Disappointment with the Ontario Government's Assistive Devices Program

Last Tuesday, I finally had my endo appointment.  While my A1c is at the highest it's ever been since I started insulin pumping, the team had no problem with it.  When you're used to being able to use a Continuous Glucose Monitoring device (CGM), it can be a great tool for waking up from an overnight low (especially if you live alone, or have a partner who doesn't wake up to anything).  Sadly, as most of us can attest to, many of us with Type 1 Diabetes (T1D) don't sleep very well (my Fit bit doesn't lie) - because we are tuned into our bodies as best as we can to detect lows/highs.  I fail at miserably without having a CGM to recognise those fluctuations in blood sugars that for some make make or break them.  

I've been hypo unaware all my life.  I didn't realise this until starting on an insulin pump in 2008, and learning about CGM's.  I'm very lucky that no ill effects have come from often working with being at times so low, I wondered how I did it.  I either must have a very strong will to not let diabetes effect my work, or now that I think about it  ... I was dumb and uneducated as to how low blood sugars can bugger up your brain.  Luckily, in 2014 I was gifted Dexcom G4 receiver/sensors, and my life changed at that time.   I've been fortunate to have had over the years friends with benefits that have helped to keep me supplied with their discards as they go onto more advanced systems.  A nurse onboard the cruise ship I was on a few weeks ago (still working on that blog - it's an interesting one) - who was from South Africa - explained that in her country many diabetics like myself are unable to afford these pieces of technology.  We both agreed, it's only the rich folks / countries (we laughed sadly at ... the white man privledge - especially in the developed countries).  

Since earlier this Spring, when the Ford government released the news that CGM's would be part of the Assistive Devices Program (ADP) in Ontario.  Except the catch was, only 29% of T1D's would be able to have coverage.  I'm not one of those 29% since even though I am hypo unaware, I do not fall into the other areas that would allow me to have some help with paying for this device.  As someone said, have a few bad hypos ... go to ER ... then you'll have proof that you need a CGM.  It's like, WTF, no way.  After having attempted suicide last year and ending up in ER where it took awhile to get my blood sugars stable, I'm not going to play Russian roulette with my health.  

I'm lucky I survived this, but to do it again to be able to prove that I need the CGM?  What goes through my head is, the cost of that ER visit, along with 3 weeks in the mental ward (where staff did not understand what T1D was, and the hospital records I have access too statingf that I'm not a well controlled diabetic).  Fork it!  Give me a realiable CGM (and correct insulin coverage) and I'll be able to show you what this tool can do to help a T1D, and not be forced to do ER visits for lows/highs.  The cost of these hospital trips far outweigh what the cost of being supplied the CGM by the province.

The one thing that has come to my mind since being denied coverage through ADP for the CGM based on the guidelines ..... 

DISCRIMINATION

Why do T1D's who are on Ontario Disability Support Program (ODSP) not have the same guidelines as we working stiffs for going on the CGM?   And when I say working stiff, many of us are either working 1 or 2 jobs to pay the bills, usually at minimum wage (currently in Ontario it's $15 CDN / $12.68 USD / $16.60 AUS / $11.06 EURO ).  Majority of work that many of us are able to find also do not have health benefits.  I would love to have all my medications, eyeware, dental to name just a few covered, even if I wasn't fully reimbursed ( here's what is covered through ODSP ). Yes, I know I will get comments, stating how little ODSP recepients receive from the Ontario government, but either they don't understand how much health benefits are if they were paying for it on top of their rent/food/entertainment monies received.  I could go on here, but as someone who has always had to budget in order to afford things, I've given up luxuries that I'd love to have just to be  able to live.  Is there something wrong with me???  That I give up not having a dog, a new car, a pack of menthol ciggies (yes, I used to smoke occassionally but a $20/pack ... that's potential food on the table or a credit card bill), a coffee out more often? 

So, with that in mind, I'm going to attempt to reapply for the Disability Tax Credit, that I'd been fortunate to have that helps pay off medical expenses that aren't covered by province.  I did finally find an endo willing to sign it off last year, but even with following guidelines from various virtual diabetic events I've attended in .  I was deemed to not be "meet the eligibility criteria".  And yes, this lead up to my suicide attempt last summer, because I felt so unsure as to why I had been accepted prior.  Why do government institutions make it so hard for the honest person to be able to have some financial help and be a productive part of society?

Flying High While Chasing the Sun

   Earlier this month, I arrived back home to Canada after a 30 hour flight from Singapore.  I’d had a working / holiday  in Asia for the month of December that had started off in Tokyo, and couldn’t ask for a better holiday with the various countries we explored along the way while cruising  the high seas on the Diamond Princess (and discovering that some of what we take for granted as diabetics here with gadgets, etc.  is unheard of in many of the countries I visited - we are very spoiled!!).

   When I'd originally flown out earlier in December to Tokyo, I had worn my Animas Ping insulin pump after reading a comment on Facebook advising against wearing it when flying.  I've gone back to find that post since seeing it back in November before I departed , but you know Facebook, lots of action in these groups we belong to, and you need a lot of time/patience to search posts at time, and so far, I’ve had no luck.

   Fast forward to our rather turbulent flights at the end of the December to bring us back home.  Early 4 AM (ugh!) start to head to Changi Airport in Singapore (the most beautiful airport I've ever been and below is a little video at this link  I made with fishies in the Enchanted Garden). 

   The 6 hour flight to Tokyo I slept the majority of it, in-between my last bits of yummy food service on the flight.  Blood sugars were doing fine just like they had done throughout the whole month when I was on the Omnipod.  When we were approaching Narita Airport we heard the engines accelerated as the plane pulled up to a higher altitude to avoid either an ongoing plane (or a drone LOL?).  The plane landed and as usual we let all the folks in a rush get off with us being the last.  I noticed my water bottle that had been emptied earlier, sucked in pretty flat.  It’s not unusual for that to happen, but it was something that came to my mind later on when problems started to occur in the 2nd leg of our journey home. 

   Narita is a big airport, so with the 3 hour layover before our next flight, I got to use up the rest of our Yen walking around and getting some much needed leg stretching.  Of course, this kept  Sock Monkey amused as you can see below.  I’d noticed my Dexcom G4 that my trend arrow was straight but my blood sugars seemed to be rising with the alarm/vibrations going off.  No big concern to most of us, simple correction bolus, and all was good (or so I thought).  At this point in time, I still had a days’ worth of insulin left in the Pod, which I’d calculated would last out until the Pod needing changing when we got home to Canada.

   The next leg of our trip was  a 13 hour flight,  I realised something was up.  Corrections didn’t seem to be doing anything and trend line though still straight was showing blood sugars on the rise. Fiasp to the rescue though  I was worried about  the risk of stacking insulin at this point in and maybe going low fast.  The strange thing was that the Omnipod PDM at this point hadn’t alarmed of an Occlusion or possible problem with the Pod.  Confirming blood sugars with a meter to see if my CGM was off track, proved it was pretty well spot on.  I can’t say enough about how valuable a CGM is to a diabetic on insulin!!

25 mmol/l or 450 mg/dl

   We informed the Air Canada flight crew at this point in time that even with the turbulent air that we had most of the flight, that I was having some serious health issues and needed a safe space (not the cramped loo) to do some medical change outs and also to be prepared in case I crashed low .  Due to majority of folks on this long journey sleeping, with our mini flash light in our mouths, we pulled out my medical kit bag and proceeded to remove the Pod which when we looked at the site, it seemed dry as a bone.  This is unusual as usually you see either a drop of insulin and/or blood at the site where cannula is inserted and/or on the cannula.  Also, the cannula of the Pod wasn’t kinked, so obviously that wasn’t the problem.  My hubby Mike assisted me especially with the turbulent flight, and in less than 20 minutes, the Animas Ping was back up and running! Let’s just say the crew of Air Canada was very sweet in allowing me to take over a busy area and at the same time, they learned abit about insulin pumping and Type 1 diabetes.  Yuppers, that’s me, always the educator!

Back on my juice of life with the Animas Ping

   The waiting game started, and with the Fiasp in me, basal insulin working, within 3 hours, I was seeing my trend line going back to my happy zone that I like to keep myself.  I managed to nod off at that point (I was freaking out of course with what was happening earlier), but still being on high alert, it was a pretty crappy sleep even sitting in the Premium Economy that we managed to snag for a few extra bucks for this long flight home (personally, it’s not worth it, but we gave it a try, I prefer cattle class).

  Our conclusion of what we think may have happened - remember that water bottle above?  I found out from a long time Omnipod user that the reservoir that holds the insulin is a bladder, so unlike my Animas cartridge that is solid plastic, this one is flexible.  That could explain perhaps why the insulin was not being infused into the skin if the bladder had sucked itself in.  I had looked over the manual while on flight, to see if there was any mention of this, but there’s nothing stating that this could be a potential hazard.  I’ve talked to a few other Omnipod users, who do frequent long distance flying, it’s never occurred to them. So I’m a freak of nature.

   I dutifully reported what happened to Omnipod Canada (my first time calling Customer Service, and despite what Americans have said about them, which isn’t the greatest, I had absolutely no issues).  I did tell them that I was surprised that in the manual that there is no mention of this potential problem.  Having this at least mentioned as a potential problem would be a good thing to have in the manual, just in case.  The fact that not all insulin pumpers have the ability to afford a CGM that does keep you aware (if you have alarms set properly, etc. etc.) then it could be a potential problem.

   Meanwhile, to be on the safe side, I’ve reported this incidence to FDA and am still trying to figure out how to report it to Health Canada (it’s like looking for a needle in the haystack to find the area unlike the FDA that is very user friendly).  

   Yes, I’m still enjoying using the Omnipod, don’t get me wrong, but at least I’m now aware of a potential problem and will be more prepared, or wearing a tube pump,  and/or MDI to ensure I stay in my happy zone of blood sugar control when I'm flying or experiencing frequent air pressure changes!  Flying should be stress free!!!

Vampire testing on the fingertips

Okay, kidding aside ... as diabetics ... testing your blood sugar on your finger tips can be abit of a drag at times.  I've been doing this process since home testing was introduced back in the 1980's  (you can read more about the history of these blood sucking devices at David Mendosa's link HERE).  Even with wearing a CGMS (aka Bowie) which many people think means you won't have to do the old finger prick anymore, I still test on average about 6X a day, sometimes more, depending on what is going on in my life.

Recently, a family member of mine was diagnosed with Type 2 diabetes.  Luckily, with the help of their spouse, they're are diligently performing 4 tests a day in order to stay in a good blood sugar range to avoid any complications of high blood sugars.  The one thing they admitted to me the other day, was how much it hurt.  I discovered the "nurse" was pricking the fatty portion of the finger tip, where numerous nerves exist ... that beg <NOT> to be heard when they're mistreated.

Screaming Hands by http://lintza.deviantart.com/

I then slowly explained the best way to avoid the pain, by testing on their finger tips, which over the years I've shown nurses how to perform this task on their patients hands.  What better person to show them how to treat their patients, and not have them stop testing when they go back home to deal with diabetes on their own.

I even went as far as to post a few pictures on my Instagram account that you see below, since sometimes pictures are worth a thousand words!   If you've never tried testing on the sides of your finger tips, then give it a go next time, and be rewarded with no pain or scars.

Here's some of my tips to get the best results out of a pain free blood test:

• Always wash your hands before testing, simple soap and water are fine (alcohol dries out the skin).
• If your fingertips are cold, rub them gently to warm them up and get better blood circulation.
• Use your lancing device on the SIDE of your fingertip to get a drop of blood sufficient for test.
• Then hold the edge of the test strip to the drop of blood and wait for results 😀