type 1 diabetes diagnosis story
I will never forget the summer that changed my life forever.
In the summer of 2014, I just graduated college, working a full-time job, but couldn’t help an underlining feeling that there was still more for me to see and experience in the world. I decided to leave everything behind to travel the world in the search to learn more about myself and my life’s passion. Little did I know that this trip of a lifetime actually landed me in a European hospital for three days which changed my life and everything that I thought I knew about myself.
The first stop on my travel plan was New York City! It was my first time visiting the big city alone. Overwhelmed by the constant hustle and bustle, I also saw so much beauty the city had to offer. I was able to stay with my former college roommate/ best friend while we hit the town sipping cosmos, shopping 5th Avenue even though we couldn’t afford anything, and waiting hours in cheap stand-by lines to get to see award-winning Broadway plays.
After two weeks of exploring Manhattan, I started to slowly notice a significant difference in my body.
I was experiencing severe weight loss, frequent urination, extreme thirst, and dry mouth.
I am a tough person so none of these symptoms were making me slow down my site seeing adventures. It was easy for me to brush them off. I only thought I was losing so much weight (originally 130 lbs down to 109 lbs in 2 weeks) because of all the walking I have been doing in the city (and I was proud of myself for loosing a little bit of weight haha). I thought I was just super thirsty with constant dry mouth because of all the walking and the hot June summer heat- which then obviously made me pee a lot. I was also experiencing a uncomfortable yeast infection (which I’ve never had before), but thought it could have been caused from my constant sweating in the humid Manhattan heat. So, all of the symptoms I was experiencing seemed normal because it made sense to me logically.
Ignoring all my mysterious symptoms, I hopped onto my next plane for my next travel stop in Barcelona, Spain where I would meet up with my mom for a mother daughter post-graduation trip! During this 14 hour plane flight, I embarrassedly went to the bathroom at least 20 times. The person that I had to crawl over every single time hated me. The worst part was that since it was an overnight flight, I had to shyly shove and wake up the person in the middle of her slumber to go to the bathroom. When I say it was the worst flight ever, it was the WORST flight ever!
I arrived in Barcelona. It was my first time visiting and I was so taken back by all the city’s beauty. I loved the creative architecture and art expressed throughout the city. It left me feeling so inspired.
We were there for about three days where I started to notice how extremely fatigued I have become. I was walking through the Sagrada Familia and Las Ramblas Street where I noticed myself becoming weak and struggling to keep up with my 50-something year old mom. I could not walk long distances anymore and walking up stairs were near impossible for me. As an extremely healthy and always active person (cyclist, yogi, marathon runner, surfer, lifeguard, hiker, etc.), this last major symptom hit me hard. I am only 23 years old and I couldn’t keep up with my mom… that’s when I realized, Something was very wrong. (Check out The Warning Signs of Type 1 Diabetes)
Still, I was in no way thinking of my symptoms as anything but jet lag, so the next day I boarded a cruise ship from the port in Barcelona for a Mediterranean cruise which would serve as our floating home for the next 18 days.
The first night on the ship, I sat up with my mother discussing these strange and baffling symptoms that my body was demonstrating. We were completely perplexed and began to google the list of symptoms (with our costly and time limited boat internet) and became very scared at the results. After all my Googling, I still only thought I was experiencing a bladder infection. We made a collaborative decision to go check into the ship’s medical doctor to see if there’s anything that could be done.
The next morning I get dressed, looking cute thinking we would see the doctor for a few minutes and then we could continue on our day of exploring the boat and eating lunch on the ship deck. We walk down the long halls and descending down multiple staircases until we reach the bottom center of the boat where the doctor’s quarters were.
We walk into the “medical care center” section of the boat. I remember it feeling dark with no windows to the outside world. Truly a surreal feeling transforming me to be anywhere.
The boat’s doctor comes in with blue scrubs, wrinkled skin, glasses, and white hair introducing himself with a thick South African accent. I thought it was pretty cool how everyone on the boat was literally from all places around the world. I told the doctor the symptoms I was experiencing. He looked at me and immediately went to a locker to pull out a glucose meter kit. Without him telling me anything else, he told me to hold out my finger so he could prick it. Meanwhile I was thinking how weird this all was. He still hasn’t explained anything to me. I sat in silence as we wait for the glucose meter to evaluate my blood sugars. All I thought was that he was just going to give antibiotics or something so that we could continue on our day and make it to our lunch reservations. He pricked my finger and looked at the glucose meter with wide, worried eyes.
There, in the belly of the ship, I was immediately put to bed in their makeshift hospital and hooked up with an IV as I felt a slow panic arise in the room. I could sense that there was something serious going on and I still did not know what it was, but from the alarm and frenzy of the nurses and doctor, I sensed it was not just jet lag or even the flu. The doctor and two nurses come to my bedside and finally disclosed to me that I was in full diabetic ketoacidosis and it was serious! They told me that if I have waited a few days longer, and I could of slipped into a coma and been in real grave danger.
So, there I was floating on a ship in the middle of the Mediterranean Sea with a doctor from South Africa who spoke broken english and a very archaic understanding of Type 1 Diabetes and my life fully in his hands. To say I was petrified would have been putting it mildly!
My life came to such a screeching halt because this diagnosis hit me on every front of my life, not just physically. Here I was a picture of health, 23 year old athlete beginning my journey into the real world of life after graduating college and this blow was physically, psychologically, spiritually and emotionally devastating. The doctor gave us his honest opinion that he did not have a full understanding of Type 1 Diabetes and that the equipment that he had on his ship medical clinic was out-dated and primitive to help in ways that a hospital on Land could provide. Flying back to the United States was completely out of the option because of how unstable and critical my health was- there was no way I would make it back home alive. It was possible to bring me back to health on the ship, but a hospital on land was going to have better supplies. I listened to his concerns, but I was honestly more scared of having to leave the ship and travel to a foreign Italian hospital in this condition. I was scared of getting lost in a hospital foreign system with doctors and nurses that could maybe really not be able to communicate with me. I felt more secure and comfortable to stay were I was at with the people I know can speak English and can help me.
So my mind was already made up… I was to stay on the boat. I remember desperately thinking I was not going to let this stop me from achieving my goals and keep me from seeing places like the Italian countryside, ancient Greece, unique Turkey, the breathtaking coasts of France. So thankfully, they agreed to let me stay and to help get my out of the deadly DKA state.
So for three long days and two sleepless nights, I stayed in the belly of that cruise ship floating in the middle of the Mediterranean Sea. While the hundreds of other people on the normal deck levels were laughing, eating, enjoying their vacations, I was stuck in the deep dark belly crying for days. I remember the ship docking in France for people to go on daily excursion, and my mom would run all the way up to the top deck to take a picture of the port of France and run all the way back down to me to show me what “France looked like.” Since I was so sad to be missing out on seeing a new country that I originally planned on seeing with my own eyes, that photo was the closest I was going to get.
Each day and night, every single hour on the dot, the nurse would quietly come in, prick my finger, record it, check on me, and then leave. I remember thinking how tired they must be waking up every hour in the night to check my blood sugars. I got so used to it that when they come in the middle of the night, they would pull out my hand from my hospital bed, test and I didn’t even wake up nor noticed a thing! There was a little TV in my hospital room where I would watch the ship’s movie channel for hours. They played the same 4 movies on loop, over and over again and only in French, Spanish, and Italian with English subtitles. My favorite was watching Saving Mr. Banks. Even though it wasn’t in English, I loved that I at least had that to help me escape my current reality (and while laying there I could at least work on my conversational French a little bit too).
Three days go by, and I start to feel better. I look hydrated. My skin has color back in it. I didn’t feel so fatigued just going to be bathroom anymore. I didn’t even feel the need to pee every second anymore. The ship doctor came to do my check-ups and run my tests. I have finally reached the point that I was out of DKA where I didn’t need to be supervised in the hospital bed anymore. So with the help of the doctor and nurses, they all crowded around my bed again, unhooking me to all the machines. One of the nurses performed my first insulin shot on my stomach (since I was always hooked up to an IV, they would give me my insulin previously through that). My hands were sweaty, my eyes were giant, and I was terrified with the fact that I know have to do that for the rest of my life. The doctor handed me a pile of prescription slips of all the new medications and supplies I need to now live my life!
Overwhelmed with my “new life,” I was happy to be alive and extremely sad of what this means for me. The ship had just docked at a port off of Italy. My mom and I take the perscpritions and finally walk out of the medical center. I remember as I was walking up and up the stairs, coming out from the dark belly of the cruise ship, there was sunshine, distant music from a band on the ship, laughter, kids running down the hallways. As everything else was the way I left it three days ago, I came out a truly new person.
We get off the boat and walked into the small Italian town- Livorno. We unfold a map and walk to the closest pharmacy to fill all my prescriptions. Of course, the pharmacist only spoke Italian, but with our charades and prescriptions he knew what I was trying to get. With bag-fulls of my new life-line medications and medical devices, we then map ourselves to the closest coffee shop to sit at while we figure out what I literally just bought at the pharmacy. Most coffee shops in Europe all have internet access, so coffee shops were my new best friends for the entire trip (Now that I think about it, this was probably the spark that started my now everlasting obsession with exploring coffee shops). I had to learn everything about managing Type 1 Diabetes strictly through the internet and reading articles online.
The first Italian coffee shop we sat at after the pharmacy to use internet to look up how to use everything.
Me at the coffee shop with my first ever glucose meter that was al in Italian so I had to Google on my phone YouTube videos of how to use it
My “fun” vacation was taken up with frequent internet cafe visits where my mom and I would desperately look for answers for my overwhelming amount of diabetic related questions. With many, many lows and ups (in both blood sugars and moods), I still managed to travel to all the beautiful places that I wanted to go while trying to figure out my body and how to take injections.
Me Googling questions about type 1 diabetes on my iPad in our hotel in Eze, France.
As much as I wanted to wake up from this nightmare, I had to stay strong and face the facts. After crying for hours on end, I immediately started looking up ways to help my condition. Dealing with this disease is hard to do (especially on my own), but with the people I met during my travels, my family, my friends, and even the friends that I have made on other random diabetic websites, they have all helped me get through my toughest times and continue to safely travel.
Sitting down after experiencing my first scary low blood sugar in the middle of a tour of ancient Pompeii.
Eating my first piece of bread in Italy after diagnosis. Yes, we can still eat whatever we want! And my old lady glasses because everything was still blurry from my drastically changing blood sugars during diagnosis.
My whole adventure has inspired me to make my own website and social media Instagram account to help others just like me who are looking for hope and continuing to live a happy life. I can easily say that those supportive people have saved my life and sanity. Without them, I would have not been able to take on this disease as a challenge and not let it define me.
My first day of exploring Rome, Italy after diagnosis.
THE TOP THINGS I’VE LEARNED:
Let yourself feel however you want to feel.
Give yourself permission to feel whatever feeling you feel during this extreme change in your life. It is just a part of the acceptance process. Just as long as you give yourself that time and then move on from that feeling into positivity and productivity. It helps to talk about it with family, or peers, or journal about it and express yourself to help let go of those feelings.
The power of education and awareness.
So many people in the world don’t know what Type 1 diabetes is. So it is important to know how to educate your family and friends what the disease is and how they can help you if you are ever in a helpless state. Check out this education materials HERE.
It is confusing.
This disease is a very confusing one, because no one knows how it is caused, no one knows how to cure it and no one knows how certain things will affect your body. It can be extremely confusing and frustrating in the first couple of weeks having Type 1 because not every body is the same so it really is a science experiment to figure out what works for you. Create a journal including what you ate, your activity level, what your blood glucose numbers are, how much insulin you use for each meal, etc. This will allow you to look back, look for patterns, and know what your body does for certain meals/workouts/stressors/hormones.
You are not alone.
Just because you have something that other people don’t have to deal with, you are not less than any other person. You can do anything and everything else that other people can. The people around you may not have or understand type 1 diabetes, but there is a whole community of people that share the same feelings, stories, frustrations as you! You are not alone in this battle.
“What does’t kill you, makes you stronger.”
This quote literally speaks the exact truth that I have found through my diagnosis. Type 1 unexpectedly makes you a hundred times stronger than you would ever think you could be. It tests you and pushes you, but it makes you see the true strong person that you truly are.
Keep in touch with your body.
Daily duties of pricking your finger, carb counting, injections, and constant mental ‘check-ins,’ really heighten your sense of self-awareness. One of the things I have learned through my diagnoses is that I am more in tuned with what my body needs, how it reacts with certain foods/workouts/time of the month/ stress/ weather, how I feel when my numbers are high and low. All these feelings make you closer to your body and create this relationship that is very important to have in keeping you safe and healthy.