Category Archives: Uncategorized

Twenty years

20 years ago today, my mum picked me up from my university dorm room and brought me to the ER where I was diagnosed with type 1 diabetes. I spent a couple of nights in the intensive care unit, then 3 days learning the basics of diabetes management. Then I was sent out into the real world to learn what it was really like to live day to day with my newfound life mate.

During the last 2 decades (or 240 months or 1044 weeks or 7305 days, but who’s counting?!), I have been:

•    checking my blood glucose levels,
•    injecting or infusing insulin,
•    counting carbs,
•    trouble shooting basal rates,
•    treating lows,
•    riding the blood sugar roller coaster,
•    dealing with burnout,
•    sticking medical devices on (and in) my skin,
•    filling insulin pump reservoirs,
•    scrambling to get sugar into my mouth,
•    battling high glucose levels that won’t come down,
•    being part robot,
•    planning my meals,
•    thinking like a pancreas,
•    feeling overwhelmed at times,
•    waiting for doctor and hospital appointments,
•    trying not to feel judged by the number on my glucose meter,
•    calculating insulin doses,
•    reassuring my family – and myself,
•    making sure I don’t run out of diabetes supplies,
•    having my eyes, heart and feet checked,
•    choosing my clothes carefully,
•    sewing pockets to house diabetes devices,
•    avoiding door knobs,
•    lacking sleep,
•    eating candy as medicine,
•    toting around a ridiculously heavy hand bag to store all my diabetes crap,
•    nursing bruises from injections and pump sites,
•    dealing with discrimination,
•    silencing the beeps,
•    finding the right diabetes technology to fit my life,
•    improving my math skills,
•    wearing blue,
•    sticking up for myself,
•    participating in clinical trials,
•    reading scientific papers,
•    finding my tribe,
•    being inspired by so many others living with diabetes,
•    running a marathon,
•    engaging in advocacy,
•    volunteering for my local diabetes association,
•    organizing diabetes peer support initiatives,
•    using skills learned from living with diabetes in my professional life
•    learning from other people’s stories,
•    becoming an expert,
•    sharing my experiences,
•    teaching medical students about patient perspectives,
•    attending and talking at medical conferences,
•    kicking diabetes’ butt,

Oh, and also generally getting on with the rest of my life.

Sorry, that got a little out of hand, but once I started typing, the list kind of grabbed a life of its own. There is no question that diabetes is a full time job and this list only scratches the surface of the mental gymnastics that living with D involves. I guess the point is that diabetes has added a lot to my life, some of it downright horrible, some of it tedious and time consuming, some of it stressful and emotionally difficult, and some of it utterly amazing. I could not have gotten this far without the ongoing support I have from my family and friends and of course, the amazing people with diabetes I have met along the way, in person or in the DOC.

And as a little diaversary gift, my diabetes gave me this today:

img_9917

It doesn’t happen all the time, so it’s worth celebrating !

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.

 

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.

World Diabetes Day 2015

This years’ World Diabetes Day events and celebrations were entirely smothered by the horrible violence that erupted in Paris last night. I live quite close to several of the shootings took place and I spent my evening and well into the night listening to sirens and hearing a few loud noises that sounded like explosions. I refused to turn on the TV but was watching  live feed on some news websites as well as my twitter and Facebook feeds until 2am in absolute disbelief.

That shock continued this morning as I tuned back into social media for updates on the tragedy that had unfolded, and to find news of close friends who had had to take detours on their way home or had been actually unable to get home because of police barricades in the streets. One who did not get home until noon today to her husband and 10 month old, breastfed baby.

How could something like this happen? And why here? Why so close to home? What kind of human can execute another innocent human?

And yet, as these questions pound my head, I am very aware that in many many countries, these types of events are common occurrences. So common and yet not reported in news feeds I am familiar with. I had heard nothing of the bombing earlier this week in Beirut until late last night in the midst of all the news on what was going on in my neighbourhood. I realise how privileged I am to live in a place were I can walk the streets without fearing for my safety, or my life or for the lives of my children. I realise how privileged and loved I am to have received so many messages from family and friends all over the world to check in and make sure my family and I are safe.

That privilege, of course, also extends to being able to live well with diabetes. I have access to insulin, blood testing supplies, insulin pumps, education and peer support. None of this, down the the batteries in my insulin pump, have any direct cost for me. Such is the privilege of living in a country with a socialised health care system. And while I can be heard raising my voice to talk about the need for public funding of new diabetes technology like CGMs, I know that there are many, many countries in the world where there isn’t access even to lifesaving insulin or syringes to administer it, let alone refrigeration to make sure it stays potent.

T1 International is an organisation who believes in a world where everyone with type 1 diabetes – no matter where they live – has everything they need to survive and achieve their dreams. They work towards adequate access to insulin, diabetes supplies, medical care and education for all people living with type 1 diabetes. This year’s T1 international’s World Diabetes Day campaign, “We are the world in WDD” is about showing everyone who we are: a global force standing together to push for access to diabetes supplies, care and treatment for all.insulin4all2015

It is my hope that we not only stand together for this, but that the global force of humanity can stand together for peace and love in all nations around the globe.

New pump or not new pump?

With all these #showmeyourpump pictures filling up the internets, I thought I’d share some of my thoughts around my pump choices.

I first started pumping in 2000 with a minimed 508. I loved that pump because it was what gave me my first taste of the freedom of different basal rates throughout the day and to be able to take a meal bolus with the touch of a button. I still have my old 508 along with a set of batteries and a couple of reservoirs – just in case. When minimed’s (or was it already Medtronic by then?) first paradigm pump came out – the 511 – it was the natural “next pump”. However, if I remember correctly, the 511’s features were about the same as it’s predesessor; it was mostly the outer physical aspect of the pump that was upgrated at that point. I didn’t stick with it for long.

Cozmo was the first “smart pump” on the market and I was lucky enough that France was the second country in the world where it was available. It came out in the US in late 2002 and Smiths Medical decided to use the World Diabetes Congress in August 2003 in Paris to launch the pump to the rest of the world.  I got my first Cozmo about a week before the WDC.

Any time I have needed to switch pumps since then (for warranty or malfunction issues), I have always chosen to stick with the Cozmo despite the fact that all pump manufactuerers have come out with several newer pumps over the last decade and despite the fact that the Cozmo itself has no longer been available since 2009.

In France, all insulin pumps and pump supplies are ordered through specialised medical supply companies. They buy the pumps and supplies from the manufacturers and patients “rent” the pump and buy supplies from these third party suppliers (covered, thankfully, by French social security – the famous “Sécu”). So, lucky me, even though Smiths Medical took their pump off the market, my supplier still has some in stock and it is still avalable to me – at least until they run out of reservoirs.

#showmeyourpump

After 11 years, I still love my Cozmo with its personalisable menus and features. I choose to use an insulin pump partly because it makes it easier to adapt my diabetes to my lifestyle and I love that I can adapt my Cozmo to my own habits and needs in terms of diabetes management.

That said, after 5 years now with no updates, I figure it is worth looking at what else is out there.  I’ll spare you the full details of my pump comparison but one negative aspect of this process for me was that there are only 3 pump options here in France :

  • Roche Accu-Check Spirit Combo
  • Animas Vibe
  • Metdtronic Veo 554 (which I think is equivalent to the  MiniMed 530G system in the US)

When you look at some of the unique features of the T:slim, the Omnipod or the Snap pumps, it is disappointing that those are not at least options here.

With the choices available to me and my own preferences in terms of features that are important to me in a pump, I chose to weigh the pros and cons of staying with my Cozmo or switching to an Animas Vibe.

To get to know the Vibe a bit better I talked with a nurse educator at my pump supplier and she showed me some of the main features. I talked to people using the Vibe locally and on social media to get their impressions. I posted detailed questions on diabetes forums asking which of features I love on my Cozmo might also be available on the Vibe. Finally, still unsatisfied that I didn’t get the nitty gritty of the comarison that I was looking for, the geek in me decided to download the user manual, which I read cover to cover.

The Vibe looks like a great pump and I know many people who use it and are very happy with it. It has certain features that I would like to have on a pump and don’t have today, like showing my dexcom graph, or different insulin sensitivity factors at different times of day. I would trust it’s waterproofness more than my current 4+ year old Cozmo and I could use software like Diasend to compile a majority of my diabetes data. These would be definite advantages of switching.

However… after much thought, there are still too many features on my Cozmo that I use daily or weekly that are not available in the Vibe (or any other pumps available to me) that have made me decide to stick to my status quo.

Just to name a few:

  • size, shape and light weight (though I’d be happier if the Cozmo was slightly less thick)
  • user set site change reminders (even though most often change my sites every 2 days, I have a hard time remembering when the last change was)
  • the ability to save temp basal rates that I use often
  • detailed history feature including daily carb intake, %of basal insulin and averages
  • fewer button presses to complete any action
  • the intutive nature of the screens (right and left buttons make navigation easier)
  • very personaliseable reminders & alarms (although there is one more that I would like to add)
  • can give a quick bolus using unit of insulin or grams of carbs
  • a battery change only involves changing the battery (no re-priming of reservoir or losing stored data)
  • a low reservoir alarm at a only 5u left (rather than a minimum of 10)

All these years later, I am still disappointed that Smiths Medical decided to leave the diabetes business. They had a great product and I will continue to use it as long as I still have access to replacements and pump supplies.

If you use an insulin pump, I’d love to know what features were deciding factors for you in chosing your particular pump.

I need a basal profile change reminder!

I’ve been wondering for a while about when will be the right time for me to switch insulin pumps because the pump I currently wear is no longer on the market and well past its warranty date by now. One of the main reasons I’m still wearing my Cozmo is that I’m a little picky when it comes to insulin pump features. I’ll write more about my my pump comarisons and decision process at another time but for now I want to throw out a question to the diabetes online community:

Does any pump on the market today automatically switch from a weekend to weekday basal profile on monday morning and back again on friday night? Even better, at a user specified day and time? I’d even accept a user-set reminder to do it manually.

Let me explain. All last week I was able to observe a very specific pattern emerge in my glucose levels. Every evening right around the time I was picking my kids up from school and getting home to put dinner on, my blood sugar tanked. So yesterday, being the beginning of a new work week, I was determined to be prepared. My BG was coasting at about 120 during the afternoon and about 45 minutes before I left work I ate 10g of carb in the form of dark chocolate figuring that the fat in the chocolate will keep me from spiking but that amount of carb should hold off the expected low.

The result? An hour later my BG had slowly and steadily risen to 182mg/dl. My first reaction was the typical frustration at diabetes for never acting how you would expect. Then I realised my own mistake. It was monday and I had left my basal profile on “weekend”. (So perhaps the real surprise was that my blood sugar hadn’t been higher all day with a lower basal rate than I usually have while sitting at my desk. I sense some more basal testing in my future!)

This is not surprisingly not the first time I had noted a need for a reminder to switch basal profiles. I don’t work wednesdays (a very common thing for mums in France as traditionally there is no school on wednesdays) so I switch back and forth between my weekend and weekday basal profiles twice a week. And I definitely forget from time to time.

Spending my monday with a weekend profile didn’t result in anything too dramatic. I corrected that 182 with a fraction of a unit of insulin, switched to the weekday profile and went on with my evening. For me, forgetting to activate the weekend profile can have more notable consequences with some pretty major lows on wednesday or saturday mornings. So an automatic switch or an integrated reminder would make a real difference to me in terms of having one less diabetes-related detail to think about 4 times per week.

While I’m at it, why don’t other pumps have a site change reminder feature?