#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 – Favourites and Motivations

And for my second post of the day… to at least attempt to catch up on #dblogweek! The topic today is “Favourites and Motivations”. After only a year of blogging I had a hard time picking a favourite bit of my blog, so I’ll share with you some of my motivation for being here.

I have understood from the day of my diagnosis how important it would be to connect with other people with diabetes. It all started as I lay in the ICU with bruises up and down both arms from all the IVs and artery lines that the doctors had placed with difficulty, the night before. But I was already feeling better 18 hours after diagnosis and the symptoms of my DKA were clearing up quickly.  Only close family were allowed into intensive care but I was very glad to see my uncle, who had by then been living with type 1 for 37 years.

I saw his concern for me and his sadness that someone else in the family would have to live with diabetes from now on. But I also saw his relief at no longer being alone in this and felt a connection with him that we had never had before. I hadn’t been able to adequately describe to anyone until then exactly how horrible I had felt in DKA. How unbelievably dry my mouth was, for example. No, not like when you’re really thirsty, more like when there is no saliva left. At all. But I didn’t need to explain it to him. He knew. He had been there.

So it was never really a question in my mind. If I wanted to live well with this (and I did!), I knew that I had to find peers to share stories, to compare notes, to support and to be supported by.  I joined an online forum while I was away at university and when I got back to Toronto after a few years, I found a group of women through the local chapter of the Canadian Diabetes association who became my core support group for a number of years.

I continued to participate in a few online forums, especially the Delphi “Diabetic Mommy” group. That group has been a lifeline through preparing for pregnancy and dealing with diabetes through pregnancy and motherhood. I have met only a few women from that group in “real” life, but I consider a number of them to be good friends. I also was very active for a number of years on a Celiac disease forum. The learning curve is so insane when you first go gluten free, that I don’t know how anyone does it without some support online or off.

A few years later, as the first D-blogs started appearing, I became an avid reader. But I think what held me back at first from starting my own blog was that I don’t love to write. I knew could respond to forum posts with supportive and well-informed answers, but I think I was a little intimidated on some level to create my own content rather than responding to others. So for years I put it off. But I have come to realise that as a diabetes advocate, it is important to have a personal space on the web to be able to share ideas in a more open space than what you can find in a forum or Facebook group.

I still find it a little scary to put myself out there but knowing the support I have found and have been able to share over the years of connecting with other PWD, that is motivation enough to share my thoughts with all of you. Sharing my story certainly helps me deal with my own diabetes and celiac disease and if just one person finds comfort in what they read here, my effort is worth it. And that motivates me to continue.

CookedQuichewm

#dblogweek 2015 – Foods on Friday

Ok, now I’m officially really behind on #dblogweek. I have skipped the Changes prompt altogether, though I would like to come back to it. I am now just a day late on the “Foods on Friday” topic.

I actually had the intention of sharing my entire gastronomic day and taking pictures of everything I ate yesterday. However, if I ever have the occasion to show you my food logs on the mySugr app, you’ll see I’m not very good at remembering to take a pic before I dig in.

So I’ll share with you the culinary adventure I had today. We have a new organic and local farmers’ market just up our street each week. It’s quite small so farmers only bring what you have ordered in advance. This was our first week ordering and we opted for a “family vegetable basket”, not knowing exactly what would be in it but willing to give it a try. The box we brought home had a few kilos of potatoes, a big bunch of white carrots, some rhubarb, 2 gorgeous heads of lettuce and a huge amount of blette. “Blette?”, you ask. Well I had to look it up to know that it was silverbeet or chard in English. I’ve eaten it here in France at friend’s houses, but I had never cooked it myself.

WholeBletteswm

Anyway, my objective of the day was to prepare this silverbeet in a way that my children (who have never tasted it), might not completely reject it. I decided to add it to a quiche, in a similar way I sometimes do with spinach. Here is the (mostly) photographed recipe:

about 1kg (2.2 lbs) of silverbeet
1 onion
5 eggs
a couple of heaping spoonfuls of crème fraiche
a bit of milk
Some cubed or sliced ham or lardons
some grated cheese (Use whatever cheese you like. I used emmenthal but would have preferred to use conté, just didn’t have any in the house.)
grated parmesan to top it offCutBletteswm

Cut the stems off the silverbeet.

Wash both stems and leaves.

Slice the stems and steam them for about 5 minutes (I did this with about an inch of water in the bottom of the pot). Add the leaves and steam about 2 min more.ChoppedBletteswm

Drain the the silverbeets. Chop the onion and sauté in a large frying pan in some olive oil. Add the drained blettes and sauté as desired.

Roll out the pastry. I am fortunate to be able to buy gluten free frozen puff pastry dough, and grabbed one out of the freezer this morning to let it thaw gently in the fridge all day. Another way I sometimes make a gluten free quiche “crust” is just to use leftover brown basmati rice to cover the bottom of the quiche pan. That said, a lower carb version of this could be made with no crust at all. (Just be sure to butter the bottom of the pan!).

Hamwm

Have your favourite 4 year old cut up the ham. :)

Scatter the ham and grated cheese on the bottom of the pastry. In a bowl, mix the eggs, cream and milk.

Pour egg mixture over ham and cheese.QuicheBeforeCookingwm

Top with grated parmesan and bake for about 25 min at 210°C (400F).

Get your favourite 6 year old to set the table (with a little help from her dad to pour the wine).

DinnersReadywm

Enjoy with the whole family.

BletteQuichewm

#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.