Tag Archives: endocrinologist

Numbers

My world has become consumed with numbers. A1c, 6.8, glucose rage 100 – 140, danger zone 70 or below, conversely 180 or above. Alarm sets for 12:00 AM, 3:00 AM, 6:00 AM, blood glucose checks every two to three hours, more if needed. Copay amounts, numbers of vials of insulin, amount of units to be dosed to cover carbs to be consumed, but through all these numbers, the most important number, five…..the age of my son who works through these numbers every hour of everyday with me.

Two nights ago, exhausted, my alarm went off at 3:00 AM, i snoozed it and 5 minutes later it went off again. I had checked Carter at midnight, and his blood sugar was 180. He didn’t have any insulin on board, other than his basal insulin and my body tried to convince me to just go back to sleep, that he was fine. My heart and brain knew better, I staggered out of bed and checked him……..45. The race began to save his life, as happens often with this disease.

My flight down the stairs began. I grabbed a juice box, a cup of milk, and some marshmallows, and his glucagon, running back upstairs prepared for anything. Carter started not being responsive to the juice box, I climbed into his bed, and sat him up, shaking, he started to open his eyes. I opened his mouth and squeezed the juice in. He started to respond. A new number became prevalent, 20, the number of minutes I would sit with him to make sure this low is properly corrected.

Carter fell back to sleep, in my arms, and I then sat counting his breaths. It’s never the same scenario, never the same number, never the same correction that works. It always feels like a gamble, shooting in the dark to see what will work this time. I then have this 20 minutes of sitting in the dark of my son’s room to think about the number of times I have called and beg and pleaded with insurance to approve the devices we need in order to keep my son alive, only to be denied.

My mind shifts to the number three, the exact number of weeks until Carter starts school, and will be in the care of teachers who don’t know what his lows look like, what his high blood sugars look like. Ten, the number of minutes it takes me to convince myself that pushing past my fears is the only way to give Carter a normal life in spite of this disease.

It’s all numbers, all the time. Luckily, this time everything worked out OK, after 20 minutes, I re-checked Carter and his blood sugar was 110. I spent the following 10 minutes stopping myself from think of the “what if” scenarios. Left back at one, another hour of sleep lost, but grateful that Carter was safe.

Managing Type 1 Diabetes is all about numbers, and calculations, and math. One wrong calculation can be unbelievably detrimental, and shift the whole day or night. We have become really good with numbers in this house, we have had to. Yet the biggest number that I hope to see grow, is the awareness of those in my life and beyond who will gain a better understanding of what carter goes through in order to survive.

The Pressure of Managing a Type 1 Diabetic

The one thing people never talk about, is the pressure associated with managing a Type 1 Diabetic child. Yes this disease is manageable, yes, there are many devices that allow for better management of a relentless disease, but the underlying responsibility and pressure are forgotten in the fold.

As the parent to a Type 1 Diabetic child, my son’s existence relies on my ability to care for him. Working feverishly to maintain stable blood sugars can feel like a futile effort most days. Not letting a bad day with Diabetes define you, can be even harder.

There have been many nights that I sit and reflect on the day and feel the guilt of things I should have done differently. After all, we have been working at managing this beast called Type 1 Diabetes for over three years now, I should be a pro by now. What I don’t account for is human error, it is so difficult to function at one hundred percent, when working on only a few hours of interrupted sleep.

Type 1 Diabetes robs you of so much, it robs you of joy some days, robs you of sleep, robs you of peace, and piles immense pressure onto an already weakened spirit. Some days it feels like it is crushing you. Yet through the ashes, beneath all this disease robs, it pushes you to view life through a different lens.

Every day, every moment is a gift. We fight every moment of everyday for survival, and for normalcy. Yet, the pressure is still there. When a severe low, or massive high rear their ugly heads, the pressure to stabilize my son can be suffocating.

When I feel completely under attack from the pressure that managing Type 1 ensues, I find that changing the scenery can help. Once I get Carter stabilized I will take the kids out of the house, take them to the park. Getting out in the fresh air, and changing our view has a forgiving effect that helps me feel human again. It can be easy, sitting in the house, feverishly monitoring blood sugars, carb intakes, insulin on board, to forget there is more than survival, there is life to live.

Some days, I have to be forced. Forced to look at the bright side, forced to get out of the house, forced to find the silver lining. These are the days when the pressure can seem like it is too much, where I would pay for a break, but it’s on these days, when once we have found the joy, it is so much more meaningful, because we have had to fight for it.

When You Feel Numb

There are days when you just feel numb. Whether you are new to diagnosis, or like us, have been managing Type 1 Diabetes for the past three years, some days are harder than others.

Carter has been struggling with lows lately, and sickness has once again permeated our home. My oldest daughter is recovering from bronchitis, and I have been working feverishly to keep the virus from attaching itself to Carter, add-on being 11-weeks into my fourth pregnancy and it’s a recipe for ultimate exhaustion.
While making dinner tonight, I heard Carter’s dex receiver beep. It was his low alert, I called him downstairs and asked him to bring me his receiver and come to me in the kitchen so I could help him correct his low. He brought me his receiver, I grabbed a yogurt handed it to him and told him to eat it.

Carter walked out of the kitchen, placed the yogurt on the dining room table, and went back upstairs to play with his sisters, unbeknownst to me. A few minutes later I hear his urgent low alarm sound. I run out of the kitchen, look at his dex, he is now 55. I race upstairs and walk into my daughter’s room and see a dazed Carter sitting on the floor.
I grab him, grab the frosting from his bag and shove it in his mouth. Once he is rising, and has finally hit a number in range, out of pure frustration I yelled at him. I yelled at him for being so irresponsible, for creating an emergency that wasn’t needed, but mostly because he knowingly left me to be the only one caring about his low blood sugar. Eventually Carter understood the error he had made, and promised me he would work harder at following instructions so this doesn’t happen again.

Now that my son is peacefully asleep, with good blood sugars, I am overwhelmed with guilt and sorrow. I understand that my son is only 4-years-old, but by the same token, having been dealing with Type 1 Management for the past three years, he is well aware of what is required to keep him healthy. I am very open with my son with the care we must have to ensure his survival, and what that entails, as well as the ramifications of not following the regime. Not taking care of himself results in a hospital stay at best, at worst it means death.

When Type 1 Diabetes has been dealt, there is no time for games. No time to test the waters, the consequences of playing games is too costly. I can’t be the only one in this house who cares about his health. With Carter starting school in less than six months, he has to obtain an accountability for his care.

He has to grow up fast, it’s unfair, it sucks, but it’s necessary. If I wasn’t preparing him to care for himself without my presence, I wouldn’t be doing my job as a Mom.

So though I feel guilty, though I feel sorrow, I know these feelings are temporary, that tomorrow is a new day, and that with each incident Carter is learning a lesson. He’s learning what my expectations of him are, what he must do to stay healthy, that he is accountable, but most of all, even though there was anger, he knows it is out of immense love for him that I am so serious about his care.

May tomorrow be filled with more feeling, feelings of joy, feelings of love, and less filled with the numb walk of going through the motions of managing Type 1 Diabetes.

Growing with Type 1 Diabetes

Managing Type 1 Diabetes, can be a very lonely existence. Especially when you are managing it for your child. Without being engrossed in the care that is required, it is easy to watch the care being given with judgmental eyes.

People ask me all the time when Carter will grow out of Type 1 Diabetes. When I tell them he won’t they ask me when it will all get easier. The answer to this question, again is it won’t.

It’s difficult to wrap one’s head around the effort that is poured into managing a Type 1 Diabetic, it’s impossible to bring to light all of the variables in one conversation.The majority of the time, days are OK, and manageable. But there are those days where everything changes on a dime and care becomes almost impossible. An uphill battle that feels like you are climbing up the side of a glacier, barefoot.

We are rapidly approaching the time when Carter starts kindergarten. I will have to relinquish control of his care to the team at his school and I am extremely nervous. I am face to face with a mountain that I am not ready to climb. Allowing someone to care for my son, and having the trust in them to make the right decisions, in a moments notice is daunting.

Type 1 Diabetes is not a play by the book disease. It is an illness that changes minute by minute, based on many factors: activity, insulin on-board, excitement, fear, basal rates, growth, being nervous, food, or lack thereof, and the list goes on and on.

This is a milestone that we need to get through, a hurdle that must be traversed, but my heart isn’t ready. Beyond the exhaustion associated with Carter’s care which spans twenty-four hours a day, every day, the preparation for Carter’s entrance to school has me stressed.

I have faith that my son will be adequately cared for, with proper training, I will relinquish control and allow my son to take more accountability for his health.  It is amazing, as I am reminded yet again, how Type 1 Diabetes changes every aspect of life.  One hurdle at a time, that is what is required when managing Type 1 Diabetes.

Barely Hangin On

Carter 4. 2016I’m not quite sure what landed me at this edge, feeling like I am barely hanging on. In a way, it feels familiar, like I have camped out here before, frequently.

Maybe the gateway to this campsite is illness. Any sickness that Carter contracts brings an anxiety that is difficult to describe. Most minute illnesses we get through without any issue, then there are those that land my son in the emergency room. This past Thursday was one of those times.

We had been battling the stomach flu, it began with Natasha, my 11-month-old, worked its way to Ashleigh, my six-year-old, and finally latched onto my three-year-old Type 1 Diabetic son. Both my daughters threw up twice, replenished fluids and rested and recovered within a full 24 hours.

Carter, began throwing up at 8:00 am and by 6:00 pm he had thrown up 8 times. He couldn’t keep anything down. It was at that point that I called the endocrinologist. Although his blood sugars were good, I could see the beginnings of something brewing. Dehydration, Diabetic Ketoacidosis (DKA), when Carter’s eyes started to look sunken in, I knew it was time to take him in.

Lately, I feel as though I am starving for mercy.  It has felt like one thing after the other as I struggle to hang on to the edge of the cliff I fell off of three long years ago.  Watching my son battle Type 1 Diabetes has been humbling, heartbreaking, and unequivocally stressful all at the same time.

I am tired of the guess-work that it requires to keep my son alive.  I hate that I can look in his eyes and see that he’s heading toward a low, or a high blood sugar, yet at the same time I am grateful.  Grateful that through immense trial and error I now know how to see it in his demeanor before it strikes.

I’m sad that the hospital is a close comfort, because I know that they have everything at their disposal to save my child.  I hate watching my son be brave for all the pokes, all the site changes, all the IV’s, and all the scar tissue which is evidence of his condition.

Being on the brink of a breakdown seems to be where I have set up camp.  I don’t know how long I will stay, or if my camp will ever move on to acceptance.   I do what I can to find a way to survive where I am, never having all the answers, always having to fight, not just for my son’s life, but for understanding from the non-diabetic community.

Those who don’t live this life, 24/7 don’t understand the difficulty.  In a way, I feel it is my duty to report what we go through.  Maybe to raise awareness, but mostly to raise empathy.  I would hate to watch my son navigate through an environment where no one knew what Type 1 Diabetes entailed, and had no idea how hard it was to live in a world that requires constant vigilance and monitoring.

Carter was released 5 hours after being admitted to the Emergency Room, luckily that is all he needed this time.  I caught him in dehydration, and the beginning of DKA.  I’m glad that I caught it, I’m happy that I stopped DKA in its tracks, but angry at the same time that my son is continually haunted by the possibility of an illness where he is worse off than his sisters because of a misunderstood autoimmune disease that doesn’t play fair.

I would be remiss, if I didn’t document these trails, if I didn’t talk candidly about the world that the majority of Type 1 Diabetics live in, just on the brink, the brink of  life, which consequently also is the brink of insanity.

I believe that is the cliff I have been hanging on for the past 2.5 years, the brink of insanity.  Knowing at any moment my son could land in the ER, knowing that my tireless efforts throughout the day, are futile, knowing that even though I live in “groundhog day” the outcome of each day managing Type 1 in my son, always delivers a different outcome.

It’s unfair, it’s inconsistent, but it’s our reality.  It’s our hell, it’s our purgatory, until there is a cure.

The Impact of Type 1 Diabetes

Carter and Daddy beach June 2015It had been two days since I’d showered, standing in the bathroom in the same clothes I was in two days earlier when we took my son to the Emergency Room when he was then diagnosed with Type 1 Diabetes, I looked at my tired face trying to convince myself everything was OK.

It’s manageable, I told myself, nothing will change, I told myself….I was wrong, everything changed.  Everything continues to change.  Relationships,  outings, our daily routine, car rides, meals, baths, fun days, days filled with lethargy, too much activity, not enough activity, NOTHING is ever the same.

Having a child with Type 1 Diabetes is a lot like being the only married couple in your group of friends who has kids.  There is no common ground anymore,  ground where you can relate with what your other friends are going through.  Human nature propels you, when in this situation, to find new friends who have kids and you somewhat leave your old, single friends behind as you grow.

The same is true with a Type 1 Diabetes diagnosis, you are living a different life, in a different world, where relating with your daily reality as a caregiver to a Type 1 Diabetic child is difficult to understand.  People think you’re overreacting, or a helicopter parent as you monitor your child’s every move, every morsel they consume, in order to calculate the insulin dose they need to cover what they have ingested.  Too much insulin, they die, too little they die, it’s all too much to explain to someone who doesn’t know what it is like to live without a working pancreas.

Extended family, old friends, new friends,  there is so much to explain, all of the time,  so much to be judged on by the unknowing  eye.  In an effort to remain protected,  you disconnect.   Everything is too exhausting, and it’s too much to explain to those who have never gone through this crisis.

It’s refreshing when you surround yourself with those who have been through the dark tunnel you have.  Those who know what it feels like to always have the hair standing up on the back of your neck, those who reassure you that you’re not being overprotective, or ridiculous, or irrational, those who know what it is like to walk in to check your child’s blood sugar and breathe a sigh of relief when you pick up their hand and it’s warm.

The reality is that having a child with Type 1 Diabetes, death is always shadowing you.  Miraculously the disease is manageable, yet the effort poured into managing your child’s health is often overlooked.  Type 1 Diabetes, for all intents and purposes is a silent disease.  One that isn’t visible, and  one that shrouds the care that is necessary in mystery, but for those who live it.

As I sat there in that hospital bathroom, looking at my tired face, watching the lines being etched, and the grey hairs forming, desperately trying to convince myself this was all doable, manageable, I was unaware that in those moments I was shedding who I used to be.  That week in the hospital we were given the armor we needed to navigate through this life with a diabetic child, but we weren’t trained on how to navigate the existing relationships who had no way of understanding what we needed.  We didn’t even understand what we needed to survive.

Finding your new path while working feverishly to maintain some semblance of normalcy, leaves hurt feelings in the wake of your diagnosis.  It takes some time to be OK with those who judge or wallow in the hurt of being left behind.  After all, there is a bigger purpose here, a bigger calling.  Let those who don’t understand find their path, your time is filled, navigating the path toward those who do understand and who stand at the end of the tunnel with open arms to embrace you.

 

Tired of Type 1 Diabetes

www.wrha.mb.ca
www.wrha.mb.ca

I’m tired.  Tired of the blood checking, tired of the dosing, tired of the mathematical calculations, but most of all, I’m tired of watching my son battle this disease every minute of every day.

I’m tired of the constant changes, tired of the not knowing, tired of the what ifs, tired of grieving.  I would love a break, it’s something I fantasize about, dream about, something I know is not a reality.

I think back to those first 17-months of my son’s life, it was a different time back then.  It was a time where we took every minute of every day for granted.  We were carefree, before I even had a concept of what the word carefree really meant.  We lived “normal” lives, with the “normal” worries.  What we were going to wear that day, what we would eat for dinner, where I would take the kids to get them out of the house.

Now there is so much effort put into Carter’s care.  It’s exhausting.  We went to look at insulin pumps today, and I wasn’t prepared for the emotion it would bring to the surface.  It wasn’t long ago that we were thrust into this life, with no choice, now here I was looking at technology strewn across the table, and presented with the choice of which small device I wanted to pick to assist me in keeping my son alive.

I am grateful for the insulin pump, which will allow greater freedom for Carter to be a child, though connected to a device, he won’t have to slow down to get a shot.  This in turn will allow him to not get poked multiple times throughout the day, it will be one bigger poke every 3 days and then but for the cell phone shaped pump he will harness to his clothes, Type 1 Diabetes will be somewhat less invasive.

For all intents and purposes, today should have been a joyous occasion, well as joyous as picking out hardware for a disease you hate could be.  But as we sat and listened to what training would be required, how the pump differs from multiple daily injections, the risk of Carter being able to unlock the pump and dose himself enough insulin to kill him, the weight of this change hit me.

All in all, I know this is the right choice, the right change, it will carry with it a learning curve, as any change that sustains your child’s life should.  I know I will have better management of Carter’s numbers, he will be in range more, he will be free enjoy being a kid, etc. etc.  Yet there are aspects that are a scary new.

As I sat tonight meditating on the choices ahead of me while out to dinner, I sat at the table with Ashleigh and Natasha while Greg took Carter to the restroom with him.  As we sat at the table, across the way from the bathroom, I heard Carter’s screams and yells.  I looked up and met Ashleigh’s sad eyes as she said to me: “Carter just got his shot.”  It was affirmation that I’m making a better choice for my son.

I hate Type 1 Diabetes, and ultimately, I’m just tired.