Getting out of my comfort zone

My only meetups with other diabetics tend to be outside of Canada over the past 11 years since I started dabbling in the diabetes education/advocacy area, at conferences where you're inside and learning about new advances, meeting new friends, etc.  Most don't tend to involve much activity, so this recent long weekend trip near Sudbury, Ontario back in the beginning of July was a nice treat.

I attended an outdoor adventure with other Type 1 diabetics and their "5.5er's" (either our partner in crime or friend/parent) organised by Connected in Motion (CIM).  It's been over 40 plus years since I went "into the wilderness" as a child in the 1970's at Camp Banting near Ottawa (it was almost closed down last year by Diabetes Canada, but luckily funding from private organizations, folks like myself are keeping it running for hopefully many years as Canada's longest-running camp for Type 1 diabetics since 1953).  All I know is that the 2 weeks away back in those days (giving my parents a much-needed break) was awesome, even better was being with others like myself.   Back then, it wasn't a cheap experience for my Dad to fork out for as the only breadwinner in our house.   To me it was heaven having blisters on my hands from paddling hard in the Ottawa River,  getting dirt under my nails as a child, listening to haunted stories around the campfire, and scaring some of my bunkmates with wiggling legs of a daddy long-legged spider. 

Canoes all lined up for their next adventure

Back to the present, the French River Provincial Park was our first initial meet up for the 2019 5.5er Canoe Trip event.  Majority of people who attend these events tend to live closer to the areas that events are held, so it was a good 8 hour drive through some beautiful parts of Canada as we traversed along the Ottawa River on Hwy 17.  If you're a true Canadian, road tripping is part of what we're known for due to the large size of our country and the cost of air travel here.

Paddling along and well protected from the sun

We'd not calculated properly the time it would take to get there, so arriving in the dark was fun on the Friday night, even more fun later on, once we set up our 2-man tent that's provided (really meant for 1 - but if you don't mind sleeping opposite each other at night ** my feet don't smell **, you are comfy as a little bug in a rug).  I'd not been in a provincial campground, especially one that many Toronto folks can easily drive to, was a wee bit daunting for someone like myself that's not too big on those types of campgrounds.  The main thing, it was only one night - otherwise - Sock Monkey. Yes, he came along despite some of the other attendees thinking it a wee bit odd that an old fart T1D would have a stuffed toy ... ahhhh ... long time insulin junkie ... makes the brain refuse to grow up perhaps???  Well at least in my case it does.  If I keep on attending more CIM events, hopefully, they'll get used to him being part of the team like my American #foundmytribe have, along with my cat ears (these weren't revealed at this event).

Sock Monkey enjoying his cuppa joe in the morning !

All, I can say is, the 3 days we were all together, was absolutely awesome.  Exploring via your own canoe, and feeling like you're in a Group of Seven picture, breathtaking as you paddled along.  Helping each other out, e.g. if your insulin gets fried in your canoe in the sun/heat, everyone has extra vials of insulin to help you (they did get it all sorted out).  For those of us (mainly myself and my hubby Mike) who hadn't canoed in a while, the whole gang was very forgiving as we slowly meandered to them to give them a love tap as we figured out how to steer (as Mike said, very different from sailing LOL).  If we could have been captured flipping our canoe over close to shore, you'd be seeing it here in this blog ... in    s   l   o   w  motion, which is what someone had said it looked like when it happened. 

The fresh air, the water (no one contracted Beaver Fever), the crackling of the fire as our food was cooked over it (no fire ban that weekend - yee haa), paddle going through the water.  If you're a lover of good coffee, then you will not be disappointed with the filtered water we used to prepare our morning wake up call of the wilds bevy!   What a way to start the day off, #insulinandcoffee!  And of course, sitting on the throne (aka thunderbox) .... ahhhh ... nothing like taking a crap in the woods!

I was surprised that at my age, I  could keep up with some of the younger folks within the crowd.  I was a bit worried and having an anxiety attack as I arrived (it's weird as I'm aging, I find large groups are difficult to handle when I've been to diabetic conventions), along with not knowing anyone.  Luckily, the 14 of us all easily melded together as a team.  Even better, there wasn't much of an age difference that would make me stand out like an old fart in a canoe as well   

So, if you're ever thinking it's too late to try an adventure that may be out of your comfort zone.  I can thoroughly recommend going on this yearly weekend event that CIM holds as well as their other events in North America (not just in Canada, but also in the United States).  I know that despite this only being my second time portaging, I'm wanting to do a longer trip eventually.   

Evidence that someone had a low blood sugar - can you spot the gumdrop?

And before I go, all I want to say is " Eat your heart out Gordon Ramsey, cooking over a campfire is the best way to eat ". One of the meals that we had over the weekend, was so delicious, that many of us asked for the recipe.  Thank you, Amy Burrows, for showing us you can eat well when canoe tripping and don't have refrigeration!  

Portage Heaven Buddha Bowl 

2 tablespoons vegetable oil
2 cups cubed extra-firm tofu
8 cups hot cooked brown rice
2 cups grated carrots
2 cups grated beets
2 cups packed baby spinach leaves
2 cups slivered almonds toasted

-- Glory Bowl Dressing --

1/2 cup nutritional yeast flakes
1/3 cup Tamari
1/3 cup soy sauce
1/3 cup apple cider vinegar
1/3 cup water
2 tablespoons tahini
2 cloves garlic crushed
1 1/2 cup vegetable oil

Really, no directions needed.  It's that easy!!!  And we used rice that we had leftover from the previous nights' dinner.  This feeds a crowd of 15 hungry paddlers easily!  Bon appetite!

Time to head back to city life ... waaahhhhh

Psst, if you're wanting to attend one of the Connected in Motion 2019 SlipStream Events -this check out this link for more info.  Meeting up with fellow T1D's over a weekend event and chill around an open campfire.   You still have time to register and I may see you there (you could be bunk mates with me and Sock Monkey). 

Big Blue and Bowie - in bed together forever

UPDATED August 27, 2017 (see Note 1)

So, if you haven't read my blog post about Big Blue, my Animas Vibe's first week of use, then hop on over to this LINK.  The rest of what I write about below will make more sense.  I'll try to keep this short and sweet since hey, it's TGIF!   Let the weekend begin!!!

After posting the blog on my disappointment with the accuracy of Big Blue who has CGM capability (this sounds like the Six Million Dollar man ... we have the technology ) along with a few other quirks.  Here's my update.

I cannot return the Vibe.  Plain and simple according to the Animas representative that came by after my blog went around the globe.   Due to the ADP program in Ontario, you cannot just pick and choose a pump, then decide it's not to your taste.   A wee bit disappointed with that, but the rep made things abit easier with the following suggestions that I will have to live with for the next 5+ years, or until Big Blue bites the dust.

The reps suggestion?  While I still have a functioning Ping aka Ziggy.  When I want to wear something slinky that I can't access my insulin pump in order to bolus, etc.  Simply use Ziggy along side Stardust my One Touch blood meter with Bowie my Dexcom receiver.  Simply remove insulin cartridge from Big Blue - plop it into Ziggy.  Best of both worlds as the rep put it!

We also came to the decision that due to incorrect sensor placement on arm, that this was the reason for the Vibe CGM and Dexcom receiver being off that I wrote in my previous blog.  I can agree on that after removing the sensor due to the fact that it was not sticking well on my arm and sensor wire looking not too straight. We think it was barely in my skin.  Plus, I had placed the sensor incorrectly, since the muscles in my arm when it's placed HORIZONTALLY, tends to pull the wire back/forth, cause sensor tape to not stick as well.

Silly me, deciding to try the horizontal placement for a change of pace, thinking well, if it works great on my "flat" stomach, why not the arm too?  NOPE!  Muscle, muscle, muscle ... pull ... pull ... pull. The rep of course reminded me that we are not supposed to place our sensor anywhere else but our stomach, and basically just pretends he doesn't know that many of us do things with our medical devices that are not approved of in the manual.

So, after placing a new sensor in ... correctly ... this is where I found both the Vibe and the Dexcom receiver were spot on with each other.  Cancel that FAIL quote from the previous blog!

So, I am now only using my Vibe for seeing my trend (when you press the Contrast button, you can see the last CGM screen viewed).  I tend to to like to see the current blood sugar, that shows which way the arrows are going, along with the IOB (Insulin-On-Board).  Bowie, takes care of all my other needs for info on my blood sugar trend, etc.

NOTE 1:  August 27, 2017 - since writing this blog - I have decided to no longer use Bowie - since often I lose him  ... urrrhhh.  I've gotten used to relying on the vibrations/alarm set up on the Vibe ... though I may eventually go back to Bowie ... since again ... the alarms on the receiver are easier to determine if it's a LOW/HIGH .

Handy Trend Arrow Chart from Animas representative

The trend, and other information that is shown on Bowie aka the Dexcom receiver.  It is far is better for viewing than the Vibe pump screen. Also, when it comes to alarms, as stated in previous blog, hands down for Bowie who sings like a Hero in my eyes to save me from either going too low or too high.

Remember use me as an example .... don't rush in too fast for something until you do your research, which I should have done!  You might regret it!  DOH!!!

First week with Animas Vibe aka Big Blue

UPDATED August 27, 2017 (see Note 1)

I finally took advantage of the ADP program here in Ontario and now have been in possession of Big Blue .. aka an Animas VIBE and CGM System.  The program pays for all age groups of Type 1 diabetics in the province of Ontario for the pump and $2,500 a year towards pump supplies.  So, no more paying outright for my pump ... and making Visa travel reward miles on the purchase - boo! hoo! The pump warranty is for 5 years rather than the 4, when I would purchase my pump privately, so win win.  So until the pump breaks down, it's my buddy until it's death date of ... get this ... 2040!!!  Unlike my previous pump, a ONE TOUCH Ping aka Ziggy Stardust ... his death date IS December 31, 2022.  I'm still keeping Ziggy, as a back up for holiday until then.  He served me well!  I just wanted to have the pump and CGM integration that the VIBE offers.

------

A few people have written to me privately, asking me what I think of the Vibe, and after a week of using it, here's my honest thoughts.  I'll keep this as easy to understand as possible.  If it doesn't make sense, comment below and I'll do my best to answer you.

Comparison of Ziggy and Big Blue

PROS:

• The pump is a little bit bigger then the ONE TOUCH PING, so the screen is abit larger.  Probably due to housing more hardware inside due to the CGM being incorporated into it.  See below in CONS.    NOTE 1: After meet up with Animas rep - there is NO size difference - both the way (even they were fooled by the way the picture turned out).
• When it comes to entering the TOTAL that is shown on your screen when doing an EzCarb or EzBg.  You no longer have to scroll the numbers from 0.  If your TOTAL is showing 3.0 units ... as soon as you touch the OK and the UP BUTTON ... you are at 3.0 instantly.  It is still taking me time to remember this ... since you can rapidly go up to 6.0 in a nanosecond.
• You have your CGM display available to you.  See below in CONS.
• You can use any blood meter you want to - which in my case when I was using the 2020 - was FreeStyle Lite which uses the smallest droplet of blood and according to research has better accuracy of many other meters on the market (plus the strips are less expensive - a big factor for me come September when I no longer have work coverage).

CONS or as I call it FAIL:

• I'm finding the screen keys abit less soft, so you do have to press abit harder.  For someone with arthritis (which I have), it could be problematic in time.  Also, I wonder if the plastic on the buttons is more hardier, since the 2020 and PING seemed to wear down faster.  I never had these problems, but have heard from others who did.  Again, warranty for most people should cover this problem if it occurs.
• For the CGM ALARM settings -  they suck compare to the DEXCOM Receiver!  You only have options similar to what you use on your insulin pump portion for ALARM settings.  It's annoying as all hell when you're driving, and it's going off on some hissy fit.  Hard to distinguish one from the other.   FAIL!!!
• Accuracy between the DEXCOM receiver and the VIBE are not as accurate as I thought.  I had started them both off within 5 seconds of each other when booting them off so that Calibration times would coordinate.  The DEXCOM receiver wins hands down.  FAIL!
• You cannot set the REMINDER time on the PING for HYPO any lower than 30 minutes.  The receiver you can enter in as low as 15.  Not good in my opinion.  This also surprised my CDE's when they witnessed me experiencing a 2.8 while in their office (and I amazed them further by acting the same way ... cool and under control ... actually I was sweating like a pig ... and sadly ... the alarms on the VIBE did not forewarn me of my rapid decline in blood sugar like my DEXCOM receiver does.  FAIL!
• Too many screens to go though to get to the CGM area.  DEXCOM receiver wins hands down.
• No ability on the VIBE to enter in Activity or additional Insulin perhaps given by IM for high blood sugar (a no no still in my endo and CDE's eyes ... I swear I have whip marks on my behind from them!!!).  DEXCOM receiver - wins hands down.
• I am now limited to wearing separates again when it comes to being a Fashionista, no remote for pump entry for blood sugars, and also if you rely on pump soley for CGM reading ... you get it ... I dare you to look at this naughty picture!!

My lust for the ANIMAS Vibe was bigger than my brain!     

CONCLUSION:

If you are with the ONE TOUCH PING ... stick with it.  The only thing that got me into going onto the VIBE was the representative wiggling a carrot in my face at the yearly Insulin Pump meeting in March that all ADP participants have to attend ...  that for only $800 I could get a box of sensors, transmitter, and receiver IF I purchased the VIBE soon (Animas Canada is no longer going to be selling Dexcom supplies as of this summer, so they're getting rid of all their G4 stock).  As many of you know,  I live on handouts of expired sensors, receivers (and I even have a transmitter that may still have life in it from someone who went onto a G5 system) due to paying out of pocket.  Here I was with lust in my eyes for this great deal (as bad as I am when I see a deal in a thrift shop, but this is a life saving article that isn't $2!!).

A week later .... this is how I feel ... blah ... and wishing maybe I'd just stuck with good old Ziggy and his  side kick Stardust (the ONE TOUCH blood meter)  who sucks up alot of blood, but means I don't have to pull my pump out all the time to bolus, look at CGM reading.  Really fun when you're wearing a dress I'm telling you, make sure you are wearing clean, unholey underwear!!) - and if you didn't click on the "naughty" picture in the CONS area ... scroll back up - I double dare you!!

Sigh - I should really be more serious when I write shouldn't I?  Chin up and all that stuff.

Anyhow, I've turned off the CGM on my Big Blue, gone back to the DEXCOM receiver, that I've had for almost 4 years that is still working strong.  I had hoped with the VIBE that I would not have to use it, but I guess I was spoiled by using the receiver, and it works, it notifies me when it's unhappy with me.  Perhaps if I was a newbie to the CGM system on the pump, and had nothing to compare it to, then I'd not be writing this.  I wouldn't know any better.

In hindsight, I should have just waited it out until the end of my ONE TOUCH PING life when perhaps updates could have been made on the programming of the VIBE.  I'm going to contact both my CDE and Animas (they'll be getting a link to this blog) next week to see what we can do.  I'll keep you posted in upcoming blogs on my progress and I hope it's good news.

By Manny Hernandez - 2008 - Hope: Diabetes Supplies Art 

I want you to have a great colonoscopy

On July 4th (no fireworks that day, sorry I'm Canadian) I finally got around to my 2^nd colonoscopy (I have them done due to my Dad having colon cancer).  My previous one that was done back in Quebec was an easy process, with doing that usual day before clean out, liquid diet (yes, beer counts as it’s a clear liquid).  When it was done (I wasn't on the pump then just my "poor man's pump" ), I was hooked up to an IV with a slow drip of insulin, no sedation, and got to watch the whole show of my squeaky clean A-hole on a screen.  Easy peasy – though they wouldn’t give me a copy of the video to share with friends on the big screen as we all ate popcorn!  I remember being so hungry, that a greasy breakfast was a must for me, and I was able to resume back to work the next day.

When I’d left Quebec last summer, I was still waiting to be called up for my 2^nd colonoscopy which already was going into year 3.  Ontario seems to be alot better with wait times as I was referred  after going to a local walk-in clinic.  Night and day over Quebec health care system where the waiting game can go on for years.

This time, totally different, starting with the prep the day before.  It was a day of not being  actually able to work, despite sitting on my behind for the majority of one of my jobs I do.  Perhaps due to being a wee bit younger last time, what I'd used to "process" the goop out of me, who knows.  All I could do the day before was be a slug and I now understand why people don't like the prep bit - I feel for you all now.

The other difference this time, I was to be sedated aka " conscious sedation ".  I was told that I could not wear my insulin pump for this 10 minute procedure – but to give ½ my usual dose that AM (this was stated on the hospital form – obviously insulin pumps haven’t been updated onto the form).  I had planned on just giving a unit of rapid insulin in my pump, and then disengaging, but with some of the comments on my Facebook posts of how they'd kept them on during this procedure,  I convinced the RN that by lowering my basal rate of my pump by 50% things would all be good.  I decided at the last minute though, with my blood sugar showing 7.1 mmol/dl / 128 mg/dl – that I’d leave it be, and not reduce the basal.

I didn’t tell them this …

After a weigh in, that I insisted on them doing since they asked me what my weight was, and I told them I really didn’t know  (they wanted me to guess … it’s like … WTF?).  I found I'd lost 15 pounds (maybe the previous day of fasting helped shed some?) - and now I understand why my pants keep on falling down.  I figured the amount of sedation would be based on my weight (I have later found out since, that there is a limit to how much they give a patient (Versed and Fentanyl were used on me). 

Then came the " let’s find a juicy vein ".  Two RN's tried to find one in my forearm (and they're commenting on how tough my skin is … hello … diabetic of ½ a century … we have tough skin). They give up despite my saying my hand is the best bet but the clock is ticking for the next patient to be processed and they're understaffed.

So, it’s wheel the patient, moi, into the OR.  Where the doctor takes over in the game of finding a vein in my hand, and even better, he uses a butterfly needle, which just glides into that juicy plump vein in my hand (I sound like a junkie don’t I? LOL).   Then its lights out, night night Pussy Cat … despite being told by RN that I would be awake during the procedure.  No watching the screen like  the classic 1960's movie The Fantastic Voyage  ... I'm out ... cold ... no seeing the bowels of the Earth.

I awoke, wondering WTF, ½ an hour had passed since being wheeled in, and I was being asked if I wanted any biscuits and water.  It’s like, yes please.  Sadly, within 5 minutes, I was trying to be polite about requesting a … fetch me a bucket Garcon … and just about hopped out of the bed to go searching.  At that point, after the hurl session or two,  the RN brought me my clothing and I wobbly got dressed, texted my DH to come and fetch me.  I'm still amazed how I  managed to get myself out the right door to where he picked me up, I was that out of it and wondered why no one was asking if I needed a wheel chair.  For the next 3 days that was how I was, the effects of the sedation making me feel like I was having a hangover from Hell going between hurling, coldness, nonstop sleeping, and eating was a chore, but wait … this isn’t the end of the story yet of my anal probe.

Are you wondering about the highlighted bit above “I didn’t tell them this …”?

Stay tuned for the 2^nd part of this blog, and be ready to be as surprised as I was …

Psst,  remember, if you don't follow me on Blogger, maybe now's the time to get cracking ... so you can keep up with my occasional blogs that come forth from my sponge brain!!!  I always aim to make them both educational and entertaining!

Canadian Diabetes Association #T1DExpo 2016

~ Steve Edelman ~

Those words above I think are what really made the 1st Canadian Diabetes Association (CDA) Type 1 Diabetes Expo (#T1DExpo) come to full realisation with 700 participants (and all adults - whoo! whoo!)  involved in this event that was held in Toronto.  Note:   I have since found out that similar events have been going on by The Charles H. Best Diabetes Center in Brooklin, Ontario - and their next one is taking place on May 6th in Ajax, Ontario with similar topic discussions).

I’d say about ½ the participants were all T1D’s and at least 10 of us with +50 years of diagnosis and all in good health!  I’ve never been to a Canadian event that was aimed just at T1D’s .  I didn’t have to travel by air or too long a distance to attend, and be with people who aren’t all insured American with devices that we don’t have here in our country or the ability to afford them.  Yes, we Canadians vary much from our friends south of the border who sometimes seem to boast without thinking of their  ability to have a new insulin pump (after they've decided the one they just received isn't their cup of tea after a few months) or CGM.  Here in Canada, we wonder if we can ever try these devices they post about, let alone find a private/work insurance provider and/or province that will help fund it.

Chicken !!! (I just about swerved the car off the road when my friend screamed this out when driving through Port Perry) !  Yes, a fairly almost 9 hour drive to get to Barrie from Cornwall (a few pit stops along the way).  It made for some interesting experiences along the way with a T1D  friend of mine that I picked up in Kingston.  

Now on to the serious stuff .. the #T1DExpo ...

What did I learn from this conference that I didn't already know about?   I did find out  about a study taking place  called Ease-2  for an oral medicine that will be used in combination with insulin to help regulate blood sugars better in T1D.  I may contact the two researchers, Nancy Cardinez and Bruce Perkins (if the hyperlink above does not work for you - click on the following link for more information - https://www.mountsinai.on.ca/care/lscd/research-studies)

One of the speakers was Dr. Steve Edelman, who I've heard of through the grapevine.  He's had T1D since he was 15 - and along with his fellow co-worker who is also a T1D, Dr. Jeremy Pettus ... they created some great laughs along with getting to the more serious side of diabetes management.  Both work at TCOYD based in San Diego and put out some great videos (Steve Edelman went through the "warranty program" live at this conference - but you can get a jist of it at this link ). 

What was interesting with the two speakers above?  No pushing of whether insulin pumping or injections was the way to control your diabetes, it is whatever works for you to keep you in control of your health.   American conferences I've attended in the past, seem to push pump technology, but that is probably much due again to the way American health system works hand in hand with the insurance/pharmaceutical/medical supplier companies.

The emphasis though ?  Very strong on the use of the CGM, and both Americans did state that they understood that not many Canadians have insurance coverage for these devices.  Again, that south / north border thing with our two countries - we can only dream of using a CGM at times, unless you've lucked in on "donations".  Like myself, they stated that if they had a choice of either a pump or a CGM .... the CGM would win hands down.  I found that pretty amazing coming from them, and glad to see others thinking the same way (my next blog post will expand abit more on this MDI vs pump after a recent endo visit).

The one interesting thing, I spoke to a few diabetics who had been diagnosed 40+ years ago, much like myself, and when asking them about insulin pumping, I found it abit odd to hear that they were not interested at least in giving it a try.  To live in a province that funds pumping defies my sponge brain as to why not give it a go and the reason I moved here to Ontario!

Overall though for a first time attempt at encompassing a group of T1D's compared to the usual T2D crowd that many of us find CDA cater to ... it was a pretty amazing.  The only thing that many of us as T1D's found difficult though was the lack of carb counts on the foods we were eating, along with lack of low carb foods (which hopefully for future expos they're holding this year will be better organised).  Many of us were disappointed in that small aspect of the whole day, and paid dearly for it with blood sugars going abit whacky.  

Also, I've heard through the grapevine, that CDA will hold it in a bigger venue for next year, due to the size of the crowd (the cut off was originally 500), which made it difficult to get into the exhibition area if you weren't into being squishy and friendly with everyone as you tried to get information.

Thank you CDA and their volunteers who without them events like this wouldn't go as smoothly.  For  those of you wondering if a #T1Dexpo will be coming to a town near you ... check out this link - it could be closer then you think !!!  

I Wanna Be a Pole Dancer

Yes, I do like to joke about taking up this hobby when I retire in some of the places I post at in the social media world for diabetes, I'm looking as this being one way to be able to afford my diabetes gadgets that help me to stay in control when I am no longer working (retirement is fast looming up after 35 years as a 9-5er).

So come into my dream world, and dance away with me ..... 'cause  "I wanna be yours" ...

Three weeks ago, I had a second go with an MRI scan that had been delayed from a previous visit when I found out ... a Dexcom sensor cannot be worn, even if it's not placed anywhere near where the portion of your body is being scanned (my knee has been acting up over the last 3 years).  The problem was the day before I had only placed a new sensor on my upper body, which usually lasts an average of a month.  No insurance coverage for the CGM (and I'm not alone in paying out of pocket) meant I wasn't about to rip it off.  So my file was left open, and viola, 4 weeks later ... I was back without any piece of metal on/in my body (I didn't know tattoos can react to MRI's as well - and I have one). The things you learn, but in reality, these questions should be given to the patient prior to making an appointment, not on the day you arrive.

So, after the 2nd MRI (I twitched alot even though I tried to be still during the 20 minute scan), I went back home to place a new sensor on.  This time, it wasn't going to be on my regular real estate  portion on my body which is either my stomach, upper back, upper thigh or arms.  I had seen a post from JeVonda Flint who was diagnosed with Type 1 diabetes (T1D) 6 years ago.  She places her sensor on her calf, and finds it works well for her there.  So between myself and another T1D here in Canada, I decided I'd give a try.

Yes, I was abit terrified about placing it into what is abit of a muscular portion of my leg (actually I think there's alot of fat, if I was a chicken or a turkey, I'd feed a family of 4 easily).  The good thing, I felt nothing when inserting it.  If any of you have seen the introducer needle for the Dexcom sensor, it looks abit scary.  I felt nothing at all, and even thought to myself, "did I do it properly - did it go in?".

Two hours later, calibration done (you have to take 2 blood tests to get the CGM going) ... I was all set to see if the sensor would work as well, and as long on my body as the other sites do that I place it in.

Sadly, it didn't ... by Day 3,  I was seeing gaps on the trend line or 1/2 hour here and there, along with a few other warnings (e.g. having to restart sensor due to sensor failed warnings - and I tried twice that day to restart).   I realised it wasn't worth continuing to try to keep it on.

The only three factors that I can come up with:

1. When coming back from a walk as well that day, had my boot cuff (yes, it was still cool here in Canada 3 weeks ago), did I perhaps rub on the sensor too much since it's advised not to have anything bump up against it).
2. The sensor was expired and this time my luck ran out?  The majority of the time 2 out of 3 sensors I use are expired and work fine  (I can only afford to buy new sensors a few times a year due to cost, once in a blue moon I get a lovely package of expired sensors from American diabetics who do have insurance coverage).
3. Is my receiver starting to maybe go (I haven't had any warnings yet that should say it's on going to stop).  It's getting close to being 2 years, again, the receiver was gifted to me, and I really have no idea of how much it was used prior to my receiving it.  I have already replaced the transmitter portion that is inserted into the sensor, and so far, it's gone past the 6 months time frame. So eventually, this will go as well and I'll have to buy a new one.

I'm now approaching into my 3rd week without a sensor, and in the beginning I did miss it, but one thing I didn't was how it affects my sleep at night with alarming (combine that with menopause hot flashes, etc. I don't sleep like a cute little kitty).  The same goes with my insulin pump as well, that I'm still not reattached to since the end of January when I went on my holidays to Cuba.

The one thing with not having the sensor on,  I'm not constantly obsessing about the trend of my blood sugars during this period, and from others I have spoken to who wear this device, they can be checking it alot compared to my once in an hour check up.  Along with comparing it against my blood meter (and with the calf placement I was doing check up alot due to how it was not as close to the real thing from the blood meter).  I'm very fortunate that I can still detect when I'm going low (though I think wearing the CGM has made me abit lazy since I woke up to a few in the 2 mmol/l range ... which I never used to do).  Also, I know for some die hard CGMS wearers,  it can be dangerous due to their not having hypoglycemic unawareness!

So, yes, I will be placing a sensor on again, probably next week, and I will probably not be placing it back on my calf again due to the results I had with first placement.  I'll stick to my usual spots, and know that I will hopefully get my 3-4 weeks out of the sensor.  Maybe if I had coverage, I'd be different with not being so anal about keeping the sensor in place, but when you're not quite a pro a pole dancing, well, a cat girls gotta do what a girls gotta do.

Oh, and the outcome of the MRI, despite my twitching knee during the whole process?  I had been trying for past 3 years in Quebec with no success of seeing a specialist (I tried but kept on being told to call back in 6 months and there might be an opening) and  GP who looked at my MRI in the beginning, said it was my age and  arthritis.   Finally, I've been diagnosed by an orthopaedic surgeon  -  with a torn meniscus  - and am now on waiting list for surgery - whoo! whoo!.  It'll be nice to have a knee that doesn't go wonky on me - but at least I finally got to see someone who knows their stuff (and they're interested in what I do within the DOC as well)!

The pros/cons of diabetes costs in Ontario

I am fast learning 6 months after my move from Quebec, that though we may pay less in provincial taxes, some costs are higher.  Though the one pro so far here in the small town I live in … when I go to walk in clinic (wait time is far less than in Quebec but for surgical procedures about the same according to 2014 statistics).  This is where things excel, along with referral to a doctor being quick when going to the clinic here in my town.  So I guess it all depends on what is more important to the individual.  For myself though at the moment, seeing my salary and eventually savings when I retire go towards funding the pharmaceutical companies due to my type 1 diabetes, is getting me abit down.  Luckily, my Dad taught me early on in age, whatever I was making, even at $7/ – to save for a rainy day - though I don't know if he meant it to be used on medical expenditures).

I’m finding that prescription costs in the small town I live in are much higher than  in Quebec.  Most of my prescriptions costs are up by $10-$20 more, along with a prescription fee being tacked onto that price as well.  It doesn’t help, living in a smaller town, as my pharmacist explained when I switched the brand of pen needle I use to one that is $25 less.  It’s all about how much they, the pharmacy buys for their clients to use, that controls the prices we pay due to volume.   It’s like really?  So, maybe moving my prescriptions to a bigger city (making a trip every 3 months) – is the way to go while I still have wheels. 

So, some of my little tricks I’m learning in order to feel like I have some sort of control as to how much the big pharmaceutical companies/pharmacy makes from me is to shell out for 3 months supplies of my prescriptions here in Ontario.  This makes the prescription fee less expensive (ohhh and I earn more travel rewards faster on my credit card BUT just have to pay it off in time before I get hit with interest).  Prescription fees in the town I live in can range from $8.41 up to $20.  The reason for the variance floors me to no end and sadly to make the drive to Ottawa, where Costco only charges $4 (remember – you do not need to be a member there to use the prescription service).  I did try to see if the current pharmacy I go to could match Costco’s … but nope … not possible.

Now, if I wasn’t making enough, then it would be a different case with being on the Trillium prescription plan here in Ontario.   I’ve been working on/off over the past 40 years, so I’ll never qualify unless I declare bankruptcy or some other way.  So there’s no win win situation – as one retired person put it to me– if they had to pay out what I do for my diabetes health – they’d not be able to go on their holidays.  That sort of hit me hard with that remark, and even worse was being told that having the insulin pump and CGM would be something they wouldn’t have in order to still do what they want to do.  Yuppers, I can see some of you stunned at that too.  If only they knew what these devices we now have to keep us well controlled can do to make our lives more productive (hey – we’re paying taxes to help pay for their pensions, etc.).  Now, if they’re reading this, maybe my they’ll rethink their comment.

The magic age of 65 is still abit of a ways away, but the main earner of the family after 35 years of working is giving the heave hoe to his work place, since if he stays on, he'll still be paying into a pension fund that won't mean he gets more if he leaves later.   So, while we both have good health, hoping to take advantage of some time off before we are sitting in our rocking chairs watching reruns.  I'm also  hopefully still alive and kicking to take advantage of the services my parents boast about.  

Yes, I’m freaked out about getting old (I can live with the aching knee joints and taking naps in the afternoon sun on the porch) – it’s all about the cost of staying healthy with my diabetes and trying to enjoy the golden years!  Anxiety over this is something I have to keep on pushing away and telling it to F-off!!  

The other option is to move to another province to get more bang for our bucks ( New Brunswick has been calling me for a few years and we are going there in June to check it out - compare it's medical coverage - cost of living in that part of the east coast of Canada ).  

NB:  If you’ve never applied for the Disability Tax Credit that I’d written about in the forums at Diabetes1.org … then check out how to go about it, along with other tips on how to save at the Diabetes Advocacy website link that you will find here. 

Falling through the cracks of a small town hospital

Falling through the cracks of the Cornwall Community Hospital (CCH) system … that’s the only way I can come up with an explanation of what happened with my insulin coverage last week during a 4-5 hour period when I was asked to stop my insulin pump from delivery insulin during surgery.  I put Ziggy into 0% basal rate for 4 hours – but now think I should have lied and just left him on. 

The Womb With A View

I think due to the diagnosis 2 weeks after my initial visit to ER for heavy bleeding and I was in menopause stage of life, along with the fast turnaround of 2 weeks after that for a spot on the slice and dice table this may have resulted in mistakes being made in what occurred that day with Pre-Op / miscommunication with the CDE’s / gas woman aka anesthesiologist, etc.  

Was pre-op done to close to the surgery date?

In past surgeries (e.g. mastectomy done in 2007 for diabetic mastopathy ), the Pre-Op, meeting up with endo team, was all done within 2 or more weeks of the surgery date.  In my case at CCH, pre-op was done 2 days before the surgery day  ( DH came along ).  The RN didn’t say anything about whether pump would be allowed or not, but took down that I wore an insulin pump,along with my total basal rate, average basal rate (this same information was given to the Pharmacist from the CCH the next day who said it was unusual for them to be left out of the loop for pre-op).   The RN was fully aware that I was being seen by the Diabetic Clinic within CCH and I “assumed” they would be contacted for any help (they were already aware of my upcoming surgery by an email I’d sent to them).    

Was any blood sugar testing taken during the surgery and didn’t

my CGMS alarms make them aware?

Sadly, I didn’t think of the CDE statement from an email earlier during the week when I’d asked her about wearing the insulin pump during the surgery …  

“do you have a protocol for not wearing pump during surgery”

Her response to my query, with no suggestions,  made it obviously clear to me I was on my own with handling my diabetes control in the hospital (I have since learned she expected me to respond back with my answer). 

I assumed that when the anesthesiologist (gas woman) firmly told me that she would not continue if I kept the pump on, that insulin would be at least provided in the drip.  This was told to me as I was already being strapped down to go to la la land of no pain and she meant business (she wasn’t happy with where the RN had set up the drip, but my veins are sparse and RN didn’t go to my hand which has LOTS of plump veins and has been used in the past by the blood takers).  So, basically, I had no time to say, “ let me get my overnight bag and shoot up with Lantus “.   Yes, I was in a tough position at that point, trying not to panic.  I had come prepared, but not at the last minute when the surgeon’s clock is ticking for his other scheduled patients that were behind me!!  Gulp!!

My hospital gown had the washy washy instructions to ensure no evil germs develop!

Granted this was my first major operation using an insulin pump.  Previously, I was on MDI, and with pre-op it was always determined that I do my regular long acting insulin shot and that after surgery that I took over my diabetes control.  Did my being on an insulin pump throw off the pre-op and pharmacist?  This is where both my husband and I wonder …

was any insulin drip given during the 4-5 hours I was under their care?

My darling husband (DH) had been contacted at noon time as I was being wheeled into my room after being in recovery (surgery had started between 0730 – 0800 ) and he arrived about an hour later to hear my story about the blood sugar reading of 22 mmol/l (396 mg/dl) and how the staff had determined I should be given 10 units of rapid insulin.  I vaguely remember all this happening, and again, have no time reference.  I hope I didn’t yell, but I told them it was too much.  I remember being asked what they should give me and in my state of mind was calculating 1 unit of insulin would be lower me down 3.5 mmol/l (63 mg/dl) and told them to give me 3.5 units (if I’d been more with it I should have said 5 units).  I don’t even recall them giving me the injection. 

I was having to rely on someone else to take care of my diabetic care at this point that

had wanted to inject me with 10 units of insulin

My DH at that point looked at Bowie my CGMS and it was alarming like crazy (we are wondering now if the trainee RN who was holding him during surgery noticed this).    Bowie does not like being high, and was still registering at 22 mmol/l (395 mg/dl).  At this point, having my DH by my side, I was more with it and did my own finger stick test which showed I was around 14 mmol/l (252 mg/dl).  Obviously the insulin was working (maybe they did an intramuscular injection (IM) into my arm to make the insulin work faster … which is what I do when my BG is that high – but due to no time frame of injection I’m unable to figure it out). 

With insulin coverage for a T1D it’s all about what TIME insulin is giving … 

method of injection ... site it`s injected into …

This is where even more confusion starts is that the RN that was speaking with my husband didn’t realise that my pump was functioning.  Again, either I did not explain myself properly to the gas woman / RN when turning my basal rate off for the 4 hour surgery time.

So, even now as I compose this blog, trying to put together what occurred, it seems like a dream

So, DiabetesMine ( @samanthachan at Instagram)  … I told you the true story would come  with the picture that you asked permission to use at the Diabetes Innovations Summit at Stanford in November.  Even though the trainee RN who held Bowie during surgery had been warned about what would occur if my BG’s went up or down with him alarming.  I think he was ignored OR even worse case scenario when he was finally looked at, they assumed that that was the correct blood sugar number.  That is even after I  had told her and various staff earlier and during my 2 day stay that the CGMS reading HAS TO BE verified by a blood meter.  The fingertip NEVER LIES when it comes to real time blood sugar number. 

Victorious thinking I`d be allowed to use pump during OR ... NOT

It’ll always be a mystery to me … and personally I will not return to CCH for any surgical performance if I cannot go another route (see note below).  This is after speaking to other residents where I live, they avoid it at all costs.  Though if it’s a situation where I’m not able to drive to the next closest hospital ( Winchester District Memorial Hospital has been recommended to me by many people in Cornwall ), I just hope/pray that I have someone on my side (my DH or another T1D) able to ensure that my diabetes health care does not get lost in the cracks like it did with this hospital experience.

NOTE:  The one thing I have learned out of this experience is that hospitals in Ontario have different ratings (and probably in other provinces of Canada).  A few members from the CCH Diabetic Clinic came to speak to me due to what had occurred the day before with surgery.  They had stated that CCH is a #1 hospital (I have tried to find anything pertaining to what they had told me online but have come up empty handed so this is “my version” of the “rating system”).  If my surgery had been performed at either Kingston or Ottawa, which are larger populated areas, then  insulin pumps would be more accepted and understood by the medical staff members, and perhaps allowed to remain on in the OR. 

Day after the surgery - attempting to drink a Timmy`s

My heart breaks for a T1D in a coma for past year

A few days ago – on my Facebook and Twitter pages – I made a statement about a T1D, an RN, being in a coma for almost a year.   I was in an emotional state and close to people who knew her – to really look at both sides of what actually happened.  In reality – we may never know the truth – due to lawsuit that is in progress ....

When I was around 8 and still learning the ropes of diabetes a few years after my diagnosis in the 60's, I remember a friend of mine, Karen Chin.  Her Dad had a car that had cruise control.  In my mind, I envisioned Karen and her family, on a road trip, with her Dad sitting in the driver’s seat, no hands on the wheels and simply letting the car do its thing and they’d get from A to B safe and sound.  Was it due to my watching Star Trek?   The Jetson’s?  My HIGHLY overactive imagination?  In the end, I’m not sure when, maybe when I started to grow up (me? Grow up) – I realised – there was more to “cruise control”.  A child’s imagination can be so funny at times.  Thinking about this yesterday, got me thinking about the devices we use for our diabetes control – aka the insulin pump that has been around since 1963 (a HUGE backpack version).

Early insulin pumps - a cry from what we wear today

In the past, I’ve been contacted by people who have had pump failures and written about at Diabetes1.org and in other diabetic forums on the Internet. I’ve felt privileged over the years to tell their stories – and some people who have read them – get very upset with the fact that the pump manufacturer is being pointed at as the bad guy.  From what I had heard from families – and the testing of the pump by third parties – the finger was seemed to point at the manufacturer – not the user – but in the case of what I heard this week – my mind is reeling in all the what if’s – that it’s been difficult to concentrate on work.

All I can say is – that some of us have come to the conclusion is due to mass production that society now expects – problems WILL occur – a pump will fail - in a perfect world it shouldn't happen – but it does from time to time.  I've never been able to find statistics on how often this occurs – and perhaps someone reading this knows more than I do – but still – where is the line drawn for "X out of 100" pumps – to make the users of pumps be concerned.

~~~~~~~~~~~~~~ 

I was at my first local insulin pump meeting since 2007 – in the quaint town of Cornwall, Ontario.  It was a small group, of  6 adults, but it was nice to shoot the breeze with others over some of the topics that were brought up for discussion by the ring leader John Caldwell.   Someone mentioned about a T1D woman in a coma – and sent to a rehab centre in Hamilton, Ontario.  They were wondering how she was doing and hoping she was alright. 

I didn’t think anything of it – until the next day – having breakfast at the club house (we’ve been working on our sailboat getting her ready for the season so stay there for overnighters).  As I was talking to one of the club members, doing my calculations on George Michael for my morning pig out.  I mentioned about this woman who was in a coma.  He immediately started to tell me about Amanda* who had been on an insulin pump for many years, that his wife who is an RN, had worked with her, and are close friends with her and her family.   She was diagnosed in her early 20’s.  Last June, it appears that a neighbour came by to drop off a package that contained an insulin pump that had been delivered at their house due to no response at Amanda’s house.   They then discovered later in the day, that the reason for no response to the delivery was she had slipped into a coma.

It was revealed that a call was placed to the pump manufacture by Amanda herself the day before – and this is the reason for the next day delivery of a new pump.  Perhaps her pump was having problems?   I cannot say for sure – but a new pump had arrived.   The history within Amanda’s pump had been wiped of EIGHT HOURS –with no record of anything during that time frame.   If she had stopped the basal due to having problems with blood sugars – or perhaps she bloused – and gave too much insulin – but there is no record according to what I was told in her pump history.   From one of her other pumping friends, I have heard that she did enjoy a glass of wine or two or … if she had been drinking – could she have gone low – and then passed out – then into a coma.   Whatever occurred during that time, we may never know. 

It’s all a question of theories at this point, since everything is hearsay – so saying that the pump had emptied out the full cartridge of insulin – like it has with some of the other T1D’s I’ve written about in the past – we do not know if this occurred to Amanda. 

Her family had her airlifted at some point after – at their own expense – to a state of the art health care centre in Hamilton, Ontario that deals in rehab and brain injuries.  She stayed there for abit – but with not getting any better – the family once again – air lifted her back home.  In the meantime, while dealing with this, Amanda’s only sibling, a brother died.  I mean, how devastating is that?

So, a year later, she is still in a comatose state, her eyes are open, but according to her close friends she is not there and they say she wouldn’t want to be living this way – that she would rather be dead.   That she was once a vibrant woman, full of zest for life floors me as a diabetic.   Her family has now decided to honour her wishes of DNR (Do Not Resuscitate) – as a RN herself – she probably knew how difficult this can be for family members – but watching someone who is not all there – is something I know for myself I would not want to be living that way.

As her friends said to me, seeing her in this state, and knowing her well enough that she would tell them to pull the plug, is heart breaking for them to witness (they see her a few times a week).  They’d even go to prison they were saying, if they could perform this duty.  On top of all of this, Amanda’s only other sibling was killed earlier in the year, so imagine what her parents are going through – this is what breaks my heart the most.

The other thing that has been going through my head with writing this difficult blog – that will leave many of you asking similar questions - perhaps having a closed loop system might be the answer - though I still worry that with more bells and whistles that there is more that can hiccup in the devices we wear.  If Amanda  was unable to respond to her CGMS - if she wore one that is  -  informing her pump that she was going low or high – would the pump have the ability to take over at that point – without her telling it what to do as she was unconscious –  and either shut down or give her more insulin?

Will what really happened ever be revealed about what occurred with her insulin pump, like with the other cases or it was Amanda herself at fault?  Who knows?  The one thing that I did learn is if something like this happens to any of us, with our insulin pumps perhaps going wonky, *** DO NOT GIVE IT TO THE FEDERAL GOVERNMENT TO TEST OR HAND BACK TO THE MANUFACTURER ***.  Get it tested by a third party that is impartial.  Whether this has been done with Amanda’s pump – I’m not sure – but due to the legal actions taking place right now – I’m thinking it has been.

*Name changed to protect privacy