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Sunday 15 November 2015

3282

Yesterday, I talked about the 'T1D Looks Like Me' campaign which you can access here if you would also like to smurfify yourself.

Today, I'd like to show you what a different aspect of T1D looks like.

A year ago, on WDD2014, I started a collection, of sorts. The 'D365' project. It's not quite complete, but I thought I would share a preliminary look with everyone now that the initial collection is finished.

This is what a year with Type 1 Diabetes looks like:



125 Set Changes. 


125 times I pushed a cannula into my leg, stomach or back. That's  1 cannula every 3 days.


Some of them hurt. Alot. Some hurt for the entire 3 days they were in. We don't have any way to x-ray ourselves & find the nerve clusters before we put each cannula in.


3282



3282 Testing Strips. That's how many times I poked a sharp needle into my finger, hard enough to make them bleed. 


3282, is an average of 252 tests per month, 62 tests per week and 9 tests a day. Even when my fingers ache.



208. The number of hypoglycaemic events experienced. The number of times that my blood sugar was not high enough to sustain life long term and required immediate attention. That's 1 low blood sugar every 1.75 days. Sometimes, you can have 4 in one day, and sometimes, none for a week.

There is no way to predict a hypo (or trust me, we wouldn't have them!).

But in Diabetes land, we have this amazing tool to help us manage our diabetes. It's called CGM.

CGM is expensive. But it can stop hypos. Want to know why I was hypo free for 5 days straight? CGM. 

Think 3282 is an awful lot of pricking & poking? CGM gives my fingers a much-needed break.

I'm not holding out for a cure. I don't believe in one and I don't particularly feel like I need one. I can and do live my life just fine with my T1D. What I do want are the tools to HELP ME live with this disease, day in, day out. Like CGM. And in future, the artificial pancreas, or closed loop system, or the smart insulin patches.





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Reasons Why I'm Hypo:

The counter has been reset. I went Christmas shopping.

Saturday 14 November 2015

WDD15

Happy World Diabetes Day everyone!!

Since the start of November, my facebook has been awash with pictures of smiling, happy, blue people. For those who don't know it, November is Smurf Awareness Month. 

Juuuust kidding. There is a reason for the blue take-over.

November is Diabetes Awareness month (and lung health awareness month too....so look that up) and today is WORLD DIABETES DAY!

This year, we T1's have adopted JDRF's campaign: 'T1D looks like Me' - putting a face to what T1D looks like:




There are a great many things that T1D looks like: Test strips, jellybeans, blood and needles. But what I think we're highlighting most is that we are just normal people. Yes, we walk among you, and you don't even know it. Acting like normal people. We eat the same foods as you. Watch the same movies. Go to social events.

Like baby showers (For a diabuddy, but hey). Where you get to eat blue themed food, just to further the spirit of WDD. 


(Yes, that is blue zero-sugar lemonade))
(...and a blue strawberry)

I feel like I filled my quota of blue. What did everyone else do for WDD this year?



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Reasons Why I'm Hypo: 

Last Hypo Incident:

5 days since last incident

Tuesday 10 November 2015

The Best 10 2 Letter Words You will Ever Hear

'EXPOsing Diabetes', an annual event in Brisbane held by Diabetes Queensland, rolled around on Saturday. I love these events, and recently swapped over from attending them to volunteering at them.

I got the best of both worlds. I got to spend my entire day talking to other people with diabetes. As always, it's a place to feel normal. A place to relax and let my diabetes run free. Well, maybe not too free...

From behind the information table, I briefly wondered, as I stood next to people with fully functioning pancreases, if they ever feel overwhelmed by us at these events. If they stand back a little and wonder how they're going to escape a crowd clamoring over them for information and for the free diabetes goodies on display. Do they feel different?  The odd ones out? Do they think about, and hope, that they'll always be on their side of the table? Do they hear patient stories and sigh in relief that it’s not them?

I don't know why I wondered this. I think because I was on a different side of the table to usual. I was separated from the patients. Usually, I'm swapping stories. But I just listened this time. To a story that was bigger than just my diabetes, one that belongs to many people. It’s the story of people with type 1 diabetes, type 2 diabetes, their families and friends.

We share a great story, simply by living our lives and not letting diabetes stop us. Thankfully, sharing information and enabling self-learning is a part of this story.

It was just before afternoon tea break that I found myself talking to Rob Palmer. A plunge in BGLs had seen me having just scoffed 3 mini muffins in quick succession. He asked how the muffins were and all I could offer up was that as I was cramming them in I had a vague sensation that there was food in my mouth, but I wasn’t aware of having chewed that food or how I managed to swallow it. I really didn’t know what they tasted like, because hypo doesn’t need you to taste things. He pointed at a demolished jellybean packet and said it was from his 2.something earlier.

Later that day I quietly slipped into the back of the Type 1 presentation room to hear Rob address the audience. His scattered story was enrapturing. He was someone whose story the audience ‘got’. He had all the hairy diabetes moments that are part of daily life for us, but he also had the great stories about spending a week on a boat surfing, long days at work and doing it all with a smile on his face.

He rounded it out by passing on the best 10 2 letter words strung together: “If it is to be, it is up to me”. It encapsulated the day perfectly. I love EXPO because it does aim to empower people with diabetes to live their lives to the fullest. Patient education gives us the tools to help us achieve the things we want in our lives.




I don’t have any dreams of being a TV star (I’ll leave that up to Rob, who has a much better personality for it), but I have some good reasons of my own to take control of my diabetes to make sure I can do what I want with life: travel, babies, getting my kellion, throwing old lady tantrums and being buried with all my limbs intact.


Tuesday 3 November 2015

He Didn't Let the Quaffle In

I don't really pay much attention to my pump these days. Its just always there and I'm used to that. I usually feel really 'connected' to my pump, but I haven't felt that for a while. I finally figured it out. I haven't named my new pump yet, so I haven't been able to make it feel personal to me yet.

So I had to make it personal. Somewhere, packed away among many boxes in my garage, I have a baby name book. "Why Shouldn't I Call My Son Clint?" was picked up by my husband one day at the Eumundi markets, bought home and packed away for much later use.  I braved the cobwebs in my dark garage, and gingerly opened up boxes upon boxes of books. It took a while, because I spent so long making sure nothing hairy with 8 legs and 8 eyes would scuttle out and up onto my arm. It's a serious and well-formed phobia. The kind of phobia that gets cemented into your soul when you have to pull off a motorway because 8 legs and 8 eyes of the huntsman variety are right next to your face as your driving. After assuring myself that I was not going to get attacked and seriously maimed by anything lurking it was time to choose a name.

I worked my way through the names of the Weasley clan. I'm not sure why I decided that I would call it after the muggle-loving redheads. Maybe I've had too much butterbeer of late. Maybe it's rereading the books and watching the movies for trivia. Maybe it was the paint fumes from my self-made death-eater mask.



Ron -  an obvious choice, but a rather mundane and samey-samey option. My handy name book describes a boring and placid life. Diabetes is anything but boring and placid, so I need a pump name that can keep up with it.
Arthur - "...A funny bastard who has lost his keys. He knew he put them down somewhere but for the life of him he can't remember where." Yeah, this kind of sounds like Arthur Weasley. My pump isn't something I want to chance misplacing.
Percy - Described as a tall fellow, who has risque conversations with women. ...Nope. Just nope. Apparently I need to introduce the author to Harry Potter. One cannot simply use a Harry Potter name with a description that does not fit the character.
Bill - "Sometimes a handshake is all you need to tell you that you like a person.". Agreed. Bill is just flat out likeable. Bill was a strong contender for the name of my pump.
Charlie - Educated. Charlie took too many risks. Diabetes and risks are not good companions.
Fred & George  - I looked up the names, but with no real heart. My diabestie had previously had pumps named Fred & George, and I just thought it would get too confusing.

Nothing really clicked. I chalked it up to being in burnout and feeling too disconnected to aptly name my pump. Then I wondered if I was in burnout because I hadn't named my pump...was the lack of personality that I usually associate with my pump hurting my diabetes management?

I didn't name my pump that day.

I named it 3 days later. When I got a fun, purple package in the mail.



Yep. Someone was listening. Now I need a new life goal because that purple Lenny the Lion case is all mine.

It was the motivation I needed. Funny how something seemingly small can make such difference. I mean, it's just a case. But it was fun, and new, and bubbly and made me feel happy. It gave my pump a face. And a name.

World, meet King.

Weasley is our King.

See him, not letting the hypos in with his smart guard. It fits. It's perfect.






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Today's reason why I'm Hypo: I was anxious. For no reason.