Category Archives: Diabetes

Does that measure your glucose level?

That was the question I heard as I picked out a salad for lunch at a supermarket near work. I turned around and a man was pointing at my arm. I was very surprised by the question. I sometimes get asked “What is that thing on your arm?”, but my Dexcom sensor is almost never identified by strangers for what it actually is.

When I first brought up the idea of trying a continuous glucose monitor to my endo, she dismissed it right away saying it was too expensive. I thought it was an odd comment, seeing as it was my money, but whatever. A few months later I was given the opportunity to try a Dexcom and once I tried it, I was hooked. It showed me all the information that I was missing between finger stick tests. It picked up patterns that I could never have found just using my meter. It allowed me to lower my HbA1c, while REDUCING the number of episodes of hypoglycemia. And since I have been able to get great mileage out of each sensor (I have worn them a month on average), my out of pocket costs, while still significant, are greatly reduced.

When I went back to the endo, she was happy to see the data I brought into my appointments as it allowed us to work together to tweak some basal rates. But she also predicted that I wouldn’t wear it in the summer as it isn’t very aesthetically pleasing sitting there on the back of my arm. As it turns out, I don’t care at all how it looks. I’m more interested in having the right tools to help me manage my diabetes.

So back to the man in the grocery store. I answered that indeed it was a CGM. He told me his girlfriend has type 1 and she is currently using the Freestyle Libre so he was interested in the differences. I explained that having tried them both, I ultimately chose to continue with my Dexcom for it’s alert/alarm capabilities. Scanning your arm to know your glucose level and trend is a vast improvement on pricking your finger, but having the receiver alert you to rapidly moving or unsafe levels even before you might feel symptoms or think to scan is even better.

We only chatted for a few minutes but he was very thankful for the explanations and opinions I had given him. I told him that his girlfriend could be in touch with me through the local Parisian office of the French Diabetes Association (where I’m a member of the board) if she had any questions or if she just wanted to connect with someone else who lives with diabetes.

I walked away from that conversation very happy that it doesn’t bother my to wear my diabetes on my sleeve (or sleeveless arm, as the case may be). Not only does it provide invaluable information for managing my blood glucose levels, but it also improves the probability of meeting other people with diabetes (or their significant others) in the wild.

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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

#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 – Cleaning it out

Already behind on my #dblogweek posts… Wednesday’s topic is (was!) “Cleaning it out”.

I live in a small apartment with my husband and 2 kids. I don’t have the luxury of taking up too much space with diabetes supplies.

One thing that helps me keep on top of the stash is that I pick up my insulin and test strips monthly from the pharmacy, so those are never over-flowing. Glucagon is only on my prescription about every 18 months and once replaced, my husband uses the expired one to show me that he remembers how. My pump supplies come by mail every 3 months. When I get my shipment, it’s a bit of a puzzle to store everything at first but changing my infusion set every other day at the moment means that they get used up quickly.

But I must purge somewhat regularly to be able to contain my D-supply stash to the plastic storage box beneath my bed. So I have taken this topic very literally as it has prompted me to clean it out. I threw out a full box of  manuals for meters I don’t use anymore and I threw out the box that my original Cozmo came in (back in 2003). I threw out bizarre free samples I had received over the years and kept just in case one day I’d have use for them. And I threw out some lancets that had been hanging around for more than a decade.

Dsupplieswm

I kept only essentials – well, essentials plus a dozen back up meters (for which I have no strips), a stupid number of old meter cases pump clips, pretty much every log book I have ever written in (which, considering 18 years of diabetes, is relatively few) and a healthy stash of Cozmo reservoirs since when those run out I may actually need to consider changing pumps!!

I’m glad to have things tidied up – so thanks for this topic suggestion!

#dblogweek 2015 – Keep it to yourself

The second topic of this #dblogweek is “keep it to yourself”.

Sometimes it’s hard to draw the line between what to share and what is best kept private. In general, off line and online, I share pretty openly about my diabetes – usually things that will help me and my own diabetes management or that I think could help others in the community. I don’t have hard & fast rules about what I won’t share publicly online but there is definitely an automatic filter on sharing some of my “deepest darkest” feelings or secrets – so much so that I’m not even sure I could articulate it here.

I have an introverted nature and for years I followed diabetes related blogs and twitter handles but preferred to share my own diabetes story in the relative private space of forums. But 3 years ago when my diabetes burnout had reached an ugly peak, reaching out to the more public diabetes online community and getting involved more actively played a huge part for me in finding balance.

But since I started sharing my diabetes story more publicly online, I have certainly learned about consequences of sharing. This hasn’t necessarily led me to “keep it all to myself” but I have had to work on how I deal with comments and judgements that can and do crop up and throw me a little off balance.

An example : Last September, I was fortunate enough to be able to try out the Freestyle Libre flash glucose monitoring system. I was excited to try it and excited to share my experiences in anticipation of this new technology hitting the European market. My first 24 hours on the Libre was a bit rough. Not because of the device, just because, well – diabetes.

RoughDayLibreDexwm

I hesitated to share this photo because of the actual graph but I was excited to show how well the Libre and Dexcom lines compared so I posted it on twitter.

The following day, someone posted my picture to a diabetes Facebook group as it was among the first on the internet comparing the two devices. At first I was amused to find my picture in a place I hadn’t put it. Then came the comment “Interesting diabetes management…”. I would have expected my doctor to be a little alarmed at that particular graph but I’ll admit that I wasn’t prepared to deal with the judgement from others who deal with diabetes every day.

As I said, that day was a hard one. I took less insulin than usual, set temp basal rates, did the same amount of activity as usual, ate more carbs than usual, including about 4 full-sized juice boxes and yet my blood sugar just kept dropping.

I don’t regret sharing the photo because it was exciting to be a part of the Libre trial and for me a big part of that was comparing it to the CGM technology that I already used. But this experience and a few other times where I have seen not-so-positive replies to things myself or others have shared in the online diabetes space have certainly taught me to be prepared for all possible reactions on what I decide not to keep to myself. It is therapeutic to share and make connections with others who “really get it” and it’s important for each of us to think about and find our personal threshold in terms of what we keep to ourselves and what we want to share.

One of the amazing things about the diabetes online community is that there are enough of us (with different levels of openness) that we can almost always find someone else who we can connect with. It is important however that we each remember to respect each other for sharing our stories rather than placing judgement on what is shared.