Tag Archives: diabetes

#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.

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Of age

Today my diabetes is 18 years old.

anniversary-cupcake_full

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??)

A pain in the diabetes

Last week, I developed a very sharp pain under my right foot. One day there was no pain or any reason to think there would be a pain developing. The next morning as I put my foot on the floor getting out of bed, the pain was as sudden as it was intense.

I made an appointment right away with my GP. She examined my feet, prescribed an anti inflammatory gel, sent me for x-rays and gave me a referral to see a physiotherapist. All expected with this type of doctor visit.

But in addition to seeing my doctor, I also had a look online as to what could be causing this type of pain. I use the internet a lot for gathering health information through scientific journals and both diabetes related, autoimmune related or just general health websites. I have participated for years (read: since my diabetes diagnosis in 1997) in online forum discussions on diabetes and then Celiac disease. I have followed blogs, joined facebook groups and my twitter account was used as a way to keep up with diabetes news long before I started being more active on the diabetes online community.

I trust my own health literacy and digital literacy skills enough to not worry about warnings against consulting Dr Google. I know how to find trustworthy sources of information and how to weed out dodgy or sensational health claims. I would also rather have as much information as possible about a health issue so that I can then sort through it and see what might apply to my situation.

So when my foot started hurting I asked Google for some help. I started with looking up plantar faciitis since it is a common injury for runners and the pain seemed to be in the right spot. From there, my searches included stress fractures (which I have had before, because of low bone density around the time of my Celiac diagnosis), and heel spurs (with which I have less experience but there were links to info on bone spurs on some of the other foot injury pages).

That’s when I stopped looking though. Not because I had self diagnosed anything – that was not the objective. But because when I got to the Risk Factors section of the page, right in the middle of the list, highlighted in blue because of the link: Diabetes.

That’s when I swore at my computer. Or rather, at my diabetes.

I am fairly certain that this pain in my foot has nothing to do with 18 years of living with diabetes, but I felt like diabetes was mocking me from the page of WebMD, saying, “I could be the cause of anything”. There is enough judgement and stereotyping in diabetes that we don’t need that from risk factor lists on the internet! Sometimes, though, when you know there is so much diabetes stigma out there and I’m expecting to have to brace against it, it’s hard to draw the line between judgement and concern for appropriate care.

I hate that when you have diabetes, almost any medical issue can potentially be linked to it, or at least the diabetes cannot be excluded from the possible causes and certainly can have an influence on how the problem is treated and how well/how fast it is fixed.

But I am grateful that I have enough knowledge of diabetes and health in general that I can
sort through medical info and figure out what applies to me and what doesn’t. And that I have
health care professionals who encourage me to ask and happily answer questions I might have.

I hate that health care professionals can be sometimes blinded to other causes or symptoms because the diabetes gives an easy explanation for some medical conditions.

But I am grateful that the health care professionals that I am working with on this
foot problem are trying to get to the root of it rather than blaming the ‘betes.

I hate that it is generally assumed that things will heal more slowly because of diabetes (and that not all HCPs bother to look at recent personal A1c history when making this statement, or work with the patient to help make sure that blood sugar levels stay as stable as possible during the treatment).

But I am grateful that I’m empowered enough as a patient to point out certain facts about
my own health or diabetes management and to ask if I need help adjusting basal rates
or boluses that might need changing as a side affect of other medication

I hate that my HR department at work assumed I had a diabetes complication when I asked to work part time from home while my foot hurts and I have physio appointments twice a week.

But I am grateful that the HR department helped to speed up my request to work from home
because “my dad has diabetes too and I know how important it is to take care of your feet”.

Now that I have seen the GP, the radiologist and the physiotherapist, it would seem that I have some mild plantar faciitis plus tendonitis on the side and bottom of my heel. Nobody has blamed this inflammation directly on diabetes but the fact that we cannot pinpoint what has caused it makes me feel like it leaves that D-door open just a tiny bit. Perhaps I need to have a look at my own level of diabetes stigma.

But I do have a lovely picture of my right foot, with no heel spur, either related or unrelated to diabetes.

Footxray

Balancing Diabetes, Celiac disease and Parisian bakeries

Today is #dblogcheck day. The idea is to leave a comment on every diabetes blog post
you read throughout the day – even if it’s just to say “Check!”. It allows everyone who
contributes to the diabetes online community to know that their voice is being heard.
You can read more about it on A Consequence of Hypoglycemia.

After my celiac diagnosis in 1998, I put diabetes management on the back burner for a while.  The learning curve is steep when you first have to cut out all traces of gluten from your diet so for a few months I ate whatever – as long as it was gluten free – and didn’t worry quite as much about matching the insulin dose to what I was eating. I found I could only master so many skills at one time!

Thankfully I did learn how to eat well while cutting out the gluten completely and after 8 difficult months, including a 30 pound weight gain and a 5% HbA1c increase, I felt comfortable enough with managing both diseases that things came back into order relatively quickly. I lost the extra weight over the next year and within 6 months, I had my A1c back under 7%.

Once things were back on an even keel, I realised that these two diseases are, in fact, manageable together. (Not always easily, not without frustration, but definitely made easier with the support of online communities!) I came to realise that the celiac dictated what I ate (or rather what I didn’t eat) where as the diabetes had more of an influence on the quantity of food/carbs and the timing of my meals.  And once I was on an insulin pump even the quantity and timing weren’t as limiting as they once were.

The main challenge that remained was counting the carbs (especially in the relatively high carb gluten free alternatives to some normally gluten-full food choices) and then of course matching my insulin doses to my carb intake.

I was diagnosed with diabetes and CD 18 and 16.5 years ago, respectively and much has changed in the world of gluten free food choices since then. I still cook most of my own meals from ingredients that are naturally gluten free, but I definitely eat store bought gf bread & pasta, some home-made cookies & cakes and the odd real treat from a gluten free bakery.

The offer of good gluten free food choices is still greater in english speaking countries although it has also been improving by leaps and bounds here in France. In the last 3 years, no fewer than four gluten free bakeries/Cafés/restaurants have opened in my neighbourhood. Not just “somewhere” in Paris but within easy walking distance of home. Helmut Newcake, Thank You, my Deer, Bears and Raccons and Chambelland each have a slightly different and therefore very complementary offer in gluten free wares.

And because sometimes I do venture beyond my own neighbourhood, the gf options across the city are also increasing: Helmut Newcake’s second location, Noglu, Biosphère.  I have tested most and they all get my full marks of approval. They each are the kind of place that anyone could buy real french pastries & bread or eat a meal and not realise that what they are eating contains absolutely no trace of gluten. These are places you can go with a group and those who don’t have to eat gluten free will neither complain about the taste and texture, nor about the price when compared to a “regular” french bakery in Paris.

All of these delectable cafés make for great temptation for high-carb treats. I don’t indulge often, but it’s hard to go in to buy a loaf of bread and not come out with something extra delicious – just because I can. I guess I’d better keep up this running routine to burn off enough calories and justify my sweet cravings!

Now if you’ll excuse me, I need to go indulge in a tartelette au citron meringuée. I’ll leave you with something to drool over. Can anyone guess the carbs in this baby? tartecitronmeringuee2

Spare a Rose, Save a Child

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.

Diving in

I am not a writer. I’ve been wanting to start a diabetes blog for a long time but am a little daunted by the fact that I will have to actually write blog posts! But what the heck, I’m throwing myself in (somewhat strategically just after the 5th annual dblog week – maybe by this time next year I’ll actually have to courage to participate!).

That said, ever since my diagnosis with diabetes and even more so after the CD diagnosis, I have always made an effort to connect with other people who live with these conditions, online and in person. Over the past year or two I’ve gotten more actively involved in the diabetes online community (#DOC) and despite my own reservations, starting a blog seems like the logical extension of my interactions on twitter, on forums and through comments on other D-blogs.

I already know from experience that sharing stories can help both the storyteller and the “reader”. I hope that in sharing my story of living with diabetes and celiac, I can connect with others who have similar experiences, who are looking for encouragement about living well with either one of these conditions, and who can inspire me to do the same.

You can read a little more about me here.

Thanks for stopping by to check out my blog!