Category: Inspiration

A Positive Outlook Leads To a Positive Outcome

A Positive Outlook Leads To a Positive Outcome

Anita Brown

http://anitanicolebrown.com/


My name is Anita Nicole Brown and I am an 18 year Type 1 DiaBadAss! On November 12th, 2017 I will be celebrating 19 years with this disease and I will be celebrating!

I want to change the perspective of what it means to be a Type 1 Diabetic!

So how do I plan on doing that? By celebrating everything I have learned since being diagnosed with T1D and by bringing attention to this disease so that others can see the strength we actually have!

So my story is simple:

I was diagnosed with type 1 diabetes on November 12th, 1998 (my father’s birthday and an A1C of 28)! Shortly after, I was also diagnosed with diabetic nerve damage in my legs and feet that cost me the ability to walk for about a year!

Now, this was in no way caused by me or how I was taking care of myself. It was later determined that my diabetes should have been discovered in 8th grade. However, it was not diagnosed until my senior year of high school! And because it went so long without treatment, the nerve damage set in.

As you can guess, it was a difficult time! I mean it was my senior year of high school! A time I was to be excited about prom, homecoming, graduation and college! Instead I spent most of my senior year either at home or in the hospital! And I was so afraid that because of this disease, I would not graduate!

But, I do believe I am a bit too stubborn for that to have been the end of my story! See, when my doctors told me it was a possibility that the nerve damage would never go away and I may see permanent damage….. I was not in agreement!

So I kept fighting.

Kept working at getting my levels in order and learning as much as I could about this new disease. And one morning I woke and my nerve damage had gone away! I do not think I can express the feeling of being able to walk, run, dance without help or assistance or pain!

And to graduate 2nd in my class after all that! But that was not the end of this battle with T1D! There was more to come that (at 18) I could not have been prepared for! You see, I also found myself dealing with many failed pregnancies and even a thyroid problem and even more!

It got to the point that I felt that life was not worth living if this was going to be my life! And I did try to end it all. I did throw in the towel! I remember when I came to this decision and I told God (or whatever power above you believe in) that I could not continue. That it was too hard.

But, I also told Him that if I woke the next morning….. I would know I had a purpose. A reason for being. As you can see I did wake the next morning. And I woke with perfect glucose levels! As I saw this I looked up to God and said: “Message received….. Just tell me what You have in store for me!”

From that moment, I knew I was stronger than I had given myself credit for.I knew I was given this disease because I could handle it. I can learn from it and I can grow! And that has been my mission!

I know how hard it is to have this disease. To constantly have to count carbs, make insulin adjustments, keep up with doctor’s appointments and pay attention to what my body is telling me! It is a JOB! But I now confront it with a positivity I did not have in the beginning!

Instead of being angry or upset, I look to find the positive!

And the biggest positive is the fact that I woke up this morning when so many did not! This tells me I have more to do! That my reason for being has not been fulfilled!

So I decided to go even further! I mean why not be a T1D Actress, Model, Action Fighter? I mean who says we can’t do these things and still be upfront about our disease? Still keep people informed! Still spread awareness? When I was 17 and trying to find someone….. ANYONE I could look to, I had NO ONE!

I am the only type 1 in my family so when I was learning and dealing with this….. I felt so alone! Now, I know I am not alone and I love the strength this T1D community has! I want to show the good and the bad with being a type 1 diabetic. And I hope that by showing both sides, the good is what can be seen and looked up to more!

We are so much stronger than we know and give ourselves credit for! We were given this task of balancing our lives around this disease and making it look….. easy even when it is not! But I know we were selected because we have that power….. we ARE that power!

We may never be “normal” and that is a beautiful thing! No one who has ever accomplished anything was considered “normal”! So let’s let be loud….. Let’s be vocal and show this world how DiaBadAss we truly are! We have the power to tell our story…… So let’s tell it!



 

silver lining of chronic illness

The Silver Lining of Chronic Illness – Something Good That Can Be Found In a Bad Situation

Silver Lining Of Chronic Illness – Something Good That Can Be Found In a Bad Situation

By: Kylie Whitten


3 years ago I was a happy, healthy, carefree 20 year old. Fast forward three years, and I’m a happy, (somewhat) healthy, (somewhat) carefree 23 year old, who just happens to have type one diabetes. I don’t think it ever crosses anyone’s mind that one day you will get sick and never get better. It happens though.

At first I was going to write about all the bad parts of type one diabetes (because let’s face it there is a lot). I was going to write about what it took from me and how hard it has been on me.

But I’m not.

I refuse to let this chronic illness take anything else from me, including my happiness. So instead I’m going to focus on the silver linings of type one diabetes.

Becoming chronically ill changes you.

Your life turns around, and you suddenly don’t know left from right. Life becomes messy (as if it wasn’t already messy enough), and hard to navigate. But life also becomes more clearer.

You take advantage of the good days, because sometimes they are few and far between, and you learn to not sweat the bad. If I didn’t appreciate things enough before diabetes, I promise you I do now.

Diabetes has made me a stronger person. I know what I’m capable of now, & I don’t let anything stop me. I know what I want out of life, & nothing will get in my way of that. Not even diabetes.

Not everything about diabetes is unfortunate. I have bad days but I’m constantly reminded that the good outweighs the bad. I’ve truly found myself these last three years. I’ve loved a lot harder, and learned that surrounding yourself with people that get and stick around when life gets messy, is good for your soul.

I understand now that something I can’t control will not control my happiness. There is always a silver lining, you just have to find it. Even if it takes you awhile.



 

This Is My Life Support, This Is Type 1 Diabetes

This Is My Life Support, This Is Type 1 Diabetes

By: Katharine Orona

Instagram: @this_is_type_1_diabetes | Blog: thisistype1diabetes


10 years ago I was only a few weeks away from having my life turned upside down and changed forever. I was only weeks away from being diagnosed with an incurable disease, one I didn’t bring upon myself, and one I knew nothing about.

I was about to be diagnosed with Type 1 (LADA) Diabetes.

I had been the picture of health. Perfect blood work results at every checkup, thin, and young. I was 26 years old, about to get married, and recently promoted at work. It was then that I thought I had everything under control and everything seemed to be perfect.

I had all the classic symptoms but didn’t know what they meant: extreme thirst, frequent urination, and rapid unexplained weight loss (at 5 feet tall, I went from 106 lbs to 90 lbs in less than 3 months). My doctor knew right away it was diabetes when I went in with my symptoms. I went to the ER, was immediately admitted, and spent 5 days at the hospital.

After that it took me 5 years to come to terms with my disease.

5 years to go through anger, denial, and grief over losing a life I had known for 26 years. 5 years to decide I was ready to start using a different form of treatment, an insulin pump.

I was so resistant to this technology. I saw it as life support, I saw it as a restriction, I saw it as something I would have to conceal and be ashamed about. When I was finally ready and took the plunge, I loved it from day one. To my surprise, it was freeing, not restricting.

life support

It is life support, but I am thankful for it.

However, I still felt the need to conceal it. I dreaded being asked questions about it or having people wonder why I was wearing a pager (90s folks you know what that is). I felt embarrassed that I needed something to live that other people did not. It took a long time to own it.

A few years later when I was pregnant with my son and my doctor suggested a continuous glucose monitor I went through the same feelings all over again. Another medical device? More things that will make it harder for me to pick an outfit that can conceal that too? But, I knew I had to do it so I did.

My son was worth every awkward stare and every question I faced.

These are tools that I use to make my life a tiny bit more normal. They keep me alive. When my son was born 5 weeks before his due date, and I later made the connection, I realized that he was born on the 6th anniversary of my diabetes diagnosis, at the same hospital I spent those first 5 days after diagnosis.

That fateful day in 2007 that I thought was the worst day of my life, turned out to be the best day of my life 6 years later.

Today I can finally say I not only wear my medical devices with pride, I rock them.

And no matter what method of treatment you choose, know that it’s keeping you alive and you are stronger because of it. Feel comfortable with whatever makes you different. Because it makes you YOU.

As Dr Seuss once said: “Today you are You, that is truer than true. There is no one alive who is Youer than You.”


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dear diabetes

Dear Diabetes –

Dear Diabetes –

Photo Credit: David Marcu


Dear Diabetes,

The monster, the nightmare, the thing I never wanted to meet.

Here we are.

Here I am—standing stronger than ever.

Alive, thriving, living beside you.

Day after day.

I’ll admit, I didn’t know that I had it in me.

I didn’t know if I could make it this far.

But you pulled strength out from within me that I didn’t know existed.

You made me who I am today.

Through all the darkness has come light.

I hate you.

I hate something that I can’t put a face on.

I hate that nobody knows how bad this disease really is.

I hate that I can’t fight you off, you won’t go away.

Why me?

I used to ask myself this very question.

What did I do to deserve this?

I’ve been nearly close to death and somehow I’m still here.

You haven’t left me alone, not once.

But even after enduring all the battle scars—I just keep getting right back up, brushing myself off, and keep going.

There’s never been another choice.

The time I’ve spent with you feels like a test.

It’s a fight that’s never ending.

One minute I think I’ve figured you out, and the next I’m completely lost.

I don’t feel like I’m winning but I can’t tell if I’m losing either.

You’ve challenged me to take control and face my worst fears.

You’ve pushed me to the point of breaking, but I never surrender.

I always persevere with whatever strength I have left in me.

I used to be afraid of your capabilities, the unknown, and of all the things I can’t control.

But I’m not afraid.

Dear Diabetes

You don’t have control over me.

This is my life and I’m going to live it.

Even if that means that I have to dance in the rain.

Sincerely,

Me



 

Diabetes, You Have Not Won

Diabetes, You Have Not Won –

Diabetes, You Have Not Won

Dear Diabetes,

You came into my life almost 2 years ago without much warning. In case you’ve forgotten, I was only 19 years old when you came in and tried to mess things up. I was in the middle of my second year of college and I was a very good student, I was eating well, I was exercising, and I seemed to be the picture of health.

Slowly, my energy began to fade, I wasn’t feeling myself, and I was literally wasting away to nothing. I soon would learn that I had YOU inside of me and there was nothing I could do to get rid of you.

You have stole my freedom and every bit of youth and innocence I had left. You have taken away hundreds of hours of sleep. You have scarred my small body. You have ruined my once perfect fingerprints. You have made mealtimes a hassle.

You have made people distance themselves from me. You have given me a label that most people do not fully understand. You have made me shed more tears in the past 2 years than I had in my entire life. You challenged my family financially and emotionally.

BUT, you have not won.

Little do you know, you’ve helped shape me into who I am today. You made me brave. You made me health conscious. You gave me empathy. You made me mature. You connected me with some of my best friends.

You gave me new opportunities. You made me an overcomer. You strengthened my faith in the Lord. You gave me a cause to fight for. You have shaped me into a strong young woman who doesn’t let anything in life get her down.

After all, if I can fight you every day and still stand tall, what can’t I do? So, to you, I say thank you. Sorry you couldn’t totally ruin my life like you might have intended, I’m still standing tall and I won’t back down.

-Ashlyn


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Perfection Does Not Exist In a Life With Diabetes

Perfection Does Not Exist With Diabetes –

Perfection Does Not Exist 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.



 

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”.



 

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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Finding My Purpose By Educating and Helping Those Affected By Type 1 Diabetes

Finding My Purpose By Educating and Helping Those Affected By Type 1 Diabetes

By: Ali Dugger

I have taken over 20,500 insulin injections over my life so far. That’s a lot of syringes. I’ve pricked my fingers about 30,000 times. It’s what we as Type I Diabetics must do to check our blood sugar. Now I only need to prick my fingers twice a day. I wear something called a continuous glucose monitor. My CGM is usually worn on my arm. I’ve pretty much decided it officially makes me half cylon.

The day I was diagnosed was July 10 of 2003, ten days after my 18th birthday.

During that summer, after my high school graduation, my days were filled with lifeguarding, zipping around town in my T-top, white, 1998 Camaro, wakeboarding on Lake Travis wiping out every other turn, and a steady diet of pizza.

I had not been feeling well on that particular day. My mother said, as she always did when one of us was feeling ill, “Test your blood sugar.”

She had been a nurse for eight years already and had been caring for my TID younger brother for about ten. With eyes rolling, I dragged my feet downstairs to do the obligatory finger stick to humor her. Earlier I had devoured some pepperoni pizza, a slice or two of chocolate cake (Carinos’ chocolate cake which is the BEST in the world), and had washed it all down with half a bag of sour patch kids.

Usually I would fake it and call out, “It’s FIIINE, mom, 98!” but this time I sensed I should follow her advice. The meter counted down the five seconds and read, 480. I guffawed to myself thinking I must have had sugar on my finger from my candy craze earlier. So, I tested again. It read 485. I stumbled into the living room and collapsed on the floor letting out a wail. My mom flew down the stairs. The look in her eyes was enough to register she already knew the answer to why I had sounded such an alarm.

Within moments my brothers and father were surrounding me. We all wept. It wasn’t just a few minutes after that the doorbell rang. It was my first date with a boy I had met on the fourth of July. I opened the door and dramatically sobbed, “I have diabeteeeeees.” Before he knew it he was loaded up into our family car, all six of us packed in tightly, and carted off to the hospital.

Type 1 Diabetes is also referred to as Juvenile Diabetes. Only 5% of diabetics are TID. The disease is caused not by diet and exercise rather the immune system turning on the body and killing off the insulin producing cells in the pancreas. Most people are diagnosed under the age of twelve. My brother had even joked that since I was no longer a child, being 18, I was in the clear of ever being diagnosed. To this day I am a firm believer in knocking on wood.

When we discovered my brother had TID I was terrified. He had slowly been wasting away (TID prevents your body from storing fat if untreated) for over a year. My parents had been seeking answers everywhere from the city’s best pediatricians to homeopathic doctors. It wasn’t until my father took him to the ER refusing to leave that they did something. His son was obviously at death’s door.

My brother was only six. Being three years older than him, my mom trusted me to stay home alone with the neighbor boy (I hadn’t gone boy crazy yet so she had no idea what was in store for her down the road). She raced off after them to the hospital. It wasn’t too much later in the day she called home and told me the news, “Your brother has diabetes.” I hung up, looked at the boy, leaned my head on his shoulder with tears in my eyes and said, “My brother has rabies!”

As the years passed diabetes became a part of all of our daily lives.

From time to time I would overhear my mother’s fears about his future and all of the complications TID can cause. It was terrifying and I believed the universe had spared me because lord knows I loved flip flops and couldn’t imagine having to wear tennis shoes all of the time (feet are a big issue with TID due to how it prevents wounds from healing). One of my first thoughts when I was diagnosed was how screwed I would be because I ran around outside like a wild banshee all day.

Even though my life had changed dramatically, I still moved into my university dorm that fall. I also still lived life as if nothing had changed. Halle Barry is a TID and I heard an interview where she said it took five years for her to get it down pact. So I thought, “I’ve got five years until I’ve gotta figure this thing out.” Five years passed, then ten, and even though I had a mother who begged, pleaded, and prodded me to take better care of myself, I always waved her off saying, “Mom, I’m perfectly fine!” I would test my sugar every now and then, take my shots hours after I ate, and sometimes would altogether skip my insulin. I felt and looked like a healthy person! I also ate like a superstar and was a yoga instructor (and we all know yoga cures everything in India).

My complications began to arise a few years ago.

It happened so slowly it snuck up on me. At the time, I was a middle school teacher. I attributed my exhaustion and fatigue to stress and managing a classroom of 34 students. Eventually I went to the doctor and I was told I had a leaky heart. They recommended I reduce the stress in my life and really take my TID seriously. I resigned from teaching the next day.

But, that still did not move me to get my act together completely. There was a sense of procrastination when it came to accepting my TID just like most of us do when it comes to going to the gym. Every day I would tell myself, “Oh tomorrow you’ll test your blood sugar at all of the right times and take the right amount of insulin.” It wasn’t until 2016 when the gravity of my situation hit me.

My health was suffering to the point where I couldn’t hold down a job.

My relationship of several years had deteriorated. I had a sense of dread and despair clouding my mind every day. I was confused. I really had no complaints in life! Why was I suffering on the inside so much?

Well, let me tell you. Uncontrolled TID messes with everything, even your hormones. My body was imbalanced from head to toe and it was screaming in every way possible for me to do something about it. Many mornings were spent with my head in the toilet after sleeping on the bathroom floor all night. I experienced uncontrollable bowels while out dancing with my friends (oh do I have some spectacular stories about that!). I kept my apartment at a cool 55 degrees because I felt I was about to combust half of the time. I drank gallons of water daily and looked as if you could blow me a kiss and I would fly away. Some days my vision would be so impaired I would have to pull over on the side of the road and practice squinting until I could see well enough to drive again.

My boyfriend and I eventually broke up and I moved out to LA back in with my parents. I planned on staying with them for a few months while I looked for a new job and place to live. Little did I know 2016 would be the toughest, roughest year of my life.

Every person experiences diabetes differently so I won’t go into the details of what I endured. However, I will share that I spent about a quarter of that year in the hospital, and the other three quarters holed up in my bedroom buried under my blankets. All of my complications came pouring out of me like the Hoover dam opening its floodgates. Gastroparesis, Retinopathy, Neuropathy, and then some really off the wall complications such as Dupuytren’s Contracture started filling up my medical records. I became incredibly depressed.

But soon I buckled down, turned it around, and started to change my daily habits.

Towards the end of the year I had nearly done a 180 degree turn around. To celebrate, I decided it was time to start dating again! So of course, not knowing how to really go about doing that, I signed up for Tinder. I went on a few dates here and there but there was one date in particular that would change my life forever.

I can’t even tell you his name. But I can tell you what kind of motorcycle he rode, a Triumph. It was 9:00 at night and I was feeling restless. We had briefly chatted on text and he mentioned he was going for a ride around LA to check out the skyline. Giggling, I replied, “Why don’t you come pick me up, Night Rider?” and he did. We rode around LA for about an hour. I clasped tightly to him as we raced down the 405. I realized quickly over In-and-Out this was not a crazy Irishman I could ever see myself taking seriously.

He dropped me off back home and said cheesily, “You’ve inspired me to be a better man. May I kiss you?” I promptly said, “No.” (demurely of course) referring back to my Tinder caption OLD FASHIONED. He rode off into the night and I made my way up the old rickety brick steps to our house.

It wasn’t until I was showered and in bed that I noticed my sheets were wet. “What in the world?” I thought annoyedly assuming one of the dogs had dragged some slobber coated toy under my sheets. But to my horror, it was my feet! They were leaking fluid like water faucets.

The podiatrist would tell me two weeks later (yes I waited that long to see the foot doctor. Neosporin and gauze does NOT do the trick) that I had third degree burns down to the bone, even exposing some tendons in my toes. I had burned my feet on the Triumph’s tailpipes and had not felt the heat due to my already existing neuropathy.

I didn’t walk for nearly four months. I’m a gamer so I thought, “Perfect! Now I can hit level 60!” I saw the situation as a little break from adulting for a bit. So, when the doctor gave me the okay to walk again I was feeling even more ready and refreshed to get out there, get employed, and finally move into my own place.

My first day out on the town I headed to the mall to buy my interview outfit. I had just landed a dream job opportunity at a gaming studio and couldn’t wait to impress the recruiter. It was only after about two hours that my feet began to ache. Assuming they just needed a break, I went ahead and called it a day. The next morning my feet were black and blue. Still, I wasn’t worried. However my mother, true to form, made an appointment with my podiatrist the next day.

I knew everyone very well at the doctor’s office by that point and sat in the patient’s chair giving the tech advice about how to smooth things over with his wife, “Foot rubs fix everything and you’re the master at cleaning mine!” I said as he scrubbed my feet. Within a few minutes the doctor flew through the door in a rush and was in his stool poking and prodding at my feet. There was a quietness about him that usually didn’t stiffen the air the way it did that afternoon. He smacked his lips together and said,

“Well, we need to get X-rays.”

I was planning on going on a blind date immediately after my appointment so I hobbled off as quickly as I could. Before we left I mentioned I had plans. The doctor said he preferred if I didn’t go unless the guy looked like Brad Pitt (which he didn’t so, that was a no go). It was only a few days later the doctor sat my mother and me down and mentioned something that sounded like, “Shark Hot Foot” which I found really funny. It’s actually not really that funny.

Charcot Foot is a very rare condition that affects people with diabetes.

It is an autoimmune disease which causes the bones in the feet to break when one walks on them. Doctors don’t know much about the disease except for the fact that the circulation pumping through the bones causes them to splinter and crack from within during acute episodes. Acute episodes occur when the immune system decides to go Rambo and attack the feet. Medical professionals still do not understand what triggers a “flare”. It’s during these episodes that the bones break and crumble. Healing can take months and a lot of people find themselves wheelchair bound. Most only have Charcot in one foot. I have it in both.

Now, here I am.

I’m currently in a wheelchair but hope to someday walk again with the aid of orthopedic shoes and a walker.

It did take me a few weeks to process this news. I probably (most likely definitely) still have a lot of processing to do. However, the moment I realized how life changing this condition would be I closed my eyes and thanked my lucky stars. I thanked the world for preparing me in 2016 in a way nobody or nothing could have. If it had not been for all of my trials and tribulations I don’t believe I would have had the strength to accept such life altering news. I now know that all of the pain I have endured was to prepare me for Part II of my life, which is already filled with wonder and awe of the community of people I’m discovering who live with disabilities every day.

In closing, if you were to ask me for one piece of advice after everything I have been through so far, I would say, “No matter how terrible it may seem right now, know you are being prepared to do something great.” I have never recognized my purpose as fully as I do now. And that purpose is to help, even if it is just one person, but hopefully many people, to understand TID and its complications and to see that life can still be an amazing thing to live.

If you are a TID, or you’re the loved one of a TID,

you’re courageous, you can do this, and I will always be here if you need someone to cry with, vent to, or just ask a simple question. As my favorite poet of all time would say, “Let the great world spin for ever down the ringing grooves of change.” – Alfred Lord Tennyson


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Diabetes Won't Stop Me From Living

Diabetes Won’t Stop Me From Living

Diabetes Won’t Stop Me From Living

By: Nickie Eckes

I have type one diabetes. I was diagnosed back in February of 1990, at 5 years old, because my body decided it wanted to wage war upon itself and destroy the beta cells in my pancreas.

I remember going to the hospital, and I remember being terrified and having no idea why all these doctors were “torturing” me. I just wanted to go home with my mom, dad, and brother. They said my blood sugar was over 1000 and I had to stay.

The weeks that followed in the hospital were not fun. I had gotten used to getting up and playing and running on stop. Now I was being told I had to live on a strict schedule, only able to eat a certain amount of food at certain times, along with a shot of insulin to ensure that my blood glucose levels were maintained.

They also informed my parents of a place called Camp Sioux, a camp for kids living with diabetes to go and have a “regular” camp experience, but also learn about diabetes. I loved going and it made me feel not alone because everyone was diabetic, and I made some lifelong friends. The type that understands me when I just need “a minute” or “a snack” and understand all those diabetic jokes that make my stomach hurt from laughter.

I’ve dealt with the highs and the lows of this disease now for over 27 years. I’ve handled people telling me if only I would take better care of myself, I wouldn’t be this sick. I did nothing wrong to get this illness, it’s an autoimmune condition. My body can’t make the hormone insulin, which is what is needed for the simple sugars you get from food to enter your cells for energy.

I have to calculate everything I do in a day, from what I eat, to how much I’m going to be moving, along with stress levels and illness (such as common cold or the flu) just to ensure that my blood glucose level stays within a good range and I don’t pass out due to a low blood sugar, or go so high that I get diabetic ketoacidosis (meaning your body is producing a thing called ketones and those can make you very sick). And what works one day may not work the same the next day.

I had the years of rebellion and not caring what my numbers were. I did the whole I’m gonna die young anyway so who cares. And then I decided, I wasn’t going to let this disease keep me down. My friend calls diabetes livebetes because he says “it won’t stop me from living!”

 

Research has made many amazing developments since then, so much now that newly diagnosed people are being told that not much in their lives has to change; they just need to know where their numbers are and how much insulin flow take for those different numbers. We can even program those numbers into a pump and have it do the dosing for us (although not completely without thought from us).

We now have faster acting insulins that instead of having to wait 30 minutes after taking them to even start eating, we now only have to wait 5 minutes. We have what is called a Continuous Glucose Monitoring system (or CGM for short) that can tell us our levels every five minutes, which helps a lot given it can predict a high or a low before they occur, and we can correct the issue before it becomes an issue.

In fact this year, with any luck, I will get to obtain the new diabetes pump, with the first ever closed loop system on it! Both my doctor (who is also diabetic) and I are rather excited for this and are not so patiently waiting. There’s still always planning and calculating everything. It helps, but it’s not a cure. All of these advancements sound amazing and are fantastic, but it’s still a heavy load to carry.

Diabetes Won’t Stop Me From Living

I will keep fighting. I am strong. I hope to one day be able to say “I used to have diabetes.” And because of all this, I remind myself while I may have diabetes, it does NOT have me.


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