Tag Archives: Diabetic

How Life Changes after Diagnosis

struggleAfter the immediate devastation of a Type 1 Diabetes diagnosis for your child, the ebb and flow of the severity of how life changes after diagnosis is difficult to describe.

On one hand, the diagnosis brings a determination you didn’t know you had.  A determination to enjoy the fullness life has to offer, a thirst for the faith you may have haphazardly thrown on the back burner, a newfound purpose, and all of these are found at the bottom of the hole you are forced to attempt to crawl out of.

As we approach our three-year mark of Carter’s Type 1 Diagnosis this November, I look back and see that I have been through the many stages of grief many, many times.  These days, it’s not really clear what brings the grief stages again.  Maybe it’s the after summer blues, maybe it’s watching your son explain what his insulin pump is to those who stare at the beach or the pool, maybe it’s the built up exhaustion, who knows, but I do know that some season’s suck more than others.

Watching your child grow up, carrying this burden is bittersweet.  I remember standing in the hospital during diagnosis week, and wishing for the day when Carter was able to understand, when he would then be able to  take an active role in his care.  That day has arrived, and it’s more heartbreaking than I anticipated.

Watching your child realize they are different from their peers is hard.  Birthday parties, getting together with their friends, going to the beach, going to the pool, having to constantly interrupt his fun to do a blood check, or correct puts a damper on his fun.

I don’t think the change is a one time event, I believe after a diagnosis of that magnitude, we are ever-changing, always evolving and taking on what comes next.  We are always growing, individually and as a family as it pertains to Carter’s care and management, most often within each moment.  No one day is ever the same, and the worries that each day bring are always different, and changing.

The hardest days for me, are the ones where I can sense Carter is tired of it all.  On those days, my heart breaks just a fraction more.  I would give anything to take this burden from my son.  It affects our whole family, as my daughters are left with a shell of a mother most days.  Lately, exhaustion takes over and I walk through the day an ill tempered zombie.  Always tired, always worrying, always only half present in what is going on as I watch Carter like a hawk.

Will it get better?  Until there is a cure, I don’t think so.  We have decent days, and have fallen into a routine that works for us, but it isn’t void of immense effort and complications.  The frustration and disappointment are too much to bear some days, but we preserver and move on.

My son and daughters, exemplify the forbearance of those who know where this path leads.  We’ve traversed this road more than once, and we know that we come out of these trials stronger.  All in all, I see how their brothers health worries them, especially Ashleigh.

We fall down.  We pick ourselves back up.  We cry, we laugh, we are like any family, we just cling a little closer, because we are faced with the threat of possible loss every minute of everyday.

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.

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.

Type 1 Diabetes, Two Years Later

11.20.15It’s two years later, and what have I learned? I’ve learned never to have expectations from Type 1 Diabetes, whatever I expect Type 1 to do, it will do the opposite.

I’ve learned that no matter the efforts, no matter what the statistics have been with Carter’s numbers for the past week, the day I think all will be well, it won’t.
I learned that in an instant, everything changes.
I’ve learned a new depth of sorrow. I’ve learned how to rapidly pull myself out of that hole, so I can manage Type 1 for my son.
I have learned who my real friends and family are.

I have learned to walk alongside something I hate with every fiber of my being, and work with it, not against it.
I learned that Type 1 Diabetes is a family disease and it affects my daughter, Carter’s older sister, just as much as me.
I have learned how to push past the distraction, past the pain, past the disappointment and love like I have never loved before.

I have learned how to value life, how precious every moment truly is.
I have learned patience, perseverance, and passion in advocacy.
I have learned about how I am in charge not only of my happiness, but the happiness of my children, especially my son after each poke he endures.
I have learned, that no matter how tired, how defeated I feel each morning, MY mood sets the tone for the rest of the day.
I have learned to really celebrate the victories, as they are few.
I have learned the true definition of surrender. My biggest adversary is something I cannot control.
I have learned the depth of a mothers love, over and over, and over again.
I have learned what it means to never give up. Never give in, and never back down.
I have learned how to live under constant pressure.
Most of all, I have learned a convoluted, antiquated process filled with algorithms that are necessary to keep my son alive. Insulin is not a cure, it is my son’s life support. I hate the process, but I love the outcome. I remember that on November 20, 2013 I was faced with losing my son, and I will do everything in my power to make sure that never happens again.
I learned about my strength, I learned that no matter how wounded or scared my heart is, I always have the capacity for great love for my children.
I have learned that through tragedy, come great triumphs. I hate Type 1 Diabetes, but I love what it has brought out in my family in these past two years.

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.

 

Type 1 Diabetes and Anger

diabetesthoughts.blogspot.com
diabetesthoughts.blogspot.com

“Don’t hurt me mommy!” This is the new phrase that comes out of my son’s mouth lately when I check his blood or give him a shot of insulin.

Type 1 Diabetes and anger walk side by side, and as Carter gets older he is manifesting a hatred for the life he has to lead.  I understand, to a degree, his anger.  I work hard to not be angry daily dealing with this disease.

It’s harder lately, as Carter pushes back when it comes to his care and the management of this horribly frustrating disease.  As his mother my heart breaks into pieces hearing him plead with me not to hurt him.  Then I am stuck with the difficult task of trying to explain to my not even 3-year-old son that in order to live I must poke him.

This year has been really hard so far, we have battled illness continually in some form since January, and feeling crummy already, then having to get pricked and poked in order to make sure DKA doesn’t add fuel to the fire was rough for Carter.

There have been many days this year that I have wanted to throw in the towel, but then remember I can’t.  Type 1 Diabetes never clocks out, there is never a down time.  The only options you have is to find ways to push through the exhaustion and the disappointment that greets you daily.

My prayer is that Carter will understand soon how because I love him so much I monitor his care so closely.  I know he will grasp this concept eventually, yet now there is an added dread to the blood checks and shots that exist throughout our day.

I watch my son wince when I grab his hand, just to hold it.  Every time I touch him, he anticipates a poke.  I take every opportunity to just hold him and cuddle with him, in an effort to reinforce our bond and connection minus the diabetic care.

I know this phase will end at some point, yet being in the midst of it is trying…to put it nicely.  I don’t know if my anger toward Type 1 Diabetes will ever completely subside, and now watching my son’s anger grow is a hard thing to witness.  I remember that his journey is much different from mine, and I must allow him these feelings in order to move past them.

“The forces that tend for evil are great and terrible, but the forces of truth and love and courage and honesty and generosity and sympathy are also stronger than ever before.”

Theodore Roosevelt

Through the eyes of a Type 1 Diabetic

Persona_Non_Grata_With_DiabetesI was contacted by the author of a book called Persona Non Grata with Diabetes and asked if I would like to interview him.  I found this to be a great opportunity to find out what living with Type 1 Diabetes was like, through the eyes of a Type 1 Diabetic himself.

As the author, Paul Cathcart put in the forward within his book, “I have written ‘Persona non grata with diabetes,’ a lowbrow walk through of real life with diabetes, hoping that from within these shared pages we are able to draw parallels and exchange in lifetime experience, exemplified throughout in life defining moments.  None of which stray to far, if at all, from a life with diabetes but all of which touch on this condition in one way or another; offering comfort in the knowledge that what we are going through both physically and emotionally is shared by us all.”

That last sentence spoke to me, as this is the reason why I wrote this blog.  I remember when my son was diagnosed and I looked online for support, I remember the relief I felt when I found mothers who were experiencing the same feelings I was, those who wrote about the devastation and frustration they go through daily.   Though it didn’t change my life, or my day, it helped me realize I wasn’t alone.  To feel as though what you experience is shared by other people, allows you to feel accepted, even if the acceptance is into a rough world where others would rather avoid.

My interview with Paul is below, and his book can be found on Amazon, and be purchased on your Kindle.  Thank you again Paul for being so candid and allowing others into the struggles you have faced, in an effort to close the gap on feeling alone while managing this disease.

Question and Answer with Paul Cathcart, author of Persona Non Grata with Diabetes:

Diabetic Journal: When were you diagnosed with Type 1 Diabetes?

Paul Cathcart: I was diagnosed at the tender age of 16. I say tender because the years leading to diagnosis, when my pancreas was blinking like a traffic light, were some of the most difficult.

I know its standard understanding, that before we become type 1, that our body may take a while to finally succumb, but no one really thinks about the social surrounding.

I was in a class full of kids, back when they used to give us cartons of milk at lunch time, and at the point where they stopped was the some point when I was having my first dizzy spells and my mouth was attached to the tap.

But on a social / educational level that was lost, I was invisible because I was at least well fed, and the other kids were often collapsing with hunger or bringing knifes into school.

Searing cramps were indistinguishable at home from teenage growing pains and locking myself in the bathroom every twenty minutes, at the age of 16, well you can guess what my family thought I was doing in there.

DJ:  Can you remember a time when you didn’t have Type 1 Diabetes?

PC:  Yeah, I remember boundless energy and I got that feeling back when I sorted my diet out (went low carb).

DJ: How do you think diabetes affects your life, both good and bad?

PC: I have been through some harsh times with my diabetes; uncontrolled blood sugar has no doubt impacted on my emotional range and personality on every level of family life, personal and social.

But on the up side, diabetes has maybe saved my life. I’m a Glasgow boy at the end of the day. My father was an alcoholic, my grandfather, my lowing step-grandfather; the all drank themselves to death.

I grew up on a housing estate and by my late teenage years, I could see the kids I refused to try drugs with beg for change in town with heroin pot marks on their faces.

And even if I did have the brain to avoid that without the prevention of type 1 diabetes, I’d probably still be stupid enough to be killing myself with cigarettes and junk food.

So yeah, I play to my strengths and diabetes forces me to eat well and live well.

DJ: Think back to the worst low or high you experience. What did you do to correct it?

PC: The highs were persistent in my youth. I’d forget to take my insulin with me on nights out and vomit my way home, unable to digest the following day.

I drank a bottle of Jack Daniels diluted with Pepsi Max once (see, thinking ahead) and I had my stomach pumped, with a Doctor screaming at me because rightly so, that amount of alcohol could have killed anyone, especially a diabetic.

But really, I could have killed myself more with the missed injection I didn’t totally understand the impact of, as the vomiting turned out to be ketoacidosis and I was pretty close to collapsing and freezing to death on the road.

The worst low never actually happened till between Christmas and New Year last year – clever me, on a clean diet with loads of working out inflating my metabolism through the roof, gave in and had a Chinese takeaway.

The problem was, to deal with this treat I had a bunch of insulin and I’d forgotten about the bunch I’d had earlier in the evening when enjoying a day off health. Terror, Ambulance called, couldn’t keep my sugar above 1.4, vomiting everything up for 40 minutes, pure fear till the ambulance arrived.

So to correct that, I shall try not to be an idiot again – but I am only human.

DJ: Being an adult, does diabetes affect your life in the workplace?

PC: How about screaming an expletive in an auditorium when my blood sugar was through the roof. My dad was also diagnosed with cancer the same week and my head was in a mess.

Other than that, going to the bathroom every two minutes made me feel silly. And yeah, later jobs in life, not being able to complete the three-month probatio