Written by Devin “Dollface” Alexis
The month of November is National Diabetes Month. This is an exciting 30 days in the Diabetes Community. Every year, the Diabetes WALK is held state to state by the JDRF (Juvenile Diabetes Research Foundation). All over social media, diabetics are now talking about their experiences more openly.
In the year 2020, most people have an idea of what diabetes is, whether they’ve heard the term or know of someone who has it. Unfortunately, there are still misconceptions and a lot of misunderstanding about what a diabetic person experiences daily. There is also a lot of confusion about what diabetes actually IS.
Let’s break it down a bit. First, there are two common types of diabetes: type one juvenile diabetes and type two adult-onset. Although the titles of the two seem straightforward, they are not because adults in their 20’s, 30’s and even 40’s can be diagnosed with type one.
Here, I’ll explain.
Every human has an organ in their body called the pancreas. The pancreas is responsible for housing and secreting different hormones in the body — insulin, which allows glucose to be passed into the cells.
Without insulin, glucose stockpiles in the blood and turns into toxic sludge. It slows down blood circulation to the organs, and the poisonous sludge starts to pour into the kidneys and liver. It makes the person sluggish, dehydrated, short of breath, and can ultimately lead to heart attack death if prolonged.
This process is called DKA, or diabetic keto acidosis. Symptoms of DKA include fatigue, anger, blurry vision, and lack of appetite due to dehydration.
Type one diabetes is when the body does not produce insulin AT ALL. A cell called a “beta-cell” attacks the pancreas, telling it that insulin is “bad.” It then kills the secretion of insulin from the pancreas. Doctors, scientists, and nutritionists have yet to determine the core cause of beta cells’ formation or where they come from. They have decided it is a genetic mutation that is predisposed.
Type two diabetes, commonly confused with type one, is a whole other disease within itself. Type two diabetes is typically diagnosed in older people and people who are obese. Although this is true, this perception that you have to be overweight and older to have diabetes is NOT TRUE.
Over the years, it has come to light that younger generations have also developed type two, which can also be genetic. A huge misconception is that diabetes is a “sugar disease” and that you will, in turn, get diabetes if you overeat sugar. This, again, is not the truth.
Yes, people who are obese DO get diabetes MOST of the time. But alcoholism and medications like Prednisone can cause type two diabetes. This is because your pancreas works overtime to cover the amount of glucose you need to function with the prescriptions consumed.
Type two can be managed by pills, which are small doses of insulin to kickstart the pancreases’ own natural insulin. It can also be controlled by diet and exercise – the less processed foods or heavy carbohydrates, the better the body can naturally break down the glucose.
Here is a critical point that I know EVERY diabetic reading this is just waiting for me to talk about.
There is NO CURE for type one diabetes. Until there is a way to determine why the Beta cells form and attack the pancreas, type one diabetics cannot be cured by diet and exercise. A type one diabetic HAS to take insulin synthetically before every meal and when their blood sugar spikes to survive.
Diabetics measure how much insulin to take by their carbohydrate consumption. Carbohydrates turn into glucose in the bloodstream, unlike protein, which breaks down into fat. Type one individuals do not need to take insulin for protein as it does not affect the blood sugar unless there are added sugars into things like processed meats or cheeses.
The only way to receive insulin is through an injection. Thankfully in 2020, technology has come a long way, and there are many spectacular technological advances. Companies like Medtronic, Tandem TSlim, and Omnipod make a device called an “insulin pump.” A beeper looking device with a tube attachment stores the insulin and is released into a hairline sized needle that stays under the skin.
Every three to five days, the port is taken off and reattached in a new area on the stomach, hips, or arms.
There is also a device called a CGM, which stands for “Continuous Glucose Monitoring” system. It is another device that stays attached to the skin by a hairline needle. The needle reads your blood and measures the glucose levels.
It then communicates with a device (usually a cell phone) and lets the diabetic know the fluctuations in their blood sugar in five-minute intervals. This can help prevent many high and low blood sugar spikes, so you can adjust accordingly by taking a sufficient amount of insulin or eating something.
The blood sugar is measured by how many milliliters of glucose is in the blood at the reading time. It is measured on a number scale. For a non-diabetic, regular readings are between 70-130, and non-diabetics are 80-150 and usually feel more comfortable. Everyone has different goals with their blood sugar; 120 is typically the target reading. Diabetics like to joke that 100 is a “unicorn number,” which is just as rare as seeing one of the mythological beasts.
Several factors can affect blood sugar like carbohydrate intake, emotions, moods (which are big ones), medications, atmosphere, hot and cold environments, and lack of sleep all play a role. Sometimes, you can wake up and go throughout the day, trying your best to manage your numbers without explaining why your sugar levels are off.
Every day is a gamble, and there are no vacations for a diabetic. Diabetes can affect your daily life and the interpersonal relationships within them. It can create isolation and what we call “diabetic burnout,” which is when things become too overwhelming and the Diabetic stops taking good care of themselves.
Depression and suicide rates in diabetics are double the current average of individuals without diabetes in the United States. Other autoimmune issues are typical, such as fibromyalgia, celiac disease, and irreplaceable nerve damage.
These damages are sometimes inevitable, but the best control is active diligence and low carb, high protein diets.
I always say that diabetes is not a one-person disease. Still, individuals need a support system of patient, understanding individuals, and willingness to see past the mood swings, the breakdowns, the canceling of plans, and all the highs and lows (not just with our blood sugars).
It is also having patience and an understanding of yourself and your disease and that you are trying your best to control something that you were given with no choice.
Being a type one diabetic for 29 years, I have experienced more than most. Now that you know what diabetes is and some of the causes and effects, let me introduce myself.
My name is Devin “Dollface” Alexis. I am a 30-year-old female with type one diabetes from New York City. I was diagnosed when I was a year and a half old when I was taken to the ER due to a stomach virus. The truth was, I was in DKA and severely hydrated with a blood sugar of over 1,800.
Basically, I was at death’s door. My veins collapsed, and the doctors put stints in my legs to keep my heart from giving out due to lack of oxygen. I do not remember this experience, but I have gone through many, just like it in my life.
At the age of 20, I had a heart attack due to DKA. At 26, I started to lose my eyesight and, in 2018, went completely blind. For the entirety of last year, I had double eye surgery and spent days face down with gas bubbles in my eyes. In total, I had 11 laser treatments to rid of scar tissue and two injections.
I had no idea it was because of celiac disease, which was a byproduct of diabetes.
Celiac disease is a gluten allergy. Gluten is found in white flour or wheat, which is primarily used as a preservative in processed foods. Food companies use gluten to prolong shelf life on pasta, bread, and even things like soy sauce.
When you have a gluten allergy, it does several things to the body. It inflames the intestines and makes it contract, preventing food from being able to digest normally. It slows down the process of gastric absorption, so food sits in the stomach for hours or days at a time, causing bloating and constipation.
Often, the food cannot process at all and sits in the chest cavity until it comes right back up. The body attempts to release the gluten by way of skin irritation, breakouts, and areas of psoriasis. It also slows down the circulation of hair growth and cuts, wounds, scrapes, etc. to heal at an average rate.
As a result, I have developed Osteoporosis, which is when the bones become weak and brittle due to a lack of vitamins and nutrients being absorbed.
I’m not going to simplify my experiences by saying it has not been a rough road, but I have never let diabetes stop me from accomplishing my goals through the ups, downs, and pain. I have spoken a lot about my social media, which is my real message with this article.
I hope to influence those who are having trouble finding their inner strength through navigating this disease. At 30 years old, I can say I have genuinely accomplished my dreams. At the age of 16, I left home and started tattooing. I went to art school on a full scholarship, then esthetician and special effects training.
I worked at film studios like Universal, Paramount, NBC, and Jame’s Franco’s production company doing special effects makeup for various films. Celebrities from Miley Cyrus to Kurt Russel are also a few of my clients.
There were days I couldn’t feel my feet, my blood sugar would drop so low then spike for hours at a time, or I avoid sleep going from 12 hours of filming to an overnight shoot. I was a woman on a mission, and looking back, I don’t regret the fantastic career experiences rooted in me not wanting to be weak or defined by my disease.
Now, I don’t know about other diabetics reading this, but every time I see another Diabetic “out in the wild,” I automatically want to be their best friend! I met Afi while at the gym and noticed her CGM device on her arm.
We instantly connected and realized how many commonalities we shared, like working in entertainment and beauty!
Meet Afi Maita (also known as, Afi Like Taffy).
Afi was a former stylist for Saks Fifth Avenue here in Scottsdale, AZ. Originally from Nigeria, Africa, Afi is a style icon, influencer, and stylist.
When I heard this information, I knew we HAD to collaborate, and I couldn’t wait to do her makeup! A while after, I saw Afi on the cover of the September issue of AZ Foothills. I knew National Diabetes Month would be the perfect opportunity for us to showcase our work and talent and spread the message that diabetes does not control you. You control it.
I had the opportunity to sit down with Afi and ask her a few questions about her diabetes experiences.
How long have you had diabetes?
I’ve been living with the type 1 diabetes condition for over eight years. February 27th will be my ninth year after diagnosis.
– Afi Like Taffy
What does your typical daily regimen look like?
I wake up, and like clockwork, I check my blood sugar. By pricking my finger with a lancet (needle) utilizing a test strip that is pushed into a meter that gives an instant, accurate reading of my blood sugar. 15 minutes before I eat each meal, I administer insulin from my pump, putting in the carbohydrates I’m about to consume to cover my meals. I do this at least 5 times a day.
– Afi Like Taffy
How has diabetes affected your mental health? Do you ever experience burnout periods, and if so, what types of things do you do to cope?
I have learned to become a type 1 diabetic as this disease is for life. You can’t just be diagnosed, then boom, you know everything. I went to classes to educate myself, and it was challenging at first. I had thoughts of self-inflicting pain as it became unbearable, knowing I would have to live like this for the rest of my life.
I see a therapist once a month to help me manage my condition as a way of self-care. I also book myself a self-care treatment once a month with a facial or therapeutic massage to help pamper myself and boost my mental state.
– Afi Like Taffy
What about your career? Does it affect your professional life?
As a wardrobe stylist, I’m always running around, so I’ve had to adjust my insulin pump to administer less so I don’t suffer any lows (hypoglycemia). However, on average, I still manage two low blood sugar drops on a busy day consisting of sweating, shallow breaths, and dizziness. It’s very discombobulating. I carry Capri Sun drink packets with me wherever I travel to just be prepared, and most of the time, I run out, so I go to my back up fruit snacks for emergencies.
– Afi Like Taffy
Were you ever not able to do something career-wise because of diabetes? Did you ever feel limitations because of diabetes?
Knowing I can’t join the military, careers in the army, air force, etc. if given a choice was baffling as that is not even a choice for me with my unstable hereditary condition of Type 1 diabetes. However, there are so many other ways to serve your country today.
– Afi Like Taffy
As a type 1 diabetic, what are a few things you would like non-diabetics NOT do when diabetes comes up in a conversation?
Simply don’t say, but you are not fat, how can you be a diabetic? Please learn the difference between type 1 and type 2 diabetes, and don’t assume. Just ask me!
– Afi Like Taffy
How do you think we as diabetics can influence, inspire, and help spread awareness?
Utilizing whatever platform, you have to educate and spread the word, join nonprofit organizations like JDRF or Beyond Type 1 to spread awareness. Please don’t be afraid to wear monitoring devices in places so people can see it. It’s a great conversation starter.
I work with two diabetic consumer goods brands called Myabetic and Pumpeelz. Use AFILIKETAFFY15 for Myabetic discounts when you shop. They have the coolest diabetic supplies bags. Pumpeelz provides you fun stickers to dress up your medical devices, customizing them, use coupon code AFILIKETAFFY25 to get 25% off when you shop.
– Afi Like Taffy
Are you apart of any groups, clubs, nonprofits for diabetes? If so, please explain what each is and your role in these organizations.
I have worked with the AZ Chapter of JDRF a few times on different events to raise money to help find a cure for type 1 diabetes as our condition is incurable. They are an excellent nonprofit organization that raises awareness of type 1, has chapters nationwide, and hosts a “Promise Gala” every November during Diabetes Awareness Month, which raises millions of dollars for research to find a cure. I was lucky enough to attend my first one in person last year before COVID-19 struck this year. It was magical. Were so close to finding a cure. I know it.
Beyond Type 1, co-founded by Nick Jonas, who also has type 1 diabetes, is another fantastic nonprofit organization that helps raise awareness by celebrating the achievements of people who live with the same condition. They ask us how we live beyond our situation, and it’s such a marvel to witness the type 1 warriors accomplishing amazing acts.
– Afi Maita
Beyond Type 1, co-founded by Nick Jonas, who also has type 1 diabetes, is another fantastic nonprofit organization that helps raise awareness by celebrating the achievements of people who live with the same condition. They ask us how we live beyond our situation, and it’s such a marvel to witness the type 1 warriors accomplishing amazing acts.
For more information about the Type 1 Diabetes Research Funding and Advocacy (JDRF), visit https://www.jdrf.org/.
For more information about Beyond Type 1, visit https://beyondtype1.org/.
Photography by Marika Castañeda
https://www.marika-photography.com/
Follow Devin “Dollface” Alexis on Instagram
https://www.devindollfacealexis.com/
Follow Afi Maita on Instagram
http://www.afiliketaffy.com/
