Pain: Motivator or Deterrent?

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Pain: Motivator or Deterrent?

We read this sign as we entered S-21, the prison where Pol-Pot & the Khmer Rouge imprisoned, tortured and killed about 1 – 3 million Cambodians, approximately 25% of the total population.

As I read the “Regulations” I try to imagine what would go through my mind if I were a prisoner. I see pictures of what they endured. I ask myself, would these rules motivate me to do what they say, not because I feared the punishment, but with the hope of living and someday escaping? Or would it deter me from abiding by these rules because I felt hopeless and defeated, feeling like I wouldn’t succeed anyway?

Although it may not seem to be life and death, there are many events that occur in our daily lives that should be considered in a similar fashion.

No, it doesn’t appear that we are in a situation where we will experience terrible electric shocks or hang by our hands with our arms behind our backs until we pass out. These things are inhumane and disturbing at best.

BUT, what will the end result be in trying to ignore the things in our life that should be a priority? It certainly is not as acute or terrifying as what the Cambodians experienced but keeping that top of mind we have to decide what motivates us and what deters us if we know the ultimate price may be painful.

Would you read the “Regulations”, whatever those may be in your life and agree that your motivation to stay within those boundaries are worth living a full, satisfying, healthy life? Or are you deterred by the outcomes you have experienced so far and feel hopeless and defeated?

I want to encourage you that no matter where you are in your diabetes management or that of the one you love, there is always a reason to stay motivated. Move past the pain and look forward to what you want in life.

I urge you to start day dreaming. If you need to step away from your situation to do this, go for a walk, sit in a park, go to the library or book store. Visualize the final outcome. Take a piece of paper and write a letter to yourself like you would another person you care very much about. Explain to yourself the pain you are experiencing, the struggles you are feeling. In detail, describe what you want for yourself. List the steps on how you are going to get there and the length of time, short and long term. When you are going to get there? Take an envelope with a stamp and address it to yourself. Drop it in the mailbox. In a few days when you get it, read it, store it somewhere safe where you can pull it out and refer to it and act on it.

I met a man at the S-21 Prison in Cambodia, one of the last survivors. He wrote a book about his experience. I sat down beside this man and wondered how he could be so strong after enduring so much. Here he was, an old man, smiling, sitting in the same place that caused him so much pain. In his hand was the book he wrote. I imagine how difficult it must’ve been for him to write it. Recalling not just the pain he endured, but hearing people screaming and begging for mercy as they too were tortured and killed. Why would he want to write a book, sit at the place that he should never want to see again? Even in his old age it was apparent to me that the pain he endured did not deter him from the motivation to live life and be heard.

How do you want to live your life and what do you want to say? What will motivate you through those moments of pain?

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

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.