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.

 

 

Comparing emotions with D and CD #DblogWeek

Day 2 of #DblogWeek already !#DblogWeek already ! Today’s topic prompt is “The other half of diabetes”:

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

When naming my blog, I knew that I would write more about life with diabetes than with celiac but I still wanted to acknowledge the impact that both diseases have on my life. What I have been surprised to observe over the last 2 years of sporadic writing here (today is the 2nd anniversary of my blog!!) is actually how little I had to say about life with CD.

What do I mean by that? Well, both diseases affect my life every.single.day. And yet, celiac does not take the emotional toll that diabetes does. Why is that? Well, maybe I should be more specific. It no longer takes the emotional toll that diabetes does.

When I was first diagnosed with each (a year and a half apart), my honest first emotional reaction each time was relief. Relief that what had been making me so sick had a definitive diagnosis, a name and a treatment (no matter how much that treatment happened to suck!). I also intelectualised quickly that while the CD determined what I ate (or didn’t eat, as the case may be), the diabetes influenced the timing and quantity of my meals. I suppose these are coping mechanisms.

Celiac is a more black and white disease. The treatment is a 100% gluten-free diet. That means not a crumb, not using the same toaster or the same serving utensils used for gluten foods, and in some cases, making sure that food has been processed in a gluten-free facility or at least a gluten free line. It’s a lot of knowledge to have about food ingredients and you have to stay current as manufacturing and ingredients lists can change.

It has a ridiculously steep learning curve both in things you need to know and ways to cope emotionally. You have to re-learn how to eat, how to shop, how to think about food, how to enjoy a meal with friends, how to trust someone else to cook for you, how to ask the right questions at restaurants, how to leave the house without the fear of being “glutened”… My diabetes managment all but disappeared during the first 8 months or so of dealing with celiac, and the connections that I wrote about yesterday were far more celiac than diabetes oriented during that time. Only once I had reached a plateau of sufficient knowlege and coping with CD, was I able to start dealing with both diseases.

An important aspect in the emotional toll for me, is that there is no self-judgement with celiac (the judgement is reserved for people who think I do this to follow a fad) and there isn’t any guilt. There can be sadness, especially at first, for what you have to give up. But personally, I am rarely touched emotionally by what I cannot eat. I don’t know if it’s knowing how sick I get when I am accidentally glutened or if it’s just that the whole 100% gluten-free thing is clear cut enough not to be questionned. And there are results. As long as I am gluten free, I have no symptoms and no clinical signs of the disease since the flattened villi in my intestines has grown back.

Diabetes, on the other hand is all about (striving for) balance. Some insulin, not too much, well calculated and at the right times. Some carbs, not too fast-acting, well calculated and at the right times. Some exercise, planned in advance, preferably the same amount at the same time each day… Learn how to handle the stress that life throws at you and stay vigilant to make sure your diabetes devices are always in perfect working order.

And even when I do follow all the “rules”, my blood sugar doesn’t necessarily follow through with the results I’m looking for.  I get a few appointments with a specialist each year which can feel like the quarterly judgement for all moments I haven’t been perfect. But even the medical professional judgement is nothing compared to the self-judgement that happens daily as blood sugar levels spike and fall.

Diabetes “results” are also a lot less tangible. Whether or not my overall diabetes management is on target and whether or not I’m coping well currently, my blood glucose levels still go high and still go low, which influence hormone levels in my body, which influence emotions, which influence blood glucose levels… and on and on.

So 19 and 18 years later respectively, diabetes takes up much more of my mental and emotional space than CD. Most of the time I manange to cope well but there are definitely times when other aspects of my life take precedence and coping with chronic illness no longer has enough head space to get dealt with. The only tip I have goes back to what I was saying yesterday. Sharing my story and hearing others’ stories – knowing that I am not alone in dealing with this – is the most powerful way for me to manage the emotional roller coaster.

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.

 

Choice

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)

Je suis sur le point de m’embarquer dans une nouvelle aventure : au cours des 3 prochains mois je vais tester 3 pompes à insuline différentes. Ma diabétologue était d’accord avec moi sur le principe que choisir une pompe à insuline sur description papier était difficile – même quand on a eu la possibilité de les manipuler un peu. Pour être sûre que mon choix portait sur la pompe qui allait me convenir le mieux, je lui ai demandé si je pouvais essayer chacune pendant un mois. Elle m’a fait les 3 ordonnances nécessaires.

Pour comprendre à quel point ça représente une rupture dans mon traitement du diabète au quotidien, il faut savoir que je porte la même marque et le même modèle de pompe à insuline depuis bientôt 13 ans.

Vous pourriez penser que je n’aime pas le changement ou que j’ai peur des nouveautés. Au contraire. Je suis plutôt une “early adopteur” en ce qui concerne la technologie. D’ailleurs, j’ai eu ma pompe Cozmo, première “Smart Pump” sur le marché, le premier mois de sa disponibilité en France, en août 2003. J’étais une des premières personnes en France à l’avoir et je suis une des dernières à la garder. Elle à été retiré du marché en 2009 après que Smiths Medical ait perdu le jeu des brevets contre Medtronic.

Si j’ai gardé cette pompe 7 années après sa disparition du marché c’est surtout à cause du fait qu’aucune pompe disponible depuis ne m’intéresse autant que celle que je porte déjà. Mais, enfin, il y a du changement dans l’air. Trois nouvelles pompes sont apparues en France tout récemment. Chacune a des points très intéressants qui les mettent un peu à l’écart des pompes disponibles jusque là.

Elles sont : CellNovoOmnipod et Accu-Chek Insight

 

Une pompe patch avec une toute petite tubulure et tournée déjà vers les études de pancréas artificiel, une pompe patch sans tubulure du tout et bien apprécié dans d’autres pays depuis des années et une pompe plus classique qui a une cartouche pré-rempli facilitant grandement le changement de réservoir ! Elles sont toutes les trois étanches et toutes les trois télécommandées ou télécommandables donc pas besoin de manipuler la pompe directement au moment du repas. Ces éléments sont que le début des nouveautés et des points forts de ces pompes.

Cela dit, les points forts mis en avant par chacun des fabricants sur leurs sites web ne parlent pas de la vie réelle avec la pompe et l’utilisation de ses fonctions au quotidien. Sur papier, je sais déjà que certaines fonctions vont me manquer par rapport à ma pompe actuelle. D’autres fonctionnalités vont me plaire moyennement tels que le changement de bandelettes d’analyse glycémique, le gaspillage d’insuline, la tablette de pilotage de pompe lourd et encombrant…

De plus, de nombreuses questions restent encore en suspend comme l’analyse des données historiques disponibles sur la tablette de pilotage ou sur logiciel compatible, la facilité d’utilisation au quotidien, ou même le niveau de confort de porter chaque pompe. Ne parlons même pas de la place nécessaire sur ma table de chevet pour brancher et recharger les parties que le nécessite !

Mon but est de voir la pompe qui convient le mieux à mes besoins et à mes préférences. Et si aucune des 3 fait l’affaire pour moi, ma Cozmo restera au fond de mon tiroir en attente ! Suivez moi au cours des prochains mois pour mieux connaître ces pompes nouvellement disponibles en France et pour voir si j’arrive à me détacher de ma chère Cozmo.

3Cozmos

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.

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

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