All I Ever Wanted – My First of Two

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All I Ever Wanted -  My First of Two

Pictured is days after Cayla was born on June 18,1991. She looks abnormally fat, doesn’t she? She is in the Newborn Critical Care Unit. That is the look of a Macrosomic baby. She was SO sick. I was very sick as well, but not related to diabetes.

In 1990 when I found out I was pregnant with Cayla, I lived with diabetes for 15 years.

At that time I found out I was pregnant I was in my 3rd year of Nursing in College. I was only in College because my Mom told me I should get a post-secondary education “just in case”. She told me that as a woman it’s always good to have an education for when I ever needed it. I didn’t see the point at the time & so much so I was initially kicked out of my 1st year of Nursing. I cared so little about having a post secondary education. I was in love & I just wanted to get married & have a family. That’s all I cared. Before re-starting back into the last half of my 1st year, I married. That helped me re-focus on achieving the education I ‘should’ have.

In the second year of Nursing I did a rotation in the Labour & Delivery floor. Ultimately I helped with several deliveries. I ached for a baby. I wanted to be a Mom SO bad.

At that point, I had 2 goals.

1. Finish my Nursing with honours. My goal was a result of being ‘told’ I couldn’t do something. That wasn’t true, but I saw it that way. I saw it as “they kicked me out, I’ll show ‘them'” I would finish it & with pizzaz.

2. Get pregnant.

Anyone who knows me understands that when Tracy wants something, Tracy will do all the right things & take all the roads needed to achieve it. It takes some painful learning, but I get there in time.

What resulted?

1. Tracy became pregnant 2 months into the 3rd year of Nursing.

When my classmates told me it would be near impossible to finish my year out (my due date was the 1st week of July) or ask me how was I going to do it with diabetes….it made me dig in my heels deeper. I would do it all!! I would graduate from Nursing with Honours, have my baby, write my Nursing exams, become a R.N. & be the best Mom ever.

The Diabetes Complications & Control Trial had yet to begin. There were no guidelines for pregnancy. I had not seen a Diabetes Specialist in years. Thankfully I went to my Family Physician within 6 weeks of suspecting I was pregnant. Back then, the home tests to decide pregnancy were not reliant so early. By blood test, the physician confirmed I was. He immediately referred me to an Internal Medicine Physician who specialized in diabetes. It was not an easy pregnancy.

The variables:

1. My long-acting insulin therapy consisted of NPH morning & supper (today all nighttime insulin is injected at bedtime to avoid missing the coverage of the Dawn Phenomenon causing sometimes severe low blood sugars in the hours shortly after midnight).

2. My short-acting insulin therapy consisted of regular insulin, once at breakfast, once at supper. Humalog had not been launched yet. I knew by how sleepy I was after meals that the regular insulin was not covering my needs. Sometimes, I would take very small doses of regular at lunch to see if it would help. I look back & see how incredible it was that I knew if I could coordinate my meal insulin to my meal sugars I would feel better. Unfortunately, it just resulted in severe lows as it stacked throughout the day.

3. I began my Clinical Consolidation shortly after I became pregnant. I worked 40 hours/week on shift in the hospital. As well, on the weekends I wasn’t on shift at the hospital, I was working as a cashier at a grocery store to help pay the bills. Weekly hours I put in between consolidation & work until I was hospitalized at 32 weeks was in excess of 45-50 hours, not including assignments & studying.

I remember the wild swings in blood sugars. I remember panicking every time the meter I used since I was 11 showed a high or low. I knew it would hurt my baby. Even then hypoglycemia protocol was not in place. If was low, I panicked as I always did. I would drink juice & then eat & eat. What resulted was a high so high I had to take regular insulin to correct in fear I would hurt my baby. As time progressed with the pregnancy, I learned how to manage certain issues. A low treatment was a couple of mouthfuls of milk. That seemed to keep my sugars more stable then before. I decreased the amount of carbs I ate. This eliminated the wild swings.

Unfortunately, it was too late, it did not save my first-born from the complications of a poorly controlled pregnancy.

1. As soon as Cayla was born, her blood sugar was tested.  She went from 11 mmol/L (198 mg/dl) to 2 mmol/L (40 mg/dl) in a matter of minutes.

2. Throughout my illness in the hospital, not related to my diabetes, I gained 45 lbs of fluid. Cayla gained fluid as well. Upon birth she weighed 9 pounds 11 ounces because of this. When they tried to insert an IV to bring he sugar up, they had difficulties getting a vein.

3. She was very, very ill with jaundice. Not only was she placed under lights, but her body was wrapped in a specialize blanket that emitted extra phototherapy. My baby was SO yellow. They poked her little heel with a razor blade too many times. I cried as she shook & screamed when they did it. My saving grace was I saw she had spunk!!

What I describe are the behaviours & control that lead to what Cayla was born with…Macrosomia. She & I were so fortunate, she did not have any respiratory problems. She was only in CCU for 1 week. Each day they told me I couldn’t have her in my room (I was too sick to go home too) I cried. I just wanted to be a Mom.

I took mental notes of my experience with my pregnancy with Cayla. I used them to my advantage with Kurtis.

Look for my post tomorrow on my pregnancy & birth of Kurtis.

As Exciting As the Discovery of Insulin!

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As Exciting As the Discovery of Insulin!

In 1983 and for the next 10 years, researchers began to study whether intensifying diabetes management among people living with Type 1 made a difference. Up to this point there had not been long term research to provide data to prove this to institute change.

When I was diagnosed in 1975, I started on one injection of NPH and Toronto in the morning.  A Keto-Diastix before & after school & at bedtime was dipped in a urine sample to determine sugar & ketones. Little did we know that it was not an accurate test of glucose control. Every 3 months my blood work was done & thankfully my A1C as well. We would see the Paediatrician shortly after.

In 1981, an extra injection of NPH & Toronto was added at supper time. Around that same time I received my first glucose meter.

This study has changed the way people with Type 1 diabetes are managed. It was & still is exciting!

Here is what the Diabetes & Complications Control Trial is about.

There were 1,441 people from Canada & the U.S from 29 centres living with Type 1 diabetes more than 1 year but less than 15 years. They could not take part if they had too many or severe low blood sugars, severe complications or limited life expectancy. The ages studied ranged between 13 and 39. Young children were not studied. There were 2 groups; 1 had their diabetes managed intensively, the others managed as before.

The main goal was to keep blood sugars as normal as possible through a criteria of intense methods for diabetes management.

Clinical findings & significance:

1. The risk of eye complications were reduced 76%.
2. The risk of complications of the kidney were reduced by 50%.
3. The risk of nerve complications were reduced by 60%.
4. By keeping blood sugar’s as normal as possible, the onset & progression of eye, kidney & nerve damage caused by diabetes slowed.
5. Even those who had a history of poor control who sustained any type of BG lowering showed a difference in the progression of complications.
6. For those who already had eye complications by participating in intensive management of their diabetes, they saw the progression of the complication slow by 54%.

What is Intensive Management?

1. Testing BG 4 or more times a day.
2. Injecting insulin at least 3 times per day or using an insulin pump.
3. Following a diet & exercise plan.
4. Monthly visits to a health care team which consists of a physician, nurse, dietician & behavioural therapist.

Risks involved with participating in an intensive management therapy? Low blood sugars. It was clear that less stringent goals are appropriate for some patients.

This trial has become the pioneer of studies that changed the management of Type 1 diabetes . Since completion of the study in 1993 there has been further work done to answer more questions & give more data. I will continue to post on these.

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.

 

 

For most diagno…

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For most diagnoses all that is needed is an ounce of knowledge, an ounce of intelligence, and a pound of thoroughness. – Anonymous

In January, for the second time in two months I arrive in the Emergency Department.  

I have to be in pretty rough shape to go there.  I can count on one hand how often I have gone for myself.  Having worked in the ER, I have seen people’s definition of what an emergency is.   I don’t want to be one of those people.  But, here I am doubled over in pain again.  Just before heading out the door, I stand with my hands shaking, heart pounding, crying…Googling my symptoms one more time, trying to find a diagnosis that I can fix so I don’t have to go.  Then I think to myself…what if I am dying of something and they can treat it?  That would be really stupid!

So off I go.  The Triage Nurse asks what’s happening.  I tell her.  She takes my history.  Takes my blood pressure.  WHOA!!  I guess I am in pain….155/100.  Ok, I feel a little more justified in being there.  They take me right in.  Ok, I’m feeling even more justified.  

The ER Doctor comes into assess me and has already looked up my health history from the past 10 years! That’s a first!!  I describe to him what I have and am presently experiencing.  I tell him my thoughts about it.  I tell him the tests I have had.  He urgently orders a shot of pain medication in my hip.  The nurse comes in and tells me that it will sting a bit as it is going in.  As she injects it, I comment to her that it doesn’t really hurt.  THEN, she pulls the needle out and man, oh, man…talk about a delayed reaction!!  The burn!  But, if it was going to take the pain away, the burn was the least of my discomfort.

The thorough assessment by the Doc gave me some reassurance that this time there would be a diagnosis.  Although I had an Ultrasound and a CT Scan from my earlier ER visit, which showed nothing, the Dr insists I should have another CT Scan.  In my mind, I am thinking MRI! MRI!  But I figure I will humour him.  

Finally the pain med begins to take the edge off.  During the Ultrasound, the Tech is taking the probe across one spot in particular, over and over.  Let me tell you, that was fun…NOT!  A necessary evil.  Finally, she asks if I have a had a different type of Ultrasound.  I have not and feel a sense of relief that she is deciding to do this.  Afterwards, she informs me the ER Dr will talk with us about the results when we go back to Emerg.  She sends us on our way.

Back in the ER, it takes the Dr a bit of time before he comes to speak with us.  I am terrified. Is it, he still doesn’t know or something very serious?

He tells us he has spoken with a Specialist and tells me I have a condition called Adenomyosis.  OK!  I have an answer.  I have a condition.  BUT, what is it, I ask.  He says he doesn’t know, he has never heard of it.  Huh?!?  So is it treatable?  Is it something I have to live with the rest of my life, because pain and diabetes management don’t go well together.  Is it terminal?  He tells us the Specialist wants to see me in a week to discuss treatment options.  In the meantime, he sends me home on Tylenol #3’s and prescription NSAID’s.

I whip out my phone and go to Google.  I guess the Dr doesn’t have Google or a Medical Dictionary at the hospital (insert sarcasm).

After reading about it, a wave of relief washes over me.  I know what the discussion will be with the Specialist now!  It is treatable.  I will need major surgery.  I am excited.  Really, I am!

After researching more, I realize the many issues I am having with my body the past many years, I now know are directly linked to this one condition.  The surgery will fix these things!  

In less then a month I am looking forward to beginning the recovery process.  In the meantime, I have focused on eating well, taking my vitamins and supplements, keeping my blood sugars tight, getting enough sleep and walking.  Ideally, I would like to exercise more intensely to strengthen my muscles but I am not well enough for that.  I remind myself in a few months I will be able to.   I have been reassured by a few friends who have had the surgery that I will wake up one day on week six of the recovery and realize how great I feel, how rough I’ve felt these years.  The countdown is on.

I am looking forward to my new life.

Parenting a Child/Teenager with Type 1 Diabetes

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Parenting a Child/Teenager with Type 1 Diabetes

Throughout the years, I have half heartedly joked with my son, Kurtis, that he is fortunate he was diagnosed with Type 1 at the age of 7. I would kid that at least he had 2 more years living without diabetes than me. Sounds morbid, I know.

I liken my diabetes humour to the sense of humour nurses have. Those outside of the profession hear some of their jokes and furrow their brows wondering how it could be funny at all. Being a nurse and working in a variety of settings, one of them being Critical Care, I can say that the humour is a coping mechanism. My earlier tease with Kurtis is the same.

As with any parent who has raised a child with diabetes, I could write you a book on what has and hasn’t happened through the past 12 years. Throughout the book, there would be similar, repetitive phrases of how difficult it has been, how many times I have stood over my baby, watching him peacefully sleeping wishing, praying he never had diabetes or that at the least there was a cure.

The book would have chapters of trying to create a life as near to normal throughout his childhood, pre-teen and teen years. How daily he was told he could do anything he wanted to. There would be stories of his anger, temper tantrums, confusion…intermittent emotions every child has, but playing the sleuth, trying to determine whether he was just being Kurtis or his diabetes had set his emotions on roller coaster.

As you would read further it would speak to how hard it is to step back, take a breathe and know that at that moment this is not the child you know. Understanding that at that moment, I need to show him more love and compassion then what I thought were required of a parent. To acknowledge his feelings of being out of control while teaching him that these feelings and outbursts are a red flag to check in and see what needs to be looked after. To empower him to be able to look after it, some day independently.

One of the chapters would speak of setting the alarm every night for worry that he will go low in the night. The one night I take a break, needing one good night sleep, I find him the next morning unresponsive, lifeless. Hours later in the hospital I thank God that He kept him with me to care for a little while longer.

With many chapters yet to be written, I hope that Kurtis will finish this book with the happy ending of a cure.

In the meantime, I worry daily about Kurtis. He is 19. He thinks he knows what his blood sugar is by how he feels. He never tests. I am thankful he takes his insulin but not consistently. I wish he was younger. I want to tell him what to do and how to do it. I am terrified he will end up with complications or worse, not wake up one morning.

As I reflect on these past years, I have to remind myself that I did exactly what he did. I was a teen living with diabetes and thought the same way he does. Since his diagnosis I have taught him what he needs to know. There came a point in my life when I knew I had to shape up or pay the price. I pray that Kurtis comes to the point too. Sooner than later.