Category Archives: Blood Sugar Management

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.

Advocating for your Type 1 Diabetic Child

IMG_1250The day my son was diagnosed with Type 1 Diabetes, I became his biggest supporter and his advocate. I was determined to make this seem “normal”, familiar, less invasive than it inevitably was.  Yet advocating for your Type 1 Diabetic child is easier said than done.

Carter was diagnosed when he was 17-months-old, which was bittersweet. On one hand, he was so young that essentially this way of life would be all he knew, yet the terror that invaded me was numbing. He was so small, so fragile, and I didn’t know how to get through this catastrophic event, especially since I knew nothing about Type 1 Diabetes prior to his diagnosis.

I have found, that is the norm, most know not much about the autoimmune disease that affects more and more people each day. Type 1 Diabetes has been on the rise and the reasons as to why, remain a mystery. My personal journey, compelled me to educate when I could, mostly in an effort for my son to grow up in a world that knows more than before about what he carries so bravely each and every day.

Everyday is a new opportunity to educate those around us, those who know us, and especially those who are strangers. I have checked Carter’s blood in aisles in the grocery store, in line at Disneyland, in restaurants, basically anywhere and everywhere it is necessary. I also dose him anywhere and everywhere.

We recently were on vacation, and while waiting for our food, my children had made friends with a boy who was running around the grassy hills, he too was waiting for his meal. The boy was around 5-years-old, sandwiched nicely between Ashleigh’s six-and-a-half-years, and Carter’s four. The kids ran around and played for a good 10 minutes before both tables food arrived.

The boy visited our table often throughout our meal, and happened to be standing right next to Carter when I pulled out the shot of insulin and injected him. The little boy wretched back in panic as I dosed Carter and screamed, “What are you doing!?” I calmly explained that my son was a Type 1 Diabetic, that his body doesn’t make insulin anymore and he needs to inject it to eat and to stay alive. Though still affected, the boy seemed to understand.

Every action is education, my husband pointed out how I scared that little boy and my response was that I wouldn’t hide and shame our son in dealing with his condition. At the end of the day, those around us need to adjust. It can be done, it has to be done. I will never adhere to society and how uncomfortable those around may be, when my son’s life is on the line. THIS is our normal, this is what my son does to live. I am proud of his daily sacrifices to live and each poke, whether it is MDI (Multiple Daily Injections) or his Inset site changes for his pump, is a deceleration of his survival.

I had a brief conversation with the boy’s mother, and she was eager to quickly learn what Type 1 Diabetes meant and we discussed the signs. Small victories, as I advocate for my son. Spreading awareness is the most important tool we have to assist those in understanding this disease. Allowing those to see what our hero’s endure, is the first step in tolerance, a bigger step toward compassion, and an overall guide in breaking the perception that surrounds Type 1 Diabetes.

Be Good to Yourself

Be Good To YourselfIt is so hard, to remember to be good to yourself. It’s hard when you’re a parent, when you’re a spouse, and even harder when you are the parent of a Type 1 Diabetic.

Every move you make, every dose of insulin you give, every blood check, feels like the weight of the world is on you. We want perfection, with a continually imperfect scenario. We want our children to live normal lives, when their very lives are dependent on a regime that is exhausting and all-consuming, at best.

We are harder on ourselves, because as the adult, we should know better, do better, be better. But at the end of the day, the reality is, we are human beings, who through our mistakes, our fumbles, our grief, our heartache, our suffering, and our shortcomings, learn and get better.

Carter sunbathingI love this picture of Carter, it shows him loving life, enjoying the sunlight beating into his skin as he lounges in the water. But for the pump site attached to his tummy, one would never know he was a Type 1 Diabetic. Living with Type 1 Diabetes, proves to my son that he is anything but ordinary, he is extraordinary.

Me and Carter fight for every breath he takes, and through that battle, we have proven more to ourselves. We have proven how much fight we have in us, how brave we are, how tough we are, how we rise to the occasion, how no matter what is thrown at us, we find the solution. Despite everything, we grow.

There is a comfort in our bond, in seeing the trust my son has in me to help him survive, and how much I am able to prove of my love for him through each and every scenario. My son has encountered situations that most adults have never had to deal with. It has given him a confidence and maturity that many strive for but never obtain.

So though I make mistakes, I will be good to myself, because I know I am doing my best. I fight everyday for my son’s health, for his life and I am proud of what my family has grown into, through all of this.

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.

Getting the Insulin Pump

animas pingIf someone would have told me that starting the insulin pump for Carter would change our lives, I would have agreed, but thought so for negative reasons.

Learning a whole new system of managing his diabetes, along with a convoluted new vocabulary, then the removal of the long acting insulin that kept him stable through the night, was enough to have me running the other direction.

I had debated the pump switch for well over a year, always finding an excuse to avoid the transition.  Carter’s  A1c seemed on track, and I was literally living day to day, hour by hour some days.

I made the decision in July of 2015, about a year and a half in to Carter’s diagnosis.  It took a while to get everything together and ordered, in order to set up his pump experience.

Carter officially started insulin pump therapy on January 5, 2016, and it has changed our lives, but for the better.  Although I am up virtually all night as we adjust to “pump life”, I am so thrilled with how much better Carter’s glucose numbers have been.

We recently went to Carter’s endo appointment and learned that his A1c was down from 8.0 in November 2015, to 7.8 in February 2016.  I truly believe that month on the pump prior to the A1c check made a huge difference.  It’s not a massive change to his A1c, but it was enough of a change to solidify that we made the right decision.

Carter does have tighter control on his numbers, and I have noticed that my happy child has returned.  Site changes have become easier and take only 2 minutes, every 3 days.  I would watch Carter tense up before every meal, anticipating the shot of his insulin in order to eat.  I love being able to dose him remotely and not have it hurt him.

We’ve adjusted relatively well to having a pump, and Carter loves the freedom it gives him, to graze and not be poked all the time.  It reminds me, that even though this disease is awful at times, and requires immense vigilance, we are so lucky to live in the time we do.  Having the luxury of these machines, that are able to help us live our lives in the closest manner to normal as possible, enables not just longevity, but a better quality of life overall.

Having better control of Carter’s numbers means the likelihood of complications as he gets older gets diminished.  This is better for me, as his mom, but most important, it is better for Carter.  Ultimately, this is why I chose to start the pump for Carter, though it was a major life change and adjustment, Carter, being able to live life to the fullest, not being help back by Type 1 Diabetes was worth every sleepless night.

Insulin Pump Comparison, comparing insulin pump functions, and pros vs cons.