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 !!!  

When life is just a bowl of hormonal chocolate cherries!

I haven’t had much time lately to blog.  Life has been crazy with the move in June,   recent death of my little Mia the black cat (aka my hypo awareness cat ... sigh).   Dealing with diabetes has been the easy thing, especially with the assistance of Bowie aka my Dexcom CGMS.  He’s actually singing away right now as I compose this … telling me I’m low … urrrhh … silly hormones that are going wacky lately (menopause, thyroid, lack of sleep, etc.) making life abit of a roller coaster ride.

What’s going on right now with me is from a recent trip to the ER in the new town I live in the province of Ontario (alot of folks from Quebec come here since the wait time in less – found that interesting).

It all started off with a visit to the CDE’s (Certified Diabetes Educator) team end of August.  They have knowledge of insulin pumping since Ontario has the insulin pump program (I think I qualify – but I just bought a new pump – on my credit card to get 5 years warranty instead of the 4 years Animas offers - having supplies covered would be nice until I need a new pump).  I do have a feeling though that I maybe the first CGMS user they've come across, after meeting up with another T1D pumper the other day, he was wearing a Medtronic pump and didn't know what it was along with Sure-T infusion sets (stainless steel ones) - or what an A1C test meant.   Out came my calling card, and hopefully I can get him to discover the #DOC .

I’ve been in menopause for over a year, hot flashes, emotions up/down/all around (combine that with thyroid that has once again wacky wacky … but no doctor to review TSH levels means I’m on my own until I find a doctor who I can convince I need help).  Well, maybe due to stress of move, etc.  I started to no longer experience those lovely symptoms, and instead, started to bleed heavy like I had during peri-menopause period.  That had lead my gyno in Quebec to decide the fibroids were too big and surgery was to be done (I opted out as you can see by this blog post).

The CDE’s were worried about my blood loss and exhaustion I was experiencing, so told me to go to the walk in clinic next door to the hospital.  I did, but after a 2 hour wait, seeing the head surgeon from the hospital that was doing his stint in the walk in clinic … he told me to go to ER … STAT.  He didn’t like the way things were in the nether regions and my history.

ER … ultrasound … gyno … biopsies … and just 2 weeks ago I got the results that things weren’t right.  We are not sure if the ovaries can be saved.  I am hoping so, but gyno is not sure until he can get to them.  I know at present I have what I call an “Igor” in my left side along with some little stragglers, I feel pregnant and ready to pop.  Dull pain is something I can handle, but it’s getting tiring along with now going back to menopause symptoms again.  Ovey … I feel like a woman!!!

So, really, diabetes is the least of my problems right now.  Being on the insulin pump, along with the CGMS aka Bowie (Continuous Glucose Monitoring System) I am managing to sort of keep things okay in that area of my health.  The rest is crap, but I know it’ll get better.

Pre-op is this Tuesday with surgery scheduled a few days later (yeah – no 6-12 month wait like Quebec).  I am hoping that I’ll be allowed to wear both my pump and CGMS during the operation (LAVH or Laparoscopically Assisted Vaginal Hysterectomy will be performed – less recovery time – yippee!!).  So cross your fingers for me.  I’m hoping that due to the high amount of pump users here in Ontario, that more hospital staff will be familiar with how they work, unlike where I was in Quebec. 

Random thoughts during a heat wave from a diabetic on legal drugs

This is a long intro … the diabetes stuff comes in a afterwards …. I normally post at Diabetes1.org ... but wanted to take a break from that ... and post here for a change of pace (and bigger screen to read my words on as well ).

I’m temporarily a bachelorette; while my DH (darling husband) goes off on a last minute work trip that cut our holiday’s abit short where finally we were getting things unpacked from our move back at the end of June.   I had him take Sock Monkey (SM) with him … so at least SM can enjoy the various “ports of call” that the Challenger 650 is taking them to across the pond.  You can check out the whereabouts of SM at my Flickr account!

Sock Monkey hanging out on the wing of the Challenger 650 he's travelling in

 While I am missing my DH, especially while coping with my little black cat Mia, who underwent a large cyst from her tummy (who I just discovered now is pulling on one her 20 stitches … she made a strange cry … and I leaped out of my chair to see what she was up to).  She now will be forced to wear her Elizabeth collar for the remaining 10 days … sorry kitty kat … but I didn’t fork out almost $800 to bring save you from using 1 of your 9 lives.   Between giving her meds, and like just now, watching/listening to her (I’m a wanna be Cat Whisperer did you know that?) – things are pretty busy.  I am now realising that handling both diabetes and motherhood and everything else that entails having “kids” … I’m not sure if I could have done it.  You were right Mum to tell me to “never have children” … no wonder you started going grey before your time!! I caused it.  Waaaahhhh.

Don't I look cute in my Elizabethan collar or what?

(WARNING - the above paragraph contains A LOT of fun You Tube videos besides silly dribbles of info that is coming out of my adult company starved brain.  Please watch at home in case you are at work … I don’t want you to get the boot out the door).

Now to get onto my main reason for putting my thinking cap on and getting around to a dblogging again since life will eventually settle down in new town, pussycat, etc.  

Yesterday, on a hot and humid day (we currently have a high heat warning) … I ventured out, not by bicycle/foot as I normally do, but via stinky machine … 4 wheel car.  I’m lucky that I don’t really need a car to get around, that was one of the reasons for moving here.  Everything can be walked to / cycled / skateboarded – the benefits of living in a small town.

Now you think you’d see a lot of fit people here? Right?  Sadly, not so.  It’s kind of scary coming from Montreal where I lived it wasn’t something I saw much of.

Of course, where do I go, to escape abit of the heat and humid and duties at home?  WalMart.  The place I swear I hate to frequent if I don’t really have to since they’re forcing a lot of the local businesses to close up.  Sigh.  So, in this case, no malls to walk around in that aren’t an hour’s drive away means … I have to do my “window shopping” in a big box store.

I wonder up and down isles, looking at things to pass the time (hey I need a break from the "kitties").  Talk to a woman who moved from BC to here, and her distaste of the water we have here where we both live (I was looking at the SodaStream at the time, and asked her and her sons about it … the things a question can blossom into).  The water here is highly chlorinated / fluorinated (but I’m researching that with no answers to ascertain oui/non/maybe so).

I then proceeded to look at the various foods contained behind the freezer doors.  Remember, I do not eat prepared/mass produced food too often.  It’s a novelty for me to look at the percentages of fat/carbs/salt in these foods.  I was amazed at what I saw, and thought “OMG … no wonder some folks here are the way they are … this food is EVIL).  The one thing is, food costs here are less expensive than in Montreal … so I don’t really get it.  Even worse, I am seeing so many overweight people or folks using electric scooters, etc.  Some of it is due to the aging population here or perhaps health reasons that mean they cannot walk properly, but I see young folks using them, scary stuff.

Next it was the baking isle.  I still haven’t found the time again to bake my own bread since moving, and the cost of a nice baguette is $1.00 (we go thru’ 1 a week – we aren’t big bread eaters) and is actually a lot less than in Montreal … so factoring in my time, electricity to bake the bread, it’s sadly cheaper to buy mass produced. 

I noticed a woman, probably about my age, looking at baked goods.  Like her, I was overwhelmed by the choices.  I was looking at the carb count and just about fainting.

I said to her, “There’s too much to choose from!” (my mind whirling at Red Velvet cupcakes)

Her reply, “I know, and I’m a diabetic”.

And I said, “So am I, but I can cheat, I’m on insulin!”

From there, I found out she is on insulin.  She only takes it when she has to so she doesn’t go low.  Her doctor told her to keep her blood sugar (#BGNow) levels between 10-13 mmol/l (180-234 mg/dl) and she was used to having readings in the 30’s (540).

I tried to stay calm, as I told her about my CGMS (and the cost just made her eyes go HUGE when I told her along with my 5.1 / 92 #BGNow reading … too low for her) and also showed her Ziggy my insulin pump.  She had never heard/seen these devices.  I started to think a) how long has she been diagnosed; b) who the heck is her flipping doctor; c) I wish I could take everyone I meet into my home and help them. Sigh.

It’s really tough for many of us, when we come across folks like this.  And where this really hits me today, was reading David Edelman’s latest dblog promoting the book “Thriving With Diabetes” that he’s co-written with Dr. Paul Rosman .  If I could hand out this book to everyone I see that needs to take action with their diabetes health … I would (in my dream world I’d be a philanthropist and a CDE and a ….).  

So?  My next book I'm putting into my reference library here at home?  Need I say more!!!