okay, I’ll set a temp rate.

And we keep walking.

And several minutes later I become dull.  And quiet.  I lack my bubbly, sunshine Type A personality.

Steve knows but doesn’t know.  He hasn’t experienced such an extreme moment like this.

I personify strength.  Knowledge.  Power.  Ability.  I am never the victim.  He trusts that. Even thought his gut tells him different.

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So he trusts me and my choice.

Until I mumble I want ice cream.  And he asks further questions.  And I am indecisive and vague.

We end up in a grocery store a few blocks away from our hotel.  He asks me several times what I want to get….I don’t know.  In my mind I want to ask him to help me.  Save me from this terrible prison in my mind of wanting to be in control.  Not to ask for help.  I will take care of myself.  I won’t confess I have failed.  I won’t ask.  I refuse.  I won’t.  I have done this since I was a little girl.  My (mis)behaviour trumps my voice.

I am no good to anyone.  I know it.  I am too far gone to say that.

Steve finally suggests and I agree.

We pay out at the cash and I inhale.

Many minutes later Tracy returns.

Later that night we debrief.  He tells me…”I knew, but I didn’t because you know!”, but I did.  And I failed to tell him.  Thankfully he saw it today. Exactly what I just described.

He tells me “…from now when when you say “It’s okay, I’ll set a temporary basal rate.”  I am going to pop into a store and buy some candies.”

And he will tell me.  “You need this candies”.  And I now I will take them.  Regardless of how bad I want to be in control.  Because, we have this consensual contract.

It’s good to share my diabetes.  A liberation.  Enlightening.  It is a relief to give a very small piece of it to someone else.  Even though it is only a very small piece of what my mind thinks of 24-7-365, if feels good. Despite how much control I want.  And how hard it is to let go.

Gobbling It Up

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I was very guilty of this for many, many years.

Pursued & got the 6 figure job. I worked long, exhausting hours running an extremely successful career all while raising 2 amazing kids.

I thought my career & being the ‘perfect’ Mom would fill the void of what I was really looking for. I also thought building a dream home would make everything okay.

I knew why I did it, but couldn’t put it into words or stop the search. I didn’t stop ‘gobbling’ up until the past few years.

It took a lot of choice, non-choice & learning to accept all the ‘things’ I lost to put what mattered into perspective.

In the end finally finding a love that accepted me for who I was without having to prove myself ultimately stopped that seemingly endless search.

It’s an amazing release from something you are always looking for but can never find satisfaction.

Not that I don’t get sucked into it once in a while & have to step back & say to myself ‘whoa!!’…but I know beyond a shadow of doubt that I won’t ‘gobble up’ like I did. My search is over.

“We’ve got a sort of brainwashing going on in our country, Morrie sighed. Do you know how they brainwash people? They repeat something over and over. And that’s what we do in this country. Owning things is good. More money is good. More property is good. More commercialism is good. More is good. More is good. We repeat it–and have it repeated to us–over and over until nobody bothers to even think otherwise. The average person is so fogged up by all of this, he has no perspective on what’s really important anymore.

Wherever I went in my life, I met people wanting to gobble up something new. Gobble up a new car. Gobble up a new piece of property. Gobble up the latest toy. And then they wanted to tell you about it. ‘Guess what I got? Guess what I got?’

You know how I interpreted that? These were people so hungry for love that they were accepting substitutes. They were embracing material things and expecting a sort of hug back. But it never works. You can’t substitute material things for love or for gentleness or for tenderness or for a sense of comradeship.

Money is not a substitute for tenderness, and power is not a substitute for tenderness. I can tell you, as I’m sitting here dying, when you most need it, neither money nor power will give you the feeling you’re looking for, no matter how much of them you have.” ― Mitch Albom, Tuesdays with Morrie

So What?!?

 

I have lived with Type 1 diabetes since the Fall of 1975.

I have been a parent of a child with Type 1 diabetes since October 2000.

I have mixed long and short acting insulin and injected myself with insulin using a vial & syringe for the majority of the time 22,630 times.

In a series of partially memorable events at the age of 16 and after many hours later in the hospital as a result of a seizure overnight from a severe low blood sugar, I recall waking up laying in my own vomit as a result of seizure.

I have inserted 624 insulin pump infusion sites into my body.

I have mixed long and short acting insulin injected Kurtis with a vial & syringe & insulin pens 4,380 times.

I have inserted 312 insulin pump infusion sites into Kurtis.

I have done 4,380 urine tests for sugar & ketones using keto-diastix.

I have done 45,990 finger pokes to test my blood sugar on a glucose meter.

I oversaw or did 17,520 finger pokes to or with Kurtis to test his sugar.

I have been carried out of the bedroom in the morning from severe low blood sugar twice.

I have stumbled out of my bedroom and managed to get to rapid acting sugar during a major low approximately 10 times with a number of times in front of my toddlers and young children.

I have lovingly carried two pregnancies with anxiety and anticipation as well as long term hospitalization resulting in 2 babies, one unhealthy as a result of my diabetes among other things and one as a result of learning from the first, winding up healthy.  Healthy and living their lives as young adults I am proud of them and what I accomplished to bring them into this world.

I have injected Glucagon into Kurtis and call 911 once when he was 13.

I really can’t say how it came to be except by my drive and determination but I have passionately pursued my career into the world of diabetes since the day Kurtis was diagnosed.

The climb has been challenging at best.  The balance difficult to achieve.  The ripe apples looked achievable & fairly easy to achieve despite it all.  But once the apples fell, looking up at the apple tree to acquire the ripe ones beyond reach appeared to be a lot of work and often times too much work.

The point?  Look past the overwhelming information.  After you stop shaking the tree and the ripe apples have fallen, take a moment.  Don’t worry about the apples that haven’t fallen.  Look underneath each leaf.  What do you see?

 

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.

Make the Call

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Make the Call

This is the first thing I saw as I opened my eyes on June 18, 1996, the 5th Birthday of my daughter Cayla. A toilet.

As I open my eyes and look around I realize I am sitting on the floor of the bathroom. I am freezing cold. I am covered in something sticky. It is in my hair, on my face. It is all over me. My lips are numb. My left thigh aches.  I note I have on the same clothes I wore to bed.  An oversized t-shirt with the decals that celebrated the Toronto Blue Jays World Series wins in 1992 and 1993.  The t-shirt is so soaked in cold sweat it could’ve been wrung out. I am shaking profusely.

I then look over to my left and see my then husband. He is sitting on the edge of the tub. I mumble to him “I’m low.”. I see that he is holding my glucose meter.  As he shows me the face of it, evident he has just tested my sugar I notice his hand is shaking. He says “No, you’re high.” and shows me the number on the meter. I feebly argue I am definitely low despite the number on the blood glucose meter. I then say my leg is sore and ask if he gave me a needle.

He then explains to me the events that occurred that lead to this point.   As he is sound asleep in bed he feels my arm fall across his chest in bed. As he grabs my arm to remove it from his chest, he realizes that it is very cold and clammy. So cold and clammy he wonders if I am alive. After placing my arm back at my side, he nudges me and ask if I am okay. According to him the only sound out of my mouth is a moan. He continues to tell me that he then picks me up out of the bed and carries me to the kitchen where he attempts to feed me honey, as he tries to tuck the honey into the corner of my cheek to allow it slowly drain into the back of my throat, down into my stomach where it will begin to raise my sugar, I fight.

According to those who have cared for me during a severe low, I am not a nice person.  Despite my small stature I am a fighter & don’t like to cooperate.  I have been known to be holding my son Kurtis when he was a baby, refusing to give him up, insisting I need to protect him.  When I injected my insulin using vial and syringe I made a habit of leaving a new syringe and vials of insulin on the kitchen table so I didn’t forget to take my insulin.  After being carried from the bedroom, unresponsive and seated at the kitchen table, while my caregiver gets the honey out of the cupboard, I have been known to unconsciously draw up my insulin from the vials into a syringe & insist I MUST give me my insulin.  With adrenalin kicking my mind into fight mode, I have been known to hold the syringe full of insulin tightly in the air, making it challenging for the person trying to save me from my low to get close enough to treat it.  I have been known to place both feet on either side of the outside of car door to prevent my caregiver from getting me in the car to take me to the hospital.  Yes, I am one of THOSE in a severe low.

He continues to attempt to place the honey in my mouth.   According to the story I hear the # on the BG meter reads high, well above target.  As a result he re-adjusts his plan and determines that when he found me in bed I was not low but high. He injects 10 units of Humulin® R (regular) insulin in my left thigh. I don’t remember any of it.  It is 5am when he found me cold and clammy in bed, it is 10am when I wake up to see the toilet.

After I come to my senses in front of the toilet, he helps me clean up and leads me to the couch. I feel so guilty. Not because I had the low…it was considered inevitable with that type of insulin and I always tried to convince myself it wasn’t my fault. Back then the insulin I took caused me many severe lows.

I feel guilty because it is Cayla’s 5th birthday and birthdays are important. My Mom always made birthdays a very special day and I made a point of carrying that tradition on for my children.

I felt guilty because I am not able to get up and make Cayla’s morning as special as I typically did. I am not able to smile, hug her and wish her a Happy Birthday. I felt guilty because I can’t make her Birthday breakfast.

Instead, she is witness to her Father trying to bring her Mother out of severe low.

I feel guilty because I have to lay on the couch testing my sugars every few minutes to make sure I don’t bottom out from the 10 units of Humulin® R I have active in me.  I feel guilty because I am a bystander as I watch her Dad present her with her new bicycle. I feel guilty that on that day, her special day I feel like a failure as a person, a parent, as a person living with diabetes.

The learning I received from this morning is that she was more worried about me then how the morning of her 5th Birthday unfolded. She smiled as he presents her with her new bike. Then she says to her Dad, ” Daddy, I think you should’ve called for an ambulance.”

“God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference….” –Reinhold Niebuhr