Writing for Lyfebulb


What's new?

Hi all!

I have some news!

I have written an article for the American company Lyfbulb. Click HERE to read my Lyfebulb article. Read on to know more about the company and my process for the article.

As most of you may understand, I have only recently started to write this blog. But I had the idea a while ago and slowly grew into it. I've had a rough few years between 2010 and 2014. The worst is over and I feel I've learned a lot. Maybe going through all the bad has made me be able to find and appreciate the good. 

I originally decided to write because I had always been writing (stories, diaries, thoughts) and I knew writing helps to heal, to see things clearly, to accept. And I thought "Well, since I am on a good path now, physically, maybe I can reflect on all that happened to me and heal emotionally too." I had to make sense of how and why, despite all the support I had, the knowledge of the consequences of my actions (or in this case inaction) and my natural "survivor" behavior did I let myself go down this dangerous path.

I am still searching for an answer and I am learning so much! But this time, I am not learning from mistakes. I am being proactive, I have this unquenchable thirst for knowledge, I am forever curious. I have reached out to so many people and they have affected me with their story, drive and resilience, as I have affected them with mine.

In August, a team of young biomedical engineers entered a competion with a new product for diabetes management. They contacted me to foolproof their presentation and advise on what a diabetic truly needs. I was there when they entered their project into the competition.

Other engineers have contacted me through my facebook page to ask for my opinion about their projects and listen to my experience.

This is incredibly rewarding and promising!

I've talked with diabetics from France and Australia, as well as America, about our experiences. 

And I am not done.

Karin Hehenberger has close to 20 years of experience in the life sciences sector, received her MD and PhD degrees ans did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Centre, Harvard Medical School. But she hasn't just studied the desease, she's lived it. Her journey through her own diabetes has led her to found her New York based company - Lyfebulb - whose mission is to bridge patient communities with industry, and providing a strong voice to people living with chronic disease (like T1D) by empowering patient entrepreneurs and ambassadors. They're funding transformative therapies and cures of diabetes, including immunology, regenerative medicine, devices and big data. Their goal is to build and hold a presence as a force in the diabetes community. Visit their website HERE.

The fantastic team at Lyfebulb asked me to write about what a day in the life of diabetic looks like. I chose a day in which I suffered from multiple hypos because it was a difficult day with diabetes. I don't want you to just understand how massively diabetes impacts our daily lives. I want you to understand what can drive a person - as a result of a day like the one I describe - to underdose (inject less than they are supposed to), therefore causing a hyper, which, in turn, damage internal organs. What can drive a person to ignore signs. To hide their disease. To hurt themselves. It's a whole domino effect, and by the time we fight back, the damage is most likely done. My whole blog is in fact my retracing my steps to find an explanation of how I came to do this or that. 

As always, thank you for your interest, your support, your kind words.

Read, like, share.

- J  

P.S.: Following, you can read the article I posted on the Lyfebulb site.


A day in the life of a type-1 diabetic

It’s already been established that Diabetes is a disease that we, who have it, cannot run away from. We have to deal with it and we have to maintain control non-stop. There is no taking a break from it.

I am 24 and have been diabetic since I was 11. I have been alive with diabetes longer than without, and yet, in my head, the “normal” life is the one I had before.

I am currently treating my diabetes with insulin pump therapy (the pump is a little machine that never leaves me – it constantly injects tiny little doses, known as basal, as well as some extra insulin when needed, for meals for example, known as bolus). I use a blood glucose monitor called FreeStyle Libre, which tests my blood via a sensor on my upper arm. With this machine, I do not need to prick my fingers to draw blood (although I still often do, as the sensor readings are often less accurate than the finger-pricking ones, unfortunately), and I can check the trend of the last eight hours, which is very helpful to understand where I am going and prevent a high or a low.

My diabetes and I have a love/hate relationship. I “love” it because it taught me how to be strong, independent and proud. But I hate it because as much as it gave me strength, it gave me weakness too. As much independence it gave, it brought me on my knees countless times, forcing me to seek support from my family. And no matter how proud I am of who I am today, it sometimes happens that I let my diabetes catch-up with me and I feel raw, deep shame. Shame for my own lack of control, or judgement, leading to a hypo or a hyper. Shame for my scars. Shame for my sensors adorning my body constantly. But despite this hate, I try to live my life with my diabetes, not against it. I try to wear it as a badge of honour, even if my will sometimes falter.

And then come the darkest times. No one is my friend and no one can understand. What a selfish way of seeing it… I have to snap out of it and remind myself that I am not a burden. We all have our battles to fight, it just so happens that mine is diabetes. But the support and love I get from my family and friends, I give back to them in their own battles (I hope so, at least).

Let me just give you an incentive of a normal day for me. I am about to write my Saturday as I lived it, but as some of you may not be familiar with some technical terms, here is a couple of lingo that might help you. When I talk about BG, I mean blood glucose or blood sugar. A low BG, or hypoglycaemia, is anything below 4.3mmol/L. Anything over 10mmol/L is a hyperglycaemia, or a high. As a diabetic, my blood glucose can go as low as 1.2mmol/L (personal lowest) and as high as 33mmol/L (again, not proud, but personal highest). When I talk about inject insulin, I write U, for units. Ok, still with me? Let's start the day:

8am – I wake up, just minutes before my alarm. I usually like waking up before my alarm. It gives me a sense of pride – a proof that my subconscious knows my routine, that I don’t need a machine to help me wake up, that I have slept the right amount of time. But today I do not feel pride. I cannot see clearly, everything is blurry and my eyes do not adapt to the sunlight as they should. Even before feeling anything else, I know what that means: I woke up with low sugars. And true enough, when I test my sugars, the little monitor makes an unhappy sound. It blinks my number: 2.8mmol/L and it displays the pattern of my last 8 hours of sleep. I have been down for 2 hours. And I have not felt it until now. That is worrying. I’ll have to mention it to my endocrinologist during our next appointment. But I shrug it off. The main focus right now is to treat the hypo. I reach for the candy beans I keep close to my bed, in case of emergency. While I wait for the sugar to reach my bloodstream, I mumble and grunt. This is no way to start a day. I feel weak, shaky, dizzy, my muscles ache, and I am irritable.

8:15am – Time for a check. But I am feeling somewhat better so I know I am going up. Beep-beep: 3.4mmol/L. Still low but I have to start moving. Work doesn’t wait. I gobble another couple of beans and start to freshen up and dress up. I usually shower at night, because I am not a morning person and I know I’d hit the snooze button way past shower time. It works out fine today as I just lost 15 minutes lying in bed waiting to feel a tiny bit better, let alone, go into a shower where I could slip and fall.

8:25am – It’s not been 15 minutes yet but I can’t wait. I hate running late. Beep-beep: 4.2mmol/L. That’s good enough. Like very often, I am not hungry in the morning, but this time I cannot skip breakfast. I take a slice of chocolate chip brioche out of the bag, quickly pour and drink a glass of orange juice, and leave the house, brioche in hand.

9:40am – I am at work, with time to spare. I did not miss my bus, nor my train, and it takes me only 12 min to arrive at work from the station. I ate my slice of brioche in the train, read a couple of chapters and even surfed my Facebook. I finally sit down at the back of the store, in which I work full-time. I have some 20 min to prepare for the day. I check my glucose again. I do not want to have a hypo in the middle of my shift, in front of my co-worker and customers, and I do not want to have a hyper either. I have not yet injected for the piece of brioche. I am not even sure I will need to. All depends on my sugars now. Hence the third check of the day. If I’m around 9 and it looks like I’m going high, I will need to have a bolus. But if not, then the brioche’s carbs will have helped me get out of the hypo. Beep-beep: 6.7mmol/L. Finally, a good number. Despite the bad beginning, I am now feeling relieved and ready to tackle my day.

10am – The doors are open, I let the customers in, and I note half-jokingly to myself that I should write about a day in a retail worker’s life too. We witness the weirdest things. That’d make a pretty funny article.

11:40am – I am so hungry. But I try and ignore my stomach, as well as my lovely co-worker who just brought some snacks from the store next door. It’s ok to give in and have a snack, but if I do, I have to figure out how much carbs I’m ingesting, and really, who wants to do maths before stuffing honey-roasted cashews down one’s throat? I’ll avoid the counter area until lunch time, meanwhile there’s plenty of stuff to do on the floor.

12:05pm – That’s it? Not even 30min have passed since I realised I was hungry… Today I will be the second one to go on break… With the breaks starting at 12:30pm and lasting 45 min, I’ll have mine at 1:15pm. Nope. I can’t wait that long. I disappear for a minute and go in the staff break-room. I reach into my bag and take my diabetes case out. I take the monitor to my arm and wait for the expected “beep-beep”. But not this time. This time it’s a “Beep-beep-beep” that’s ringing… It’s an alarm to remind me to change my sensor in 3 days. Great… Another $90 to cough up… I press ok, and the screen displays my glucose. 9.1mmol/L. I look into my Calorie King App to estimate the intake of carbs. [Serving size: 10 whole nuts – Total Carbs: 6g / serving]. Let’s assume I’ll eat about a hand-full, seems to me that’s about 30 nuts, makes 25g of carbs. I enter my blood glucose and my carbs intake in my pump and it does the rest of the work for me. It’s injecting 2.65U. 1.45U for the carbs and 1.2U to correct my BG, according to my own personal settings. Bless the genius minds of the scientists and medical engineers who have concocted this little gem of a machine. I press ok and feel the insulin being pushed under my skin in my belly. I hurry back on the floor. I don’t want the girls to think I’m giving myself a break at the back. That took about 5 min and even though they never complain or even seem to notice my little disappearances, I try minimising them as much as possible because I feel it’s unfair for them. I am back, and can now enjoy those hard-earned cashews.

1:15pm – My co-worker has come back from her break and it is now my turn. I hurry to the break- room, wave my machine to my arm, check the number (7.3mmol/L – perfect), take my wallet and go buy a nice, warm lunch in the food court. I opt on the spicy pumpkin soup with toast that’s smelling so good from their counter. When I bring my own lunch, that I cooked myself, I know the estimate number of carbs. Or when I buy ready-to-eat meals (yes, I do eat those too, I am not perfect), I just need to look at the nutrition info label. But today, I ask the girl who serves me if she knows what the carbs count is. She stares at me with blank eyes, then grunts and shrugs. I think I might've broken her... A couple of years ago, I would feel the urge to explain my odd question. But now, I don’t care what she thinks. I take my phone out and look the information up onto the same App as before. 1 cup of soup is 16g of carbs. The soup is a big portion, I’d say 2 cups, that makes 32g. 1 slice of white bread (is my bread white or wheat? Does that make a difference? I wave it off, if there is a difference, surely it won’t be a big one) is 10g of carbs. That makes a meal of 42g of carbs. Again, I enter all this information into my pump and I’m all set. I sit down at a table and starts eating my lunch, while enjoying my book. After I am done with my meal, I set off to the break-room and look at the remaining time for my break. About 15 minutes. Good. I can relax and continue reading.

1:56pm – My break is almost over, I want to check my blood again. Yes, I know, again. Normally when I started a day with a hypo, you can be sure a hyper will follow, as a bouncing effect. This morning it hasn’t happened, so I’m cautious. And, you see, I am weary of hypos and hypers, especially in the workplace. I don’t know if it is just me, but I want to prove that my diabetes does not affect my abilities, and so I am extra vigilant. And also, it is not really pleasant to experience. Beep-beep: 8.7mmol/L. Nothing wrong going on here. I am ready to head back to work.

4pm – The store has been quite busy for the past few hours. Late Father’s Day shoppers is my guess. While most of the time, the customers are happy to wander in the aisles, browsing, today, we do not even have time to ask them if they need assistance, they go straight to us, with a very specific book in mind. A book that we then have to find the location of, if it is even in stock. As soon as I am done with one customer, another jumps in. I have been thirsty, so I fetch my bottle, and even though I would like to check my blood again, I hear a bell at the counter, which means I am needed there. I hurry back, sipping my water while making my way to the front of the store. My sugars will have to wait.

6:12pm – It is closing time. Finally. The girls and I are exhausted. The customers sometimes seem like leeches. They are in hurry, very demanding and feel entitled to pristine customer service, and they want it now. The day has been long and draining. I close up the store and head off to the station. I have a dinner with friends outside of town and I don’t want to be the last one arriving. While walking, I reach for my monitor and check my glucose: 14.6mmol/L. Uh-oh… that piece of bread did seem quite large and it was soaking in butter… Plus the stress of the day, I guess. But all that is guess-work. So uncertain. In defeat, I enter my blood glucose level into my pump and it tells me to inject, which I do. The train ride is about an hour, I will have hopefully gone down by then.

7:20pm – I’ve arrived at my friends' house and the first thing I do after kissing my friends hello and offering my help, is to check again: 10.2mmol/L. Going down, good. If it hadn’t, then I would have had to check my insulin line, maybe even change it… Not what you want to do during a friend’s dinner party. I enjoy the appetizers, wine and conversation, keeping track of what I put in my mouth. I will need to remember everything for the meal bolus, when the rest of the guests have arrived and the food is done cooking. I play with their son, a 4-year-old bundle of joy. As we play, he notices my line, and tries tugging on it. “What’s that?” I try and explain to him that I am sick and this is my medication. He looks at me, dubious. “No you’re not!” Again, I try to explain that I am sick inside of my tummy, and I show him where the line goes in. I want him to know that there is nothing to fear. Kids are very observant and they are smarter than we give them credit for. If I explain to him, He will get it, even if not in details. But if I try to hide my tummy, and change the subject, he will remember. That will shape his future behavior towards illnesses. Very delicately, I let him touch the pump and the cannula site. And then I let him wave my monitor to my arm to test my blood. “I am your doctor!” He exclaims happily. The moment has past. The mum is proud of her son’s reaction. I am proud of mine.

9pm – I start feeling weak… The food has just been taken out of the oven. We are a bunch of Europeans and Brazilians, we eat late, sue us. Which would have been fine, if I had not assumed they would want to eat early to accommodate their boy’s schedule. But I did, and I pressed OK for the bolus to correct my previous hyper. I wanted to take a proactive approach and think ahead, but it backfired on me. Now, I test my blood: 3.4 mmol/L. I have to drink sugar and water, while my friend looks on, worried and apologetic. I don’t want her to feel bad, so I smile and try as best as I can to reassure her. “I’m Ok” I mouth to her from across the table. I know that the next few moments are going to be critical, if I want to avoid doing what I call the yoyo effect, which is bouncing up and down (my blood sugars, not actually me) for the next, I don’t know… 12 hours? So I refill on sugar, and start eating my meal hoping it’ll make my glucose steadily go up, until it is safe for me to inject for the meal. The meal itself is pretty lean. Probably about 40g all in all, counting the puff pastry crust, the gravy and side of pasta. But after 10 minutes, I am still feeling weak and tired. I check my sugars and they are actually getting lower 3.0mmol/L. That’s when I get frustrated and worried. Why can’t I enjoy a nice dinner with friends? I almost want to just let myself stay on high next time. Wouldn’t that be easier? I mean, I don’t really feel the high so why do I even bother? Well, until it is too high, and I know deep down, that I don't want that either… I know that is a very dangerous road, one I went down before, and one I do not want to venture ever again. I drink my sugary water. I know I look pale and I am very quiet, and my eye socket are grey and I look like a ghost of myself. Only a few minutes ago, I was talking and laughing with the rest of the party. Now I have grown silent and focused the little bit of energuy I have left on myself. My friends' friends are starting to stare. But I do not want to deal with the stares right now. I ignore the stares. After a few more minutes, I finally feel better. Even if my body hasn’t moved from that chair, it feels like I am sitting down at the table after vanishing somewhere. I join the conversation again, laugh at jokes (weakly at first but then with my usual gusto), and happily sip my wine. All is forgotten. All is good.

12:30pm – Most of the guests have gone home. My brother has had some wine too and doesn’t want to drive home. He will be sleeping over. I try to decide if I should too. I don’t drive and I usually don’t mind the train… But it is Saturday night and I don’t want to spend an hour to get home, in a train smelling of alcohol, sweat and urine. Our friends have a spare bedroom for me too, so I decide I’ll sleep over as well, even if I was craving sleeping in my own bed tonight. Tonight, was not a wild night but I did have some wine and the alcohol does bring my sugars down. So, guess what, I test myself again. Beep-beep: 11.3mmol/L. That is probably the after-effect of my dinner hypo. I decide not to inject, because I fear to go down again because of the alcohol. I’m hoping by tomorrow, I’ll have come down on my own (and of course thanks to my pump injecting my basal overnight). I am tired and a bit frustrated too. I don’t want to spend one more minute of my night thinking about my diabetes. Obviously, I make mistakes whether I over-think it or not. I keep my bag close to the bed. In there I have my phone, my monitor and a pack of candy beans – in case of an unwelcome overnight hypo. It’s sleep time now. We will see. Tomorrow is another day…

Thank you for reading,

-J


Dr. Karin Hehenberger - Empowering the patients in giving them a  voice

Watch Dr Hehenberger explain how this issue is affecting all of us, not just the actual diabetics, but also the society in general. She draws our attention on the importance of patient engagement, firstly in their own diabetes, but also in sharing with the community and being able to bring experience to the table too.