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.

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

Being “Normal”

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What does every parent want when their child lives with Type 1 diabetes & it’s any special event whether it be Christmas, Hallowe’en, Birthday Parties or Easter? To portray it’s the one of the few times of their life they can enjoy what everyone else does. Well, sort of. But that’s the best we can offer, right? Do they remember or know any different? Kurtis never told me so. I don’t remember so.

From the ages of 8-11 I don’t remember what I did with Kurtis at Hallowe’en. That was the time when he took multiple daily injections. Life was a whirl wind. I worked shift work at the hospital. My whole life evolved around my children…I worked my job, my health, my diabetes…everything around the kids. I was a single parent a lot. I didn’t have a team mate I could pass the baton to & ask to take over. My focus consisted of; were the kids fed well, did they have lunches packed for school, were they doing well in school, were Kurtis’ blood sugars okay, what did I need to do make them ok, appointments for his diabetes, making sure Cayla didn’t feel like Kurtis was the centre of our family because of his diabetes, what did the kids have for homework, hockey, figure skating, testing Kurtis’ blood sugars day & night to keep him safe, setting my alarm to check him, arranging care for the kids for the few times I wasn’t there, making sure the people caring for him understood what to do with his diabetes…you get the whirl wind?

Do I remember what I did for Hallwe’en on injections? Vaguely. I know for a fact I would have kept his candy intake balanced so that his sugars weren’t crazy for days. I vaguely remember letting him pig out the night of after he returned from collecting his stash..to an extent. Then going forward matching meals with treats to keep it balanced.

Once Kurtis was on a pump, I was not so concerned. My mindset was eat it all sooner then later so that we have 1 week of craziness then 3-4 weeks of drawing it out & really messing things up. The bonus was he could put the carbs in his pump & burn it off with activity. I was lucky because Kurtis only liked certain candies. The rest he would never touch.

Christmas stockings & Easter hunts involved a lot of non-candy things from Wal-Mart & the dollar store. I kept it the same for both. The kids never said to me “where is my candy” or “why don’t get as much candy as the other kids”. I remember as a child living with Type 1 finding a brand new pair of running shoes (which I needed!) hidden for Easter! I was SO excited because they were the cool pair I wanted! You can’t substitute candy for something so wonderful as that!

Creativity & letting normalcy rule within the boundaries of keeping your child safe, is essential to an enjoyable, stress-free Hallowe’en.

Trick or Treat

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Trick or Treat

October 31st is a significant day for me. I have 3 major memories that I associate with this day.

1. Going out for Hallowe’en as a child living with Type 1 diabetes.

2. October 31, 2000 is the day I dipped my 7 year old son Kurtis’ urine to discover he had 4+ sugar and thankfully no ketones but knew he had developed Type 1 diabetes. I dipped his urine as he refused to let me test his sugar with a glucose meter. I had poked his fingers 2 years earlier and knew this day would come.

3. I became a parent of a child with Type 1 diabetes trying to figure out how to let him enjoy going out for Hallowe’en without allowing his blood sugars to go askew.

This Blog is 1 of 3 parts sharing my experiences with October 31st.

Part 1:

When I was a child there were no pumps, rapid acting insulin or carb counting. My Mom did not have the technology at her finger tips to count carbs, push a button &/or inject & eat the treats. For the first few years, my Mom & Dad would take me out for Hallowe’en. They would use the bag of treats for when I had low blood sugars. I don’t recall having them as a random treat.

I don’t recall how old I was but I was under 10 when there came a time my parents figured I would be old enough to keep the bag of Hallowe’en candy in my closet. They told me I could keep it in the closet in my bedroom on condition that I tell them when I felt “funny” so I could dip my urine…yes…dip my urine!! to test to see if I was negative (a possible low). Then I could ‘treat’ with my treats.

I recall trying to have self control but what child under 10 can keep a bag of candy in their closet & not eat it at will? I understand why my parents did what they did, they wanted to try and incorporate some normalcy for me. They felt by doing this it would help me feel included in choice.

What happened? Each day when everyone was busy I would sneak candy. How did I get caught? My Dad was an avid runner. He always chewed gum when he ran. One day he went to go out for a run and realized he was out of gum. He came to me and asked to take some gum from my Hallowe’en bag. I still remember the panic. I felt horrified. The bag was full of wrappers but nothing else.

Little did I know that my Mom had been perplexed for weeks wondering why my urine was dipping positive for high sugar. After trying to avoid my Dad from going into my closet to get my bag of stash that no longer existed I knew the jinx was up.

I stood there with a full body panic as Dad looked into my bag. Dad was pretty cool. I do believe in that moment in time he knew that him & Mom shouldn’t have allowed this to happen. It was explained to me the implications of what happened to my sugars as a result of my choices. Mom was relieved because now she knew why!! Two very important lessons I learned and interestingly will never forget.

What happened with subsequent Hallowe’ens? It was actually pretty cool! Mom, Dad & I with my little sister & brother would go through our stash as most do. When we did, Mom, Dad & I would negotiate the price of my stash. It was a game. With that money I was allowed to go shopping for my own treats. Off to the local convenience store I would with my $1-$2 and go buy whatever sugar free treats that were offered.

I don’t feel like I missed out. Not once.

Stay tuned for Part 2.

Once a Mom Always a Mom

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Once a Mom Always a Mom

What drives a Mom of a teen & young adult crazy? That our child living with Type 1 thinks they are invincible. With or without Type 1 most teens & young adults do. My biggest worry as a Mom of a 20-year-old son living with Type 1, who is very, very active working as an apprentice in the construction industry with his Step Dad & driving on his own, is being low on the job site or while driving. He usually remembers his insulin pen but sometimes forgets pen tips.

Pictured is what I pack for him to help him keep with managing his diabetes daily as well as ease some of my worry. One kit is for his car, one kit is for working on the job site. He is on multiple daily injections so after treating a low blood sugar with juice & reaching a blood sugar of 4.0 mmol/L he needs a carb/protein snack to prevent him from going low again.

I bought a 6 quart/5.83L Rubbermaid plastic container with lid for $2.00. I can fit 10 Minute Maid orange juice boxes which contain 23 grams of carbs, 6 Nature Valley chewy protein bars which has 17 grams of carbs,11 grams of protein & 1 box of 100 NovoFine 6mm pen tips. The only items I am missing are a Frio® pack http://www.readycareco.com/splashpage_frio.htm & 1 Novolin Pen Echo®.

We never stop being Mom’s or Dad’s but we assume once they enter into their 20’s they have enough figured out to survive & thrive BUT they don’t. They aren’t going to tell you that. Our job parenting a Type 1 teen & young adult is to slowly let them go while gently supporting them when they need it. This kit is one way I can support my son Kurtis without looking like I’m in his face about his diabetes. He will never tell me this but I believe it gives him a sense of security knowing he has the kit when he needs it & that he is supported by his Mom & Step Dad.

Connecting the Dots

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Connecting the Dots

I notice the biggest challenge in diabetes management is testing blood sugars.

It is a nuisance, no doubt. We all claim we can tell what our sugars are by how we feel & for the most part I believe that. But similar to hunger not always being hunger but a symptom of something else, symptoms we typically feel with a low or high can be a result of another event in our body.

Remember when we were kids & we would pick our favourite colour crayon & connect the dots or complete a # to # pic? It was so cool to see what our efforts of connecting the dots or numbers created….the big picture. So it is with blood sugars.