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MercyMe – Even If (Testimony): Story About Type 1 Diabetes

MercyMe – Even If (Testimony): Story About Type 1 Diabetes

As time passes with diabetes, it seems like I should have it all together and that I have answers. But there’s times where it doesn’t feel okay. But you know what – that’s okay too.

After watching this live video about a singer-songwriter named Bart Millard who talks about his son who battles with type 1 diabetes; it really struck a chord with me. It had me thinking about where I get my strength from – which is from my heavenly father. Anyone affected by a chronic illness gets it. It never goes away. No matter the denial, bargaining, or anger – it’s always there.

When the bad days hit – and they do – that’s when I come back to the realization that this disease is serious. It’s not that I could ever forget even if I wanted to. As much as I want “normal” – diabetes doesn’t take a break. The good days are where I experience a glimmer of peace; but this is as normal as I’m going to get.

On those days where nothing seems to go right and I feel that diabetes has won…


MERCYME- EVEN IF “SONG & TESTIMONY” LIVE:


“I still won’t surrender… I won’t bow because he’s worth it. Because deep down even though there’s times I forget who I am – luckily he never forgets me. Regardless of what I go through – he’s bigger.” – (Bart Millard)

After all, where I am today is where I was meant to be all along.

I’m now blessed to be part of an amazing community of people who just get it. We understand the courage it takes to get through each day. We understand what it’s like to now see life through a different lens and a whole new perspective. Together we are not alone in this.

It’s the bad days where my life shifts a little. The days where I feel like I’m being held to the flames – fear of getting burned. Those are the days that I feel the most vulnerable, the most human, wanting answers for all of my unanswered prayers.

Even though I may never receive the answers I’m looking for – I continue to hold on to faith – for that it moves mountains. My testimony being proof that these mountains can be moved.


MUSIC VIDEO TO MERCYME – EVEN IF:


 

Perfection Does Not Exist In a Life With Diabetes

Perfection Does Not Exist In a Life With Diabetes –

Perfection Does Not Exist In a Life With Diabetes –

By: Christina Blackmon

15 years ago my life changed forever when I was told I had Type 1 diabetes.

I didn’t even know what diabetes was. I think I thought it meant you can’t eat sugar anymore. Little did I know that when I turned 20 years old my pancreas unexplainably stopped working properly and that would mean that my entire life would now depend on a hormone called insulin being injected into my body for the rest of my life.

Without those insulin injections I would die.

Little did I know that for the rest of my life I would be completely dependent upon this hormone. I also had no idea that my days thereafter would consist of being measured 8-10 times per day by a number. A number I get from pricking myself. Knowing that important number so that I can mathematically calculate how much insulin to inject to maintain good blood glucose range based on a formula that changes hourly without notice.

I also had no idea how unpredictable and unreliable my body would be and that there would be factors outside my control that dictated what my blood glucose levels would be despite eating and calculating “correctly”.

That my blood glucose would go up and down like a roller coaster ride and effect every fiber of my being. That sometimes I would want to crawl out of my own skin to escape the pain I was enduring. That I would go from being completely calm and rational to completely angry and irritable. That my pain would be invisible to others because it’s all happening internally without notice to anyone else.

There is no exact science or prescription to manage diabetes and everyday is a guessing game. Knowledge became my power and I studied and researched everything I could about this unforgivable disease. I found that it’s high maintenance and takes no breaks or vacations.

But I also found some tools that would help me. Tools like an insulin pump and continuous glucose monitor that could help me manage every second, every minute, every hour of every day for the rest of my life.

There is no cure for type 1 diabetes. I will always be dependent upon insulin.

Even with my tools – just like every piece of technology they fail me. But despite this disease I have 2 beautiful healthy kids and one on the way and no diabetic complications. Some days I feel so strong like I can do anything then others I lack the motivation to keep going.

But I never give up. I keep fighting and will keep fighting till there’s no fight left in me.

I don’t ever see any other option. I’m very thankful for the tools I have to manage this disease with everything I have and love when I can encourage or inspire other diabetics to do the same.

People ask me all the time is your diabetes controlled and I just want to laugh…what does that even mean??!! I just always say it’s not perfect and will never be. I don’t try to maintain perfection because diabetes means having bad days. I try to have more good than bad days and not focus on perfection.

Perfection does not exist in a life with diabetes.



 

Diagnosed With Type 1 Diabetes as an adult

Diagnosed with Type 1 Diabetes as an Adult: The Day That Changed My Life Forever

Diagnosed with Type 1 Diabetes as an Adult: The Day That Changed My Life Forever
By: Valerie Abner

I’m approaching my 2nd Type 1 Diabetes birthday and just turned 41. Yes, I’m one that was fortunate enough to be diagnosed at 39. I’m the mom who was saved by my mom and my son’s broken leg.

Here is my story on how I was diagnosed with type 1 diabetes as an adult:

July 6, 2015 . . . it’s the day that my life changed forever.  It’s the day that I now like to call my birthday.

It all began with what I thought was a stomach virus on July 4th.  I was on the couch all day.  The next day was a Sunday and just as anyone recovering from a virus, I was weak, but feeling better.  We went to a nearby park for the afternoon.  My son was playing on the playground and fell from the fireman’s pole, fracturing his leg in two places.

After leaving the hospital we had to get pain medication and when we arrived back at home, I was sick all over again.  I vaguely remember falling asleep on the bathroom floor.  Monday morning came and again I was weak, but feeling some better.  My husband had to go for a meeting and my mother came to stay with us, mostly to care for my son.

The symptoms were just the same.  I thought maybe I was dehydrated and began drinking Gatorade, and lots of it.  It was just after lunch when I lost control of myself.  I was dizzy, confused, lethargic and completely out of my mind.  I could not catch my breath.  I somehow got back in the bed when my mom found me and called for an ambulance.

I knew nothing.  Not even enough to know that I was in serious danger.

At the age of 39… Who would have ever thought that I would be diagnosed with Type 1 Diabetes as an adult?  I spent the next week in ICU being treated for diabetic ketoacidosis or DKA.  If it wasn’t for my son’s broken leg, my mother probably would not have been at our house. Today, I’m grateful for both.

I was on numerous shots for the first 4 months.  My body went into a chemical imbalance and then I fell into depression.  I could not eat or sleep.  I was nauseous.  My legs ached and I could not function on a daily routine.  I was losing weight.  I would pray each day just to get me to bedtime and at bedtime pray just to wake up the next morning.

It was horrible.  The worst feeling in the world.  It was on my September 2015 visit to the endocrinologist that she realized I would not make it without the insulin pump.  I’m currently using an insulin pump and a continuous glucose monitor.

Oh, how I am so thankful for so many things.  I am thankful for broken bones. Without that I may not be here today.  It was through those life events that called out for help on the day that I would need it the most.  I am thankful for the Lord above that knew that I would be needed for so much more.  I am thankful for a family that loves me and has fought this battle every step of the way beside me.  I am thankful for every day that I’m alive.



Why Are They Judging Me?

Why Are They Judging Me?

Why Are They Judging Me?

By: Marrium abid Sandhu

Some people have a background or a story that is so central to their identity that they believe their life would be incomplete without it. Here’s my story..

Why are they judging me?

Is this the reality or do I suffer from schizophrenia? I’m not from another galaxy, I mean, I just have diabetes.

Society took it upon itself to delineate me as a diabetic. On the mention of my name, the ignorant minds of humans formed an image of a weak, disoriented, bewildered and egotistical teenager.

I was nine years old when I was first diagnosed with type-one diabetes. It shook me to my core. I was not old enough to even comprehend what diabetes meant. But the way people around me reacted; it felt as if I was an unstable nucleus emitting radiations.

My heart told me to be optimistic, persuaded me to look at life from this new perspective, but everything in my life went downhill. On various occasions during the early stages, I was able to pick myself up and do my daily chores the normal way but that did not last that way for long.

Pricking my fingers four to five times a day and taking insulin shots before every meal was never an easy task. Until high school, I used to go around hiding the fact that I was a diabetic. I had an irrational fear of people judging me. I hardly socialized. I kept to my room and to myself, reading miserable and depressing novels, injecting myself with something that was supposed to make me better but felt no less than a cruel punishment.

As I grew older,

things started to improve and diabetes became a part of my daily routine. I realized that having diabetes was a part of me but it in no way defined me. It had rehabilitated me. It had made me resilient, mentally and morally.

As I progressed through high school, I craved to do better in academics, sports, and life in general. Having diabetes gave me strength to face any challenge or problem that came my way.

Friends are of imminent importance, you cannot function without having someone to talk to, someone to associate yourself with. Socializing made me grasp the significance and need for someone to share my feelings with, someone to trust with my problems.

My family and I shifted a lot due to my father’s work. Being on the go, I constantly met new people who made me confident in my own skin. I went to Greece on a school trip for 4 weeks. Exploring a new country, a completely different environment was an experience I will trade for nothing.

Doing everything myself, from shopping to laundry, I gained a fair bit of poise and familiarized myself with adapting to a new place and a completely different way of life. The diabetic, anthrophobic girl had transformed.

My hard working and astute sense of nature led me to be selected as a part of my school’s student council and in addition I represented my school in various national level sports competitions. I volunteered myself to help the underdeveloped schools in my city.

I taught English and Mathematics to a group of class 9 students. I saw a whole new way of life within my culture in that school. And now I’m studying architecture in one of the best universities in turkey.

I am a diabetic.

And I do not have a problem with people judging me because of that. If they judge me, it does not depict who I am, it depicts who they are.

To sum it up in the words of Sonia Sotomayor, the current associate justice of the Supreme Court of the United States,

“Diabetes taught me discipline”.



 

Top 10 Myths About Type 1 Diabetes

Top 10 Myths About Type 1 Diabetes

(Photo Credit: Josie Nicole)

Top 10 Myths About Type 1 Diabetes

Type 1 Diabetes is one of the most misunderstood diseases and it accounts for 5-10% of all diabetes cases. Not many people understand the complexity or severity unless personally affected by it. But as the prevalence is increasing worldwide, it’s important to debunk many of these myths and share the facts about Type 1 Diabetes.

 

MYTH: Type 1 Diabetes is caused by eating too much sugar –

FACT: Type 1 Diabetes occurs when the immune system attacks and destroys the insulin producing cells in the pancreas. There is no known cause but it’s believed that genes and environmental factors play a role.

 

MYTH: People with Type 1 Diabetes can be cured with diet and exercise –

FACT: There is no cure for Type 1 Diabetes (YET). Yes, diet and exercise is beneficial for anyone including those managing diabetes, but it can not treat nor reverse it.

 

MYTH: Sugar is off limits with Type 1 Diabetes –

FACT: People with Type 1 Diabetes are not limited to what they can eat. Insulin is administered to cover the carbs or sugar they eat. Too much sugar is bad for everyone, but moderation is key. Sugar is also needed and life-saving for diabetics with low blood sugar.

 

MYTH: If it’s sugar-free then it’s okay for Type 1 Diabetics to go ahead and consume –

FACT: Actually, many sugar-free foods are loaded with carbohydrates. In many cases where they have more carbohydrates than a product just made with pure sugar.  It’s always important to check nutrition labels because product packaging can be deceiving.

 

MYTH: You won’t get Type 1 Diabetes if you live a healthy and active lifestyle –

FACT: Type 1 Diabetes is not caused by ones’ lifestyle choices. Diet, activity level, and weight have no effect with the onset of Type 1 Diabetes.

 

MYTH: If a Type 1 Diabetics blood sugar is low or high then it’s their fault –

FACT: A low or high blood sugar can happen for many reasons – (insulin, exercise, illness, stress, hormones, etc.) There is no fault, just the nature of the disease at hand.

 

MYTH: Type 1 Diabetes is hereditary –

FACT: Genetics can be complicated and more studies are being done on this. While many who are diagnosed with Type 1 Diabetes may have no family history, research shows genetic factors play an important role in disease susceptibility. The pattern of inheritance is complex, and the development of disease is thought to be determined by an interaction between genetic predisposition and environmental triggers.

 

MYTH: People with Type 1 Diabetes shouldn’t have children –

FACT: Women with Type 1 Diabetes who manage their diabetes well during pregnancy can give birth to healthy babies.

 

MYTH: Type 1 Diabetes is the bad kind –

FACT: All types of diabetes are serious. Type 1 and Type 2 Diabetes being the most common types. But with proper management, people with diabetes can live relatively normal, healthy lives.

 

MYTH: Adults can’t get Type 1 Diabetes –

FACT: Type 1 Diabetes does not discriminate – it affects babies, children, teens, and adults. While type 1 diabetes usually develops in children or adolescents, diagnosis as an adult does happen. Which is why the name Type 1 Diabetes no longer goes by “Juvenile Diabetes”.


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What It's Like to be a Type 1 Mom

What It’s Like To Be a Type 1 Mom

 What It’s Like To Be a Type 1 Mom

Stacey Rose

I am a 49-year-old type 1 woman who has had diabetes for 39 years. When I was diagnosed at age 10, I was told a cure was five years away. Well, clearly that didn’t happen. So then I was told I probably shouldn’t have kids. Well, I’m a type 1 mom now and I have three kids. My oldest son is 14 and I also have soon-to-be 12-year-old twins (boy/girl). I was all kinds of a high-risk case both times:  at 35 with my first son, I was already a “geriatric” mother and then at 37 with twins not to mention the whole type 1 diabetes thing!

My younger self would never have imagined I would have one kid let alone three! My younger self didn’t want to get married, but I did that too and was married for almost 15 years. Of course, I never imagined I’d be divorced either, but here I am. Life changes like that can certainly throw your diabetes management for a loop.

And where I am now is a really good place, actually. I get along very well with my ex-husband whom I share custody of those three kids with. My mother is very involved with my kids and is there more often than not when I am not with my kids. I have a wonderful boyfriend of three years now and he is the most generous, giving man I have ever met. It’s a complicated life with me in Massachusetts and my ex-husband and my kids in Southern California – I fortunately, have the flexibility to travel back and forth monthly and it works for all of us.

I’m also a runner – another thing my younger self would have laughed at. I started running at age 39. I guess I’m a late bloomer in all aspects of my life! I have a goal to run a full marathon before I turn 50 (so I’m trying to train right now as that’s getting closer as we speak, although I am plagued by injuries lately.) I have run a half marathon before though and have the drive to do more, which is another bit of my being a type 1 mom. Part of my reason for wanting to run a full marathon is big a “F you” to diabetes. That won’t keep me from doing something I really want to do.

My daughter, one of the twins, also has type 1 diabetes. She was diagnosed at age 5, which as you can imagine, was devastating news. I know I can’t be the only type 1 parent who blamed themselves for a child also getting diabetes. I logically know that is not the case, but it’s hard not to feel that way initially.

My daughter has brought me out of my shell in terms of wanting to get involved in the type 1 community. There are so many opportunities to advocate and I’m still fumbling my way around trying to figure out where I belong in that crowd. The fact that there are so many opportunities to serve that community is a good problem to have! I often refer to myself as a “wannabe” advocate, as I just don’t know where I fit in yet. I have done walks and raised money and I try to raise awareness and educate people daily.

Below is a picture I have done with my daughter every November for Diabetes Awareness Month. (It’s not a coincidence that we use that particular finger for the finger sticks, by the way. My daughter thinks that’s funny. You may notice a theme here about my feelings toward this unwelcome guest who refuses to leave.)

What It's Like To Be a Type 1 Mom

I’ve always been a bit of a loner and maybe denied myself the benefits of a support group, but I did find a wonderful group of other type 1 mom ‘s right after giving birth to my first child. We have all remained friends and I really don’t know where I’d be without them as a support system. We’re all over the country and a couple international, but have all gotten together as a group and just one on one throughout the years.

We help each other find doctors, we commiserate with each other on bad days and highs and lows we can’t explain and fears when we go to the eye doctor or suspicious symptoms in our kids. No one knows what you’re feeling or going through better than someone else who goes through those same things and a couple of us also have children with type 1 diabetes. It’s heartbreaking for all of us to hear this news. This group of ladies has been a lifeline for me.

The challenges of having type 1 and managing my own health is compounded by my daughter having it too. She’s growing up now – almost 12 – and is branching out into her own independence. It’s really hard for me to let go of those reins. I’m sure my own mom can relate to that. It’s always hard letting go of your kids as they grow, but even more difficult when that child has a chronic disease.

When I was a kid, I often “joke” that it was one shot in the morning and hope for the best. That’s not really a joke though. It’s pretty much the way it was. I didn’t have a glucometer, as they weren’t really around back then. When I finally did get one, you couldn’t take it with you. It had to remain in its spot on the counter because if you moved it an inch you had to recalibrate the darn thing and you needed a degree in chemistry to do that. I’m exaggerating, of course, but it sometimes felt that way.

All the new technology that I have like my insulin pump and CGM are wonderful tools! They can be very overwhelming though and I’m scared as hell that my daughter will forget to change her pump or not bolus or not pay attention to her blood sugars when she goes off to camp or out for the day without her dad, my mom, or me.

At this point, I don’t remember not having diabetes. My daughter has now had type 1 for six years and I’m afraid she’s getting to, if not already there, that stage where you forget what it’s like to not have diabetes and that breaks my heart. My oldest son, who is 14 now and does not have diabetes, did a Christmas wish picture for school when he was in 2nd grade. His first wish was for everyone in his family to not have diabetes – another heartbreaking moment. I don’t thinks my kids ever thought of diabetes as out of the ordinary though, as they have always been around it.

My other two children, both boys and one a twin to my daughter with type 1, are enrolled in the TrialNet studies, or I should say, they get tested once a year for antibodies and have been negative so far. The waiting for results period is a scary time though. I’m sure all moms of diabetics, and maybe even more so type 1 mom ‘s, always worry about that. I do at least.

So, what is it like being a type 1 mom?

Well, it has never stopped me from doing things – having kids being one of those things. I want to show my daughter that she can do anything she has a passion for. Yeah, we need to plan in advance for everything. I wonder if I was always that way or getting diabetes at a young age made me a planner.

My mom will tell you I was always organized, so I guess it works in my favor in managing life with Type 1 diabetes. Management isn’t always easy, but I have done it for so long that I just do it. I count carbs in my head. I always have glucose tabs on me wherever I go, my phone is always charged for my CGM, but you just do what you do. I take care of my kids and live my life. Do I want a cure? Of course I do. Not so much for me anymore, but for my daughter, yes. I would gladly never get cured myself for my daughter to not have type 1 and that’s pretty much all mothers I’m sure, whether a Type 1 mom or not. 


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The emotional side of diabetes

The Emotional Side of Diabetes

The Emotional Side of Diabetes

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

The emotional side of diabetes is what I tap into often. Everyone has their own way of dealing with diabetes, and not one way is wrong.. because every journey is different. I’ve had some people tell me that my viewpoints are often depressing or negative. While I do like to share all aspects of this disease, the emotional side is what releases my mind.

Now in real life, besides the lows and highs that come with this disease, I manage pretty well. Or as best as I can (of course) with the lack of a working pancreas. But I wasn’t always doing so “good”. When I was diagnosed at the age of 12, I thought my life was over. I didn’t want to be labeled or seen as different. I didn’t like the idea of the possible complications or sudden death that could occur from this disease. I just wanted to hide, ignore it, and pray it would go away. I was scared, and I had no one to talk to about my fears or doubts. On the outside I looked fine, but on the inside — I was battling my inner demons.

Along the way, many years of only talking about my diabetes to family and close friends — I eventually started this blog. It was my time to talk about what’s not being discussed. To start conversations and show the reality. The things that many struggle with but are difficult to express or understand. I would say I’m living proof that you can go through hell and back and come out of it even stronger. I know there are many people who are going through what I’ve gone through, and I want to share how bright the future really is.

I would say the emotional side of diabetes is harder than the physical. The needles don’t bother me, the blood sugar checks, the long nights, or the constant monitoring of data. What bothers me now is that I have a family of my own and there is no cure for my illness. Now as I’m trying to teach my children about it, I’m also trying to teach the rest of the world through my blog. It’s open to anyone to share how diabetes has impacted them, because someone, somewhere, is most likely going through that RIGHT now.

I think my biggest accomplishment with diabetes is letting myself become vulnerable. Not caring what everyone thinks, embracing who I am, and who I’ve become — weaknesses and all.  I believe by doing this, I’m able to cope with the emotional side, because I no longer fear, I just live.


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Navigating type 1 diabetes and learning along the way

Navigating Type 1 Diabetes and Learning Along the Way

Navigating Type 1 Diabetes and Learning Along the Way

Monica Westley, PhD

Here is my story about our daughter Allison, and the incredible lessons she has taught us. We have always been a family of explorers and adventurers, readers of books and lovers of nature. We encouraged our kids to learn as much about the world as they could. Still, until four years ago, we like so many others, knew very little about type 1 diabetes.

Allison had been losing weight (but growing taller) thirsty (but it was hot here in SoCal) and then began to have flu symptoms. On the second day of the “flu” (DKA) we brought her to her pediatrician. I asked “Could this be high blood sugar”? The pediatrician said, “Oh its very unlikely but why don’t you go to the ER, we don’t have a way to measure that here!”

At the ER, our daughter was lying down, super sick, yet still we had to ask that she be seen several times. We waited for over 3 hours, along with those who were waiting to be seen for a common cold. Finally, in the back, the young doctor sampled her blood with the glucometer and turned to me. “Your daughter has type 1 diabetes. It’s a life long condition for which there is no cure. You will be taken by ambulance to the Children’s hospital where you will learn how to live with this.” And so began our journey.

Initially, its all a blur. You’re thinking,” Ok I think we can fix this if….”. Then you realize there is no way out of this condition, and you must move forward as a family. You start to learn all you possibly can about it and how to optimize blood sugars. For the first 2 years we checked her every night at 2am, and more if her blood sugar didn’t settle down.

Then came the advent of Nightscout, which was a group of amazing parents who hacked into the existing technology to allow the blood sugars to be visualized by parents. Quickly, Medtronic and Dexcom responded with their own “version” of Nightscout. The ability to see Allison’s blood sugars on our phones by our bedside and to be alarmed if she came out of range was invaluable. Our rattled nerves could settle a bit. Now she could go overnight with friends, and that was a freedom gained!

Then we learned about TYPEONE Grit, a low carb, high protein way of eating (WOE) endorsed by Dr. Richard Bernstein, and followed by many. Google him, he’s amazing. This WOE was not recommended by our pediatric endo or the CDE in the hospital, but it was an amazing and invaluable resource and has helped keep her blood sugars much more stable. Another win!

Finally, after she was experiencing many undiagnosable “Highs” I began to search for an answer. Allison uses the Medtronic pump, and I asked our endo to change her from the plastic cannula in the MIO quickset to the SureT needle. Their feeling was that she didn’t really need it. However, when I pressed they changed it. Almost immediately, she was in better control. Yet another win!

From all these experiences we learned, when your child has Type 1 diabetes, you MUST continually be your child’s advocate, you must be proactive, you must keep searching for new advances and ways of doing things. At times you will be exhausted, sad, maybe on your knees, but don’t lose faith! This disease will unexpectedly teach you many things.

What else did we learn? We learned that Allison has an amazing spirit! At times, diabetes dampened her spirit, but it’s ember has never gone out. Her capacity for resilience, tenacity and resourcefulness has grown stronger with every year.

What has she done since her diagnosis? Allison has been class president, homecoming queen, a runway model for JDRF, raised over $20,000 for JDRF. She has worked in a type 1 diabetes research lab at Harvard, started a Hands on Science program at a local underprivileged school and kept it going every week for 3 years, received the Presidential Service Award, National Honor Society recommended, straight As, Cum Laude Society, Peer Mentor leader, started her company Mermaid Medicine, acted in the school musical, created her column “In Someone Else’s Shoes”.

She was named “19 under 19 to watch” and completed 4 years of high school varsity sports. She currently runs the fastest mile on the track team. Allison has also recently been accepted to USC (Merit Scholar) and to Harvard. Right now she is preparing to go on a 2 week wilderness adventure off the grid in the Sierras where she will be the only person with T1D.

Pretty cool, right?

People say, “She makes it look so easy”. And she does. I do want to tell those on “the outside of diabetes” just don’t forget that behind it 24/7/365 she is walking the tightrope of blood sugars. It requires strength and grit. She is strong and most importantly, she is kind. Because of all she deals with in her own diabetes realm, her compassion muscle is very strong. She even gives those like our current US Budget Director Mick Mulvaney, who think there’s one type of diabetes, and judge those who have it, compassion.

Heres what I would share to the “newbie parents”. Be your child’s advocate. Trust your gut, you are on the front lines of this with your child. Be proactive. Never stop learning about the disease and new technology, clinical trials, and ways of eating (WOE). Find community. I formed a group called “The Sugar Mamas” we meet for lunch and keep each other sane. Keep an eye on the online community of diabetes: GLU, CGM in the Cloud, CDN and especially TYPEONEGRIT are all important networks with helpful people, many who have great ideas and inspiration. Most are going through what you are going through. Strength in numbers!

Finally, keep your dreams for your child’s success alive. Encourage them to reach. Encourage yourself to stay strong. Play the song “You’re an Overcomer” really, really loud ! Don’t forget to have fun. If one day is terrible, try again the next day. Look for a sliver of humor in the crazy diabetes things that happen. And don’t forget to pray for the day when we all wake up to the front page headline ” A Cure for Type 1 diabetes has been found”.


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Diabetes Shame and Blame

Diabetes Shame and Blame

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

“Oh you have diabetes? I heard you can cure it with diet and exercise? Is it the bad kind? Did you eat too much sugar as a kid? Why don’t you take care of yourself? If I had diabetes I would be a great diabetic.”

If not dealing with a life-threatening illness that has no cure was difficult already—you also have to deal with the shame and blame that comes along with this disease.

Society has made diabetes such a shameful word.

No one really understands the ramifications associated with stigma. How it affects young children and adults who manage this disease.

It all stems off of unawareness, influence of the media, and lack of education. But how can we be point fingers when even doctors are misinformed?

Diabetes is now characterized as sugary food items, Unicorn Frappuccinos, and BigMacs. People joke and assume that they could get diabetes by consuming these. Which is a huge misconception because diabetes can happen to anyone, at no fault of their own.

Many do not know that there are two types of diabetes. Type 1 Diabetes– which is an autoimmune disease, and Type 2– a metabolic condition. Both of which are very complex chronic conditions.

The real issue behind this is that young babies, children, and adults are at risk of dying from not catching the signs of diabetes in time.

Not only that, but diabetes is serious. It’s as serious as any other disease. It consumes ones’ life and demands constant attention. No one should feel ashamed of their diabetes but should feel self-empowered to manage it.

The more we talk about the issues and raise awareness, the more conversations we can start. And hopefully more lives can be saved.

The stigma needs to end.

How Did You Know Your Child Had Type 1 Diabetes? Know The Symptoms (It Could Save a Life)

How Did You Know Your Child Had Type 1 Diabetes? Know The Symptoms (It Could Save a Life)

By: Rachelle Stocum / Blog

Parents of children with diabetes will hear this question asked a million times. And each time you tell your story the story gets shorter and shorter. You begin to leave out details. Details that may one day save another child’s life.

I wrote this for a couple of reasons. The first reason was to document the details and help other families who are searching for answers to unexplained symptoms. The second reason was to really get my emotions off my chest, and reflect.

December 30, 2016 is a day I will never forget.

This date will now be forever know to us as Carter’s dia-versary.” This was the day my seven year old son Carter was diagnosed with Type one Diabetes. I still tear up when I say or even write those words… my son was diagnosed with Type 1 Diabetes.

It all kind of happened so fast really. It was Christmas break 2016 and the kids were home for a couple of weeks. Things were normal as usual, stress right before a holiday, scrambling to buy toys for cousins we forgot about (because they were only born 6-12 months ago and we don’t see them much) and visiting with family and friends. My husband and I both work out of the home, and since the kids were on break, we were around the children much more than the usual 24/7 on the weekends.

The week before Christmas my son Carter had so many complaints. He’s not a whiny kid by any means so this was unusual for him. He’s actually the most compliant child I know. When I ask him to do something he does it. So when he first complained of a stomach ache I thought he was coming down with the flu. It seems reasonable that a child would get sick in December.

But everyday preceding that day he had a new complaint on top of the prior one. Next came dizziness, then headache. I asked him to drink more water to try and flush out the bad germs. The symptoms just continued to compound. So being the compliant child he is, he drank more water. Next he complained of being tired in the middle of the day. “Well you’re going to be tired if you’re getting sick.” I said. Next he said his heart was racing at night when I tucked him into bed.

In the morning he said his legs were shaky and wobbly and it was hard to stand up. He had even wet the bed, which was strange because this kid never wets the bed. Later I will learn that this too was a sign of Type 1 diabetes. Children wet the bed because it’s the bodies way of trying to secrete ketones from the body.

 
It was starting to become really weird at this point.

I mean he’s got like 100 things wrong with him in such a short amount of time. I did like any other mother, who is tech savvy and results driven, would do. I went to Google and found WebMD symptom checker. I entered in his symptoms and diabetes came up as a possible diagnoses. I read the symptoms over and over and each time I dismissed the diagnoses because he didn’t have extreme hunger, extreme thirst, weight loss, or vomiting.

 About every other or month or so I make a self diagnoses based on some random symptoms I have (mostly due to just getting older) and I’m convinced it’s cancer, but it never is. So I wasn’t very worried after reading the signs and symptoms of Type one Diabetes since we only had a few of the symptoms. I always have two or three symptoms of some horrible disease.

But during the week of December 26th he kept saying the symptoms were getting worse.

He told me his heart was raising so fast he thought it was going to jump out of his chest. He said he had a headache all day prior and he woke up with the same pounding headache. I remember saying to him that morning, “Boy, that really sucks to fall asleep with a headache and to wake up with one.” By this time I had gone online several times inputting symptoms and it kept coming back to Type 1 Diabetes.

On Thursday, December 29, 2016 Carter started drinking a lot of water, and I was happy because we wanted to flush this bug out of his system. So I filled up a 32oz water bottle with ice and water. He literally came back 5 minutes later asking for more water. I remember looking at this in disbelief and asked I him if he dumped the water out, because I just filled it up. He said no, “I drank it all and I was really thirsty”. So I gave him more water. I went about my work and didn’t even think that thirst was one of the symptoms of Type one diabetes.

That evening my husband and I were watching a movie when Carter came running out of my bedroom shouting, “I’ve lost 4 pounds!” Now you may ask yourself why is a 7 year old weighing himself.

Well, we all weigh ourselves and during this kids routine well child check in October the doctor said that he would prefer Carter not gain any weight because his hope is that he would grow taller and thin out a bit. He’s not a huge obese kid, but he is one of the youngest kids in his second grade class at 4′ 5″ and he’s also one of the tallest. He’s only about one foot shorter than his 11 year old brother. See my husband is 6′ 4″ tall so I was not at all concerned that Carter was going to be fatter then he was tall.

So it just meant that (his sucker for a mom had to tell him no, more than she said yes) we needed to cut back on sweets. Carter has a sweet tooth like his Dad. He loves Hershey’s chocolate bars and slurpees (aka: slushy or icee). I’m a sucker and I have a hard time saying no to Carter because he’s such a great kid! So we knew Carter weighed 80 pounds, he might fluctuate to 79 or 81 pounds but at 9pm he should be on the heavier side of the scale.

I asked him to repeat himself and he said, “I’ve lost 4 pounds.” I weigh 76 pounds now. At that moment I remember lifting my head from the couch, pausing the movie we were watching and saying to my husband, “I think he has diabetes.” My husband asked me why I thought that, and I gave him all the reasons why. I told him that tomorrow I’m going to call my grandma (who is a Type 2 diabetic) and ask if I can borrow her blood glucose monitor.

So the next day I went out to call on my accounts and I got so busy I forgot to call my grandmother because I just got busy. When I got home around 11:30am Carter was still asleep. He fell asleep at around 9:30pm the night before. I remember because my husband took as picture of him. He had passed out on top of my desk watching Netflix or YouTube on the computer.

 
So I tried to wake him up but it was really hard. He was groggy and didn’t want to wake up. Once he was finally woke up I told him that I didn’t want him to eat anything until I was able to get grandma’s monitor and test his blood sugar. He drank some water but understood what I was asking of him. He didn’t complain or cry even though he was hungry.

I called my grandmother and asked her to meet us at McDonald’s for lunch & bring the meter. I think it was around 1:30 or 2:00pm when we finally met up & took his blood sugar. I pricked his finger and he said ouch, then added the strip and ran the test. His blood glucose said 251 fasting.

I knew that was bad because when I was pregnant with him I had gestational diabetes. My blood glucose only ran about 120 from what I can recall, and I knew normal was around 100. I immediately started to panic. I was ready to leave and go immediately to the hospital and my grandmother said, “No wait, it’s probably just an error on the machine. Why don’t you let the boys eat and call your doctor’s office and tell them what’s going on and see if they can see him today?”

Reluctantly I took her advice, because for a moment I didn’t actually want my suspicion of diabetes diagnoses to be true. Later I found out that my grandmother knew that they was nothing wrong with the meter, but she could hear the panic in my voice and see the fear on my face when I read the number out loud. I immediately called the doctor’s office and explained the situation. They said I could get in at 4:15pm that day.

 
I took the appointment because I still had work to complete from the morning, and two hours is enough time for the food to digest, and to get a better reading on the blood sugar. After I hung up at with the doctor’s office I ate my salad and my son ate his chicken nuggets and drank his diet soda. I was so worried thinking what if, what if he has diabetes?

Before lunch was finished the boys asked if they could get an ice cream cone. I said of course you can. After about 4-5 licks of the ice cream cone Carter immediately said he didn’t feel good and said that he was going to throw up.

I rushed him to the restroom at McDonald’s and rubbed his back while he leaned over the toilet. He was dry heaving and he didn’t actually throw up but you could see the pale color in his face and the hopelessness look in his eyes.

He then used the restroom to urinate and I escorted him to the car hoping the fresh air would help. After I arrived home things were just as normal as they ever were. The boys went outside to play and I finished up my work.

Before I knew it, it was 4 o’clock and time for our appointment. The doctor’s office is just five minutes from the home so we dashed over there.  At this point I was almost questioning myself. Carter was literally jumping up-and-down couldn’t stand still and acting like a kid on a sugar high. Was he fine, was I overreacting, am I being a crazy parent? We got in the car and drove to the doctor’s office.

 
Once we checked in at the doctor’s office Carter was immediately very thirsty. I remember going down to the car and grabbing his tumbler from the car and filling it up with water in the doctor’s office. While we waited he drink 8 ounces of water over and over again in the course of minutes. While we were in the exam room Carter went to the bathroom three times.

 

The doctor came in and asked me what had been going on with Carter. I explained the situation to her and why I had suspicions of diabetes. She told me that she had treated children before who had diabetes and she said by looking at him today he looked fine. He didn’t not look like a child who had type one diabetes.

After many questions she said, “Ok, I’m going to have my MA come in and test his blood glucose, and I’m sure we will be sending you home for a nice long holiday weekend.” I thanked her for her time and again was doubtful that there was anything wrong with him.

She literally just told me he doesn’t look like he has diabetes. Oh great! Now they are going to think I’m that crazy parent who brings their kid in for any little thing. Later I would further understand what she meant when she said he doesn’t look like he has diabetes. What she meant was he doesn’t look like a kid who is in Diabetic ketoacidosis or DKA. A new term I will lean and hear more about.

 
It was right before the holiday weekend and the new year around 4:45pm Friday, December 30, 2017. The medical assistant walked into the room and said, “OK, we’re going to get your blood sugar now. Have you had your finger poked before?” She asked Carter. He said, “Yes, this afternoon my mom poked me.” She then poked his finger and held up the meter with the strip inserted and touched his finger.

We waited for the countdown 3,2,1. Silence filled the room, and nothing. Nothing showed up on the meter. I was so confused I’ve never seen a blood glucose meter not give you a number after reading. It only said High Glucose.

I looked at the medical assistant asked her, “Why doesn’t the meter give us a number, is something wrong.” She said, “The only time the meter doesn’t give a number is when it’s over 600, his blood glucose is higher than what the meter can read.”

The medical assistant immediately left the room, closing the door behind her. I knew right then and there that he had diabetes. My heart was racing and I was frantic but I waited there patiently for the doctor to come back into the room. It felt like forever.

She looked at me and put her hands on my shoulders and closed her eyes and said, “I am so sorry, but your son has Type one Diabetes and you need to take him immediately downtown to the Sacred Heart Children’s Hospital.

She uttered some words like I’m sorry I didn’t actually think he had diabetes, he appears fine. Children who are in DKA are usually very ill and non-responsive. I think we caught it early enough, now go.

My older son Tucker was at home with a friend and my husband was working at a wine tasting about 10 minutes from our home. I immediately left the doctor’s office and called my husband and told him that we were headed to the hospital and to meet us there. I almost forgot to tell him that he needed to grab our son who is still at home.

I remember driving to the hospital and getting there almost in tears but in disbelief and shock. I checked in and they said we were expecting you. It was only minutes before we sat down and we’re back in bed he emergency room getting vitals taken. I have to admit I did not know everything about Type one Diabetes.

I literally thought that some people just had diabetes worse than others. I knew some people needed insulin and others took pills to manage their diabetes.

I only had personal experience with gestational diabetes, and a close friend in my 20’s who was originally wrongly diagnosed with type 2 to only later find out she was a Type one Diabetic. I knew what her symptoms were because we were on vacation in Hawaii when she began to not feel well and was extremely thirsty and using the restroom a lot.

 
It’s probably that knowledge that helped me diagnose Carter as early as I did.

Having gestational diabetes for me meant I needed to check my blood sugar every day, keep track of my food intake while tracking my blood glucose and eating healthy and keeping the carb ratio down and taking a pill once a day.

 
Little did I know that there were no pills in Carter’s future. I had no idea what the future held for myself for my son, and for our family. When they tested Carter’s BG at the hospital it was 560 I believe, it had dropped a bit. It felt like forever that we waited for a room at the hospital.

It was no surprise he had Type one Diabetes, but the doctor who delivered the news said something like, “Your son has Type one Diabetes, you’re going to stay the night, probably the weekend and we are getting a room ready for you.

Do you have any questions?” Do I have any questions, are you kidding me, yes, a ton. But I didn’t know what questions to ask. Have you ever heard the saying – You don’t know what you don’t know? So while we waited from about 6:00-11:30pm I Googled T1D trying to learn as much information as possible about the disease.

I remember being irritated because from everything I was reading this was very serious, life threatening even, and my kids and husband were all playing video games on their cell phones and tablets. Maybe it was my husband’s way of dealing with a bad situation, just ignoring it, or maybe he didn’t care. Whatever the answer was I didn’t care.

I was in “mama bear” mode and I wanted to figure out what I needed to do to fix my son. I guess it made me mad because my husband didn’t make any effort to investigate what could be done to help our son.

 
We finally arrived to our room around midnight. Our family didn’t eat dinner because we had been at the hospital since 6pm that night and we just got to our room. My husband and children were starving. So they left to get food and came back to deliver me some sushi and drinks.

They gave Carter some string cheese and crackers and he fell asleep. I remember the nurses were so nice and kind. I asked a ton of questions and stayed awake with the lights on until probably 2am. Needless to say I couldn’t get much sleep at all. It was 7am before I remember falling asleep and my husband and oldest son arrived the next morning around 9:30am.

Who knew that this sleepless night was only the start of many sleepless nights to come.

 
Know the signs of Type 1 Diabetes.

What to look for: Symptoms of type 1 diabetes in children

One of the early signs of diabetes in children is increased urination and thirst. When blood-sugar is high it triggers a reaction in the body that pulls fluid from tissues. This will leave your son or daughter constantly thirsty, resulting in a need for more bathroom breaks throughout the day. Below are some other warning signs that you should be aware of.

 

Fatigue: If your child is constantly tired it may be a sign that his or her body is having trouble turning sugar in the bloodstream into energy.

 

Changes in vision: High blood sugar levels can lead to blurred vision or other eyesight problems.

 

Fruity smelling breath: If your kid’s breath smells fruity, it could be a result of excess sugar in the blood.

 

Extreme hunger and unexplained weight loss: When your son or daughter’s muscles and organs aren’t receiving enough energy, it can trigger extreme hunger. And sudden weight loss—especially if he or she is eating more—should not be ignored.

 

Unusual behavior: If your child seems more moody or restless than normal—and it’s in conjunction with the symptoms above—it could be cause for concern.

 

Disclaimer: The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health.


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