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 !!!  

A River Runs Through It

I’m looking at my CGM aka Bowie, and seeing a good number for a change of pace.  In the area I like it to be.  It’s difficult to attain that perfection in both the blood sugar zone and A1c that seems to plague many of us with diabetes.  It’s not easy, with dealing with other aspects of life that make things go up and down, just like a roller coaster ride.

Since having the surgery last September that resulted in having one of my ovaries removed due to it acting funky wonky, along with removal of fibroids that I knew would eventually shrink down due to menopause without under ongoing surgery … well … that pretty well upset the balance of my body.

Meanwhile, I was still playing around with sorting out the earlier diagnosis in 2014 with a sluggish thyroid aka Hashimoto.  This is something that seems to plague many diabetics since it’s another autoimmune condition.  I thought at that time, I would be put into a looney bin with how that affected my mental health … and along comes menopause!

I just did a months trial to help with the hot flashes that made knowing whether I’m having a low blood sugar or not abit easier.  I can’t say enough about EstroGel (see note below)!   After a few weeks, I was actually experiencing normal sleep, not waking up with a river running through my girls.  Because it feels the same as having a low blood sugar being all clammy, my body has been trained over the past ½ century of having diabetes to wake up and save itself from going too low. 

That’s where the CGM has been helpful, in alarming when it is an actual low, provided that the sensor is behaving (it’s pretty accurate most of the time with lows, not so much when in the higher areas – which luckily isn’t too often).  Still, it’s hard to break out of the habit of waking up, it’s been built into me, but having 1 full week of no waking up was like the best holiday I’ve had in awhile, and I didn’t go to any exotic location except home sweet home.  People who know the value of a good sleep will be nodding in agreement, it makes or breaks you, and as a diabetic, it also effects how your blood sugar readings will be.

It’s a wicked circle – sleep – hormones – everyday life – sometimes taking care of diabetes can be overwhelming.

Sadly, I’m no longer on the EstroGel due to my gyno being abit concerned with the breast cancer aspect of being on hormone replacement therapy (HRT).  I’ve knew the possible side affects of heart attacks, strokes, or blood clots with using the gel, but didn’t realise the cancer bit.  Because of having had diabetic mastopathy, where my breast in the end had to be removed due to unawareness of the condition at the time, he felt that being on hormones might aggravate the condition in the other.  

So, in order to help with the hot flashes, he’s put me on a month’s trial of a low dose antidepressant (I didn’t know this at the time, until getting home and having a mind seizure reading what the drug was supposed to be for since I’m not depressed).  It’s called Paroxetine, and I’ve been given the lowest dose possible of 10 mg which is supposed to help with the serotonin level of your sponge brain, and help with elevating hot flashes and improving sleep.  It takes about a month to take full affect, and I’m only into my 2^nd week.   And so far, the side effects of the drug which scared the bleep out of me, aren’t happening.   There are other similar drugs out there that the pharmacist I spoke to after I flipped out said were more common, but I’m going with what my gyno has recommended that I try out in the meantime.

UPDATE:  Since starting this blog (and exploring some of the aspects of the EstroGel ) I’m realizing that maybe it’s better to stay off of it.  Reports of gaining weight (which I have seen with an increase in my stomach and legs, despite it making for better real estate for injections) along with possible mucking up thyroid, hmmm.  I think the anti-depressant is the better option to be on as long as it works.  So, the original plan that my gyno and I were doing together with investigating how the HRT affects diabetes mastopathy is not going to be an issue that I’m going to look any further into. 

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)!

It's the most wonderful time of the year ... taxation time in Canada

It's that time of the year again ... filing your income taxes here in Canada.

For those of us with health conditions, like myself with Type 1 diabetes, it can be a challenge to figure out what you can claim as " eligible medical expense " ( Lines 330 and 331 ).

Well, help is on the way thanks to Christina from Hamilton who reads my #dblogs from time to time - and had sent me a link from Canada Revenue Agency (CRA) to pass on to you.  It shows what Canadians can claim on our returns if you or your spouse/common-law partner paid for "eligible medical expenses" during the 12-month period ending in 2015 (or any that you did not claim in 2014). Whoo! Whoo!

The info is all pretty well straight forward, and you might even come across a medical expense that you didn't realise you could claim (I saw a few that I didn't know about).  Click on the following link  to find out more - http://www.cra-arc.gc.ca/medical/

And if you've not applied for  the Disability Tax Credit (I've written about it at Diabetes1.org in the past) - then it's time to get cracking!  When I applied for it, I was granted a total of 15 years.  You can find more information about how to proceed with filling out the form through the great website run by Barb Wagstaff at Diabetes Advocacy.

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. 

Low carb recipes for Easter and rutabaga fries

As I'm contemplating where to go this afternoon to have some green beer on St-Patty's day ... I'm realising very quickly that Easter is just around the corner.

I'm always looking for recipes that are low carb and satisfy both myself as a Type 1 diabetic (T1D) and my friends who aren't that often get to sample some of the meals I make.

I probably will be doing something in a crock pot for this year, since I'm not sure what amount of time I will have to play around in the kitchen, so of course, there are many sites out there that have some great meals.  One of my fav's lately due to taking out a book from the library, is Stephanie O'Dea's Make It Fast, Cook It Slow .  It's based on her cooking with a slow cooker for 365 days back in 2007 for her family of 4 (and contains many gluten free recipes as well).   You can find her at A Year of Slow Cooking to find many recipes that are in the book.

Picture courtesy of www.healthdiaries.com

In my search though to find some low carb recipes, not just for Easter, but for all year round noshing, was a post on rutabaga fries.  I have this rutabaga sitting in my cold cellar ready to be used (my original plan was to use it for a vegan cassoulet recipe I like to make up in the crock pot).  Now it has another mission in life.

I've made similar versions of oven fries with sweet potatoes  parsnips, carrots, and find oven baking them (even potatoes if you don't mind sacrificing your insulin for extra carbs) are much healthier in my opinion then the usual method done in deep fat fryers (and I don't possess a deep fryer due to the fear of fat splatting on my skin).

So, without further adieu, click on this link - to see how to serve up a low carb version of the usual potato fries (and remember you can do your own thing with what spices/herbs you might add to the recipe - I'm a tweaker of many recipes that I come across to suit my taste buds) !

And if you're looking for low carb ideas for Easter, check out About.com's low-carb expert Laura Dolson's tips for what to cook up for family and friends at this link.

Sorry if this post makes you drool.

Picture by Olga Shvartsur (aka "Olechka") @2013

When your eyesight is compromised

I’ve been abit quiet lately with both blogging and doing my bit in social media since coming back from the IDF conference in Vancouver.  The main reason, I was burnt from doing a lot of diabetes advocacy in the month of November and not being able to see very well since then due to having some sort of allergic reaction in Vancouver that scared the #@*! out of me since it’s always that “is it due to diabetes?”  So, sadly  this is now making it difficult for me to stare at any gadget with a screen, even with looking away every 20 minutes (this was recommended by my optometrist back in November – and is good advice for EVERYONE who works on a screen or any other type of device).  Even better, to remember to take that 20-20-20 break … you can download a free app to remind you to take eye  breaks called Workrave (sadly not available to Mac).

If any of you follow me on Instagram / Facebook / Twitter you would have seen some of my posts on how the skin around my eyes looked (they freaked out my Mum and Dad to no end).  Whether it was the new BLUE carpeting that was put down in the conference centre for the event that let off various chemicals (this is what one of the RN’s that was a volunteer like me had thought it could be) … the drier air … higher altitude in BC … who knows.  It got to the point where the skin around my eyes was so swollen that I thought I’d need a guide dog to allow me to see.  I was a very scared cat!

My only relief was the daily 2 km walk to the conference and back with the moist Vancouver air hitting my eyes, but things were going from bad to worse on a daily basis (I had the same thing happen in Las Vegas in March at another diabetic conference – so is it a combination of drier climate and being in a conference area that has carpeting ?).  I had one pharmacist telling me to use a cortisone cream around my eyes (carefully – as he advised – it’s not supposed to be placed near eyes) – which did not work at all but actually made it worse.    In the end, a few of the CDE’s that were part of the same volunteer team that I was with, suggested taking an antihistamine, and the pharmacy they directed me to managed to find the right type to use for what I was going through (non drowsy of course so I wouldn’t drift off to la-la-land during the 8-12 hour days that most of us were having at the conference).

Sadly, it’s never quite cleared up completely, so who knows what is causing it (dry air of winter? or natural gas heating which is a new thing to me being from a house that was heated by oil or electricity before?).  I’m just dealing with it as best as I can after going to a local walk in clinic where all they could say was it would get better .  I demanded at that point for a referral to an Allergist which sadly the GP said it may still not help (I see the Allergist at the end of March).  After that, who knows, maybe a dermatologist (there are only 2 in the town I live in) will be the next step to figure out what is causing the skin problems surrounding my eyes (I do have rosacea which can cause problems with your eyes … but as someone suggested it also could be eczema).

All I know, in composing this blog, even with typing with my eyes closed, my eyes are screaming, both inside and out with a feeling like a dry dessert  (and yes I use moisturizing eye drops a lot since the cornealabrasion episode last fall).  The only good thing though, with December’s annual diabetic eye check-up?  My old fart diabetic eyes are doing extremely well with having diabetes since 1967 with not extreme changes..

Eye drop time ... moisturize the parched skin area (good thing - I have no wrinkles with the skin so stretched ... I look 21 again) - take a break from the screen… until next time my readers!