Tag Archives: DOC

Message #Dblogweek

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.

 

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19 years

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.

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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.

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.

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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.

Of age

Today my diabetes is 18 years old.

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I choose to celebrate my “diaversary”, not so much to celebrate the diabetes itself but to recognise the effort I have made over the last 18 years to keep myself healthy and complication free.

I also choose to celebrate the things I have acheived in the last 18 years despite the challenges diabetes can add along the way.

Here are a few of the most significant to me:

Just a few months after diagnosis I moved to Northern Ireland (from Canada) on a university exchange program. I met my (French) husband while I was there. I cannot imagine how different my life would be now if had let a new diabetes diagnosis stop me from travelling, living abroad and negotiating a new health care system. (Turns out there was hardly any negotiating to do. The NHS is an amazing thing!)

Only a week after getting back home to Canada, I was officially diagnosed with Celiac Disease. So began a new chapter of learning to live with a(nother) chronic condition. I put diabetes aside and let the steep gluten-free learning curve sweep me away for a while. But I managed to come back from that and figured out how to manage both.

A few years later, after finishing school, a certain frenchman was feeling very far away and I took the plunge again to move across the ocean. I learned that the french health care system is very comprehensive but much more of an administrative headache to get into! Let’s just say that I was happy to have brought 6 months of diabetes supplies with me and have the support of a native.

During those few years between Ireland and moving to France, I had taken up running again and got myself an insulin pump to help deal with changing insulin needs during and after exercise.  When I ran my first 5 k race after getting my pump, I never dreamed that I would be training for a marathon a few years later. But train I did (both for the distance and managing the blood glucose levels) and not only did I run the Paris marathon but both started and finished the race with in-range blood sugars.

Over the following few years, my sights were set on a different type of marathon. I had known from the beginning that pregnancy would pose certain challenges, but I thank my endocrinologist at diagnosis for not making it into something insurmountable or dangerous. I lurked for years on a diabetes and pregnancy forum online before even deciding with my husband that we’d like to start a family. But with the support of my husband, my medical team and this amazing group of women I had only every met virtually, I had two very healthy pregnancies and today I have two daughters who make every diabetes effort during pregnancy worth it a thousand times over.

But after those years with BGLs in very tight range, I suddenly had very different priorities. Diabetes wasn’t the only one needing attention and it got very easily pushed aside for more important things like changing diapers, kissing skinned knees, reading the hungry little caterpillar, and playing in the sandbox. Oh, sure, I put healthy meals on the table 3 times a day for my family, but take the time to test my blood sugar or take a bolus? I found myself in some pretty serious diabetes burnout. But again, I turned to the support of the DOC where people actually “get it”. Where others are working on balancing diabetes and motherhood and full time employment and travel and the rest of what life has to offer.

I knew quite quickly after diagnosis that I did not want do this on my own and that I needed to surround myself with others who really understood. I credit the diabetes online community as well as my network of local D-peeps for helping me through many of the tough times so that I can actually “celebrate” this diaversary.

So here is to 18 years of living (mostly) well with type 1 diabetes…

Diabetes, you are officially an adult now. Do you think you could start acting like one? (What? A girl can dream, can’t she??)