The Stealth Fighter of Diabetes

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The Stealth Fighter of Diabetes

I liken a Stealth Fighter to an undetected low blood sugar. Until I started back on my Continuous Glucose Meter a few weeks ago I thought I was overwhelming tired at times because there was too much going on.

Until I experienced a few incidents…one thankfully I detected & treated by finger poke thanks to the prompting of my fiancĂ© & subsequently, the next detected by CGM.

The first happened shortly after I woke up. Our routine involves enjoying coffee & tea while catching up on local & international events & updates. I became extremely tired soon after reading updates on my computer. By the time I was in the kitchen making eggs, my heart was beating fast & I began to have a hard time breathing…not symptoms I usually have with a low blood sugar. In my mind I reviewed the things that may be overwhelming me. I am forever making a list in my head of the days & weeks ahead. I thought maybe I was getting ahead of myself too much, putting myself in a bit of a frenzy. I realized it wasn’t that, BUT I just couldn’t put a finger on the pulse. As we sat down to breakfast & I began to eat the poached eggs the racing heart & difficulty breathing continued. As I ate my poached eggs, I realized I was having a hard time eating. I felt nauseated…almost like a brick was in my stomach. I began to tap my foot in an attempt to focus on what the issue was. Within a few seconds of tapping my foot my fiancĂ© Steve asked me what was wrong. By this time I had tears in my eyes & a lump in my throat. In my mind I was thinking “What the heck is wrong with me!!”. I said to him, “I don’t know.” He summated what could be causing it. Then he asked if I had checked my sugar. I agreed that was a good idea. I was 3.2 mmol/L!! It didn’t feel like a low I would usually have! Once treated, these crazy, weird symptoms disappeared.

Shorty after, I decided it was in my best interest to start wearing a Continuous Glucose Sensor again. I have to be honest, when I have a sensor in I love it. It truly is the ultimate advancement in technology that I never thought could exist given what I have experienced in 38 years living with Type 1 BUT I have a huge block with taking the time to prepare, insert and calibrate. It’s not that much more work than I do with wearing a pump, but I guess it’s just that one more step or three that I just don’t want to do. The motivation to take those extra steps becomes exponential when experiencing a stealth fighting low like described above.

The second undetected one I had was shortly after I had the first sensor in. It was shortly after breakfast (do you see the morning BG’s as being my source of trouble!). Again, I became tired. Not the same tired I get with other lows…I didn’t think so. I went upstairs to have a shower. I checked the CGM graph to see what my BG was at. It was 5.4 mmol/L. Good! I have my cell in the bathroom for those ‘just in case’ moments. I never stop being a Mom even though the kids are in their 20’s. Although none of them were from my kids I hear my phone ring, text tone and email going off. I border on irritation as I promise myself that for the few minutes I’m in the shower the world & my kids will survive without me having access to my cell, thus me having a peaceful moment in the shower. Still feeling not quite right & overtly irritated given how good natured I usually am, I am not able to put a finger on it. My pump begins to go off. It is alarming like crazy. By this point, I realize I’m quite low. I finish as quickly as I can & get to my pump. As seen in the pic above I am 2.4 mmol/L & still going down!! I put in a temp basal of 0%, put some clothes on & head downstairs to get some fast acting sugar. It took an hour to have the residual symptoms subside. Boy was I ever tired!! It scared me.

It occurred to me that I had been having these incidences many times a week for quite sometime. The reason why I didn’t pick up on the lows by finger poke? Each time I tested when I felt tired except for that day at breakfast, the lowest I tested on my meter was 4.1 mmol/L. Even that morning after my shower my meter only tested to 4.0 mmol/L. Which do I trust? Based on how I felt & the technology I decided that these lows were truly stealth-like. Based on the fact that glucose meters can ‘ideally’ have a variability of 20% in tests, I decided it was time to take action.

It has taken a lot of work in the past 3 weeks to nail it all down, but changes have been made & I notice a huge difference. Be ware of the Stealth Fighter of Diabetes…it is alive, well & undetectable.

 

Never Prepared

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Never Prepared

In all the years the kids were in primary and yes, even high school, I only missed one year of their first day of school. In my mind it was a given I would be there. I had to be there so I could take, what would become, the “First Day of School Picture”. It was very important to me and I felt for them, to be there to tell them to ‘have a good day, be safe, I love you’, giving them hugs and kisses before they got on the bus. The picture I took each year measured many things. Growth, happiness, anticipation, excitement, love, memories, health. I wanted to make sure the kids knew that school was a big deal. It was a positive place to be. Learning at school was as important as at home. This is a pic of Cayla, 9, and Kurtis, 7, in September 2000. Today I showed Kurtis the pic. He tells me he doesn’t like the picture, he thinks he looks like a geek. :p

In this photo, Kurtis is less than 2 months away from the day he was diagnosed with Type 1 diabetes.

Not knowing the ‘stats’, from the time my kids were born, I kept an eye on how much they drank, peed and gained weight. It didn’t occur to me to look up the ‘stats’ on being a Type 1 parent and the chances of ‘passing’ it on to my children until after Kurtis’ diagnosis. According to the American Diabetes Association, the stats read like this:

Both parents (neither have Type 1) have inherent risk factors that contribute to a child developing Type 1.

A child with a Dad living with Type 1 has 1 in 17 odds of developing Type 1.

A child with a Mom that had him/her before the age of 25 has a 1 in 25 chance of developing Type 1.

If Mom has her kids after the age of 25, the odds go up to 1 in 100.

A parent diagnosed with Type 1 before the age of 11 provides a risk of double that their child will develop it.

Regardless of the stats, in my gut I knew. I spoke with other parents who live with Type 1 diabetes that have the same worries as me. But is the effect of the diagnosis the same as a parent that has no idea until diagnosis that their child may develop it?

I try to put myself in my parents shoes as neither one of them have Type 1. Now mind you it was 1975, but hear me out. I am imagining myself as a parent living without Type 1 who has a child that is diagnosed with Type 1. The ‘radar’ saying “I will keep an eye out, just in case.” doesn’t exist. When that day comes. When my very sick child is before me and the Doctor tells me that he/she has Type 1, finally, because heaven knows in this modern-day of technology and knowledge it seems the awareness of signs and symptoms among many health care professionals still does not exist. I am told he/she will take injections of insulin to sustain them for the rest of their life. My mind would spin. I envision myself being whisked off to the hospital or clinic with my very sick child where I would be expected to take a crash course on how to keep my child from having lows so severe they could die and highs so high they become very sick with ketones with the risk of developing long-term complications, possibly dying from these complications. I would be expected to learn how to titrate a medication that is life saving but can cause death if not treated with respect. I have to learn how to poke my precious child with a sharp needle not once a day but several times. What are kids most fearful of? Pain. What do glucose tests and needles cause? Pain. What does a parent try to protect their child from at all costs? Pain.

I can’t tell you it was easier for me. If it was, it would be difficult to relate to the feelings of a parent not living with Type 1 prior to their child being diagnosed. I was ‘blessed’ to have more experience and knowledge. That’s all. At the end of the day, I am a parent first.

Kurtis’ ‘road’ to his diagnosis began 2 years earlier. He was 5, the same age when I was diagnosed. On one particular day he seemed to be drinking and peeing more than usual. I don’t know how, as he was my strong willed child, but I convinced him to poke his finger without much fuss. His blood sugar 2 hours after he ate his meal was 8.2 mmol/L (148 mg/dL). My jaw dropped. My stomach flipped. I called the Family Physicians office immediately. The receptionist told me to check his sugar after having him fast 12 hours. Now, I do have to say, this was not funny at the time but as a parent and now that I speak of it, it is. 16 hours later, I finally promised Kurtis I would take him to McDonald’s. I never took my kids to McDonald’s!! I was SO desperate & scared, I promised if he let me poke his finger I would buy him a McHappy Meal. He agreed. It is now 10am!! He must’ve been starving! Kurtis’ sugar was 4.8 mmol/L (86 mg/dl). I called the Physician’s office to report back. I wasn’t convinced that this made it all right. I had that gut feeling a parent gets when they “know” something isn’t right.

Fast forward to September and October 2000. From the time Kurtis was a baby he had a history of ear and sinus infections. He lived with one ear infection after another. From one sinus infection to another. He would finish one round of antibiotics and would be onto the next.

As usual, Kurtis had a healthy summer. On the first day of school, as pictured, he seemed great, looked healthy. Once exposed to the school environment of germs, sneezes and coughs, his health slowly declined to a point I knew he was going to be sick. Dark shadows under the eyes and very pale. I would keep him on a tight schedule of bedtime and keep him fed well with healthy, home cooked meals. It didn’t seem to matter.

But, this time was different. Kurtis had that ‘look’ I was familiar with. I was perplexed, he wasn’t getting sick. At that time, for his age group, track pants were the fad. He was always a big boy. Always in or over the 90th percentile in height and weight for his age. When he had a growth spurt he would get chunky and stretch up. Being 7 years of age, I didn’t weigh him often or become concerned if he thinned out a bit.

October 31, 2000. I had sent Kurtis to school with a plate full of treats for his classes Hallowe’en party. As well as making a point of being there in the morning to put them on the bus, I tried my best to be there to see them come home from school as well. As Cayla and Kurtis walked in the front door, I was excited for them. I looked forward to carving their pumpkins and get dressed up for our night out Trick or Treating. As I prepared and fed the kids their after school snack, in the conversation of asking how their day was, Kurtis’ informs me that he didn’t eat much at his Hallowe’en party because he felt sick to his tummy and peed and drank at the water fountain all day. I wanted to throw up. I knew. I didn’t even have to check him to know. But of course, I did.

After explaining to him my suspicions and what I needed to do to confirm, come hell or high water, Kurtis was not going let me check by finger poke. I did a dipstick of his urine. I wanted to cry. The test strip showed 4+ sugar. It was 4:30pm. I called the Family Physicians office again. In the background I could hear Kurtis crying “I hate diabetes” “I don’t want diabetes”. This time I knew it wasn’t going to be instructions to check his fasting. In my mind at that time, all I could think was, I GAVE my baby diabetes.

I believe my emotions with Kurtis’ diagnosis may be a bit different, but not much then parents who don’t have diabetes. In the end, I have come to terms with the fact, it doesn’t matter. It is what it is. BUT, with that being said, and why I write this post is that there are two things I learned that I want to pass onto you. Whether you are a parent that has ‘passed’ on Type 1 to your child or parents that carry those dreaded inherent genes that we know little about ….

1. I cried to my Mom many times about the fact I ‘gave’ Kurtis diabetes. I felt SO guilty!! Being the amazing Mom she is, do you know what she asked me? “So, if you were to chose whether you had Kurtis or he had diabetes, which would it be?” OH MY!! There is no choice! I would have him a thousand times over!!

2. A year later of Kurtis & I grieving (separately mind you, he never saw me grieve) he would sit on the couch trying to inject himself (he insisted) for a minimum of an hour morning and night. I would listen to him cry and wail about how much it hurt and he can’t do it and he hates diabetes …so painful to watch. I finally realized I was enabling him to be pitied for something he had no control over. I don’t believe in enabling people to be pitied. I then realized I needed to empower him. I told him he had no choice. I told him it sucked living with diabetes BUT he could do whatever he wanted to do! I asked him if he saw me wailing and crying over taking my needles? Did he see me feeling sorry for myself? I told him I would no longer tolerate pity. He could share his feelings but could not use his diabetes for pity.

Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future. Nelson Mandela

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.

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.

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.