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Posted: Jul 29, 2014
Well, recently that hash tag statement went abit wild on Twitter and other social media areas. Mainly I think due in fact to Ms. Idaho’s recent win – and showing off her insulin pump proudly (wonder if she has a name for hers like I have always done with my pumps?).
This past weekend I was sailing with some friends on Jenna’s Journey. I decide to be brave, and show off my pump after I’d had a splish splosh in the water (I no longer wear my Animas 2020 aka George Michael in water due to trying to keep him functioning as long as I can, as he no longer is under warranty).
So, viola …. here I am poising with him clipped onto me after I came back on board (well – clipped back on about 1 hour later I REMEMBERED that I had to reengage him). I know …. Bad, bad, bad.
One thing though, since having that picture taken. George has taken a few dives of his own. Off my body. I’ve been using a longer infusion tube (36”) due to the fact I can stick him into my pockets of my button up front dresses, skirts, pants. He’s easier to access to do calculations, etc.
Well, long tubing means, when he takes a dive, he goes plunk onto the ground. For the picture above, I only clipped him on temporarily, but after that he was sitting "snug" under my rash guard, until I did something that made him plop out). Twice on the weekend he went clunk, OUCH, onto the gel coat of our sailboat. It sounded HORRIBLE. I thought for sure I had killed him!!!
Of course, I examined him like I would a real life baby, checking for any cracks, etc. Trying not to tickle him.
And to top it all off, last night, I remember having one dream of dropping him, and the casing cracking. I think I woke up to that pretty startled, realised I was dreaming, went back to the land of nod.
So, just now, after having done an infusion change (with a 23” tubing for a change of pace). I’ve now dressed him all up in one of the skins I’ve gotten over the years at Friends For Life events in Canada. If he ever takes another plunge, at least he’s got that protection. Much like we have for our mobile phones.
Oh – and notice – I’m back in reduced basal mode again? This seems to be a common thing with me lately even with my weight gain, which should be reverse, you would think I need MORE insulin. Thank goodness for being able to do that with a pump as well as SUSPEND.
Now, if only I could get a royal blue colour for him …… Animas Canada ….. are you reading this? Hint! Hint!
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Posted: Nov 25, 2013
Have you ever considered islet cell transplant?
A friend of mine here in Canada, Chris Miller is going this route and is blogging about his experience – Too Brittle. He is like me - VERY “sensitive” to insulin. The old fashioned term for this is still referred to as "brittle" – and I have abit of a hatred of that word as you’ll see below. Dr. Peter Nebergall gives a good description on what “brittle” means (you can find his expanded words at this link ) – and you’ll find me quoting him a few times through this blog – because I finally understand myself with his simple description (yes – I’m always learning)–
“Real "brittle diabetes" doesn't follow patterns. Individuals whose diabetes is "brittle" experience unpredictable, out-of-proportion rises and swoops in blood glucose, within short periods of time, as a result of very small deviations from schedule “
So, what’s my beef with the word “brittle” (arrhhh – I hate typing it out with a passion – but it’s all part of this blog). Well, as a sweet faced (NOT) teenager I had this feeling when my German endo would look at me in the eye - with disgust in his face. I know - over dramatization here on my part - that I was being evil/bad with my results (actually - I was at that time – watering down my urine samples - like WHATEVER – the blood draw revealed the truth as we all know). I was undergoing a year long journey towards a delightful DKA adventure – unbeknownst to my Mum –as she’d handed the reins over to me for my diabetes control at an earlier stage than most D-parents (T3’s) would do these days (aka she trusted me). A diabetic diagnosed as a child never forgets things like this (for any parents reading my scribbles – take note).
Now let us skip 40+ years later (I know, I know, insulin has kept me looking far younger than my “real” age – do not compliment me on my model looks ) and I'm finding out that with my fights with controlling my BG to remain stable - not going low so often or high in my BG - that I'm sensitive to insulin. I'm finally understanding that I need less insulin at certain times of the day (and when I say less - it's almost like I'm CURED) - and I'm tweaking my insulin pump programming to relate to my sensitivity to the insulin I give (next step will be seeing how I can transfer this knowledge to Lantus when I go to multiple dose injecting (MDI) again - with the i-port being used for my NovoRapid - aka bolus insulin).
Again, though, as Dr. Nebergall points out – even with tight control (which we “try” to do – without diabetes taking over our lives to the point of insanity) – things go amuck – and here comes that word “brittle” again from Dr. Nebergall …
“These are the diabetics, even practicing tight control, whose blood glucose level "over-reacts" to minute changes in diet, exercise, and/or insulin. These individuals experience unpredictable rises and swoops in blood glucose, within very short periods, as the result of very small departures from schedule. Small changes "break" their control, and they are thus said to be "brittle.”
I had considered islet cell transplant about 15 years ago in Edmonton – and human guinea pigs were being asked to step up. I did – despite my endo’s disapproval (just like he was with my going on a pump) – but I didn’t qualify as I didn’t meet the criteria. The way I comprehended my refusal was I had to be almost on deaths door step, and some of the recipients of the islets in the beginning that I read about – were indeed close to dying (kidney failure, etc.). Now fast forward and they are screaming for participants. The other islet cell transplant that had peaked my curiosity has been the Auckland Island porcine islets – that’s still ongoing (no results yet have been published).
So, the jist of Chris’s blog is that he had just about sunk as low as he could - with dealing with low blood sugars that the last few times had caused great distress to himself and his family members. He cannot live alone due to his being unaware when his BG's drop down. He cannot exercise due to the sudden drops that occur. It's not really life to him - and I don't blame him in what he's undertaking in the hopes that the expense of the drugs he'll have to take for the rest of his life for antirejection - will give him back a better control of his life.
I’ll be following his blog about the steps he's taking in preparing for the islet transplant. I'm just hoping that this will make his life better - and give him a greater outlook on life with diabetes – even if it means a little jab of the juice of life now and then – but more control of his BG’s and outcome on living.
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Posted: Nov 4, 2013
Here's the story behind my friend Richard's picture I posted for today's topic. I think at the time he was on the phone wheeling and dealing something from his hospital bed.
We both went to the same high school together - we've never met in person - but we connected thru' Facebook - and he's quite the story teller (some of them crack me up - he should be on stage). I feel PROUD of him for all he's gone thru' over the years with his "die-abetes" he was diagnosed with later in life. This past summer he suffered a viral injection - it was to the point where it seemed like he'd kick the bucket - but he fought back with a vengance - along with his wife and kids encouraging him on.
Here's his take on the whole thing (he really should have his own blog site!!!) ....
" I was on 130 units of slow acting insulin a day, and another 82 units of long-acting stuff. Plus 2000 mgs of Metformin. I was up and down like a toilet seat. The lows really got me. I would wake up virtually blind, and struggle downstairs to scarf back a quart of orange juice. Then...I got this weird virus back in May. Perhaps a tick-borne thing, but the tests didn't come up with anything definitive. Anyway, aside from nearly killing me, it pushed a 'reset button' with my die-abetes. Now weight loss is easy. I can cut my carbs, keep caloric intake to say 800 a day if I want to, and even miss a meal and not crash. Go figure. Even my eye-sight has improved. Halloween, I cheated by stealing some of my kids' candy, and figured I might take some insulin for giggles. Made me feel awful.
It is too weird, and I am crossing my fingers on this one. Also I exercise at least 30 minutes a day. Enough to get a sweat going, but not a drizzle. A gentle glow perhaps is how to describe it. "
NB: To see a less elongated picture (not sure - after I posted this - it looked "strange" - even with adjusting - just go to the this link - it should look more normal!
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Posted: Nov 3, 2013
I'm kind of feeling abit down. After my endo appointment earlier in the week - with the weight issue (I wasn't surprised by that - but still brought back memories from my younger days at home). I really wanted to start getting more active - with taking part in the #BigBlueTest that runs until November 14th which is World Diabetes Day (#WDD). Each time you post your results for the #BigBlueTest you trigger a donation on your behalf to nonprofit groups that are providing life-saving supplies/services/education to people with diabetes in need - it's that easy (and no - you don't have to fork out any monies to do this).
You simply log the info requested with your pre-exercse #bgnow (blood sugar or BG) - exercise - then retake your BG. It's that easy!! You can even post the results if you link up via your Facebook/Twitter or Instagram account.
Easy - or it should be if you're not having a low when you go to test. I'm finding it abit difficult due to my BG's misbehaving when I WANT to exercise. I don't have time to wait for my body to play catch up with what my brain wants to do. It's soooo darn frustrating!!! This doesn't only occur with exercise in many of us - but just normal every day routines like going shopping, fill in the blank here. If you're going low - you can't function normally - it's like you're DRUNK!
It's like I know - I shouldn't have started my exercise (I actually did less today due to going low - along with lower speed) - but waaahhhh - after my parents statement to me after they'd read my blog about my weight - they still don't quite understand diabetes - and why we aim to have tighter control of our health. I don't manipulate my insulin for my food intake - it's the total opposite. SCCRRREEEAAAMMMM (feeling like a teenager again at home here ).
This is where diabetes comes into play for many of us - either starting low (I like to aim between 00-200 mg/dl or 5.5-11 mmol/l) - or you're going along fine - and then BANG - you're going low (hopefully you aren't hypo unaware). I've had suggestions of what to do - which I've tried (today I lowered my basal rate on my insulin pump by 50%). I know I shouldn't have done the exercise at the BG reading I had of 4.7/85 - but I did.
Anyway, this has probably all come across wrong - just with my parents comment above it really urked me (weight has always been a big issue with them) - I just felt like such a failure - and even after the #BigBlueTest is over - I want to continue in being more active (like I haven't written about this before).
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Posted: Jul 18, 2013
When I first started to wear an insulin pump back in 2008, I didn’t realise that wearing one would restrict some of my clothing options. Living in Montreal, the fashionista capital of Canada (okay – there’s Toronto – aka mini-me USA – but they just don’t have that French flair like we do ).
It was sort of nice since January, when I took a pump break, not to have to spend the extra time to pick out clothing that would not reveal a bulge of George Michael aka GM (pun intended there – remember – I grew up with Benny Hill) my insulin pump. Now that I’ve been back on the pump for over a month now, I realise that I have to take extra time to figure out what to wear that will allow me easy access to George Michael. Hmmm, should have I had added that time factor into my application for DTC?
I did the stint for almost a month of wearing the infusion set in my arms. That was kind of neat – almost like I wasn’t wearing an infusion set except when I’d hit a muscle or nerve ending in my arm with the stainless steel infusion needle (found Contact Detach/Sure-T does this more than the Inset 2 sets). One thing I am going to try out if I can get some samples of shorter needle/cannula length for the infusion sets - just like I have done with the shorter 4mm pen needles I started to use back in April. My absortion with the shorter pen needle created no change in my BG's - which I thought it would due to my not being a slim gal (as I had told the RN when she gave me some samples of the BD 4mm pen needles said skin depths for absortipon of insulin doesn't change in the human body). Anyway, back to old GM, here I was tucking him into a sports bra – where I couldn’t believe that despite how hot it gets inbetween the girls – the insulin would keep on performing 100%. My fear, like other diabetics is that heat will deteriote our insulin – but after 3 days of using the same insulin in the cartridge – my blood sugars (BG) stayed stable.
Actually, stable isn’t the word I should be using here. I’ve been experiencing hypos (low BG) more often - that almost reminded me of my days when I was MDI prior to going onto the pump (one of the reasons I went onto the pump in the first place was due to having frequent hypos. I sort of didn't understand how to use my combinations of insulin properly pre-2008, I was trying to learn how to do the poor man's pump method - but not quite doing it correctly. As I keep on telling pumpers who’ve never gone back to MDI since starting on the pump - being on the pump has taught me how to fine tune with ONE insulin and that with that knowledge - you can easily transferred over to using TWO insulins when doing MDI. It really isn't that difficult - honest - you've just got to know how to use your insulin(s) - and their little quirks.
So, with the hypos I’ve been having – sometimes a few a day – the things I have planned to do – that usually involve some activity (even simple grocery shopping believe it or not) – have to be shelved. I do NOT like to have my diabetes rule what I can or cannot do. My poor DH has to put up with my having to tell him that I can’t do this / that – and he’s so far not really sad much – as I go “I’m so sorry, I’m so sorry” or “Get me some quick acting sugar NOW!!!”. What a range of emotional outburst I put him through – that is so not me – that it makes me cringe if a fly is on a wall witnessing this (thank goodness they don’t have the ability to hold a video camera).My basal rate has now been reduced by almost 20% - but I’m still needing to tweak it abit with some more basal testing since now I am going low in the afternoon (very rare for me). If that doesn’t work and I’m still experiencing low blood sugars (hypos), then it’s looking at my carb ratio (I:C) – which I have slightly changed since I’m now understanding I’m insulin sensitive. The other thing to look at is my Insulin Sensitivity Factor (ISF) - which to me is a trial and error type of test - since there are a few different formula's out there to deterimne what is best for "you".
Ahh isn't diabetes control a fun puzzle or what?
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