Chapter 1 - My diagnosis 

 

 


Hi treasured reader!

If you're reading this, it may be because you've typed into your Google search something about diabetes. Or you are just a supportive family member (Hi, Mum! Hi, Dad!). This blog is essentially about type 1 diabetes, because, well that's the one I got. 

I have been thinking of sharing my story for quite some time. And I've been pushing it back to later for far too long. Always a good excuse. "I really want to do this right." "It's not ready for the public yet." "I'm still perfecting it." The truth is, it won't be perfect. Because life is not perfect. My life isn't anyways.  

Why do I want to share my story in the first place? Because I want to make sure that all the little obstacles I've had to overcome can be of some help to other people in my situation. And I have been in multiple situations. I have learned from them, and I wish others could too.  

So here goes... 

I am a 25 year old woman. I have graduated high school. I have graduated college. I am ready to start the next chapter of my life. I am young, I have the rest of my life in front of me. I have ambitions and dreams, dirty habits and fun obsessions, friends, family. Life. But as young as I am, I have been in ICU so many times already. I was minutes away from cardiac arrest at 21. I have lost feelings in my legs. I am slowly losing my eyesight...  

But read on, this is not the story of my failures, nor is it a "I know better" testimony. It is  the story of getting knocked down to the ground, losing faith, almost giving up. Almost, but never really. It is the story of learning from those times and standing tall again. Because I don't know what's waiting for me tomorrow. But I am ready. I am so ready. 

Let's start at the beginning, shall we? 

In summer 2003 (I was almost 11 then), my parents and some friends of the family with kids around our ages decided to rent a house in Arles (a lovely town in the south of France). And that's where we spent the 2003 heatwave that led to the hottest summer on record in Europe since at least 1540 and the European death toll was more than 70,000 (dropping some knowledge on you, boom!). I had the time of my life that summer. We had a pool at the house, we visited beautiful historic places, we saw wild horses run on the Camargue beaches, we saw corridas (which broke my heart because even though the matadores' costumes and their dance with the bulls were incredibly beautiful, they ended up killing them and I could not appreciate that part - sorry, not sorry).

During that summer, we all suffered from the heat. But it was the holidays so, spending hours in the pool, sipping fruit juices or licking our dripping ice-creams was a win-win. I especially remember the nights. I would soak my covers in cold water just to be able to fall asleep. I was constantly thirsty, even at night, when I'd wake up numerous times to drink and pee. But we all were thirsty. So it was not surprising that we were always drinking refreshments. And If I wasn't drinking water, it was fruit juice. Sometimes, even sodas. Sugar. Which in retrospective, WAS PROBABLY NOT A GREAT IDEA.

Anyways, on our way back home to Paris, a seven-ish hour long trip by car, I was asking to have a toilet break almost every half hour. After so many times, my parents were on the edge. We still had a long way to go. They thought maybe I was acting out and doing it on purpose! Almost arrived to Paris, I woke up and felt that dreaded pressure on my bladder yet again. But I could recognize my city. We were really close, I had to hold it just a little bit longer. I refused to ask to stop, not again, and especially so close to our goal! So I stayed quiet and held it in, danced on my seat, kept focused on anything but my full bladder. It became painful, but still I stayed quiet. When we finally arrived home, I'm pretty sure, I didn't even offered to help the parents unload the car, I just sprinted to the toilet. We didn’t know it at the time but these were strong symptoms of hyperglycemia (when your blood glucose is higher than usual). 

The next morning, mum was cutting my hair and I was standing back to her in the tub. At some point I felt very cold and I told her. She said she'd be done in a couple of minutes and then I could warm up in the water. But only a few seconds later, I turned around and complained this time about being very hot, I was actually sweating, my head was spinning and I felt exhausted and heavy from just standing. And she looked at my face, which she later described as being literally grey. She got frightened, made me sit in the tub, brought me some water... After a couple of minutes, I was feeling a bit better. These symptoms don’t describe hyperglycemia per se, but underweight and dehydration and exhaustion, which are consequences of untreated hyperglycemia.

Another episode happened later, maybe the next day. We had had a normal family dinner. I had been feeling a bit under the weather since the shower incident but I was starving so I ate my dinner, convinced I'd feel better afterwards. But at the time to go to bed, I still wasn't feeling good. I felt very hot and was short of breath, and my tummy felt like it was going to explode from overeating, when I actually had a normal balanced meal. After some time lying down awake, I couldn't hold it in any longer. I went straight to the toilets and threw up the dinner that I had been so happy to eat.

My mum kept her cool but she could see there was something wrong so she decided to take me to the doctor the following day. I was entering high-school that year, so she thought maybe I was stressed because I was about to enter the big school, or maybe I had contracted some virus. Nothing alarming. She never suspected diabetes because none of us knew anything about it. So on the Monday, she took me to our GP, Dr. JCG, a very competent family doctor in which we had complete confidence. In a short few weeks, I had lost a lot of weight, was always tired and pale, and those episodes that happened that weekend were definitely out of the ordinary... He didn't think twice. He smelt my breath, which he said smelt like ripe apples. He sent me to do some blood test for good measure, and told us to go to Necker ASAP. Thank God for him.

Only recently I was talking with a friend who told me that their brother was diagnosed with diabetes after 6 months of visits to diverse doctors, only to be told that nothing was wrong with him, he was probably just growing up... 6 months of untreated diabetes is disastrous. I will tell you more about that in another chapter. When I asked mum to proofread this article, she mentioned a friend of hers who is a hospital nurse. Her own child was diabetic and she didn't recognize the symptoms until the doctors told her, and then it all made sense. She had the knowledge. But she could not connect the dots by herself. This is just to show that it is no use hitting our heads on the wall saying "If only I had known". So what if we had known? Even if we were able to recognise the very first symptoms, it would already have been too late. As we don't know how and why diabetes happen, there would not have been a prevention. Feeling guilty over it will accomplish nothing. This kind of thinking is not only unhelpful, it is actually toxic. It is holding you back from accepting and adapting. What is done is done. You gotta play with the cards you’ve been delt. The sooner you accept it, the sooner you can work to live with it. And believe me, even with all my bumps in the road, I strongly believe that living with diabetes is not such a bad hand to be delt. There is no cure (yet) but we can treat it. I am not terminally ill. It's shit, but you can live with it. Anyways, it is thanks to our doctor's quick thinking that I was taken care of as fast as I needed.

Necker Hôpital des Enfants Malades (The Necker Hospital for Sick Children) is as its name indicates, a hospital for children. I was first introduced to its emergency department, after the visit to our GP. There, they read the notes from the GP, analyzed my blood and checked my vitals. When they finally left me alone, I went straight to the playing area, while my parents watched over me, anxiously waiting. Expecting the worst but hoping for a mistake. To me I had just been vomiting and was a bit tired, but I was sure I would be fine. I thought it was actually cool to be in the emergency department at the hospital (sorry, I was a kid). When all of this would be over, I could tell my adventures to my friends on our first day back to school. And then, one of the doctors came back, my parents called me over, we sat down and listened. I had been diagnosed with type 1 diabetes. They couldn't explained how I got it more than speculations. They asked us a few questions like did anybody in my family have diabetes? The answer was no, so we could rule out heredity. They also asked if I had been under stress recently. I understand why they had to ask this question. But it was probably the worst question they could have asked my parents. Because when asked this kind of questions, especially when it is about your child, you're going to dig deep and you will find something. My parents felt guilty, to this day they still do. My mum was about to quit her job because of the tensed environment there. Had she brought some of that tension and stress back home, and I had picked it up? My dad had broken his Achilles heel during our vacation. Did the fear of the accident traumatize me? What about high-school? Had I been actually fearing this new beginning? Could they have prepared me better for a smooth transition? And if it was none of these factors, they still had made me, and it was their fault I was suffering now. I am not saying I felt it was their fault in any way, but we had lengthy discussions about it all since then, and they admitted feeling responsible. It doesn't matter what I'll say to appease them, they'll always feel to blame for my diabetes. To me, this is silly. My body waged war upon itself. One of the doctor's theories is that my antibodies attacked my pancreas thinking that it was a microbe from milk or something. That's the theory I actually think is the more plausible. Just a case of mistaken identity. 

So now, my pancreas couldn't produce and release hormones such as insulin and glucagon, into my bloodstream. These hormones help control blood sugar levels. Now insulin is a real life saver. And (warning: more knowledge about to be dropped here) lucky for me, since 1922, insulin is manufactured and marketed after Leonard Thompson, a 14 year old boy with type 1 diabetes was given the first medical administration of insulin. Before then, patients with type 1 diabetes would be put onto starvation diets until they eventually died, giving them only a few months to live. So that gives me 95 years of trials, researches and discoveries to get where I am today.

That concludes my first chapter!

Thank you for reading, and see you in the next chapter!

- J