Category Archives: Diabetes

Encounters of the diabetes kind

I just spent a couple of days in Oslo, Norway on a business trip. Things were very busy leading up to my trip and I hadn’t really paused to think about the fact that I was going to a city and country I had never been to before. Nor about the fact that I “know” a Norwegian. I put “know” in quotations as we hadn’t ever met in real life but had been conversing for years on an online diabetes forum.

When I finally got to my destination I thought about what I could do with the very few hours of free time I had before and after my meetings. It was only then that I contacted my Norwegian friend to ask if she actually lived in Oslo. She did, and as it turned out, she was free to meet up the following evening, just at the time that my meetings were ending.

We didn’t plan anything overly exciting but we sat for an hour and a half at Starbucks talking diabetes, of course, but not only. We talked about family, work, travel and bi-culturalism as if we had been close friends for years. But in reality, we haven’t been in close contact lately as the forum that brought us together originally was about diabetes and pregnancy and our respective kids are now between 9 and 4.5 years old. I love the power of the internet and social media, that we can so easily create a network of contacts and friends all over the world at a few clicks of a mouse or taps and swipes on a smartphone. But there is a different level of magic when those conversations and friendships are taken off-line.

On a completely different level, I had one more encounter with diabetes in the wild before I left the country. I was standing in line to go through security at the Oslo airport on my way home. As the queue snaked forward, there was a counter space that people could use to organize the things that need to be taken out of carry-on bags to go through the x-ray machine. I happened to glance up as I passed on the other side of this counter and saw a young woman putting a glucose meter and insulin pen in a clear plastic ziplock bag.

My first thought was -” that’s strange, I’ve never taken my diabetes paraphernalia out of my purse for airport security, unless asked”. The fact that I was looking at another girl with type 1 was only my second thought. I smiled at her and she looked a little bewildered. Not sure how much was her stress about travelling with diabetes and how much was the fact she had no idea I had diabetes and therefore why this strange woman in line was smiling at her. So I took my pump out of the pocket of my jeans and held it up to her.

I saw the recognition light go on in her head and she fired off some very rapid Norwegian about “no pump” – at least those were the only words I caught. Then the line moved on but I felt empowered by the mutual understanding of the stress of travelling with diabetes and that I wasn’t the only one in that line wondering if I would be pulled aside to be asked about my diabetes kit.

Oh, and if you are ever in Oslo, the Vigeland sculpture park is a must see. The sculptures and statues blew me away in the emotion that they conveyed. I only wish I had a better camera than my iPhone 4S to capture the beauty.

VigelandChildonBackwmVigelandOldLadieswm VigelandcouplewmVigelandWomanBabywm

#dblogweek 2015 – Continuing Connections

Wow, the last day of #dlbogweek! (And I only missed one day!!). Today’s topic is about the connections that we make in the diabetes online community.

Ironically, perhaps, one of my favourite parts of making online connections in the DOC is when I actually then get to meet people face to face. I have been lucky enough over the years to meet a number of people “in real life” after having met them online through forums or blogs or tweetchats. But what is so important with the online space is that the possibilities of these connections is so much greater. It allows us to find and interact with people in the next town over or on the other side of the world who understand our own situation so intimately without ever setting eyes on each other.

As I said in my first #dblogweek post, this is my first time participating. I actually got a “happy anniversary” message from WordPress today because I created my blog immediately AFTER last year’s #dblogweek. I couldn’t take the pressure of starting a blog with 7 posts in 7 days, but after reading hundreds of posts that week, I finally took the leap and created this space.

But the difficult part for me this year was that with so much time composing posts, I didn’t actually spend a lot of time reading the posts of other participants. Next week will be a “part 2” of #dblogweek for me. I’m really looking forward to getting caught up and reading what others have written on the same topics I have thought about during this time. The few posts that I did read, whether from blogs that I know and love or ones that I just discovered were further confirmation of how awesome this community is.

Thank you, Karen, for spearheading this project that facilitates further connections within the community.

#dblogweek 2015 – Cleaning it out

Already behind on my #dblogweek posts… Wednesday’s topic is (was!) “Cleaning it out”.

I live in a small apartment with my husband and 2 kids. I don’t have the luxury of taking up too much space with diabetes supplies.

One thing that helps me keep on top of the stash is that I pick up my insulin and test strips monthly from the pharmacy, so those are never over-flowing. Glucagon is only on my prescription about every 18 months and once replaced, my husband uses the expired one to show me that he remembers how. My pump supplies come by mail every 3 months. When I get my shipment, it’s a bit of a puzzle to store everything at first but changing my infusion set every other day at the moment means that they get used up quickly.

But I must purge somewhat regularly to be able to contain my D-supply stash to the plastic storage box beneath my bed. So I have taken this topic very literally as it has prompted me to clean it out. I threw out a full box of  manuals for meters I don’t use anymore and I threw out the box that my original Cozmo came in (back in 2003). I threw out bizarre free samples I had received over the years and kept just in case one day I’d have use for them. And I threw out some lancets that had been hanging around for more than a decade.

Dsupplieswm

I kept only essentials – well, essentials plus a dozen back up meters (for which I have no strips), a stupid number of old meter cases pump clips, pretty much every log book I have ever written in (which, considering 18 years of diabetes, is relatively few) and a healthy stash of Cozmo reservoirs since when those run out I may actually need to consider changing pumps!!

I’m glad to have things tidied up – so thanks for this topic suggestion!

#dblogweek 2015 – Keep it to yourself

The second topic of this #dblogweek is “keep it to yourself”.

Sometimes it’s hard to draw the line between what to share and what is best kept private. In general, off line and online, I share pretty openly about my diabetes – usually things that will help me and my own diabetes management or that I think could help others in the community. I don’t have hard & fast rules about what I won’t share publicly online but there is definitely an automatic filter on sharing some of my “deepest darkest” feelings or secrets – so much so that I’m not even sure I could articulate it here.

I have an introverted nature and for years I followed diabetes related blogs and twitter handles but preferred to share my own diabetes story in the relative private space of forums. But 3 years ago when my diabetes burnout had reached an ugly peak, reaching out to the more public diabetes online community and getting involved more actively played a huge part for me in finding balance.

But since I started sharing my diabetes story more publicly online, I have certainly learned about consequences of sharing. This hasn’t necessarily led me to “keep it all to myself” but I have had to work on how I deal with comments and judgements that can and do crop up and throw me a little off balance.

An example : Last September, I was fortunate enough to be able to try out the Freestyle Libre flash glucose monitoring system. I was excited to try it and excited to share my experiences in anticipation of this new technology hitting the European market. My first 24 hours on the Libre was a bit rough. Not because of the device, just because, well – diabetes.

RoughDayLibreDexwm

I hesitated to share this photo because of the actual graph but I was excited to show how well the Libre and Dexcom lines compared so I posted it on twitter.

The following day, someone posted my picture to a diabetes Facebook group as it was among the first on the internet comparing the two devices. At first I was amused to find my picture in a place I hadn’t put it. Then came the comment “Interesting diabetes management…”. I would have expected my doctor to be a little alarmed at that particular graph but I’ll admit that I wasn’t prepared to deal with the judgement from others who deal with diabetes every day.

As I said, that day was a hard one. I took less insulin than usual, set temp basal rates, did the same amount of activity as usual, ate more carbs than usual, including about 4 full-sized juice boxes and yet my blood sugar just kept dropping.

I don’t regret sharing the photo because it was exciting to be a part of the Libre trial and for me a big part of that was comparing it to the CGM technology that I already used. But this experience and a few other times where I have seen not-so-positive replies to things myself or others have shared in the online diabetes space have certainly taught me to be prepared for all possible reactions on what I decide not to keep to myself. It is therapeutic to share and make connections with others who “really get it” and it’s important for each of us to think about and find our personal threshold in terms of what we keep to ourselves and what we want to share.

One of the amazing things about the diabetes online community is that there are enough of us (with different levels of openness) that we can almost always find someone else who we can connect with. It is important however that we each remember to respect each other for sharing our stories rather than placing judgement on what is shared.

#dblogweek 2015 – I can

I wasn’t sure about participating in this year’s #dblogweek. I started my blog almost a year ago (after many years of considering it) and started after #dblogweek because I thought it would be too much pressure to start my blog with 7 posts in a week. A year later, I still think it’s a lot of pressure, but we’ll see how it goes!


To start, for more info on #dblog week and to discover the blogs of those participating go here:
Sixth annual diabetes blog week.

The first topic is “I can…”. I’ve written recently about some of the things that I can do and have done while living with diabetes for the last 18 years. So today, my post is going to be simple. I’m appreciating the fact that I live in a country where I have access to diabetes technologies and that most of my diabetes supplies are covered 100% by the French social security system (including the batteries for my pump and meter, but excluding all continuous glucose monitoring or flash glucose monitoring equipment).

This is not the case in so much of the world so I don’t take for granted that I can choose which meter I use to monitor my glucose levels and how I administer my insulin (pump vs. MDI). I am currently taking advantage of this choice in that I have been having issues with reactions to my infusion site tape, so I’ve been trying out new sets. I feel lucky that “I can” do this with just a phone call to my pump supply company.

Skin rashes aside, I rarely have occlusion problems with my angled infusion sets. Unfortunately almost every time I have tried a 90° set, this happens:

ElbowedSetwm…with the obvious consequences! But since my skin issues persist, I am still on the hunt for solutions. This week I’m trying out some Orbit sets for the first time. I don’t have full conclusions yet as to whether these 90° sets might work for me, but so far so good. I like the fact that the tape is totally different than most sets and so far, after 36 hours I haven’t had any redness or itchiness. And so far, no elbowed cannulas or crazy high blood glucose levels. I also love the fact that the set can swivel 360° on itself so I can move the tubing if it gets in the way of my clothing, or sleeping.

https://vine.co/v/emxJbe1vA30/embed/simple

Of couse, if you play too much with the 360° swivel, this happens:

OrbitTwistedTubingwm

(Please pay no attention to the infusion site scars that dot my belly!)
(But go ahead and notice how the blue tubing matches my blue pump!)

Diabetes isn’t always easy to live with and presents different types of problems at different times but I’m glad I have a choice in how to deal with each issue and I’m confident that I can find a solution to these pump site rashes. Perhaps with Orbit. But if not, I’ll try another set or some kind of barrier.

The low that got me

Both yesterday and today I woke up with a similar blood glucose level, a little under 100, then a little over 100. I had the same breakfast and gave the same bolus. But yesterday I bolused as I sat down to eat and regretted not pre-bolusing because my blood sugar spiked pretty fast before settling back down to an acceptable pre-lunch level. Today I didn’t want to repeat that so I pre-bolused by about 8 minutes. Today there was no spike.

An hour after my bolus I was sitting on the metro, halfway to work and felt some mild telltale songs of a low. I glanced at my dexcom and was a bit surprised to see 51 with a straight down arrow. I grabbed a few glucose tablets and even as I munched them, started feeling worse. A bit panicky. I ate some more. My heart started pounding and I was sweating so I very awkwardly took off my scarf and then my jacket in the overcrowded train. I wasn’t counting the glucose tabs but I was slightly aware that it would be a good idea not to eat too many.

Sheer concentration helped me stand up to get off the metro at my station. But I couldn’t make my feet  take me where I needed them to. I sat on a bench on the platform. I wanted to cry. Not because I was scared. Not because I didn’t know what to do. Not because I didn’t think this low wouldn’t come back up. But because normally I have diabetes and in that moment, diabetes had me. I was no longer the one in control of the situation.

I’m not sure how I looked to the morning commuters but I must have sat there for about 15 minutes watching the trains go by and trying to catch my breath, control my shaking muscles and slow my heart rate. When I finally did get to my office, I checked the glucose tab tube and saw that I had eaten 8 of them. 40g of carb. I knew that would more than shoot me high, but I didn’t want to bolus right away either, given the ongoing shakes and fuzziness in my brain that made me think I was still low. I then realised that I hadn’t actually tested my blood sugar that whole time so I took out my meter. A shaky blood drop later and a 102 stared back at me. This was about an hour after I first noticed the symptoms of the low.

So I knew I was in the clear blood sugar-wise but it took until after lunch, almost 4 hours after starting to treat the low for the symptoms to disappear. All morning I was working in slow motion. My brain wouldn’t process complex information. My colleagues told me I was pale (which is saying something for this Irish-skinned girl!) and that my eyes looked a little vacant. I felt run over, flattened, defeated.

Most of the time I handle living with diabetes just fine. But today, diabetes got me. Really got me.

(Canadian!) Insulin pump in the (Parisian) wild

It was warm and sunny this afternoon in Paris. After the kids’ music classes, we scooted to a nearby park to take advantage of the spring weather. There was climbing, sliding, jumping, balancing and running. And snacks – well, they had snacks, I had glucose tablets just to keep up with their energy level.

Then, just as I watched my younger daughter run around from the bottom of a slide to go back up the climbing wall, a woman walked up to me a said Hi, in English. This isn’t all that surprising for the neighbourhood, but I’m always happy to meet other anglophones around town. But she didn’t stop there – she continued with a “I’m sorry but I couldn’t help but notice…” and then she pointed to my pump on the waistband of my jeans and then pointed to her own pocket, where I saw a purple Medtronic pump poking out.

The conversation took off right away. She’s had type 1 for 40+ years and been on a pump for 3. She said her only regret is not getting on a pump earlier. When we had talked diabetes for a couple minutes, we switched to life stories. Each picking up on our respective North-American-but-not-quite-American accents, we had a second “wow, cool” moment realising we are both Canadian, me from Toronto and her from Nova Scotia. Beyond the visible pump tubing we also both had Mountain Equipment Co-op (MEC) backpacks. Secret Diabetes flags and secret Canadian flags.

Since we were both running after children (Mummy, come play tag – you’re IT!), we didn’t get to chat for long, but how fun it was to be able to say “Me too!” with a total stranger. She’s only in Paris for a few months and neither of us were at our regular local parks so I don’t know if we’ll meet again. But it was nice to make a connection with a fellow Canadian with diabetes.

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

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.