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.

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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

Running with diabetes

As I got ready to go for a run the other day, I got a little disgruntled at the number of steps I had to take to get out the door. Indeed, I sometimes resent the fact that others can simply lace up their shoes and go for a run without having to take into account dozens of factors that could turn their hour of exercise into a potentially dangerous experience.

Here is the list of questions I ask myself before a run (and some of them in the hour(s) leading up to said run):

  • What is my blood glucose level?
  • How stable is it and how stable has it been over the last few hours?
  • When did I last eat and what was my last bolus?
  • Do I have any active insulin on board?
  • Based on last dose of insulin and current basal rate what is blood glucose level expected to do over the next hour?
  • How long am I planning to run for?
  • Do I need to drop my basal rate before and/or during my run? By how much?
  • Do I need to consume some carbs before setting out?

And here are a list of actions I do to get ready for a run:

Pump Pocket in Running Jacket

Pump Pocket in Running Jacket

  • Fill up glucose tab tube, put in pocket of running tights.
  • Put pump in pocket of running jacket and feed infusion set through the button hole inside the pocket (and don’t forget to click the infusion set back into place!!).
  • Put in-case-of-emergency card and phone in arm band.
  • Do a last blood sugar check and compare to dexcom (since the Dex comes with me while the meter sits at home).
  • Put dexcom receiver in spibelt around waist.
  • Lace up shoes.
  • Put Moov coach around ankle.
  • Try not to get earphones tangled around arm/jacket
    Connected run

    Connected run

    hood/ponytail…

  • Start Runkeeper.
  • Take first step.

Without diabetes, None of those questions are of any consequence other than perhaps about my previous meal and how long I’m going to run for. As for the To-Do list, only the last 5 items are not diabetes related and that part takes a total of about 3 minutes.

And yet, I am so thankful that I can run and do other forms of exercise despite diabetes. In fact, I know that my diabetes diagnosis almost 18 years ago changed my views on physical activity in general and motivated me to be more serious about running in particular. In turn, wanting to manage my running well was an additional motivator for managing my diabetes well. I switched to an insulin pump because I knew I would have more control over both timing and amounts of insulin doses and therefore could minimise exercise-induced lows. More recently, using a CGM has given me new insight as to what is going on with my blood sugar during my runs and I have made changes to both my running and diabetes management habits because of it.

All of those questions and steps had become second nature to me years ago when I was in peak form and I was marathon training. At that time, there was just me and my diabetes to think about. Now with young kids at home and many more demands on my time, all the organisation it takes to get out the door really is a challenge. But it is worth it for how it makes me feel, both in terms of physical fitness and in terms of empowerment for living well with diabetes.

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.

New pump but keeping the Cozmo!

A month ago, my insulin pump started giving me more frequent alarms. Most of them have been “dead battery” alarms, when I know there has been a brand new battery in there. One day it told me pump was without power (ie – dead battery) in the middle of each meal bolus of the day. I really can’t complain. This little piece of amazing technology has been on my hip for close to 5 years now. It has been bumped on door frames and dropped on tile floors more times than I can count. It’s well past its warranty and I’ve never had any major problem with it. But when it was clear where my pump was heading, I made sure that I had all my current basal and alarm settings written down.

One morning a couple of weeks ago, as I did a routine cartridge change, the pump simply couldn’t recognise there was a cartridge there. I must have tried to rewind a dozen times but eventually, there was a single, unending BEEEEEEEEEEEEEEEEEEEEEEP and a “Your-pump-is-dead-please-call-your-doctor-or-pump-rep.” message.

My backup plan in the event of pump failure is that I have a second pump at home. This is possible because I still wear a Cozmo and since there are only a few of us Cozmo users left on the planet, my pump supply company was willing to give me an extra one on “permanent loan”. This one is also almost 5 years old, but never been used so it felt brand new as I punched in all my personalised settings.

This event of course gave me another chance to ponder pump choices, but they haven’t changed since my post in July so I’m still sticking to the status quo. And the extra good news in all of this is that my pump supply company managed to get me a brand new black Cozmo. I couldn’t believe they still had one in stock! So I am set to go for another few years – either until they run out of Cozmo reservoirs or until a more interesting pump comes out on the French market. 2015 should see the release of the Accu-Chek Insight,
The Medtronic Minimed 640g, minimed640g

And the Ypsopump. YpsoPump2

Just so you don’t think I’m too set in my ways (is 11+ years with the same insulin pump too much?), I’m excited to see some new options in pumping coming to the European market and I will be looking carefully at my possibilities to modernise! In the meantime, I programmed my blue Cozmo replacement pump while waiting for the new black one to arrive and I the colour grew on me. Plus my 4 and 6 year old daughters think it is SO much prettier and would be mad if I went back to the black one. Blue Cozmo it is then! I always have the new black one to fall back on.

(The old black one has now gone back to my pump supplier but I was amused to have 3 for a short time!)

3Cozmos

I want to become a runner again

I discovered running at the age of 9 thanks to a wonderful coach who volunteered at my primary school. She was great at encouraging everyone, no matter what their natural talent was and empowered us to find our own strengths. I was never a fast runner but that didn’t matter. I learned to love running because it made me feel powerful. (Plus, the cross country team at school was the one team with out tryouts – everyone was welcome!) I ran less in my early university years because I was sick a lot (with what I now know was undiagnosed CD and then undiagnosed diabetes).

After my diabetes diagnosis, I got very serious about exercise and went to the gym 4-5 times a week. But I didn’t take up running again for about 3 years. I found running particularly tricky in terms of blood sugar balance. I really struggled with lows at first and trying to prevent those post-run lows was one of my main motivations to get an insulin pump. I wanted to have more control on my insulin doses to be able to run more often and longer distances without sacrificing stable glucose levels. In that first year on a pump, I ran my first 5k race (in a decade), my first 10k race and my first half marathon. I was hooked. Over the next 5 years I did several 5 and 10k races, 4 more half marathons and the big prize: one marathon.

I was super proud of my accomplishments and even prouder of how well I was managing to balance my running AND my diabetes. Then life got in the way of running. I was busy. Planned a wedding. Bought and renovated our home. Had two kids. Anyone who has done it can confirm that balancing pregnancy and diabetes is like a marathon in itself!  So during those years, my runs were sporadic at best.

After my second daughter was born, I wanted to get back at it but I had loads of excuses to delay. I breastfed for a long time and wasn’t sure how to handle the bouncing lactating boobs. My 2nd was not as great a sleeper as my 1st and I was chronically exhausted. When I went back to work, figuring out work/life balance was particularly stressful for me. All of these are probably reasons I should have used to start running again, but I let them work against my desire to lace up my shoes.

There was also one factor that was entirely diabetes related. When I was marathon training, I only had to worry about me and my diabetes. In the meantime, my family had become my top priority and it was hard trying to prioritise diabetes management and my own fitness into that mix. Plus, a new fear of exercise lows had wormed its way into my brain. I just didn’t want to have to deal with extra lows on top of everything else so the simplest solution was not to exercise!

But I had gained some kilos after having lost all of my pregnancy weight. And I know how good regular exercise is for physical and mental health and how good it can make you feel. So bit by bit I gathered the courage over the past year and started running again. Slow. Steady. Easy pace. I’m not out to win races, but then again, I never was. I gathered motivation where I could find it. I installed Run Keeper on my phone. I increased my goal for steps on my pedometer. My husband and planned our weeks so we knew who could run when. I tried running first thing in the morning before breakfast and was amazed at how stable blood glucose levels can be when exercising on an empty stomach and with no bolus-on-board.

But there is one thing that has recently boosted my confidence and my desire to actually become a runner again (because even though I’ve been running more on than off for the last 10 months I still haven’t quite reached a point where I feel “legit”).

Here in Paris we have a “Café Diabète” once a month. It’s a laid back support group for people with diabetes. Family and friends are welcome too. Each month there is a different theme and last month it was diabetes and sports – not just physical activity, but actually taking things to the next intensity level. Of the people who came, one did 5 marathons this year; another had recently attempted a 100+km trail race. I loved hearing theirs stories, their motivation, their tips on balancing food, exercise and blood sugar while putting their minds and bodies to the test.

I have never let diabetes hold me back from anything I wanted to accomplish. And I have run one marathon so I know I CAN do this. But sharing the goals, the struggles and the successes with others who are striving for similar things brings a whole new level of motivation. I’ve been running more consistently since our Café Diabète a few weeks ago and I feel really good about it. I’m not out to run 7500 km in 9 months or to become an IronMan (woman?). What I would like to do is solidify my exercise routine and I know that running is the sport for me based on how I feel after coming in from a run – even if it’s only 5 or 7 km. And I will make sure to surround myself with the support and motivation that comes from others who are in the same boat. I want to become a runner again for myself, but also for my daughters to grow up seeing the strength that comes with physical fitness.