Tag: diabetes management

What It's Really Like To Have a Child With Type 1 Diabetes

What It’s Really Like To Have a Child With Type 1 Diabetes

What It’s Really Like To Have a Child With Type 1 Diabetes

By: Angela Ameno


The last thing a parent wants is for their child to experience any pain. When they do, as this can often be inevitable in life, you help them up, dust them off and move on looking ahead to better days.

As the parent of a child with Type 1 Diabetes –

There is no bandaid, no kissing the pain away, no moving on without this disease in tow. That is hardest part of this.  You can tell them they will be ok, tomorrow will be better but the truth is life is completely changed and there are no days off from this battle.

I will do anything for my child and have done everything I could to ease this burden since his diagnosis three years ago at the age of 9. I count carbs, weigh foods, make sure he always has his meter, snacks, and juice. The days march on without much thought to the routine of it all.

Your child looks normal to the outside world even though every second is consumed by this lurking burden.

Will his sugar be too high for test taking? Will it be too low for gym? Did I count lunch carbs correctly? It really can be a guessing game most of the time.

Then the night comes.

The nights are dark and it’s not always just because the sun has set.  I still check his blood sugar while he’s asleep. Stumbling, trying not to wake him. 2 A.M. or 3 A.M…sometimes every few hours. Sometimes his tiny fingers poke through blankets as if he knows I’m coming and will keep him safe.

Other times I work to gently pry his arm from under his cocoon. Nights when he’s high he doesn’t even flinch as I find an open spot of skin for his insulin needle. There are nights when he’s low and the juice goes down quickly and others when he fights to suck on the straw and begs to go back to sleep.

It’s also in these quiet moments that it can hit me all over again. The uncertainty of it all. The forever of it all as I look at the hardened tiny fingertips spotted black from the thousands of needle pokes.  I’m ok for now because I know I’ve got this, I’m somewhat in control.

But what happens when he’s grown and off on his own? Did I teach him enough about management? Will he wake up to check his own blood sugar? Where will the juice boxes or chocolate milk be? Would he know that although this is hard and constant that it should never stop him from anything?

This is probably the scariest part of it all.  Teaching my child with type 1 diabetes to live with it and be healthy and confident will be my greatest accomplishment and give me peace.

However, my worry will never fade.

I have some more time for that so for now I’ll continue to find his little fingers under his covers and kiss him on the head a few extra times a night.


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Blood Sugars and Broadcasting: A CNN Reporter Deals with Diabetes

Blood Sugars and Broadcasting: A CNN Reporter Deals with Diabetes

Blood Sugars and Broadcasting: A CNN Reporter Deals with Diabetes

By: Oren Liebermann

*This post contains affiliate links*

I had about two minutes until I was on air, and I knew my blood sugar was low. I could feel it in my hands and in my concentration. I was a little bit dizzy, and my hands were shaking. These have always been the first two signs that my blood sugar was low.

Normally, it’s not a problem. I always keep a stash of emergency sugar around. Most often, it’s a bag of Gummi Lifesavers. First, they’re delicious. Second, I love the appropriateness of having Gummy Lifesavers as my emergency sugar. And third, it’s predictable. Five Gummi Lifesavers is 15 grams of carbs.

But normally I’m not about to go live in two minutes. I knew the sugar wouldn’t have time to hit my system, which meant I would be going live on CNN with low blood sugar. The viewers wouldn’t notice. Unless I started stumbling. Or screwed up a word. Or my brain locked. Then they would most certainly notice, and I would have no choice but to plow forward or admit that I had low blood sugar and tell the anchor to go to someone else.

I told my producer – sitting in our little control room about 15 feet away from me – to get me the Lifesavers from my bag. A moment later, he walked into the studio. He couldn’t find the Lifesavers, so he just grabbed the whole bag and brought it in. I rummaged through and pulled out the Ziploc with my emergency sugar. As quickly as I could, I downed a few Lifesavers. Then I started thinking about what I was going to say.

WORK AND DIABETES

I never told my bosses about my type 1 diabetes when I interviewed. They had no right to know and I had no obligation to tell. Besides, as long as I didn’t have a bad low or pass out mid-interview from DKA, I would be absolutely fine. Knowing I would have a long day of interviews, I intentionally took one less unit of insulin than I needed to make sure my blood sugar was adequately high throughout the day. It worked, though I did start feeling the symptoms of low blood sugar toward the end of the interviews.

When I started at CNN as the Jerusalem Correspondent, it was a different story. I told everyone immediately that I had type 1 diabetes. I explained to them the symptoms, showed them how to work my insulin pens, and, most importantly, taught them how to use a Glucagon shot. Everyone was cool with it, which was a relief. Occasionally, my coworkers have asked for “refresher courses,” and I have showed them the insulin pens again or explained to them how diabetes affects my system.

Dealing with my coworkers was the easy part. The hard part was figuring out how to manage diabetes on a 24/7 basis. On days when I’m in the CNN bureau in Jerusalem, it is relatively easy. No matter how big the story and how many times I am broadcasting live, I can always check my blood sugar and adjust as needed.

The harder days are the days I am out in the field all day, nowhere near a convenience store or restaurant. Then I have to plan my insulin, my meals, and my blood sugar well from the very beginning of the day. Add to that the challenge of Middle East weather – if the day is extremely hot or extremely cold, I burn through blood sugar even faster, making healthy management of diabetes even harder.

I have always had a simple plan. On days I am out of the office all day, run my numbers high. Instead of aiming for 80-120, I shoot for 120-160. It gives me a buffer in case something goes wrong or in case my day gets so busy that I forget to eat. And this has happened a few times.

CREATIVE SOLUTIONS

I have always tried to find creative solutions for diabetes, and I don’t mean eating cinnamon to help control my blood sugar. I mean ways of dealing with blood sugar when days are entirely different and dynamic. A daily routine makes diabetes easier to manage; a changing week adds even more complexity to the daily challenge of the disease.

I was diagnosed with type 1 diabetes on Valentine’s Day 2014 in Nepal. My wife and I were backpacking around the world, and my diagnosis came 5 months into our trip. I was the first person in my entire family with diabetes. After a month at home recovering and learning about the disease, my wife and I decided to get back on the road.

We picked up our trip where we had left off, backpacking through Southeast Asia. We made our way through the countryside on trains and buses. Each day was different, and I had to figure out how to manage my blood sugars under different conditions.

It wasn’t easy, but it became good practice for my current job. It requires rigorous monitoring ob blood sugars. I don’t have a CGM (which I may change very soon), but I routinely jab my finger to check blood sugars. I have no qualms about checking 8 times a day. Whatever it takes to know where my numbers are.

It’s not fun. I don’t think anyone would ever describe diabetes as fun. But it’s never been a question of fun for me. I know that if I manage my blood sugars, diabetes won’t stop me from doing anything else. It didn’t stop me from traveling, and it won’t stop me from reporting.

HIGHS AND LOWS

I’ve had a few lows before live shots. It happens. It’s never fun, it’s always a bit worrying, but it’s a part of the deal as I see it. Part of the problem is the sensitivity around Jerusalem. Every word needs to be chosen carefully, because the story is so sensitive in every direction. If my blood sugar is low and I screw up a word, it could have disastrous consequences on my reporting.

My bosses at CNN – when I finally told them I have diabetes – have always been incredibly supportive. Not a single one of them questioned my decision to write a book, and they have always encouraged me to do as much outreach as possible. It may not be their disease, but they understand the importance diabetes has to me and to so many others.

Diabetes may not make the news all the time, but it is always becoming more relevant and more important to the world at large. And that is something I am always ready to talk about on air!


Oren Liebermann is a CNN Jerusalem Correspondent. He was diagnosed with type 1 diabetes at the age of 31 while backpacking through Nepal. He has written a book called the “The Insulin Express: One Backpack, Five Continents, and the Diabetes Diagnosis That Changed Everything” that shares his diagnosis and journey of resilience and self-discovery.


My Early Life, Without Sugar

My Early Life, Without Sugar

My Early Life, Without Sugar

By: Richard Vaughn

*This post contains affiliate links*

When I was diagnosed in 1945, the doctor told my parents that I should not eat anything containing sugar. I don’t remember my reaction to being denied sugar at that time. My diagnosis was only a few days after my sixth birthday.

I do remember missing sweet things to drink. For some time I drank milk from our own cows. That was not a good choice, but we did not know that. It did not contain sugar, so we thought it was ok.

When we went grocery shopping my family did not buy candy, cookies or ice cream. I don’t know what my sister thought about that, she was three years younger, and she probably wanted sugary treats.

A year or so later, we discovered saccharin at a drugstore –

My mother learned to prepare desserts sweetened with saccharin. I had pies, cookies, and a birthday cake sweetened with that wonderful stuff. Saccharin was great! Mother made desserts sweetened with sugar for the rest of the family.

I was happy with my own desserts, and I never wanted to taste of theirs. My father prepared homemade ice cream, and a portion sweetened with saccharin was set aside for me. I always looked forward to that. It was a summer treat.

One day in our grocery store we saw a display of little bottles containing colored liquids. It was called Kool Aid. It was invented in the 1920s and initially sold in concentrated liquid form.

Later on it was sold as a powder in little packets. The Kool Aid we bought in the 1940s was in a concentrated liquid form, so we added water and saccharin. It made a delicious drink. I was very happy.

I had low blood sugar at times for many years –

My mother gave me a glass with some water mixed with sugar. That was the only sugar I had for very many years. I had some awful seizures at night several times each year, and the sugar water was ready for those occasions.

If I could not drink the liquid, my father would sit behind me on my bed and prop me up while my mother rubbed the sugar water on my lips and gums until I had enough to bring me around, so I could drink some of the liquid. I think I may have associated the sugar with my seizures, and that may have made sugar even more undesirable.

There were no meters for measuring blood sugar for my first 40 years after diagnosis, so my urine was tested for sugar each morning to determine my insulin dosage, and then I had to depend on my own feelings to detect low blood sugar the rest of the day.

While sleeping at night my parents would listen for me to be thrashing around in bed to determine that I had low blood sugar. Their bed was close to mine for many years, so that worked out well.

Now I will fast forward to the current century –

I’ll tell you about a discussion that my sister and I had a few years ago. Our father worked at a post office, and he had an afternoon and evening shift. He got home at 11:30 PM. She told me that he would stop at a store on the way home from work and buy candy bars. They were hidden high in a cabinet in the kitchen.

I can remember entering the kitchen several times and my sister was standing with her back against a wall, with her hands behind her. I guess I was not curious about that. She was hiding a candy bar she had been eating.

I never saw a candy bar, and she waited more than sixty years to tell me about that. We laugh a lot about her candy bars. I am glad she had them, and I am glad I did not see them.


To know more of what it was like to be a diabetic in the 1940’s and beyond, you can read Richard Vaughn’s book: Beating The Odds: 64 Years of Diabetes Health 

 


This Disease Is a Catch 22 - Pay The Price Or Pay With My Life

This Disease Is a Catch-22: Pay The Price Or Pay With My Life

This Disease Is a Catch-22: Pay The Price Or Pay With My Life

By: Kayla Bushue

 

Almost 15 years ago I was diagnosed with type 1 diabetes – an autoimmune, incurable disease.

I’ve been pretty lucky thus far. I didn’t take care of myself early on or really anytime; except for during my pregnancy and the time I’ve had my insulin pump. But I did some number crunching tonight just for funsies.

Per month BEFORE insurance the cost to keep me on planet earth is $1,353.37. That’s for insulin, infusion sets, and test strips alone not including hospital stays due to DKA. Now insurance foots a lot of that bill which I’m thankful for.

Credit: Kathy Austin

But why when I live in one of the top countries in the world does it cost me $16,240.44 per year to stay ALIVE???

I understand there are places that don’t have access to the healthcare that I have. Don’t get me wrong I’m grateful I have access to insulin, my pump, and test strips that keep me here everyday. I also understand the older I get the more complications I will have due to this terrifying and one day terminal disease.

But here is my perspective.

I pay a hefty chunk of change to keep myself thriving, OR I skimp by on the bare minimums and deal with the complications. This disease is a catch 22 – pay the price or pay with my life.

Credit: Kathy Austin

Something about having a disease like this doesn’t seem right. I either pay for my medicine or I don’t and deal with the death sentence. I just don’t get it.

In February my approximate cost over the last 15 years is $243,606.60. It’d be nice to have 2017 Aston Martin Vanquish in my driveway; rather than that almost quarter of a million going to keeping me alive.

Here is where you can learn more about the cost of type 1 diabetes, how to get involved, and how to help protect our rights for affordable healthcare.



 

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.



 

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”.



 

diabetes and the unexpected - diabetes blog week

Diabetes Blog Week: Diabetes and the Unexpected

Diabetes Blog Week: Diabetes and the Unexpected

This year is my first year participating in Diabetes Blog Week. I’m excited to be part of this annual diabetes event and share my perspective.

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Having diabetes for so many years I’ve become accustomed to the unexpected. Diabetes has a way of throwing curveballs when you least expect it. It makes things rather difficult and frustrating at times.

Here are my best tips for when the unexpected happens:

Be over prepared

I can’t tell you how many times I’ve been somewhere thinking that I’m not going to need to change my pump site— and it fails. How convenient, right? So now I just bring everything that I could possibly need “just in case”. Just enough to spare me if anything unexpected happens. It’s certainly more of a hassle to carry around extra weight all the time, but the stress of “what if” is therefore not an issue.

Take a deep breath

I have a way of wanting to control everything that goes on with my diabetes to the point where I’m actually doing more harm than good. When unexpected occurrences arise, I’ve learned to now take a deep breath—and handle it calmly and carefully. It’s taken me awhile to be patient, but adding stress to the situation and making quick judgments only makes it worse.

Ask for help

This is probably the most difficult thing I’ve had to learn to do. I always want to feel like I can handle the world and whatever comes my way. But sometimes when my blood sugars are off—and I need assistance getting my supplies, or a snack nearby. Having an extra hand actually makes me feel more at ease and I’ve learned it’s okay to ask for help.

Create back up plans

I’m not always sure if diabetes will cooperate or how my body will react upon each day. Diabetes comes with a lot of uncertainty and unknown. So of course I think of well “if this happens, I have this plan.” But say, for some reason that isn’t effective—I also have this plan for back up.

For instance, I have a dexcom, but what if I don’t hear my alarm, then my husband will be alarmed and call me or run home to check up on me. Creating back up plans creates a more stable safety net and helps living with this disease a little less worrisome.

Diabetes comes with a bunch of twists and turns, up and downs, highs and lows. But I take what I’ve learned in the past and I apply it to the future. No matter how unexpected diabetes is and the challenges that do arise, I will continue on living beyond it.

Would You Kill Me For a Tax Cut?

Would You Kill Me For a Tax Cut?

By: Ashlyn Mills

Blog: A Trail Of Test Strips

Before I get into the meat of this issue, I want you to imagine something…

You are 19 years old and a sophomore in college with your whole life ahead of you. Suddenly, you begin feeling ill. You are thirsty all of the time, you feel lethargic and can barely make it through 5 hours of classes without a nap in your car, something is not right and you know it. You finally go to the doctor after you’ve lost 10 pounds and the doctor tells you that you have Type 1 Diabetes (T1D).

The doctor tells you that T1D is an autoimmune condition that has no cure and teaches you what you must do to keep yourself alive. After learning about carb counting, insulin injections, blood sugar testing, and life threatening high and low blood sugar, you’re sent to the pharmacy to pick up your life saving tools.

For the next 3 months supply, you are given 900 blood glucose test strips, 900 lancets, a blood glucose meter, 6 insulin pens, 50 ketone test strips, and 540 needles to use for insulin injections. All of these supplies would have been upwards of $5,000 without good insurance coverage and even with insurance, your first trip to the pharmacy cost you $400.

Now that I’ve painted a picture for you, let me put a face to this story. This is me, Ashlyn, and this is what a pre-existing condition looks like. The story above is my story. 

As you probably know, yesterday the House of Representatives made the decision to repeal and replace the Affordable Care Act, also known as Obama Care. Obama Care has been a major topic of debate for Americans over recent years. With the ACA, many American’s saw their insurance premiums skyrocket, which made the Affordable Care Act not so affordable.

With the ACA did come some positives such as protection for those with pre-existing conditions and the ability for an adult under the age of 27 to stay on their parents’ health insurance. At the beginning of his campaign, President Trump began pushing the issue of the ACA and saying that should he be elected, it would be one of the first things on his agenda. President Trump also insured that with this repeal, he would protect those with pre-existing conditions. Yesterday, however, the House voted against protecting those with pre-existing conditions.

If you aren’t someone with a pre-existing condition or don’t have a child with one, you probably don’t understand how serious this is. Let me tell you what this could do to people like me.
Insurance companies will be able to decide if they want to cover me or not. I will have to search high and low for an insurance company who will cover me and when I finally find one, they will charge me 3x what they charge the average patient because they know I will be a guaranteed expense.

I will then be paying $3000+ per month just for insurance premiums, which will make many of my daily meds and technologies unaffordable. I may have to limit how many test strips I can afford, which will then limit how many times per day I can test my blood sugar. The less I am able to test my blood sugar, the greater my risk for life threatening high and low blood sugars and long-term complications due to poorly managed diabetes. Meanwhile, some celebrate because they got a tax cut. But those who celebrate don’t know that their tax cut could kill me or the other millions of American’s like me living with a pre-existing condition.

Would YOU kill ME for a tax-cut?

 It all boils down to this, republican or democrat, it is important for you to understand how much this decision could impact me if the senate votes yes in the next few weeks. PLEASE, do your research and contact your senator to let them know that this is NOT okay. I am actually registered republican, but that does not mean I have to stand for this and neither do you. While I believe some MAJOR changes need to be made with our current healthcare system (the ACA) in the US, I do not believe that changes need to be made at the expense of people who have no control of the cards they were dealt. Life with diseases like T1D is hard enough as it is, please don’t make it any harder on us.

TAX CUT

Please contact your senator, my life depends on it.

-Ashlyn 

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One Drop

One Drop | Diabetes Management

There’s been a lot of talk lately about the diabetes management platform called the One Drop. This diabetes management subscription model has paved the way for easier, more affordable and reliable access to many diabetes needs.

I received a complimentary Chrome kit and had the opportunity of trying it out for a few weeks before giving a review.

This platform offers:

Unlimited test strips and 24/7 in-app Certified Diabetes Educator support – all for $40 a month.

The One Drop is not covered by insurance. This is a direct-to-consumer service. You will pay roughly around the same that you currently pay with insurance by copayment. But now you don’t have to deal with the hassle of getting test strips approved.

The One Drop offers a free award winning application to manage your diabetes. You can Download One Drop for iOS and Android, You can track all of your information in one place: glucose, meds, food, activity.

What I Like About The One Drop Management System:

  1. The glucose meter is slick, shiny, and easy to store.
  2. The app is easy to use and gives me insight on how I’m managing throughout the day
  3. Having the option of unlimited test strips gives me flexibility. I no longer to worry about running low on test strips.
  4. I have online support for any questions I may have using the product and how to better process the information that I receive.

The customer management team has been very helpful in assisting me on setting up my account on the app and syncing my bluetooth meter. Once they were both paired, it was easy to keep track of all my readings directly on my phone.

 

The glucose meter is very accurate and glucose reading corresponds to the ones that I receive on my CGM and compare to other glucose meters that I currently have. I would highly recommend this product for anyone needing a positive change at a lower cost.

To get started on the One Drop Premium Plan. (Available in USA, EU, and UK)

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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