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.

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.

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Loss of Control – How Do We Regain It

I urge you to read the link I have attached.  Although it is from the Canadian Diabetes Association, I have read many links which involve Diabetes Associations that exist around the globe.  It seems on paper the protocol is in place if the school board or district is agreeable to implement & support.  Every parent past & present that has a child with Type 1 fight to keep their child safe at school.  The fact that our children are not viewed as ‘in need’ of special care in their daily management of diabetes at school is preposterous.  Every diabetes organization is posting guidelines & lobbying for change but it is happening too slow.  While school boards fight to keep their budgets or manage with less, our children living with diabetes’ risks of adverse events occurring is higher.

Examples to support the lack of guidelines & the situations Kurtis met as a result:

1.  In Grade 5 his class is in a portable.  Soon after the school year starts, Kurtis comes home to tell me during class that day he feels like he is having a low blood sugar.  He tells his teacher.  He tests & confirms.  The teacher sends him by himself out from the portable into the school to the office to get a juice box.  He tells me he is scared.  Two issues:  there are juice boxes in the classroom AND most important, she sends my scared son BY HIMSELF outside to enter the school & walk up a long hall & a set of stairs to treat himself for a low blood sugar.  What if he didn’t make it?

2.  In this same class, it is the middle of winter.  A similar event occurs.

3.  I discuss with the teacher the concern.  She explains she can not expect a student to go with him as they need to be in the class to learn.  She offers she can not leave the class to go with him & leave them on their own.

4.  I discuss my concerns with the principal.  She meets with the teacher & enforces a student needs to go with Kurtis when going to the office for a low…IF….there are NO juice boxes in the classroom.

5.  At one point, Kurtis has a severe low at school.  I meet with the principal & discuss options of having Glucagon for treatment if he becomes unable to take treatment orally.  She informs me the school board will not allow her or the staff to inject Glucagon.  I ask if children that have severe anaphylaxis to bee’s & peanuts have Epi-Pen’s at school?  She says “yes”.  I ask if the staff are allowed to inject the Epi-Pen if such an event occurs. She says “yes”.  I point out to her that both events need life saving injection of a drug.  She counters that she can call an ambulance with Kurtis & by the time they get to the school he will be okay.  I was furious.  How do you educate someone who is such an imbecile?  So stuck on the rules that they won’t consider a child’s life could be at jeopardy?

How did I deal with this?  I made myself on-call regardless whether I was sleeping from a night shift.  If I was working a 12-hour day, I was fortunate my parents were on stand-by.  I made it clear that the school was not to call 911 first (as the school was in the country), they call me.  I knew I could make it to the school quicker than the ambulance could.

Thankfully, with regards to his diabetes, nothing serious happened.

I am not sure how to make an impact to sway school boards to start a standardized protocol that allows for a budget for help in overseeing glucose testing, injecting & bolus of insulin, eating the correct food & bringing attention to the proper person the needs of a child with Type 1.  I do suggest lobbying & pressure by our local diabetes associations as well as supporting them in their campaign is instrumental.  Many voices are louder than one.  I urge you to take part.

How to Prove You’re Cool with Diabetes

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How to Prove You're Cool with Diabetes

“Did you make any friends?”

After the first day of Kindergarten or starting a new school there are many questions to ask. The answers are usually pretty straight forward. Kids usually come home from school telling of events that occurred with their friends. Some days it is the story of “So and so is not my friend anymore, they did this to me…” or “Look at the picture so and so made for me.” or “So and so gave me their cookies and I traded them my chocolate milk.”

Children are compassionate and caring. They are resilient. Children are honest but also cruel.

As a Mom, I was witness to a mob mentality with a group of Grade 4 boys.

As I mentioned in my blog yesterday, after speaking with the children in Kurtis’ class, it seemed some of the kids would play with him. He now had a small group of friends. Once they knew they couldn’t get diabetes by touching him, they were okay with playing with him.

In October of his Grade 4 year I started Kurtis on an insulin pump. Thankfully his teacher was incredible. She was a classmate of mine from primary and high school. She was very proactive in Kurtis’ care and the learning curve associated with learning how to pump. At that time I worked part-time in the hospital as a nurse in the Intensive Care Unit. The teacher knew she could call me at work or home for questions or concerns. The calls initially were frequent.

Upon starting Kurtis on his pump, I opted to start him on an angled teflon infusion set. I tried a straight-in set but they kept bending causing sudden, extreme highs. I felt the angled set would give us more consistent results. The introducer needle was large enough, depending on where it was inserted, it could be quite uncomfortable. I put EMLA cream on his site one hour before inserting so he wasn’t feeling the discomfort. It worked beautifully.

One afternoon I received a call from his teacher. She sounded excited. She wanted to tell me that Kurtis’ infusion set had ripped out during recess. She was so proud of him. There was no EMLA cream in his kit. Kurtis decided he would insert the Silhouette without it. Mrs. Sperry was awesome. Instead of sending him down to the office or nursing station to change it, she would over see the change. The class was curious to watch.

At this point, the ‘cool’ boys were not as interested in playing with him. This bothered Kurtis. He wanted to play the sport games they played at recess. He didn’t want to just walk around the yard, he wanted to be active. I told him although I understood his need. I also encouraged him to start his own games in the yard, but he wanted to play with the athletic, cool boys.

During the phone call I was told that the kids were so impressed with what Kurtis had done. They talked about it all afternoon. Kurtis had put a really big needle in his stomach. He was SO brave.

Not one Certificate of Achievement could ever make Kurtis feel as proud and accomplished as that day. Days and weeks later, the Grade 4 ‘cool’ boys began to invite him to play at recess. The icing on the cake for Kurtis.

As a parent I had mixed feelings. To me it was a form of intimidation. A child having to go through a form of initiation to be friends with children so he could gain the acceptance and confidence he needed to feel good at school. I understand this happens with all children to some degree, with or without diabetes. I have seen it in a milder form with my daughter.

I had to accept that this was part of learning and life with diabetes. Since those days of Grade 3 and 4, I have hoped and prayed that Kurtis would learn that he should never have to prove himself to anyone because he lives with diabetes. It’s hard to convey that to a child, especially when they feel isolated from their peers because of it. As with many things our children experience, we can teach and guide them, but sometimes they just have to touch the stove to understand it’s hot.

Tomorrow my blog will be on the situations and concerns about Kurtis’ safety with his diabetes at school.

You Can Get Diabetes By Touching Someone

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DBB FB Blog Catch Diabetes Touching

Our family moved in 2001. As a result of the move the kids transferred to a new school. Kurtis was living with diabetes for just under one year. In his previous school the acceptance & understanding of staff & children with his diabetes was great.

Within weeks of his new adventures of being a 3rd Grader in his new school, Kurtis informs me he can’t make friends. “Why?”, I ask. “They point at me and laugh. The kids are telling other kids if they touch me they will get diabetes.”

Within days I receive a phone call from his teacher. She asks if I will come in & speak with the class. She tells me the same story Kurtis has just days before. She wants the class to learn about diabetes.  She is concerned that the misinformation being discussed among his peers will lead to long-term issues.  She is concerned for Kurtis’ well being.   Ms. Maker explains she feels I will make an impact because I live with diabetes as well. They will see me as a Mom who is a nurse, I have friends & I have a daughter that doesn’t have diabetes. I agree & start planning how I will speak to the children about this.

The main myth to displace was reassuring them that Kurtis didn’t get his diabetes from touching me.   My plan was to think like a 7 & 8-year-old.

Word for word I can’t tell you what I said or how I said it.  It was a little less than 12 years ago.  I do remember sitting in a chair with the kids sitting on the floor around me.  They had a lot of questions.  I kept it simple.  Kurtis was pleased & so proud his Mom went in to talk with the kids about his diabetes.  It helped with them being more social with him.  He was not gawked at as much.  But making friends continued to be an issue until Grade 5.

Look for my Blog tomorrow on what happened that caused the children to respect Kurtis and his diabetes.

 

 

Yesterday and Today

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Yesterday and Today

In 1975, I was diagnosed with Type 1 diabetes after months of my Mom telling our family doctor something was really wrong.

He insisted it was a cold & I would recover in time.

Finally, after several months of symptoms such as wetting the bed at night (after having been toilet trained for years), having to pee before we got to the end of the driveway for a walk, weight loss (my Mom says my ribs stuck out, she thought when she picked me up she would break them), extreme thirst & sitting on the toilet crying because it burned so bad when I peed, my Mom felt relieved as she thought she knew what was wrong…. I had a bladder infection.

After the refusal of our family Doctor to see me anymore and upon the firm insistence of my parents, I was finally seen by another Doctor. When they dipped my urine for an infection, instead, they found large amounts of ketones. I was rushed to the hospital. I was also diagnosed with Whooping Cough. I was hospitalized for 10 days. Back then my Mom couldn’t stay with me overnight. I still remember that stay. It was very traumatic. I missed my Mom so much. I hated when she left each night.

I was just weeks shy of my 6th Birthday & weighed a mere 31 lbs (14 kg). I was started on 1 injection in the morning of Lente & Toronto insulin. Both insulins were unpredictable. The needle length went into my muscle instead of my subcutaneous tissue making the unpredictability worse, but there was no one then who was aware that a 13mm needle was too long for anyone, big or small. My Mom tested my sugars by urine through a dipstick. The goal was to have a dipstick with Trace sugar & no ketones. I did not receive my first glucose meter until I was 11 based on the cost which was about $200.

Based on my diagnosis, experiences, changes & the management I have experienced throughout the years, I am thankful for so many things:

1. My parents were told I would never have children. Although at the time I announced my pregnancies there was a lot of worry, I successfully have had two pregnancies (although very challenging) & two beautiful children.

2. I am blessed to have no complications after 37 years, which is rare.

3. I am living in a time where the technology advances in managing diabetes are becoming available faster then we can acquire them but provides the opportunity to get access to & manage it better.

4. We seem to be closer to a technology that allows for less management on our part & the reliance on bio feedback mechanisms that will reliably do most of the work for us.

5. Pharmaceutical companies that create, manufacture & produce insulin, such as Novo Nordisk Inc., are creating programs which offer easier access to children living with Type 1 diabetes living in developing countries that otherwise would not have it and risk dying due to affordability & access. Much still needs to be done about this (one of my passions) but the movement by corporate has started to fill this huge gap.

6. The choices and dissemination of media communication and access is the forum for supporting curiosity, access, acquisition of knowledge and action with regards to living with diabetes. This is essential to empower people living with such a complex disease.

7. I have been blessed to be part of a network with many gifts, experiences & an education that enables me to practically & clinically share with each of you, no matter where you live, what is needed to live with Diabetes Beyond Borders.

Keeping it Even

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Keeping it Even

As a parent do you worry about how being fair with your children?

What parent has not heard these phrases ring in their ears, “It’s not fair” or “You love him/her more than me” or “But you let/paid for/told/ agreed that ________________could so why can’t I?”.

It is difficult to learn what is ‘fair’ or how to keep it ‘even’, for that matter, if we should.

Not only am I speaking of rules, decisions, result, how many gifts, how much to spend for Christmas, Birthdays and the multitude of special events throughout the year, failing or passing grades. I think of all these things that I am mentioning and I will say that quality time is the one that is and has been a concern for me.

Why?

The attention required in a family with a child living with Type 1 diabetes is quite demanding. Add to that, the attempt to keep the balance ‘normal’ with their siblings.

I have written a few Blogs about my son Kurtis given that Diabetes Beyond Borders intention is to write about life living with diabetes.

Pictured in this blog is my 21-year-old daughter Cayla at her graduation from Sound Engineering. She has also lived with diabetes. Her life involves looking in from the outside and living with the demands it has on our family.

Cayla is the first person that will email me a link to pictures, articles and studies related to Type 1 diabetes. She has been an impetus for some of the writings I have posted.

I have felt guilt over the years as she saw her brother unresponsive and rushed to the hospital by ambulance from a severe low. She has watched her Mom being carried out of the bedroom with a severe low on the morning of her 5th Birthday. She could write a book of all the events she has experienced living with diabetes. Events and situations I hoped I could protect her from but eventually accepted I could not. She has been a part of it all as much as her brother and I have.

I tried my best to protect her. Give her what she required as a child living with her Mom and brother having diabetes. I tried to keep it even when it came to parenting despite it all. Upon reflection, I don’t think it was the balance I realistically dreamed achieving but I think I did okay.

In the past two summers Cayla has experienced episodes of low blood sugars. It concerns me. During one event, by the time I was able to test her, she was 3.2 mmol/L. She had just eaten. That worries me.

With that being said, all we can do is wait and watch. She is well-educated to the signs and symptoms of the onset of diabetes. She is miles away from me in Northern British Columbia now, but I am confident in the facts with her experiences so far and her education, that she is aware, intuitive and pro active in whatever comes her way. I am happy for her that she can take a break from living with diabetes. I pray that she continues to have that.

I am a Mom living with diabetes, I have 2 children that live with diabetes as well.