Tag Archives: advocacy

Diabetes and security

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Yesterday, after attending the IDEA Summit in Strasbourg where I moderated a panel discussion about empowering patients to become more involved in diabetes research initiatives (more about that in another post), I was waiting for my train back to Paris.

The train was a little delayed – apparently for technical issues and not security ones – and while I waited on the platform, I glanced a few times at my dexcom and watched my post-dinner blood glucose levels slowly rise. Given the timing and amount of my dinnertime bolus, I knew it was headed in the wrong direction. So I did what you do when you need to correct a slightly high blood sugar… I reached up under my winter jacket to where my pump was in a flipbelt on my waist.

Then I pulled out this little plastic box attached to what
looks like a wire that went back up under my clothes.

As I quickly pressed a few buttons on my pump, it suddenly occurred to me how this could look from the perspective of bystanders, not to mention the police teams that were patrolling the station. I glanced around and thankfully, nobody seemed to have noticed.

A few weeks ago, I wouldn’t have thought twice about pulling out my pump to take a bolus. But as you can imagine, security measures in France have been taken to a new level in the past few weeks and pulling out an electronic box that is concealed under clothing is definitely something that can cause suspicion. I don’t like to feel like I have to hide my diabetes. I’m definitely not ashamed of it but I also realise that there is a time and a place for diabetes pride.

In a surreal sort of way, daily life hasn’t really changed much since the attacks on Paris in November. And yet, the signs keep popping up that show how the events have affected us all.

So I’ll leave you with an image of hope and of light. This is the 4 storey tall tree at the Strasbourg Christmas market that I had the pleasure of looking at while eating my dinner before catching my train.

ChristmasTreeStrasbourg

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.

#dblogweek 2015 – Favourites and Motivations

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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.

Spare a Rose, Save a Child

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Déjà février ?! La saison des galettes est finie. Mes filles sont satisfaites car elles ont eu 2 fèves chacune sur 4 galettes mangées à la maison (2 sans gluten et 2 avec). Mes glycémies sont contentes car je n’ai plus à gérer les pics inévitables après chaque petit morceau de galette.

On arrive du coup dans la saison de la Saint Valentin. Mes filles sont contentes car nous allons faire des gâteaux en forme de coeur à la maison.  Pour la glycémie ça va – je sais mieux gérer le chocolat que la frangipane. Par contre, il n’y aura pas de bouquet de fleurs pour marquer l’occasion. Voici pourquoi :

Il y a un autre focus autour de la Saint Valentin en ce qui concerne le diabète.  Un groupe de blogueurs américains a élaboré la campagne “Spare a Rose, Save a Child” pour lever des fonds dans le but d’aider les enfants et les jeunes des pays ou l’accès à l’insuline est inadéquat. L’idée est simple : en offrant 11 roses au lieu de 12 le jour de la Saint Valentin et en faisant un don équivalent à la valeur de la dernière rose, on peut financer l’accès à l’insuline pendant un mois pour un enfant dans un pays en voie de développement. Remplacer le bouquet de roses en entier par un don est l’équivalent d’un an d’insuline pour un enfant qui en a besoin pour survivre.

Ces dons vont au programme “Life for a Child” de la Fédération internationale du diabète (FID), qui oeuvre dans des pays en voie de développement où l’accès à l’insuline, les matériaux pour tester sa glycémie et l’éducation ne sont pas accessible à tous.

Voici comment participer :

– Faire un Don
La campagne se déroule du 1er au 14 février. Vous pouvez donner en une fois ou établir un don mensuel sur l’année via prélèvement automatique.  Cliquez ici pour faire un don.

– Partager l’information sur la campagne
Parlez-en autour de vous. A vos proches et sur les réseaux sociaux. Au sein de la communauté diabète et en dehors. Cliquez ici pour plus d’informations sur la campagne “Spare a Rose Save a Child”.

Il est facile de se plaindre des chercheurs qui n’arrêtent pas de guérir le diabète des souris mais jamais des humains. Des progrès sur le pancréas bionique bien lent. De la sécu qui ne rembourse pas les lecteurs de glycémie en continu ni les lecteurs de glycémie flash. Mais nous avons de la chance de vivre en France, en Europe, dans des pays où on ne meurt pas à cause d’un manque d’information, d’éducation et surtout d’un manque d’accès à l’insuline qui rend la vie possible quand on a un diabète de type 1. Voici l’opportunité d’aider ceux qui n’ont pas la même chance que nous.