Low

Slow motion

Fuzziness

Sounds, too sharp, annoy me

Please stop breathing so loudly

Maximum concentration to make the neurons talk to each other

I know I am low

But moving from my chair is impossible

Thank you for the orange juice

DX Berlin – Forum d’échanges sur le diabète

DXBerlin

Début juin, j’ai eu la chance d’être invitée à Berlin par Abbott (vous savez, les fabricants du lecteur Freestyle Libre, entre autres) pour passer le weekend avec un groupe de bloggeurs européens. Vous pouvez revisiter les tweets du weekend via le hashtag #DXBerlin. Les opportunités du week-end étaient multiples :

  • “réseauter” avec d’autres personnes atteintes de diabète
  • comparer nos expériences dans nos pays respectifs
  • explorer notre utilisation des réseaux sociaux
  • parler de notre quotidien avec la maladie et notre contact avec d’autres personnes atteintes, soit sur la toile soit en face à face
  • rencontrer les équipes de chez Abbott qui sont en contact avec les utilisateurs

Le weekend était un bon mélange de temps social et temps d’apprentissages. Le vendredi soir en arrivant, on était emmenés direct dans un bistrot pour l’apéritif suivi de burgers (ou salade et burgers sans pain pour les sans-gluten parmi nous). J’étais ravie de retrouver des bloggeurs déjà rencontrés lors d’autres évènements : Jen, Ilke & Finn, Matthijs, Sacha & Bastian et d’en rencontrer d’autres pour la première fois : Laura, Mel, Kris, Daniela, Sue, Francesca, Sarah, Linda, Hein, Patricia, Antje, Guillaume, Marcel, Oscar, Manuela et Sophia.

(Si vous voulez consulter les blogs des autres participants à ce weekend, je recommande d’utiliser google translate. Ca ne donne pas une traduction exacte, mais ça permet de comprendre le gros du message. Je trouve toujours intéressant de voir ce qui se passe dans d’autres pays européens concernant la gestion et traitement du diabète.)

Le lendemain matin a commencé tôt avec un peu de sport. 4 personnes ont trouvé le courage pour se lever à 7h et aller courir dans les rues de Berlin. Un moment convivial et un bon moyen de visiter une ville que je ne connaissait pas.

BerlinRunwm

Les ateliers de la journée ont commencé dès 9h et la journée était remplie de présentations aussi diverses qu’intéressantes. Gemma nous a raconté l’histoire de la transformation de son blog, d’un hobby vers une carrière.

Ensuite Mary nous a parlé de l’utilisation d’instagram pour partager des photos et diversifier sa présence sur les réseaux sociaux. Nous avons également eu l’opportunité de jouer avec le tout-nouveau instagram-cam, une version très moderne du Polaroïd !

InstaCamwm

Bastian nous a présenté la communauté en-ligne du diabète en Allemagne (#DeDOC), qui s’est beaucoup développé au cours des 3 dernières années. Pour ceux qui connaissent #FrDOC, le tweetchat #DeDOC est basé sur les mêmes principes et se passe chaque mercredi à 21h. Au cours du week-end, j’ai discuté avec Bastian et Guillaume, un français qui vit à Berlin, sur les challenges dans l’animation des tweetchat #FrDOC. Avec leur soutien (et le votre, j’espère !), nous allons remettre en route le tweetchat à la rentrée et essayer de dynamiser les échanges en ligne de la communauté diabète en France.

En début d’après midi, nous avons écouté Maarten den Braber parler du “Quantified Self” – un concept pas si nouveau pour nous qui vivons avec le diabète depuis longtemps. Nous pouvons être considérés par certains comme les pionniers de ce mouvement, mais il est intéressant de voir les outils disponibles aujourd’hui et ceux en cours de développement pour suivre des indicateurs de santé.

Pour continuer sur la “quantified self”, Etai Granit nous a présenté son projet de BitBite qui analyse l’alimentation via la mastication. Un outil plus qu’impressionnant !

Nous avons même eu une présentation (via vidéo) de Claudio Pelisseni, un italien est en train de faire le tour du monde en 1000 jours, sans prendre un seul avion. Depuis son départ il y a un an, il a déjà parcouru 48 000 km et 16 pays.

Finalement, Sofia Larsson nous a présenté le concept et les vêtements de AnnaPS. Cette entreprise suédoise à été fondée par Anna, frustrée de ne pas avoir de moyens confortables pour porter sa pompe à insuline. Les vêtements sont fait de Tencel, “un tissu aussi respirable que la laine, aussi brillant que la soie et aussi doux que le coton”, nous dit Sofia. Pour avoir déjà acheté sur leur site, je peux témoigner du confort des vêtements !

A la fin de la journée, une partie du groupe est retournée à l’hôtel en vélo, ce qui nous a permis de visiter encore un peu et de voir une reconstruction d’une partie du mur de Berlin. Moment émouvant.

BerlinbybikeAndreawmBerlinbybikewmBerlinWallwm

Et puis le soir on a profité de l’ambiance berlinoise car le match de finale de la ligue des champions se jouait sur place. Nous avons fêté cela à Hofbräu Berlin où il y avait autant de supporteurs espagnols qu’italiens et un vrai esprit de fête pour tous.

BierHauswm        Ilke

Le dimanche matin, le week-end s’est terminé avec un brunch et l’occasion d’échanger avec l’équipe d’Abbott sur leurs produits, les processus de fabrication et l’utilisation des produits par nous, les personnes atteintes de diabète. Je remercie Abbott pour l’opportunité de participer à cet évènement. J’ai beaucoup appris et j’ai apprécié pouvoir échanger avec d’autres personnes engagées au sein des communautés diabète dans leurs pays respectifs.

DXBerlinGroup

Je suis rentrée avec une énergie nouvelle pour continuer mon engagement à la fois on-line et off-line en France. (La preuve, avec un billet de blog en français, le premier depuis plusieurs mois!)

Encounters of the diabetes kind

I just spent a couple of days in Oslo, Norway on a business trip. Things were very busy leading up to my trip and I hadn’t really paused to think about the fact that I was going to a city and country I had never been to before. Nor about the fact that I “know” a Norwegian. I put “know” in quotations as we hadn’t ever met in real life but had been conversing for years on an online diabetes forum.

When I finally got to my destination I thought about what I could do with the very few hours of free time I had before and after my meetings. It was only then that I contacted my Norwegian friend to ask if she actually lived in Oslo. She did, and as it turned out, she was free to meet up the following evening, just at the time that my meetings were ending.

We didn’t plan anything overly exciting but we sat for an hour and a half at Starbucks talking diabetes, of course, but not only. We talked about family, work, travel and bi-culturalism as if we had been close friends for years. But in reality, we haven’t been in close contact lately as the forum that brought us together originally was about diabetes and pregnancy and our respective kids are now between 9 and 4.5 years old. I love the power of the internet and social media, that we can so easily create a network of contacts and friends all over the world at a few clicks of a mouse or taps and swipes on a smartphone. But there is a different level of magic when those conversations and friendships are taken off-line.

On a completely different level, I had one more encounter with diabetes in the wild before I left the country. I was standing in line to go through security at the Oslo airport on my way home. As the queue snaked forward, there was a counter space that people could use to organize the things that need to be taken out of carry-on bags to go through the x-ray machine. I happened to glance up as I passed on the other side of this counter and saw a young woman putting a glucose meter and insulin pen in a clear plastic ziplock bag.

My first thought was -” that’s strange, I’ve never taken my diabetes paraphernalia out of my purse for airport security, unless asked”. The fact that I was looking at another girl with type 1 was only my second thought. I smiled at her and she looked a little bewildered. Not sure how much was her stress about travelling with diabetes and how much was the fact she had no idea I had diabetes and therefore why this strange woman in line was smiling at her. So I took my pump out of the pocket of my jeans and held it up to her.

I saw the recognition light go on in her head and she fired off some very rapid Norwegian about “no pump” – at least those were the only words I caught. Then the line moved on but I felt empowered by the mutual understanding of the stress of travelling with diabetes and that I wasn’t the only one in that line wondering if I would be pulled aside to be asked about my diabetes kit.

Oh, and if you are ever in Oslo, the Vigeland sculpture park is a must see. The sculptures and statues blew me away in the emotion that they conveyed. I only wish I had a better camera than my iPhone 4S to capture the beauty.

VigelandChildonBackwmVigelandOldLadieswm VigelandcouplewmVigelandWomanBabywm

Gluten free quarter pounder in Oslo!

I have had so many amazing experiences over the last 6 weeks that I want to write about but beyond the craziness of #dblog week, I simply haven’t had time to sit down and sift through everything. So I’m going to start with a quick post on something I never thought I would write about.

I’m currently in Oslo, Norway, to attend some meetings for work. I have my trusty Gluten Free Card app that explains celiac and the can’t-haves and can-haves of a gluten free diet in every language. I also know that most people in Norway speak close to perfect english and nordic countries in general are pretty aware of celiac disease and have a good offer of GF foods.

So I’ll admit that I didn’t do a whole lot of research about where I could eat before jumping on the plane. After arriving and finding my AirBnB apartment for the next two nights, I went off to wander around downtown. Eventually I found my way into a Starbucks to take advantage of some free wifi.

A few quick google searches came up with an all gluten free bakery that has closed its doors for good, and a couple of other places that were either already closed for the evening or a little too far out of my way to get to. Several websites also stated that it is fairly easy to eat gluten free in most restaurants – they get it.

But then I happened on a McDonald’s link. What was this doing on a page about GF eating? Well, as it turns out, all over McDonald’s Norway have gluten free buns for their burgers. The last time I had a meal chez MacDo (the french slang that I have gotten used to hearing) was almost 7 years ago and it was because there was no other possible choice. I was limited to salad and fries.

My CD diagnosis was 17 years ago and I think the last burger I had from McDonald’s was likely about 20 years ago. So even though I’ve never been a fan of this type of food, I decided to give it a go – just because I could. QuarterPounderwm The taste was exactly as I remembered it from 20ish years ago (which is a bit strange given the amount of time that has passed and that it was on a different continent), although I suspect the GF bun is actually better bread than the “normal” one. There. I’ve eaten it. Now I’m good to go for no more McD’s for another 20 years! And on my way back to my little apartment, I stopped by a supermarket to see what they have in their GF section. So I picked up these. It’s all super carb heavy, but I always like to bring a few things back that I can’t find at home… GFfindsinOslowm Travelling with celiac disease can sometimes be a bit nerve-wracking but on the flip side, it’s fun to make some new finds.

#dblogweek 2015 – Continuing Connections

Wow, the last day of #dlbogweek! (And I only missed one day!!). Today’s topic is about the connections that we make in the diabetes online community.

Ironically, perhaps, one of my favourite parts of making online connections in the DOC is when I actually then get to meet people face to face. I have been lucky enough over the years to meet a number of people “in real life” after having met them online through forums or blogs or tweetchats. But what is so important with the online space is that the possibilities of these connections is so much greater. It allows us to find and interact with people in the next town over or on the other side of the world who understand our own situation so intimately without ever setting eyes on each other.

As I said in my first #dblogweek post, this is my first time participating. I actually got a “happy anniversary” message from WordPress today because I created my blog immediately AFTER last year’s #dblogweek. I couldn’t take the pressure of starting a blog with 7 posts in 7 days, but after reading hundreds of posts that week, I finally took the leap and created this space.

But the difficult part for me this year was that with so much time composing posts, I didn’t actually spend a lot of time reading the posts of other participants. Next week will be a “part 2″ of #dblogweek for me. I’m really looking forward to getting caught up and reading what others have written on the same topics I have thought about during this time. The few posts that I did read, whether from blogs that I know and love or ones that I just discovered were further confirmation of how awesome this community is.

Thank you, Karen, for spearheading this project that facilitates further connections within the community.

#dblogweek 2015 – Favourites and Motivations

And for my second post of the day… to at least attempt to catch up on #dblogweek! The topic today is “Favourites and Motivations”. After only a year of blogging I had a hard time picking a favourite bit of my blog, so I’ll share with you some of my motivation for being here.

I have understood from the day of my diagnosis how important it would be to connect with other people with diabetes. It all started as I lay in the ICU with bruises up and down both arms from all the IVs and artery lines that the doctors had placed with difficulty, the night before. But I was already feeling better 18 hours after diagnosis and the symptoms of my DKA were clearing up quickly.  Only close family were allowed into intensive care but I was very glad to see my uncle, who had by then been living with type 1 for 37 years.

I saw his concern for me and his sadness that someone else in the family would have to live with diabetes from now on. But I also saw his relief at no longer being alone in this and felt a connection with him that we had never had before. I hadn’t been able to adequately describe to anyone until then exactly how horrible I had felt in DKA. How unbelievably dry my mouth was, for example. No, not like when you’re really thirsty, more like when there is no saliva left. At all. But I didn’t need to explain it to him. He knew. He had been there.

So it was never really a question in my mind. If I wanted to live well with this (and I did!), I knew that I had to find peers to share stories, to compare notes, to support and to be supported by.  I joined an online forum while I was away at university and when I got back to Toronto after a few years, I found a group of women through the local chapter of the Canadian Diabetes association who became my core support group for a number of years.

I continued to participate in a few online forums, especially the Delphi “Diabetic Mommy” group. That group has been a lifeline through preparing for pregnancy and dealing with diabetes through pregnancy and motherhood. I have met only a few women from that group in “real” life, but I consider a number of them to be good friends. I also was very active for a number of years on a Celiac disease forum. The learning curve is so insane when you first go gluten free, that I don’t know how anyone does it without some support online or off.

A few years later, as the first D-blogs started appearing, I became an avid reader. But I think what held me back at first from starting my own blog was that I don’t love to write. I knew could respond to forum posts with supportive and well-informed answers, but I think I was a little intimidated on some level to create my own content rather than responding to others. So for years I put it off. But I have come to realise that as a diabetes advocate, it is important to have a personal space on the web to be able to share ideas in a more open space than what you can find in a forum or Facebook group.

I still find it a little scary to put myself out there but knowing the support I have found and have been able to share over the years of connecting with other PWD, that is motivation enough to share my thoughts with all of you. Sharing my story certainly helps me deal with my own diabetes and celiac disease and if just one person finds comfort in what they read here, my effort is worth it. And that motivates me to continue.

CookedQuichewm

#dblogweek 2015 – Foods on Friday

Ok, now I’m officially really behind on #dblogweek. I have skipped the Changes prompt altogether, though I would like to come back to it. I am now just a day late on the “Foods on Friday” topic.

I actually had the intention of sharing my entire gastronomic day and taking pictures of everything I ate yesterday. However, if I ever have the occasion to show you my food logs on the mySugr app, you’ll see I’m not very good at remembering to take a pic before I dig in.

So I’ll share with you the culinary adventure I had today. We have a new organic and local farmers’ market just up our street each week. It’s quite small so farmers only bring what you have ordered in advance. This was our first week ordering and we opted for a “family vegetable basket”, not knowing exactly what would be in it but willing to give it a try. The box we brought home had a few kilos of potatoes, a big bunch of white carrots, some rhubarb, 2 gorgeous heads of lettuce and a huge amount of blette. “Blette?”, you ask. Well I had to look it up to know that it was silverbeet or chard in English. I’ve eaten it here in France at friend’s houses, but I had never cooked it myself.

WholeBletteswm

Anyway, my objective of the day was to prepare this silverbeet in a way that my children (who have never tasted it), might not completely reject it. I decided to add it to a quiche, in a similar way I sometimes do with spinach. Here is the (mostly) photographed recipe:

about 1kg (2.2 lbs) of silverbeet
1 onion
5 eggs
a couple of heaping spoonfuls of crème fraiche
a bit of milk
Some cubed or sliced ham or lardons
some grated cheese (Use whatever cheese you like. I used emmenthal but would have preferred to use conté, just didn’t have any in the house.)
grated parmesan to top it offCutBletteswm

Cut the stems off the silverbeet.

Wash both stems and leaves.

Slice the stems and steam them for about 5 minutes (I did this with about an inch of water in the bottom of the pot). Add the leaves and steam about 2 min more.ChoppedBletteswm

Drain the the silverbeets. Chop the onion and sauté in a large frying pan in some olive oil. Add the drained blettes and sauté as desired.

Roll out the pastry. I am fortunate to be able to buy gluten free frozen puff pastry dough, and grabbed one out of the freezer this morning to let it thaw gently in the fridge all day. Another way I sometimes make a gluten free quiche “crust” is just to use leftover brown basmati rice to cover the bottom of the quiche pan. That said, a lower carb version of this could be made with no crust at all. (Just be sure to butter the bottom of the pan!).

Hamwm

Have your favourite 4 year old cut up the ham. :)

Scatter the ham and grated cheese on the bottom of the pastry. In a bowl, mix the eggs, cream and milk.

Pour egg mixture over ham and cheese.QuicheBeforeCookingwm

Top with grated parmesan and bake for about 25 min at 210°C (400F).

Get your favourite 6 year old to set the table (with a little help from her dad to pour the wine).

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Enjoy with the whole family.

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