Type 1 Diabetes Diagnosis Journey

posted:

9/22/2015

My story has taken me a while to put into words, but every time I tell my story or even remember these past few years, I get tears in my eyes.  Tears because it has been hard.  Tears because it has been a journey I wouldn’t trade for anything in the world.  Tears because I am endlessly thankful for everyone who has encouraged me.  Tears because living with type 1 diabetes has taught me to choose joy above all else, so yes, I am thankful for this ever so consuming disease!

Have you ever felt like superman (or superwomen)?!  That feeling like you are on top of the world, everything is just cruising along and life is pretty great.  That feeling that you are invincible.  Whether we want to admit it or not, all of us have been there at some point.  And this is where my story begins.

You are in your 20’s.  Life seems pretty grand.  You are starting to live out the prospect of your dreams and accomplishing your goals.  College is slowly coming to an end and the possibilities of future plans are endless and oh so exciting!

Then all this life bliss turns into constantly feeling tired and miserable, countless blood tests and doctor office waiting rooms filling up your day.  After 6 months of testing and procedures, no one has an answer as to what is wrong with you.  During that time, I just kept thinking, something please be actually wrong with me so we can figure this out, solve it and move on with life.  Well I guess as the old saying goes, “be careful what you wish for.”

As I came home from college that Christmas break, I was exhausted (which I thought was from non-stop studying for finals), very skinny (which I didn’t really notice, but hey seemed like a good problem to have), and constantly starving (I love to eat so hey thats ok too, right?).  Finally while out to dinner with my family, I broke down into tears because my mouth was so dry, I couldn’t even talk, and dry mouth, a common symptom of diabetes, is very painful.

Barely able to walk up a flight of stairs, I checked myself into the emergency room and was told I was in a diabetic coma with sugar levels in the 400s range. That night in the emergency room, with my sister laying by my side, was probably one of the most confusing nights of my life.  I was given the diagnosis that I was a Type 1 diabetic.

Diabetic? Oh I don’t have diabetes—thats for people who are older, slightly overweight and eat Snickers bars all day (sorry for making a stereotype).  I ate healthy my entire life—yes, I was the girl in school with her tuna sandwiches on whole wheat, sprouted bread with carrot sticks and applesauce for dessert.  I grew up in a home where my mom fed us very healthy, never touching soda or a bag of Cheetos.  My mom fed our family, organic, natural and completely unprocessed foods.  We didn’t grow up on packaged microwaved dinners (in fact we didn’t even have a microwave, shocking…yes) but we grew up on roasted chicken or grilled meats, always with a big salad.  Dessert was for special occasions and always homemade treats!  

But little did I know, this was not the type of diabetes I was diagnosed with.  Type 1 diabetes is not caused my eating candy bars and not prevented by a mother who worked so diligently to take care of her family, but really thank you Mom for all that you did!

This is what I struggled with understanding during the initial days of my diagnosis and something that was never, ever explained to me.  In fact, it wasn’t for about 6 months later that I understood I had an auto-immune disease, something that was irreversible and something that I would live with for my entire life.  Talk about life changing!

I was handed endless prescriptions, told I could eat whatever I wanted and told to simply count my carbohydrates.  Nothing really was ever explained to me on how to manage this new diagnosis and lifestyle.

To say the days that followed my diagnosis were a dark and difficult time is an understatement—I was scared, confused and completely hopeless.  I felt alone and had no clue how I would get through the rest of my life with this disease.  I didn’t want to talk about having diabetes, because I didn’t want to be viewed as different, so I never truly shared what was going on in my life.  I was completely miserable and depressed.  So I invested my time in outside activities that don’t truly ever bring true satisfaction.

Shortly after going on insulin, I gained 22 pounds in a short 2 weeks, nearly fainted multiples times everyday and was completely embarrassed by my looks, and my condition.  I didn’t have any clothes that fit, and vividly remember crying buckets of tears in the Anthropologie fitting room…on several occasions.  As a 20 year old girl, weight gain that drastic is completely humiliating, especially when you have no control over the pounds that keep accumulating.  My legs, arms and stomach were black and blue from giving myself shots.  I was reaching for peanut M & Ms and Hershey kisses multiple times per day just to keep my self from fainting at my job or in public.

Although I had a smile on my face, inside I was crumbling.  The doctors told me I was fine, this was just the way life was going to be and to continue counting my carbs.  It doesn’t matter what you eat, multiple doctors told me, as long as you “count your carbs and take the right amount of insulin.”

I have never been one to take no for an answer and knew there HAD to be a better way to live.

Here is what I wish someone would have told me the day I was diagnosed with type 1 diabetes: “You have a life-changing auto-immune disease that you will live with for the rest of your life.  But, there are so many things that you can do to improve your daily life—with the combination of food, nutrition and modern medicine you can live and feel great, and all parts are equally important.  Let me help you understand all of this—let me hold your hand through this process so that you truly can understand how to live with Type 1 diabetes.”

So what exactly is Type 1 diabetes?

Like I previously stated, no Type 1 diabetes is not caused by eating too many candy bars, but rather it is an auto-immune disease.  However, I am thankful that I realized that no matter what type disease I may have, food and nutrition do impact my daily life.

“Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin, a hormone needed to allow sugar (glucose) to enter cells to produce energy.” — Mayo Clinic

After my initial diagnosis, I was handed stacks of papers and told to start counting my carbs—if any of you have ever seen these types of papers, confusing is an understatement.  As long as I took the appropriate amount of insulin, it didn’t matter what I ate.  Pizza and spaghetti I asked? “Yes, thats totally fine to eat just take enough insulin.”  Ice cream? “Yes, thats fine too, just take enough insulin. Make sure you are eating plenty of servings of healthy whole grains with each meal” —words I heard over and over again.  Sorry, but this just didn’t make sense to me!

In the first two weeks of being on insulin, I gained over 20 pounds.  I was never hungry, in fact I felt extremely sick—bloated, irritable, shaky, nauseous and tired—all the time.  You know that feeling after you ate Thanksgiving dinner, so stuffed that you don’t even want to move?  Thats how I felt day in and day out, all day long, without having barely eaten anything!  I left restaurants and clothing dressing rooms in tears and would sit in the bathroom stall attempting to fight back the tears at work.

I would practically faint multiple times throughout the day, but I was working a desk job at an internship in Washington D.C so it’s not like I could get up and just leave work.  So when I would start to feel faint, like head spinning, sweating through my clothes type of faint, I would reach for the only thing around me—candy, usually Hershey kisses or M&Ms.  I would quickly stuff my face in attempts to simply stay coherent.  Yes, that rush of sugar literally saved me in the moment, but then it caused more irritability, high blood sugar and then eventually another crash.  The high blood sugar spike then had to be fixed with more insulin injections and thus the blood sugar roller coaster ride began, day in and day out.

Completely confused and hopeless, I then thought I could solve my weight gain problem by constantly working out.  I would go to the gym daily and probably put way too much strain on my adrenals with all this working out.  I ate very little food because I thought that with the combination of working out and little food I would loose weight.  And no, it didn’t work at all.

Yes, you get the point—I was miserable, hopeless, absolutely desperate.

I have never been one to take no for an answer and in my moments of desperation, I realized I had to take matters into my own hands.  I began reading and researching everything I could get my hands on—scientific studies, clinical trials, principles of ancient medicine, Asian medicine, nutrition books, blogs, cookbooks and personal stories. 

Through my research, I learned how sugars and carbohydrates affected my insulin need, blood sugar stability and in turn my daily health.  I discovered that although I have an auto-immune disease, the more sugar and carbohydrates I consumed, the more insulin I would likely need.

Lightbulb moment!

My dad emailed me saying have I read this book called Wheat Belly?  Well, I rushed off to Barnes and Noble that day to purchase it and quickly read from cover to cover.  I was fascinated, and it finally clicked for me.  I can’t exactly explain the hope that flooded my emotions the day it started to all make since to me.  It was truly like turning on a lightbulb after a year of wandering hopelessly in the dark.

Yes, the food I choose to eat does impact me—and for a diabetic, it really impacts me!  It seems so simple now.  The more carbohydrates I choose to eat, the more shots of insulin I would need, so why not just reduce the carbohydrates I consume each day? 

Now I thought, if the principles of eliminating high carbohydrate and high sugar foods can work to reverse type 2 diabetes, hypoglycemia, metabolic syndrome and so many other “modern diseases” the same principle could potentially help my case—no, it cannot cure Type 1 diabetes, but I thought it could for sure help!  And when you are as desperate as me, I was willing to give it a try.

This is when I discovered the Paleo diet and eating grain, gluten and refined sugar free.  For me, I like to call this eating real, unprocessed food as it is commonly found in nature.  Just eat real food—yes, it’s really that simple!

I radically transformed my diet, eliminating all grains, glutens and refined sugars.  I am an all or nothing person, so I cut them all out completely and the difference was huge.  The difference was so noticeable, instantly, that I have never looked back!  I was slowly able to drop my insulin intake, the excess weight slowly came off and my appetite started to return.  I “honeymooned” for about 1 1/2 years and was able to remain off insulin for that entire time.  But I was (and still am) very very strict with what I ate!

During this time, I always knew that my return to insulin was inevitable, but I stayed very strong with my diet and lifestyle and truly felt great.  I married an amazing man, who has been more than supportive of my lifestyle and we even created a grain-free wedding cake to cut at our wedding, just so I could feel like a normal bride on our special day!

This past summer, August 2014, after two bouts of the flu, a move, and way too much major life stress accumulating for a few months, I crashed again and ended up in the ICU for a few days.  After telling the doctors all the stress that had been going on in my life for the past few months, they said no wonder you are here, but clearly you are managing your disease quite well.  (Stress plays a huge factor in general but especially an auto-immune disease such as type 1.)  I instantly responded to a small amount of insulin and the doctors were shocked at how well I recovered.  I have been consistent with my insulin daily since that moment.

I initially felt so discouraged and embarrassed by my condition and was so scared to go back on insulin after the way it made me feel a few years back.  But this time, after studying nutrition and becoming a Nutritional Therapy Practitioner, I felt like I had so much information to truly make this lifestyle work.  Yes, for me I believe the combination of insulin, food, and nutrition, are all equally important parts to living with Type 1 diabetes.

Today, my condition is very stable, my doctors always love when I come in for my checkups and blood tests, because they are always amazed at how stable my blood sugar is.  I love getting to explain things like what grain-free pizza is or watching them review my food log and respond back saying, “Wow, you eat like a gourmet restaurant, I wish you would cook for me everyday!”

Choosing Joy

For me, I am honestly thankful for living with Type 1 diabetes—although it is a consuming disease and something that I have to think about every hour of the day.  It is hard at times (well most of the times), it is hard when all you really want is to eat that slice of pizza or lick that ice cream cone like everyone else.  But above all else, this disease has taught me to choose joy.

Being diagnosed with Type 1 has opened so many doors for me and truly shaped my life passions.  It has taught me to be disciplined and never ever give up, to persevere against all odds in every manner of life.  It has brought countless unexpected friendships into my life, it has given me a passion for helping others and teaching them about nutrition, as a NTP, Nutritional Therapy Practitioner.  It has allowed me to share my story with others and inspire them towards healthy living.  It has given me a love for finding beauty in everyday life and food photography, which actually lead me to write an ebook, Scrumptious & Styled, to inspire others with their photography.

Food is something so essential to life.  It is completely ingrained in our society, in our memories, in our gatherings, and in our celebrations.  Food is something that impacts our daily lives, so for me, I choose foods full of flavor, foods that bring me comfort and foods that nourish both my physical body and my happiness.

When I was first diagnosed with Type 1 diabetes in college, it was the foods associated with memories and gatherings that I always missed the most.  It was hard to say no to that slice of Thanksgiving pie or that Friday night pizza night, so I re-created those foods in my cookbook, All American Paleo Table, to bring joy back into our daily meals and lives, to prove that living with a healthy condition is not restrictive or mean you have to give up everything you love—you just have to recreate your favorites using the right ingredients, free of grains, gluten and all refined sugars.  That is the heart of my cookbook and these meals and events allow me to continue choosing joy each and everyday!

For me, there are so such things as “cheat days” or here just take one bite, it won’t hurt you.  Even for me most grain-free or “Paleo-treats” are off limits, unless I make them and know exactly how much sugar is in them.

So you might ask, this way you eat seems so restrictive, it seems like so much work? How do you do this day in an day out? For me, this way of eating is the opposite of restrictive! It allows me to thrive and live each day to the fullest.  I am healthy and happy for my husband and my friends, and maybe one day even a family of our own.  

I want to be able to be my best self for those I love!  So no, this way of eating is not restrictive at all, it is quite the opposite.  To me, this way of eating allows me to maintain my health without being a slave to multiple insulin shots or fainting spells.

My blood sugar is so stable due to a combination of strict diet and taking insulin.  Yes, there are days that are harder, but for the most part, I don’t have the fainting spells or blood sugar spikes that cause me to crash or feel loopy.

The biggest joy to me is sharing my story with people and helping them through their journey.  There is still so much that is unknown about Type 1 diabetes, but my biggest encouragement to people with this disease, is never ever give up.  It takes work day in and day out, but in the big scheme of life, it is absolutely worth the dedication.  

A few months ago, I had that moment when I realized everything I do was worth it when I got to share my story with a young 9-year old girl who was diagnosed with Type 1 diabetes earlier that week.  As I shared my story she responded, “I am going to celebrate the day I was diagnosed every year…because we listened to Caroline’s podcast and she as happy about having diabetes, so maybe if I’m happy about it, it will be easier to deal with.”  I have had that quote printed out on my bulletin board every day and it reminds me daily of why I choose joy.  That is my story and that is my hope for others, to choose joy despite what life brings and to never ever give up!

After my initial diagnosis, and quite often may days since, I have wondered, “Why me? Why choose me to live with such a life changing and consuming disease?”  I am often reminded that “He has made everything beautiful in its time.”  Living with type 1 diabetes has truly taught me to choose joy, it has given me a passion for nutrition, photography and sharing my story with others.  I never set out to be an inspiration to others, I never set out to write a cookbook, start a blog or encourage others never to give up on what difficulties they may be experiencing in life, but this was the plan for me and I am ok with this plan, because it truly has become a beautiful story.

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