Blog Entries With Tag: CDE


Posted: Nov 25, 2014

I’d written earlier about going for pre-op for surgery (which has now been cancelled and moved up to January for some reason – so more time for me to dwell on … do I go for it / or not?).  At the time the pre-op team didn’t realize I was a Type 1 diabetic for some reason, and red flags went up when I questioned them what to do with my insulin pump regime.  Especially for my after care with 3 day hospital stay for recovery.  The pre-op doctor had said that they had 2 endocrinologists that understood how to work with patients with pumps.  That excited me to no end, as I’ve never had an endo/GP with that knowledge.  I’m self taught in most aspects of how I control my diabetes health, by keeping up with latest technology, discussing it with my medical team, and they allow me to self guinea pig myself with what I want to try.  I am my own boss behind what I do with my health care for diabetes – but sometimes it can get exhausting – but I refuse to give into burnout from diabetes. 

Fast forward, I arrived at the clinic in the Lakeshore Hospital.  The diabetic clinic was a small place, with patients waiting (during the time I was there - one guy was glugging water like he was a fish out of water –  sprinting to the loo to pee like a horse – sadly the door does not have good sound barrier …. uhhhmmm – diabetic out of control with their ???).  I asked the receptionist, out of curiosity sake, if patients were able to share their pump/blood glucose information via Internet to their office (I use Diasend with my Animas pump).  I think she was almost embarrassed and a few of the staff members behind her as well, when she said “No”.  Oh, Oh, …. I’m thinking to myself … am I wasting my time coming to this clinic?   I looked around at various info on walls and in the hand out sections … everything … geared for Type 2 diabetics.  Hot flash started due to panic mode at that point.  I am ready to run out of the hospital!!

Hour and half later, sweating like a pig due to being dressed for cold weather (and that day we were experiencing unusual high temps of 18C in Montreal – ovey) – I see the endo.   She gets down to asking me my history.   My saying how long I’d had Type 1 diabetes seemed to floor her and at that point I wish I’d said … I’ve only had diabetes for 15 years, which she had thought I’d said when I’d told her I was coming close to year 50 of diagnosis (I joked about applying for the Joslin award – I was nervous at this point – white coat syndrome as usual).

Then we got to my insulin regime.  I told her I was currently on MDI (multiple dose injections) – but planning to go onto pump again on December 1st since I thought I had figured out the right dosage for my basal portion of my insulin regime with Levemir.  She seemed puzzled by my not taking the same amount for each meal (I explained it depended on the blood sugar (BG) reading at the time, my I:C ratio, ISF ).  I asked her if she understood what TDD meant?  A term used in the pumping world for Total Daily Dose … she did – but she didn’t seem that interested. 

At this point, I knew I was not seeing an endo with full knowledge of pump experience (as she spoke to me – I slowly undid George Michael’s battery cap, and slunk him iaway for future use).  She admitted that not many people use insulin pumps, and that even the largest diabetic centre in Montreal isn’t as well.  For my upcoming surgery, she does NOT want me on my insulin pump but to stay on the regime I'm on at present.  She wants me on my current regime but RN's will be under my orders … if I am with it …  otherwise they will follow the protocol the endo has written out - which scares me .... on the order form she has put down that I take 4 units of NovoRapid for each meal – which I told her could send me into hypo land if a) I had a low blood sugar; or b) I didn’t eat all the food on the tray).  Gulp.

This is obviously not the United States of America – where I’ve heard from other insulin pump users going into surgery, sometimes wearing a pump.  There are no CDE’s able to help you manage your health … not at least in Quebec where doctors are Gods.  No pharmacist or CDE can help assist you in your health regime – so you suffer while you await to see a specialist.

Wait though, there is some good out of this visit.  She wants to see me in February, and she is actually going to be testing me for celiac disease, which is common among Type 1 diabetics.  I had asked previous doctors for this test, and they’d look at me like I was off my block.

 

The other thing that was interesting about this so called “pre-op” visit.  My feet were examined by her doing a few tests which she says should be done every year for diabetics by a doctor.  I have NEVER EVER had my feet examined by a doctor.  She was amazed at the sensitivity of my feet, ability to still feel (I joked about not wearing socks with sandals, only as a child with my parents did I have to do that – memories of being made fun of by American kids at a beach in Maine one year will never be erased from my sponge brain).  IIf I’d known she was going to do this, I would have washed them.  Luckily, she said my feet were in amazing shape …. again the emphasis was due to how long I’d been diabetic.  It’s like … what … am I supposed to have dinosaur looking feet or ????

Yes, I’m scared.  I want to cancel the surgery even more so now.  Time to write a letter to my surgeon.  I must stop procrastinating!

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Posted: Nov 15, 2013

I just did my first Morning basal test – ever – in all my years of MDI (multiple dosage injections) and insulin pump control for my Type 1 diabetes.  I’d only ever done an Overnight basal test when I kept on experiencing hypos (low blood sugar) readings) during my beauty sleep and waking up bright eyed and bushy tailed (NOT).  Also, as a few experts point out – when trying to get a better grip on your basal regime – it’s always best to tackle the overnight one first.  THUMP!! – gold BLUE star to my forehead!

Good Little Bee by thisonlyexistsinmind.deviantart.com

Why did I perform a Morning basal test? Well, I’ve been starting to have more frequent lows a few hours after waking up – with or without a breakfast – or doing activity (remember – I’m trying to shed some weight here for heart protection).  It’s gotten to the point the last few months that my day is RULED by how my blood sugar (BG) is doing.  Often I’ll have tested prior to going out (remember – always to test your BG before hitting the open road) – and then within a few hours – I’m dropping like a brick. I used to think it was maybe due to stress of shopping (yes – most women like shopping – I detest it immensely – though if it involves hardware / auto or other manly diversions – then bring it on – I’m in).

Yesterday, when I was out getting weekly shopping done – I had to make a bee line back home before finishing off the tasks at hand.  I find this EXTREMELY annoying – and at that point – I really REALLY hate diabetes – and how it can take over our lives.  Planning to do something – takes back seat to the blood sugar fairy – and at that point – I feel like I’m ready for a straight jacket – since I don’t like feeling out of control.

Dude driving a little red car

So, the results of my basal test this morning?  My BG’s went down 1.7 mmol/l (31 mg/dl).  Not a great drop – but still – it dropped at the same time it seems to do – even after I’ve eaten a healthy breakfast – taken the correct insulin to the carbs I’m eating (that’s another test I have never done – and want to do after all the basal testing is done).  I’m learning with age (ahhh wisdom of the Old Type 1 Fart like myself) – that you never can say you’re a pro at anything (just like I can say about sailing, and other hobbies I do – I’m constantly learning new tricks of the trade).  I now know that I’m VERY insulin sensitive as I’ve gotten older (as a teen I was using up to 100 units a day of insulin – though that was after I almost snuffed myself with being out of control for a year and ending up in DKA coma – live and learn I say – and luckily for me – I survived).

Tomorrow, as suggested by Gary Scheiner from his 2nd edition book entitled  ‘Think Like a Pancreas’ – redo the basal test the next day if possible – using the reduced basal settings .  Along with the “bible” of ‘Pumping Insulin by John Walsh and Ruth Roberts‘(now in its 5th edition) – these are my CDE’s that I’ve always used to teach me how to use my insulin over the last 10 years.  With no help from my medical team in this area – I am lucky I can wing it on my own – of course – with much appreciated feedback from the D-OC (diabetes online community).  The world becomes a smaller place with all the help that you can find from other diabetic buddies around the world!

I’ll tell you – that double espresso along with toast and lemon marmalade and some cottage cheese at 12h30 never tasted soooooo good!!  Mmm, it’s now 14h12 – I’m now craving another espresso – time to go test my BG’s ...

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Posted: Jul 7, 2013
Image of high 5 cat from reallyfunnypictures.co.uk

I had attempted an overnight basal test on Friday - but that was a failure with going low (3.2/57) - but last night - with having tweaked basal rates abit was SUCCESSFUL!!  I went to bed at 6.2/112 and woke up to 5.4/97.  During the night around 5 AM I had gone to 4.2/75 - but according to Gary Scheiner's book 'Think Like a Pancreas' - he says staying within a 1.7/30 up/down range from your original starting BG (blood sugar) - I was in the good zone. 


I have to admit - I'd like to be abit higher overnight with my BG - more in the 6-7/108-126- - so will tweak basals eventually - but am so looking forward to having a solid sleep tonight - as last few nights have been very broken with getting up every hour.

I guess this would be where a Continuous Glucose Monitoring System (CGMS) would come in handy - I know of some US health centers loaning them out to patients - but when I asked my endo about whether this was possible here in Montreal - he said no.  Anyway, the good "old fashioned" way of testing with the blood meter went well.

So much more precise than the urine testing in my earlier days of diabets control as I'm sure many of you will agree on!

Curious - how often do you test your basal rates (pumper or MDI)?  I have to admit - I blog about it "how to do it" - but have never really done a full night one before until having had difficulties the past month with low BG's since starting back on the pump after my break from George Michael.

I know that due to not having a Certified Diabetic Educator (CDE) or endocrinologist (endo)  to show/tell me how to do these sort of tests - I've pretty well had to go with what I read in books that others have recommended within the DOC (diabeties online community).  I have to admit - this time I was using Gary Scheiner's book I mentioned above instead of the John Walsh book - 'Pumping Insulin'.  I actually found Gary's book abit easier to understand - he writes more from the heart with being a Type 1 diabetic (T1D) like myself - and a pumper as well.  Both books though are very good - so they have many dog earred pages!

Picture courtesy of Fiction Writers Review
                                                 Picture courtesy of Fiction Writers Review

There's a few more tests I'm going to be doing over the next few months - to get more use out of my pumps programming (e.g. I have a feeling due to my sensitivity to my insulin - that perhaps my carb ratio is set too low - there are tests in both books that talk you thru' how to perform this).  The pump as some people think doesn't mean you'll have better control of your diabetes if you DON'T use it properly.  The same applies to multiple dosage injections (MDI).  You are the brains behind these devices we use - they can only help - if you know how to use them - along with help from your health care team (provided they are up on all the latest and greatest).

I know some of you may think it's dangerous for me to be doing this on my own - but sadly - not all of us have the resources / services available to us - and this is the only route we can go.  I would LOVE to be able to have a CDE or endo that understood the fine tuning of the pump - but alas - I've not lucked in as of yet.  A few years ago my GP had referred me to an endo here in Montreal that does research in the diabetes field and works with pump patients.  Sadly, when I saw her (Dr. Natasha Garfield) - she told me that my A1C of 5.9% at the time was dangerouosly low if she was to take me on as a patient.  I had hoped due to her having a team of CDE's trained in the pump area - that I'd be able to go to them for help when I needed it.  So, I walked away with my tail inbetween my legs and carried on the way I always do.

The Cat that Walked by Himself - by Rudyard Kipling
The Cat That Walked By Himself - by Rudyard Kipling - picture courtesy of  -http://www.mainlesson.com

So, this is why I do my own thing - and again - some of you maybe in the same boat as I am.  So far though, I seem to be on the right track - despite the little roller coaster ride from time to time that we all have with this disease!
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Posted: Oct 4, 2010

B/W photo of mouth biting bullet


I've been back on the pump for 3 weeks now - and starting to experience the same problems as I did when I decided to go off the pump back in April for my "MDI experiment".  Having issues with F-d up BG's in the morning (high) - and it's almost like I'm injecting water into my body with the BG readings I've been getting.

Pumping Insulin by John WalshI've pulled out my trusty Pumping Insulin book by John Walsh - and of course - right there it says "Always seek the advise and guidance of your physician and health care team.  No book can ever help you as much as they will".  Easy phrase to type out, but to find an endo with pump experience or CDE is like looking for a needle in a haystack here in the part of Canada that I live in (let alone find one that I can converse with in English). I've blogged about this a few times and I'm beginning to sound like a broken record, but it's starting to get somewhat annoying when all my American friends in D-OC beat their chests about their CDE's , etc.  It makes me feel like a real whinner when I continually Tweet about the lack of finding someone!

So, I'm going to try to understand this book as much as I can (technical books aren't as interesting as the romance books I read ) and I've put in a plea for help to Animas Canada to see if they can find someone I can talk to and understand how to use this expensive piece of technology better.  I have to admit, I did find my BG's better on MDI, but I found it a chore to constantly remember to jab and this is what I like about the insulin pump, if only I didn't have this roller coaster ride with my BG's!  I just would like to learn how to use my insulin pump as best as I can!

Back to reading / highlighting and patiently waiting to hear from someone who can help me  (I would sell my soul to be able to have an endo that completely understands pumping)!


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Posted: Jun 2, 2010

I have been diabetic for a few years now.  I think sometimes, how I took care of my myself sometimes was maybe a shot in the dark  – and often look at myself in the mirror thinking … “Wow – you aren’t doing so badly” with the technology that took care of my diabetes from the 60’s and up.   Things are much better now but only if you can find someone who can take the time to go over all the nitty gritty details of how to keep your blood sugars in control, either with pills and/or insulin.  At the same time, we also have to educate ourselves on how to take care of ourselves, but not everyone can do that. I’m telling you it’s a complicated roller coaster ride we diabetics lead sometimes.

 My experiment with going back onto MDI (multiple dosage injecting) has had its ups and downs the past few months if you've been reading my dribbles here.   I’m enjoying the freedom of not being hooked up to a machine, but at the same time, I miss the ease of how I can remedy a situation with a few touches of buttons on my pump and I’m all set.  With MDI, I’m personally finding it a big challenge, to maintain those even BG’s that I can get with my pump basal settings.  I had to give up on the Levemir part of my “experiment” due to reaction to the insulin.  I am now having issues with low blood sugars in the morning.  Trying to figure out what I’m doing wrong – e.g. am I giving my 2 shots of Lantus at the wrong time, am I ???  This is making me seek help from my endocrinologist for the past few days as I deal with waking up to BG’s in the 2-3 mmol/l – 36 – 54 mmol/l.    

This morning I spent some time on the phone with various government services here in my province of Quebec.  First I tried my local health service centre (CLSC), and they had never heard of a CDE (Certified Diabetic Educator).  All they could offer me was a nutritionalist – but when I spoke to her – she didn’t even understand what a CDE was.  She then put me thru’ to Info Sante after we had both done some searches on the Internet together where she said they should be able to help me.  In the end, the Info Sante lady admitted that CDE’s are really a rarity in my province of Quebec (she had never heard of them – but again – perhaps due to my not knowing the French equivalent it didn’t help).  She said my best option was to drive to Cornwall, Ontario – which is a few hours west of my home – and seek help there. 

Just a few minutes ago, I was finally able to reach my endocrinologist’s secretary – and as usual – she’s finding it strange that because I work as a diabetic mentor – I don’t know what to do.  When it comes to pumping, I’m a whiz semi-kid, but MDI, despite doing it for 40 years; I didn’t really understand how insulin worked, etc. before going onto the pump.  She then told me that my endocrinologist has 10,000+ patients – these are open file patients – meaning – he is BUSY - so basically - no time to see me.  These patients are not just diabetics, but other patients with endocrine disorders.  He is overwhelmed.  The fact that she runs the office on her own is another story (I keep on telling them to hire me – but it’s my darn lack of fluent French again).  She also told me, that going to Ontario won’t help, that they have patients coming from that province since there are just not enough endocrinologists to serve them!  Again, CDE’s, why don’t we have them here in this province is what is going thru’ my head which would take the pressure off the endocrinologist? 

She did say that big changes were happening in the Fall time here in the area I live in for a clinic that will be set up just for diabetics (she was vague about what it all entailed).  All I know is, that as a new diabetic, in my situation, I would be very scared, not being able to have some sort of help when I need it.  To be told to go to ER is not something I feel we should do if we are having issues with our insulin regime.  Are Quebec and the rest of Canada ready for the amount of diabetics that are being diagnosed and needing help?  I hate to say this, but I don’t think so. 

Back to research on Lantus again (hopefully Tudiabetes is working again) until I try my endocrinologists office again tomorrow (this is all his assistant could offer me).  Diabetes right now seems to be taking up much of my time lately, as I try to find that magic combination to having level BG’s.   Yes, Dianna, my pump, aka Salvador Dali keeps on looking better and better to me these past few days, but I must resist the pull of his twirly moustache, and hang in until my next A1C in July.  I can do it; I can do it … with a few gripes here and there from the peanut gallery.

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