Category Archives: Diabetes

Language and Diabetes #DblogWeek

Day 3 of #dblogweek2016 has a very important topic : The language we use when talking about diabetes and those who live with it:

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

I am very particular about the language I use when referring to diabetes or the people who have been diagnosed with it. Start with the word that will likely get the most attention today, to me diabetic is an adjective to describe a disease, not to describe a person (who is not, by definition, a disease). It is not a noun. I expect to see a scientific paper confirming that with better insulins and access to treatment, diabetic retinopathy is on the decline. I don’t expect to tick (or want to accept) a box on my insurance or driver’s licence form that categorises me as diabetic.

It is not that I’m offended when people use the term diabetic. And I certainly don’t judge others for preferring it or simply having no opinion on the matter. People are free use whatever words they want to describe themselves. However, for me, it’s about seeing people with diabetes as individuals not as a collective statistic. It’s about reducing stigma on a disease which already carries far too much of it.

I feel judged enough as it is without testing my blood sugar to find out it’s bad and that I can’t control my diabetes. I am never high or low.
But even when I manage my diabetes to the best of my ability, my blood glucose levels are sure to be outside of my target ranges at some point on most days.

I also don’t want to be told that I suffer from diabetes. Yes, diabetes makes me suffer at times, but certainly not all the time. Besides, how on earth can someone other than me decide if I am suffering or not?? And don’t even talk to me about non-compliance, which implies fault on the part of the individual if expected or desired results are not systematically obtained. I could go on and on, but I’ll get off my little soapbox now.

What I hope for in using less stigmatising and more person-centered language is support in dealing with this difficult and frustrating disease that nobody ever choses. Using language that underlines difficulty, guilt and helplessness will neither help to raise awareness about diabetes nor support people who live with it.

If health care professionals, insurance companies and media were reminded that we are, indeed, individual people who have different backgrounds, preferences, views, hopes and experiences then we each might feel more empowered and capable of dealing with the crap that this disease throws at us. Ultimately I believe that the language we use can improve our health and wellbeing.

Message #Dblogweek

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Eek! It’s #dblog week2016!! I haven’t written 5 blog posts in the last 5 months an now I have committed to 5 in a week! But there are some excellent topics this week so here goes…

If you don’t know about #dblog week, check it out here. There are many many bloggers signed up and there will be a boatload of amazing posts to read over the course of the week.

Here is the first prompt this week:
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

I am here for many reasons but the main one can be summed up in one word: connection. My desire to connect with others living with diabetes goes all the way back to my diagnosis. My dad’s brother has been living with type 1 diabetes since 1960. In march 1997, as I lay in the intensive care unit the day after my diagnosis, slowly coming out of DKA, he came to visit. In just one look from him, I understood both how sorry he was that I also had to live with with this for the rest of my life but also how relieved he felt that now someone else actually understood how he feels.

It literally took that one look from my uncle to know that I didn’t have to do this alone and that it would indeed be harder without others who truly understood. I started looking to connect with others relatively quickly. It did help that the internet already existed although there was very little in the way of valuable information about actually living well with diabetes at the time. The first message boards and forums were starting to appear too so at least there were ways of finding others to converse with.

Over the last 19 years, true to this desire to connect with others, I’ve been both member and founder of local support groups, and have frequented a lot of on-line diabetes spaces for both diabetes and celiac disease. And as in life, each chronic illness took turns in which got more on-line time. But once the main learning curve of celiac was covered, I’ve definitely been more actively involved in diabetes related support on-line and off. The online forum that became my diabetes “home” on the internet for many years was the Diabetic Mommy forum. Many of the women I met there have become real friends, whether or not I have met them in real life.

A particularly bad bout of diabetes burnout hit me when my second daughter was about 12-18 months old. It was after several years of trying to maintain pregnancy blood glucose levels and by that point I was busy with raising my family and going back to work and I had less time to take care of my diabetes, let alone talk to others about it. When my A1c came back about 2% over what I wanted it to be, I realised that I needed to take action and for me, that was re-connecting actively with my D-family (OK, and also actually checking my BG levels, but honestly, chatting with others helped me check my blood sugar!).

So I started actively participating in tweetchats, not just passively reading them the next day. And although I had been an avid blog-reader for years, I started to reply to some blog posts and connect with the blogging community. The whole rise in blogging had passed me by since I had exactly what I needed in support at the time – around diabetes and pregnancy. I love the learning and the “me too” feeling that came with reading of tweets and blog posts, but I knew from experience that contributing to those conversations was just as important to me on both and emotional and a diabetes management perspective.

The more I connect with other people with diabetes, whether through direct twitter conversations, through reading blogs, through participating in Facebook groups… the better I feel and the better my diabetes behaves. Not to say there aren’t ups and downs (obviously), but I guess what I’m saying is that the connections I have made by being active in this community have helped make living with diabetes a little easier to deal with. So I’m here to find support and hopefully to give some as well through sharing my story and connecting with others.

Choice

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I have been watching and reading as the United Healthcare / Medtronic story has unfolded in the US this past week. While I am following from the relative safety of a European health care system where deals like this cannot happen, I realise that all people with diabetes are potentially impacted by this deal.

This is not the first time I have witnessed Medtronic muscle its way into losing less market share. I remember the shock of Smith Medical’s announcement in March 2009 that they were withdrawing the Cozmo pump from the market and leaving the insulin pump business altogether. It made no sense to me that the most advanced and most “personalizable” pump on the market was disappearing. That is, until the story came out that Medtronic had essentially sued them out of business for patent infringement.

The details of the law suit are unknown to me but I do know that competition from smaller companies improves everyone’s products. The people who should benefit from advancements in these devices are first and foremost the users, not just company shareholders. If an insurance company or medical device company’s first priority isn’t improving patients’ health and quality of life, they are doing it wrong!!

I was lucky enough to have the choice to stick with my Cozmo long after it was pulled from the market because of the way pumps are provided to patients in France. And stick with it I did, because the other pumps I could choose from did not meet my needs in the same way that Cozmo did. For many years there have only been 3 pumps on the market in France but suddenly (as of last month) there are 3 new ones to choose from. In order to choose a pump that actually fits my needs, I have chosen, with the support and encouragement of my endocrinologist, to try out all three of them.

As I have said, I am privileged to live in a country where I have choice in the devices I use to manage my diabetes. That choice should not be dictated by deals that inflate bottom lines for payers and manufacturers. It should be (and for me, thankfully, is) between me and my health care provider.

There are some really exciting developments in diabetes devices that should be hitting the market over the next few years. Most of these are from smaller, as of yet non-profitable companies. If the 800 pound gorilla comes and squashes the smaller, more nimble initiatives, it’s people with diabetes globally who lose out, not only those unlucky enough to have an insurance company who doesn’t believe in providing their customers with a range products to fit their individual needs.

#mypumpmychoice

#diabetesaccessmatters

Le Conte de trois pompes (préambule)

19 years

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My blog has been dormant for a number of months. This is partly due to non-diabetes related ill health. As anyone with diabetes knows, physical stress can make blood sugar management extra challenging. Being Real People Sick means not only dealing with the symptoms of whatever is ailing you, but also often means chasing BG levels because any sense of pattern that might have existed is completely gone. Sometimes it can take a while for things to get back on an even keel, diabetes-wise, even once you feel physically better.

This was true for me when I first got sick at the beginning of the year. I had no appetite but was still chasing highs that were not carbohydrate related. I was wearing my CGM, and doing lots of finger sticks on top of that. When my GP asked me the ever-awkward question of “how is your diabetes through all this?” My answer was a meaningless “fine, I guess” because I was testing and correcting as necessary so although it required more effort than usual, I wasn’t particularly concerned about it either.

Fast forward almost 3 months and unfortunately I’m still not well. I’ve spent a lot of time in drs offices and having tests done. I’ve had one diagnosis, which may or may not have resolved itself, but still have symptoms that as of yet have no known cause. Is it related to my celiac disease? To my diabetes? Some other autoimmune disease? Something else entirely? Mostly I’m in a lot of pain in my chest and abdomen. Pain is not good for blood sugars. It isn’t good for patience either. And as it has become chronic and I’ve become tired of dealing with it, I’m definitely less on top of the “testing and correcting” than I was as well. I’m tired of not feeling well. I’m tired of not knowing why I don’t feel well.

I’m tired of not being able to do be active because as soon as my heart works harder my insides hurt. That has made a difference in my insulin sensitivity of course too. Between sensitivity changes and physical and emotional stresses I need some major re-calculation of basal rates and insulin to carb ratios. But I’m putting a lot of energy into non-diabetes health for a change and there doesn’t seem to be much energy left to take care of D-management on top of that.

It wasn’t until last night’s #GBDOC tweetchat on blood glucose logging that I realised how much I had slipped on being on top of my diabetes management. I rarely actually log my finger stick BGs but I do usually make an effort to download dexcom data every 2 weeks or so to keep a tab on things and make any necessary adjustments or see where I need to pay closer attention. But last night I checked and my last download was the end of January.

Once again, I am reminded of the powerful force of the diabetes online community. Talking with other PWD, other people who get it, can make the difference between knowing that I’m not doing all that I am capable of at the moment, to realising that I can actually take action and begin to turn things around. There were no specific pep-talks but just being able to share experiences and feel the connection and automatic understanding gave me a huge boost last night.

Today marks 19 years of living with diabetes for me.

Some years I have celebrated how healthy I am despite (and perhaps even in some ways thanks to) diabetes. Other years I just mark the day in some small way.

champagne

This year I’m acknowledging both the health and the diabetes burnout that has crept up in these last 3 months. I’m also acknowledging that the difficulty in managing my blood sugar lately is not just because of burnout but also because of physical illness. In other words, the stubborn highs that make insulin seem like water are not.my.fault.

Actively participating in the #DOC has helped me through some rough patches before. Tweetchats and blogging are perhaps just what the doctor should order. In only 24 hours, a tweetchat, a dexcom download, a diaversary and a blog post later, I’m definitely feeling better about being more engaged in my own diabetes. I will try to keep this up tomorrow. 19 years later, one day at a time.

Diabetes and security

Nouvelles d’Abbott sur le Freestyle Libre

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L’année dernière j’ai pu participer à un essai d’un mois du lecteur flash Freestyle Libre. J’ai trouvé le système fiable, simple d’utilisation, et éclairant en ce qui concerne les tendances des glycémies au quotidien (pour ne pas parler des bout de doigts contents d’être mois piqués !). De plus, l’achat du système est relativement abordable, surtout comparé aux lecteurs de glucose en continue avec émetteur (CGM).

Même si je n’utilise pas le dispositif au quotidien aujourd’hui, j’ai gardé le contact avec Abbott, qui vient d’annoncer des nouveautés à propos du Freestyle Libre. J’avais entendu parler de ces nouvelles en juin dernier lors de ma participation à DX Berlin. Maintenant j’ai plus de détails et j’ai enfin le droit de les partager avec vous !

Une application smart phone, le “Libre Link” a été développé pour permettre de scanner le capteur Freestyle Libre directement AVEC LE SMART PHONE !! Vous avez bien lu, il n’y aura plus besoin d’utiliser le lecteur qui est fourni aujourd’hui avec le kit de démarrage. Et les données qui sont analysables actuellement sur application web seront directement sur l’application du téléphone. Abbott a travaillé en partenariat avec Air Strip Technologies et Newuy Inc. sur le développement de ce dispositif, qui est l’unique application qui est approuvé pour utilisation avec les capteurs Freestyle Libre.

Mais (forcément il y a un “mais”), voici quelques précisions sur le dispositif…

Dans un premier temps, cette application sera disponible uniquement sur téléphone androïde. Le Freestyle Libre utilise la technologie NFC (Near Field Communication) pour transmettre les donnés du capteur. Les téléphones androïdes permettent cette utilisation alors que c’est plus compliqué pour l’instant sur iPhone. Tout de même, le développeur de l’appli travail sur la version iOS et il y aura surement plus de précisions à ce sujet en 2016.

Et en parlant de calendrier… il va falloir être patient. L’application sortira dans un premier temps (dans quelques jours !) en Suède, pays qui représente actuellement le plus grand marché du Freestyle Libre. La sortie dans d’autres pays européens où le Libre est déjà commercialisé, dont la France, sera pour “le premier semestre 2016”. Il y a, en effet, une procédure de validation de tout dispositif médical par les autorités compétentes dans chaque pays. Cette appli rentre dans cette catégorie donc a besoin d’autorisation avant d’être lancé.

Sachant qu’en France il y a une longue liste d’attente même pour accéder à l’achat du Freestyle Libre, vous en avez peut-être marre d’attendre, non ? Et voilà, sur ce point il y a également des nouvelles. La capacité de production du capteur sera nettement amélioré début janvier 2016. A partir de là, les personnes actuellement en liste d’attente seront approvisionnées. Et Abbott me dit qu’à partir de février il n’y aura plus de liste d’attente du tout.

J’espérais avoir au moins une photo de l’application à partager avec vous mais pour l’instant je ne l’ai pas. On devrait pouvoir en trouver sur les réseau sociaux à partir de la semaine prochaine avec les Suédois qui vont commencer à l’utiliser. Je l’ajouterai à ce billet de blog dès que possible.

L’autre grande question en attente par rapport au Freestyle Libre est évidemment son remboursement. Là aussi, la patience s’impose. La semaine dernière à une conférence à Paris, c’était un des sujets débattu lors des échanges avec la salle. Le DG de la Division Diabète de Abbott France à répondu à des questions à ce sujet.

La procédure de demande de remboursement pour les dispositifs médicaux est rigoureuse et longue. Les études scientifiques sont en cours de finalisation pour pouvoir présenter le dossier au complet à la Haute Autorité de Santé. La Fédération Française des Diabétiques (AFD) est également en train de réaliser une étude portant sur la qualité de vie des patients qui utilisent le Libre, pour appuyer le dossier de demande de remboursement. Car comme on le sait, l’importance de cette technologie n’est pas uniquement une question de baisser l’HbA1c, mais bien de se porter mieux au quotidien et sur le long terme.

Donc, pas besoin de faire des pétitions à madame la Ministre de la Santé. Abbott est obligé de suivre les procédures comme tout le monde et on ne peut qu’espérer des bonnes nouvelles l’année prochaine. Personnellement, d’habitude je suis une personne très optimiste, mais quand il s’agit de calendriers d’autorités sanitaire je reste prudente. Si ce dossier avance en 2017 je vais le considérer comme une victoire.

Dès que j’ai d’autres nouvelles sur ces sujets, je ne manquerai pas de vous les transmettre.

Does that measure your glucose level?

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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.

Low

DX Berlin – Forum d’échanges sur le diabète

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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.

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 !

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.

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.

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.

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!)

Living with Diabetes and Celiac Disease

Life, with a couple of chronic diseases thrown into the mix

Category Archives: Diabetes

Language and Diabetes #DblogWeek

Choice

Le Conte de trois pompes (préambule)

19 years

Diabetes and security

Nouvelles d’Abbott sur le Freestyle Libre

Does that measure your glucose level?

Low

DX Berlin – Forum d’échanges sur le diabète