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.

DBB Hypo Peru

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.

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

Meaning

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Meaning

If you didn’t live with diabetes would you be the same person you are today? What has changed about you & your family as a result? Has it been a positive change?

Without a doubt I have a passion & a purpose that I believe would have been more difficult to discover had it not been for living with ‘my’ diabetes. Although there are days I wonder how much more energy (many without diabetes say I have more then they could harness so I hesitate to wish that upon anybody! LOL) as well as how much easier & clearer my mind would be to think & process daily thoughts (that again scares people that if I thought & processed more than I do I would be a very overbearing person). Maybe I am just really good at hiding how crappy I feel somedays. BUT, in the end, I have no regrets or misgivings about being handed this lot in life. Especially now that I sit with peeps & their families that live with diabetes & appreciate that I am their coach. I love sharing my experiences of 38 years of living with diabetes, as well as 13 years as a Mom of a child with diabetes to help others.

On the other hand, I do find at this point in time challenging as a parent of a ‘child’/young adult living with diabetes. At time of diagnosis & since he became a teenager I wish it had never happened or that I could keep him at the age I was able to manage him fairly easily. I tell myself that someday I will not feel that way. He too will find his rhythm, as I did, living with T1 diabetes. I don’t think there is a parent out there that can say that their family, them or their child is better off because of having diabetes.

My Mom’s perspective? Now that she knows I take great care of my diabetes & have a career that I love as a result of it she doesn’t worry as she did years ago. With that being said, I know she still has this ‘old’ diabetes mindset that one day I will announce I have kidney failure or I’m going blind. But as each day goes by I know she sees this will not happen…not in this day in age.

An Unexpected Anniversary

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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.

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.

Change or Transition?

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Change or Transition?

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

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

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

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

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

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

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

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.