A blog about diabetes, voldemort, and how many carbs are in *that* piece of chocolate cake
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Friday, 29 April 2016
Where Have All the Test Strips Gone?
Monday, 18 April 2016
Leaving the House with Diabetes in Tow
I'm up to emails right now, and I'm happy to say I only have 4 emails in my inbox, all with actual useful information in them.
One of them, I can delete once this post is done. My husband sent me the picture below, and I never did anything with it until now. There was no explanation in the body of the email. There was no body of the email at all, just a subject line of "You Perty" (Thanks Hun, you perty too).
Sunday, 17 April 2016
Welcome Back King
I am pretty impressed with the life of my MiniMed transmitter. I think that transmitter warranty life is about a year, but it has been kicking along for 3 and a half years now, and still holds charge well, whilst somehow seeming to give more accurate readings the older it gets. Though that could just be that I know all the tricks now.
So at least I have my back-up transmitter and pump working, but it's driving me nuts. I'm definitely a spoilt princess of diabetes land, and I'm used to my new technology.
I have to press the esc button to see my sensor readings, rather than having a beautiful, colourful graph and SG displayed on the screen at all times.
The sensor doesn't suspend before low - only on low. I actually have to treat hypos myself. I have a toothache right now because I've been having to have juices, when normally the sensor just catches me and I don't even think about it.
I have to scroll into a menu to set a temp basal. Being my lazy self, it just means that I haven't set a temp basal since swapping onto the old pump. With the 640G, the shortcut to a temp basal is on the screen, and only takes 2 seconds to set-up.
My meter doesn't connect!!! I have to save things manually in capture event. Sadly, my educator will just have to scroll through my meter because I am not bothering to capture that many events. And wearing a dress this week has been hard, not being able to bolus from my meter. Many, many strangers have seen my undies this week.
Don't get me wrong, I still love the old MiniMed, but I am so used to the 640G and its more intuitive programming. I swear, it can tell what I'm thinking and what I need. Its just a lot less thinking and time spent actually using the pump on my part. I kind of just let the 640G do its thing.
Thankfully I am connected back up to the 640G again with a new sensor due to start tomorrow morning. I'm going to treat this as an exercise in the art of appreciation.
Thursday, 14 April 2016
NDS-What?
To ensure you don’t run out, we urge you to consider stocking up now. This way you will have peace of mind during the next 4 months of supply transition."
1. - What the deal is for those who live rurally? They are likely to be impacted quite a lot by this move. Rural pharmacies may also be less likely to stock items if they only have 1 customer buying the product.
Another factor to consider, that I highly doubt the federal Government has even thought about it, is that this may directly impact on donations made to DA. Thus cutting support even further. I always include a donation every time I order - I factor it as 'postage costs' (seeing as we don't pay postage) and just hand it over as a donation instead. I don't miss the donations that I make, because they're small enough not to impact, but they can tot up to a fair bit over the year. I will of course still donate, but I run the risk of not remembering unless reminded.
Monday, 11 April 2016
Cured: simple as that
Which is a problem, from an awareness point of view. It means the audience isn't ever set up to learn more about the medicine. What do I know about MS from watching that episode? I saw his hand shake a little, occasionally. That's it. I didn't expect to see all the complexities of living with a disease like MS, but I would have liked to have seen some. Disease can be quite character building, but instead I was distanced from the disease. Made to feel like it was unimportant, and the realities of his every day life were belittled. Focus was shifted entirely from the characters' MS (the entire reason he was even in the episode) and instead honed in on his suave pick-up lines, with the disease relegated as an itsy bitsy sub-plot built in to simply further a bit of fluff romance.
If the print and screen world is constantly curing everything, there's no chance to show what the condition is like in real life. It's lazy, and it says to the audience that those of us living with medical conditions aren't worth taking the time to learn about, or accurately portray.
When dealing with medical conditions in T.V. shows, writing, or any other media, there is a tendency to create the cure, rather than deal with the condition in a practical and realistic way. Maybe because it makes the plot too complex, or because writers and creators think it will be too hard to constantly factor that condition in. Maybe they worry they will lose audiences if they haven't learnt to sift out the mundane details of living with a disease, illness or disability from the really cool stories we pick up along the way.
Whatever the reason, there's a solution: Go and talk to a living gold mine; someone with the disease themselves. Get the basics, tell the basics. Get the humour, the happiness, the sadness, the fear, the anger, the community and tell that side of the story. You don't need to focus everything on the disease, but don't include a disability or otherwise to simply cure it 5 minutes later. Such lazy writing serves no purpose other than to illustrate a lack of compassion and understanding on your part, and to tell audiences that you are not creative enough to get to a particular plot point without disrespecting the experiences of your own characters. (And by extension, the real-life versions that you have based them off).
Thursday, 31 March 2016
Access All Channels
On Easter Sunday morning, when I should have been at home figuring out how much chocolate I could fit in my mouth for breakfast, I was instead hanging out at Contact, a speculative Fiction convention.
The 'Access All Channels' topic was more of a conversation between the audience and panelists, which was great. I felt like they really wanted to get writers involved in how they treat, write, and talk about illness and disability. Some really valid points were brought up, that made me think about the way that I write, and how I react to things that are written about diabetes.
One of the classic things written by diabetics that I see is the '10 things not to say to a diabetic' list. They always put a bit of a wry smile on my face as I play bingo with the things people have said to me. The list is meant to entertain within the circle of those who have the particular illness, disease or disability that it talks about. But what does that list mean to people who don't have the condition? What if that list is the first thing they ever read about what it's like to live with that particular ailment? It says to the reader "Don't say anything to me". It makes them afraid to say the wrong thing, and so they don't talk to us. Which limits their sources when they do genuinely want to read or learn about the disease. If they're reading that list in the first instance, then obviously they are curious; and straight away we are stifling their curiosity and heading them towards a path of ignorance.
What we want is actually the opposite. We want people to write through their ignorance. You can't know every in and out of a disease if you don't have it, and you can't hope to gain any knowledge without being given the chance to acquire it. That's a problem on our behalf, and its something that we should be more tolerant of. We should be encouraging people not to be shy about getting things wrong, because then we have the opportunity to educate about what is right if the person really does want to learn and therefore help us to educate even more people. We need to chill out, and see that if it really is a mistake made because the writer doesn't have that real world experience, that we should be happy to send some friendly facts. If one person has pointed it out, then we don't all need to point it out. I am guilty of this, I know I am. I hope that I can keep a more open mind to diabetes in media and writing.
That's not to say that every case can be treated in this way. Sometimes things are written that are genuinely and truly offensive. Jamie Oliver is a pretty prime example of being given multiple opportunities to recognise the ignorance and mistruths that he spreads, but he continues to do so, so as far as I am concerned he is fair game. You also have people like Cross fit's Greg Glassman, who when confronted with disappointment at his comments about diabetes, decided to step up the offense to a whole new level of 'Wow, you half-wit'.
Experiences can also vary from person to person with the same condition. There are things said about diabetes and surrounding policies, technologies, treatments or day-to-day life that I don't always agree with, and I have had to learn to distance myself from the views and opinions that I don't like - and I know that people will sometimes disagree with my opinions too. I recognise that everyone considers their own opinions valid, and that the more we allow talk about diabetes, the better it is for us (again, there will always be exceptions).
Understand where your knowledge base comes from, and that if you have the condition being talked about, that your knowledge base is alot more personal than that of someone who doesn't have the condition.
The point I guess, is understanding that the more writing is done about illness or disability, the more normalised it will become in society. Even if we consider the writing to be bad, we don't need to jump all over it and discourage the writer or publication from ever trying to share our experiences again. It can be hard work advocating for an illness, and we need them to want to be on our side and want to understand. A simple message about what you thought was wrong, unsafe or offensive might be all it takes for an issue to be resolved, and for the writer to think of their mistake as a positive learning experience, rather than a deterrent. It also shows them that we can be approached before publication to fact check if we act like a friendly bunch of people.
I'm not saying I'm going to be perfect at tolerance. I will have my exceptions - media releases on the blueberry tea cure are one, and if I think something could be dangerous for the illness it is speaking about, or it is apparent that there was an ability to fact check but the author was too lazy (Hansel and Gretel) then I'm likely to arc up. But I will stop and think if what I say about a piece of writing is really helping, or if its just being picky.
Monday, 28 March 2016
Happy Birthday, Sweet Morty
As of yesterday, Morty (my diabetes) officially turned 4 years old. An Easter diaversary. Morty is nearly school-aged. I dread the day when Morty learns to count and realises that throughout the year I have only bought it 36 presents, throws a Dudley and starts screaming at me "36! But last year, last year I had 37!". I suppose I will have to do a quick Petunia on the situation and promise to buy it another 2 new CGM sensors to stop a full-blown blood sugar control meltdown from happening.
I suppose I might buy Morty a card. But what do you say to diabetes?
If I loved my diabetes more, I might talk about the day I bought it home from the hospital with me. And how bloody confused I was leaving after an overnight stay with a permanent part of my life that I didn't know how to care for. Would I tell Morty that I never wanted to bring him home with me, and wished I could leave him sitting in a bed of his own at the hospital forever? I probably wouldn't want to tell him he was unplanned.
I won't go off on that tangent though, because I don't love my diabetes enough to reminisce fondly about the first time I held a needle to my stomach.
I could talk about how it Morty has grown as a disease. The progressions I saw after getting past that initial 3 month period when my world became a complete blur of eating, injections, sleeping and crying everywhere.
How I saw changes as Morty grew from that volatile infant state to toddler stage. I sort of knew what I was doing and was managing to look like I had my shit together. I could leave my house with my hair and make-up done; looking composed and not at all like I had just dealt with a tantrum of epic proportions.
Maybe then I will talk about my dreams and hopes for Morty's future. How much I'm hanging out for him to grow up, because I'm not as fond of his childlike behaviour as he thinks I am. I have been told, however, that an unfortunate aspect of raising a condition like Morty, is that they don't grow up. The most I can hope for is that with lots of therapy (and money) his tantrums may become a little easier to control. That as he grows, I will get to know the early warning signs of a melt-down and soothe him before I'm left with a screaming toddler disease in aisle 3 of the supermarket, because he wants lollies NOW.
The sign off would probably read: 'Happy Birthday, sweet Morty.'
Saturday, 26 March 2016
Hypo Tax got me like....
Monday, 29 February 2016
Diabetes.It
In Italy, I found 2. Or 2 found
I met the first Type 1 diabetic in Venice. My husband and I were on a bit of a search for good gnocchi. Google recommended 'Osteria Al Milion', so off we went.
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| Just need a miniature quaffle... |
"I have one too". Proudly, she lifted her shirt to show me her pump. "But mine is old". A beautiful and well kept white MiniMed Veo sat clipped over the lip of her trousers. If hers was old, she must have taken the best care of it. King is less than 6 months old and he looks like he's been in a few cat fights in that time.
I smiled in acknowledgment and she took the encouragement, coming over to stand next to us. "Your only the second person I have seen with diabetes. I saw another pump once, in the market." She paused. "It's hard".
I agreed with her, and we had a bit of a chat about the joys of diabetes. By now, the restaurant was filling up a bit. She excused herself as our food arrived. Before she left to attend to other patron she turned back with a warm smile, and gave me the carb counts to my gnocchi, the panna cotta I had ordered for desert and the bread I had eaten.
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| Pannacotta...carb count: Delicious so it doesn't matter. |
A week or so later found my husband and I in Sorrento (where the weather was remarkably warm). From Sorrento, we took a day trip out to Pompeii, which was only a half hour train ride by the Circumvesuviana line. Pompeii was quite warm, and for the first time since arriving in Europe, I was walking around blissfully sans jumper, T-shirt only. My T-shirt of choice just so happened to be my Type 1 Diabetes memes, "Type One Dia-Bad-Ass" Tee.
It was as my husband and I were trudging our weary way back out of Pompeii that I found my second diabetic in Italy. I was just hitting hypo (after a 3 hour walk around Pompeii in the sun) and focusing on placing one foot in front of the other when I heard "Are you diabetic?". My head swivelled towards the direction the magic word had come from. "I saw your T-shirt". An American girl had outstretched her hand towards me, holding in it, yet another glorious Medtronic pump.
"Yep!" My face split into a shaky-hypo grin.
My husband shook his head as the American Girl and I started up a conversation. "Seriously? You have a superpower. Stand together, I'm taking a photo".
We obeyed, and he clicked a photo, while her friend (or boyfriend, I don't know) did the same.
I didn't find out her name, but I do have a picture of her. And I know she's from California, and that she's excited for the 640G, which they don't have in America yet, but her UK friends have told her all about it. I also know that she's awesome by default.
I'm in England now, and just waiting for London to give up the diabetic goods!
Friday, 12 February 2016
Brisbane Airport Take 2
I don't know how this is going to turn out.
I'm snuggled up in my hotel room in South Korea right now, tapping this out on a portable keyboard the size of my hand, and fighting with blogger about how to login from a tablet. Blogger is definitely winning this fight, and has forced me on to a very basic app with little functionality. But I'm trying anyway, just so Blogger knows that it hasn't broken my spirit yet.
So my honeymoon Fiiinally rolled around. Only 9 months after my wedding (That sounds like a long time. I could have had a baby in that time if Id wanted to!) We're off to Europe for a month, with a stopover in Korea tonight.
My insulin is back in the Fridge (*fingers crossed it lasts because the Fridge to Go was pretty much room temperature when we got to the hotel), and my BGLs behaved quite nicely on the plane, stayingf between 4 - 10.
I did get randomly seletced to do a full body scan at Brisbane International. My immediate thought was panic. Followed by panic. Then I remembered the handy little airport security card Medtronic give you, which yes, I had bought with me.
So random security guy (who looked very familiar,) who picked me out for this is trying to tell me the full body scanners are fine to go through with a pump because people with pace makers go through. I wasn't having any of it and thrust my little palm sized airport security instructions under his nose. Unfortunately for me, the instructions do say that the pump is removable (which contradicted my doctors note). So my options were limited. I had to do the scan.
I made it really obvious that Iwas feeling very anxious about taking my pump off and just handing it over to a random I had never met before. They must train them better at International, because he actually listened. He explained the process step by step, and answered all my questions (unlike the last security douchebag I came across in domestic.
The deal was that he would walk my pump around the scanner, in my sight at all times. Then he stood at the other side of the scanner as I got in. As Igot scanned, he held the pump up in the air, hands towards me, at my sight level. Door opened, I got my pump back. Then he walked me over to the dexplosives/drug swab dude, explaining exactly why they were swabbing the pump, which was basically because it hadnt been through any screening points.
Whilst I wasn't entirely happy at having to take my pump off and hand it over, I was very thankful to the security guy for realising how anxious I was about this and taking the time to explain what was happening and why, and doing what he could to help a situation that I wasn't comfortable with.So kudos to him.
Only 2 more airports to go through, and hopefully I won't get selected for 'random screening'.




