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

How to Deal, Type 1 Diabetes Disappointments

BraveryIt’s easy to talk about the luck of manageability of Type 1 Diabetes when things are going well. It’s harder to see the end of the tunnel when you have had a day filled with disappointment because of Type 1 Diabetes.

Today we had Carter’s check up with his Endocrinologist. His A1c was up to 8.6 from 7.8 three months ago. I have to admit I felt defeated and like I had failed. Carter’s doctor wasn’t concerned and even expected that he would be higher due to his growth and the fact that Carter has been battling illness for the past month.

Though we only slightly adjusted Carter’s insulin to carbohydrate ratios, I found throughout the rest of the appointment I was struggling with the feelings of disappointment.

I know there are peaks ad valleys when it comes to Type 1 Diabetes management, and knowing what illness and growth, as well as a bevy of other factors do to someone with Type 1 Diabetes, getting news you weren’t wanting can make you feel deflated. Pulling internal self together and reminding myself that Carter’s level of care he receives from me and his Dad hasn’t changed, assisted me with digesting the news.

There are times while traveling this journey that is being the parent of a diabetic where defeat becomes a regular feeling.  Victories can get clouded, shrouded in the perceived failures, and the misconceptions that managing this disease carries.

Recognizing that this too shall pass and that without these set backs we wouldn’t know what needed to change can be difficult when you are in the midst of the disappointment.

Allowing the reassurance, and remembering that a A1c result that wasn’t what wad expected doesn’t mean that you are a failure, it means that things yet again have changed when it comes to Type 1 Diabetes.  The one thing that is consistent with Type 1 Diabetes care and management, is inconsistency.

Realizing that because of those inconsistencies, numbers are often harder to manage and maintain, as well as test results may reflect an arena that is contradictory to what you have worked so hard to get away from, is part of what makes this disease so frustrating in one moment, when in the next moment beating the algorithm of Diabetes can feel like such an accomplishment.

The best advice I can give, is to not view a negative report as a personal failure.  Use it as a learning tool, and allow it to be a bigger view into your child’s make up.  No two people are a like, therefore management of Type 1 Diabetes varies from patient to patient.

Stumble and fall, but always get up and fight back.

Diabetic Ketoacidosis (DKA)

warning signsDiabetic ketoacidosis (DKA) is a life-threatening condition that develops when cells in the body are unable to get the sugar (glucose) they need for energy because there is not enough insulin.

When the sugar cannot get into the cells, it stays in the blood. The kidneys filter some of the sugar from the blood and remove it from the body through urine.

Diabetes is a lifelong companion.  Because the cells cannot receive sugar for energy, the body begins to break down fat and muscle for energy. When this happens, ketones, or fatty acids, are produced and enter the bloodstream, causing the chemical imbalance (metabolic acidosis) called diabetic ketoacidosis.

My mind has been reeling this week, reading the story about Kycie Terry, and seeing the parallel between her initial misdiagnosis and Carter’s.

No child should have to suffer through DKA, especially in this day and age where we have the technology available to us to properly diagnose people, especially children.

I am heartbroken, and in some small way, through the updates, reliving what we went through with Carter to some degree.

I think when you are discharged from the hospital, you are so grateful to be headed home, and when you arrive there you find your path, working relentlessly as survival becomes your way of life, we forget how serious this disease can be, and how quickly everything can turn.

Carter has been battling a small cold for a couple of days now, and last night at 2:00 am he threw up and his blood sugar was 460.  I cried as I waiting for the ketone strip to dry and let me know the current status of Carter’s condition.

In conjunction with the news of Kycie, I realized how fragile everything really is.  DKA is what we fight to avoid, every second of everyday, that and Hypoglycemia.  Yet, the majority of the time the word survival is at the forefront of my mind.

I came to the realization that I don’t want my son growing up thinking he is “surviving”, I want him to live.  Finding the balance between the two can be tricky, especially when you have two monsters on each shoulder.  DKA, or Hypoglycemia.

Some days it feels impossible to find the right balance with Carter’s blood sugars.  Some days end with me feeling helplessly defeated.  But others end with me feeling accomplished, not only at keeping Carter’s blood sugars within range, but that while doing so he also lived a great day.

Knowing the importance of Diabetic Ketoacidosis is irreplaceable, especially if you have a child, or know someone who is exhibiting symptoms.  Knowing what to look for with early diabetes diagnosis can mean the difference between a simple early diagnosis, or a horrible diagnosis accompanied by DKA.

For more information on DKA and Type 1 Diabetes, please visit the JDRF website.

How To Get Your Life Back After Diagnosis

HardestOne minute everything is routine, the next your world is turned upside down.  You’re in shock, devastated, scrambling to save the life of your child as you watch them get sicker and sicker.

You cling to hope, faith,……you go over the past 2 weeks over and over again in your head while doctor after doctor streams in to save your child.  What did I miss?  I’m a horrible parent, it’s my job to protect my child and I failed.

Before you know it, you’re admitted, as a family, to the hospital for a week-long stay to rectify the mistake you made, the disaster you didn’t catch as the mother.  At least this is what I thought and felt as I watched the doctors and nurses come in and work feverishly to stabilize my son’s levels.

I stepped up, I rallied, but privately I couldn’t forgive myself.  I learned about auto immune diseases and how they work and was assured by all the medical staff that I didn’t do anything wrong.  Yet I couldn’t accept that.

It took me a long time to believe what the experts told me, and it took me an even longer time to forgive myself.

I believe one of the ways I can sit here today, 14 months into my son’s Type 1 Diabetes diagnosis, is I allow myself to be sad.  There are days when everything runs smoothly and I can end the day saying to myself, Type 1 Diabetes isn’t that bad, thankfully it is manageable.  Yet the majority of the time, Type 1 Diabetes isn’t manageable without a LOT if effort and grief.

Being the parent of a Type 1 Diabetic child carries with it, not just the vigilance that Type 1 Diabetes requires, but also the emotional aspect of watching your child carry a weight that you wouldn’t wish upon your worst enemy.

Type 1 Diabetes for the parent of a child afflicted, is emotionally and physically taxing and draining.  It’s also accompanied by anger at why and wondering how this happened to your child.  This is especially true when, as was in my case, you have a completely healthy first-born, and it’s your second born who became ill.

When I had raised both of my children that same, and my son has to live a life filled with night checks, mathematical equations at every meal, and poke after poke in order to survive.

I believe one of the ways I was able to get my life back, in a way, was to allow the grief and the frustration.  I didn’t deny that life most days sucks, I stand in that for a moment, then I pull it together and we forge through the day and make it a success.  Not allowing myself to feel, or allow the normal emotions that anyone in this position would have, would be a disservice to not only myself, but my family as a whole.

We are in a society where everyone expects that we be strong and remain fighters all of the time.  Phrases like, at least it’s not cancer, and, “You’re so lucky there are so many machines and technology to monitor for you” hit me to the core.  Yes, thankfully it is not cancer, however, just because it isn’t doesn’t mean that life for us is any easier.  For us there is no remission, we sit and live this way until there is a cure.  Then, as far as the technology, it certainly can be a help, if it works properly and if you can afford it to begin with.  Yet even with all the technology, there is always double checking.  One doesn’t rely on a continual glucose monitoring system to be its eyes and brain constantly, blindly expecting it to save their child and keep them alive.

So allowing myself to be disappointed at the days outcome of numbers, gives me the ability to remain human in an environment that requires a non human approach.  By that I mean, we are hit daily, multiple times a day with triage situations.  We aren’t really allowed to be tired or miscalculate a carb count for a meal, for those two things carry with them devastating consequences.  We have to be quick thinking, and always on our game.

So all in all, what saved my sanity was that fact that I allow myself to grieve often, and I allow my children to see me work through these feelings, but always pick up and charge to find the solution.  Showing that we are human and chasing perfection isn’t what this disease is all about.

It’s about making mistakes, but having the determination to find the proper solutions in order to survive, figuratively and literally.

Diabetes, and Dealing with Change

Carter - January 2015
Carter – January 2015

Change is rough, and often we are forced into it.  Going through it is always a struggle, and if given the choice most of us would avoid it.  So when it is thrust upon you, how do you deal with it.  Well, poorly at first, I remember the days and nights filled with tears, frustration and otherwise.  I remember combing through what went wrong,  how did my son get an autoimmune disease?

Those feelings get highlighted anytime I share Carter’s diagnosis with anyone new.  Oddly, this is especially true when the audience is of the medical profession.  It made me realize how encapsulated the endocrine system truly is.

The most interesting thing about having a child with Type 1 Diabetes, is that change doesn’t end with diagnosis.  Change comes frequently, and most times with an angry vengeance.  Routine is not a word that is used when speaking of how you manage Type 1 Diabetes.  I find that the majority of the changes we experience lately happen when Carter is sleeping.

When everything is winding down, and night draws in, Diabetes releases the gamut of all its tricks.  This consists of slamming my son into a 46 blood sugar, or throwing him into a 350 blood sugar.  Through exhaustion and sadness we have to be ready at the drop of a hat to change our current process, our sleep schedules (though after diagnosis sleep is almost non-existent).

We have to welcome change, and the majority of the time, the change isn’t good.  It’s more trauma, more sleep deprivation, more frustration, for both the parent and especially diabetic.

Realizing that the change you experience today, may not be the same change you struggle with tomorrow can be daunting, or a relief.  Being able to adapt is one of the most important parts of managing diabetes.  Finding ways to get through each day, some days is your biggest accomplishment.  Realizing that change is imminent and in order to save what ever sanity you have left, you have to learn to roll with it.

 

Transitioning with Diabetes

TransitionTransitioning with Diabetes is difficult.  One of the hardest, yet most rewarding tasks I completed this year, was ordering Carter’s Medical ID bracelet. It took me a while to be able to even stomach ordering it for him.  Though I had accepted Type 1 Diabetes, for the most part, somehow ordering the worn declaration was to difficult for me.

I finally set aside my feelings and found a retailer online and placed the order.  Once I hit send on my order, I cried.  I find it captivating how many actions are tied to emotions surrounding my son’s diagnosis.  Maybe it’s because I am still so raw.  Maybe it’s because my hand was forced and I don’t take well to losing control.

One thing I have realized this year is the importance of knowledge.  Knowing, truly is half the battle.  God forbid anything were to happen to me, and Carter needed assistance, who would tell the rescuers he is a Type 1 Diabetic?  It was another moment when I realized this isn’t about me or my feelings, it’s about my son.

When the bracelet arrived, I unwrapped the package, placed it on Carter’s wrist, then unwrapped my peace of mind from sadness.  I know Carter will adjust to wearing it, and I will have complete peace of mind, especially when he starts school and is not always within arms reach of me.  Letting go is so difficult, especially when you have a child whose physical wellbeing are dependent on you, 24/7.

Transition, though difficult, creates better boundaries, more confident people, more positive interaction, and a comfort within oneself that is only achieved by trudging through the pain and disappointment that has been handed to us.

One Year Post Diagnosis

Someone I loveToday’s the day, November 20, 2014, exactly one year after Carter was diagnosed with Type 1 Diabetes.  For a full year, I never really knew how I would feel today.

This time last year, I wished I was here, a year into things, I naively thought things would somehow be easier.  In some ways they are, but in others everything is still the same……difficult.

My biggest fear, this time last year, was the shots.  I am so grateful to have adjusted to that.  Dosing out insulin doesn’t terrify me anymore, it certainly has become second nature.  But the frustration associated with Type 1 Diabetes is still there and I believe will be forever.  Learning how to expect the hassle and not get flustered when it arrives is the key.

As a mother, being prepared for anything was a characteristic I had to learn when my first-born arrived.  Being prepared for everything when you have a child with Type 1 Diabetes is a whole different thing entirely.  Even with everything done the same way each and every hour of every day, we always live in the “what if.”

However, as  I reflect today, that biggest theme is gratitude.  I watch my son today, running and jumping, laughing, and full of life and realize that last year, as I sit sobbing in a PICU room, that this is what I longed for.  I longed for the day when Type 1 Diabetes management became part of our day, and we have arrived there.

Self doubt has left me alone for a while now, and I am more confident in my ability to care for my son, I watch my son taking more and more ownership of his care and where my heart hurts sometimes because of that,  I am comforted by his acceptance and knowledge of how important proper management is.

I sit here, exactly one year after my world caved in, and instead of living in the moment I am able to look to the future.  What I thought would break us, has pushed us closer together, highlighted what gratitude really means, and proven that anything you strive for can be accomplished.

So it is with a happy heart that I say happy one year anniversary to my son, it’s happy because we have made it through the roughest year of our lives and have come out on top.  My son, who is the bravest, most tenacious, happiest boy I know.  I am so proud to call him my son, and am so lucky to have my daughter who helps me care for her brother, and comforts me when she sees on certain days it becoming too cumbersome.

Type 1 Diabetes is an invasion, but with hope and love, and patience, the learning curve is obtained, and life carries on.

All things frustrating and encouraging about Type 1 Diabetes