Why I don't believe in a cure.

I was asked the other day if I was doing the JDRF Walk for A Cure this year. The one in Brisbane is being held on the weekend that I am in Melbourne, so I considered doing the Gold Coast walk.

I went to sign up and got to the point where you tick the little box to say if you're fundraising or not. I stopped my registration there. Because I no longer believe in a cure. Truthfully, I never believed in a cure. I felt like a traitor signing up for the Walk for a Cure when I don't believe in one.

And somehow that makes me feel like a traitor the diabetic community. I know so many people who need to believe in a cure, it keeps them going. I don't want to insult them. I don't want to lie though and be all gung-ho for something I don't believe in. I know many people were told on Diagnosis that a cure was just around the corner. I wasn't. I was told this is for life, and not to entertain the possibility. I hope I'm wrong. I want the people who believe in a cure to be right so badly it aches.

Don't misunderstand me, I believe a cure exists. Already. I think we've found one. But I don't for a second ever believe it will make it to me.

Because Diabetes makes money. A lot of money. It's ripped from the pockets of you and I. I forgo seeing movies with friends if the choice comes down to fun or test strips. Test strips and living to see another day for the win. A cure makes no money. A cure will destroy companies who have big stakes in diabetes management. Unfortunatley, Type 1 Diabetes is growing. More people are being diagnosed. More money.

So I believe in advancing technology. In 10 years time I hope to have the smart insulin patch sitting on my skin doing my thinking for me. Although I do wonder if that's too close to a cure for release. I wonder if it will disappear into the dark abyss that so many potential cures fall into and be forgotten.

My family and friends ask me what I will do when I'm cured and how far away I think it is. I don't have an answer to that, because I believe my diabetes is for life. And it HURTS to think about the life I used to have where I could have run around naked and free if I wanted to. Boy, do I regret not crossing that off my bucket list when I had the chance. It HURTS to know that I will never live a day where I'm not fighting my own body for control of my blood sugar.

I DON'T THINK IT MAKES ME PESSIMISTIC. Yes, it hurts, but I am NOT SAD about having diabetes. If I feel like I can't face the truth that I will have this disease until I die, then I don't think about having this disease until the day I die. I think about having this disease for today and managing it for today.

And honestly? Not believing in a cure is what makes me TRY so hard to control my diabetes. Not believing in a cure gives me acceptance. My cousin has Type 1 Diabetes and his parents pushed the 'cure in 5 years' belief on him. He has never accepted or made adequate space in his life for his diabetes. I can't do that.

Not believing in a cure makes me happy, because I can move on with my life. So this post is not a sad post. This post is me, living with diabetes and living with what is available to me in the here and now.

This post is me, putting my efforts into supporting those living with diabetes now. 

 

It's Raining Pumps

Earlier this year Diabetes Queensland asked me to write a few sentences on how having access to my insulin pump had contributed to my ability to live well with diabetes and how it had positively impacted on my life. It was for a study that Diabetes Australia were hoping to present to the government to improve access to and funding of new technologies in Type 1 Diabetes.

I think at the time I was moving, and I wrote something real quick just to show my support for the initiative.

Today DA met with and presented the report to Federal & State Governments and PHI companies, asking them to open up support to more people with Type 1 Diabetes, and to increase access to insulin pumps, continuous glucose meters, and other emerging technologies.

Currently only 12% of people with Type 1 Diabetes are able to utilize insulin pump therapy. 12%!!!! When I think of how much of my life using an insulin pump has given back to me, it blows my mind. One more time for good measure - 12%. Its no wonder I can easily convince random strangers that my insulin pump is actually a police tracking device or that I'm obviously a doctor with a pager. With less than 15,000 of us running around in Australia with pumps on, people have no clue.

Currently, for anyone over the age of 18 years, there is no available help for initial purchase of the insulin pump - people never quite believe me when I tell them the little beeping, vibrating device on my hip costs more than my car! Thankfully, I had Private Health Insurance which covered the cost of my pump for me. However had I not been financially secure enough to afford PHI, which in itself can be quite costly, the insulin pump would have been a pipe dream for me. The current Government funded Insulin Pump Program has helped pay for a mere 611 children (as adults are excluded, something I believe was addressed today) to buy insulin pumps since its creation in 2008.

I feel incredibly lucky to have my insulin pump when so many people in Australia still go without. And as much as I have just said I feel lucky, by the same token saying I feel 'lucky' that I can afford my PHI or the pump consumables is not something I should feel. The pump gives me the freedom to fully live my life as I want to. Why should that be lucky or rare just because I have Type 1 Diabetes? Your regular Joe Blow walking down the street can do what he wants, when he wants. Why is it 'lucky' for me to be able to do that? Every Type 1 Diabetic should be able to enjoy the freedom of life a pump can give.

After being diagnosed with T1D more than 2 years ago, and going onto injections, I felt like my life had stopped. I didn't see a future anymore. When I woke up and thought about my future, it was a blur of needles several times a day and eating at regimented times to avoid hypos and hyper. My life was about pre-planning exercise the night before and taking less insulin at that night-time dose to account for exercise the following day. And if the exercise didn't happen for some various reason, my day was about constantly fighting high blood sugars.

The pump doesn't just give me a good A1c (now in the non-diabetic range with help from my CGMS which DA also presented for today), and it doesn't just give me less needles (and therefore I am able to deal with my diabetes better psychologically) and it doesn't just help to cut back on hypoglycaemic events. The day I got my insulin pump, I got my future back. I could exercise, eat, sleep, when I wanted. Like anyone else could. All of a sudden, I had a lot more time in my day to dream about silly little things like my upcoming wedding (which I would hate to attempt on injections), having children, living to 80.

I have my fingers and toes crossed that the Australian government will offer its support to all people with Type 1 Diabetes  in Australia and help them access these life-altering and life-SAVING technologies.

"Genie, I'm Gonna Miss You"

A few days ago now, the world was shocked to hear of Robin Williams' passing by depression. I don't know what its like to live with depression but it does affect some of the most important people in my life. 

Similar to diabetes, depression is an 'invisible' disease that can show no outward obvious physical symptoms. And for some reason, because people can't see these symptoms, they think its ok to have a very wrong, ill-informed opinion of what it's like to have depression, anxiety, diabetes or similar and think that that opinion is right.

Horrible misconceptions have been said about Robin Williams' 'choice' to die. I read a few articles, including this one by Tom Clempson, explaining how suicide can be seen from a person with depressions point of view, and how society and the media can have it very very wrong. Suicide shouldn't be seen as a selfish 'choice' by the person affected by depression. Tom puts it clearly –

“Robin Williams didn't die from suicide, he died from depression. It wasn't his choice to suffer that”.

Dealing with diabetes, that is something I can understand. Like diabetes, depression is not an illness you choose to have, and like diabetes, there is no magic button that switches it off to allow you to enjoy life without the burden of your health problems; whatever they may be, whether physical or mental.

So when Robin Williams passed, I called someone whom I love very dearly, someone who had been and is being affected by depression. I had nothing that I could say about it, and no reason to call, other than knowing this news was far more than an interesting bit of gossip to them. In the end I didn't ask, because certain factors involving the flu made me think that whilst someone is dealing with the flu, probably not the best time to make them think about emotions, and emotions and sore throat is probably not helpful. So instead, I decided to educate myself on what depression can mean for a person with it. I might have no idea what it feels like if anyone ever talks about it with me, but it doesnt stop my ears from listening and doesnt stop that someone (or some people) knowing that I care about them and will do whatever I can to help them feel ok.

To all the beautiful people in my life, who are battling depression or have been affected by it: You inspire me with your bravery and courage to fight.

Position Vacant

Position Vacant: Diabetics Wanted! 

Exciting New Work Available in our Growing Company 'DiabetesCorp'

Who We Are:

DiabetesCorp is a worldwide company, whose stocks and shares are growing every day. 

Our company is a very busy, fast-paced company that's sure to keep you engaged, as no two days will ever be the same, regardless of if you attempt to structure them the same. We have been assured by all our employees that they are never bored.

We are offering a very exciting, confusing and painful position in our global group. Full-time hours are required as we do not offer part-time. Working hours are 168 hours per week from Monday to Sunday inclusive and you will always be on call. You will not get weekends or holidays. We do not offer maternity leave and will ask you to increase your workload once we find out that you are pregnant. Once signed, working contracts are void only by death.

Applicants can be of any age, race or nationality. We pride ourselves on our anti-discrimination policy and we are an equal opportunity provider.

Role Requirements:

To be considered as a successful applicant you will need to possess a hard-working attitude, a willingness to learn and strong self-motivation skills

We require the following to be considered for the role:

• Maturity beyond your years
• Excellent maths skills
• Medicine degree
• Comfortable around needles and blood
• Able to handle criticism and stupid comments in a calm and collected manner from everyone you have ever met once they know you work for Diabetes Corp and complete strangers who have no affiliation with the company
• A sense of humour
• Able to work on minimal sleep
• Extremely alert and self-aware at all times
• Multi-tasker
• Ability to think on your feet

Position Discription:

Your role will be as a 'Person With Diabetes', the most essential role to DiabetesCorp. You will be required to check blood sugar levels, count carbohydrates and inject insulin several times a day to maintain your job function properly.

A few times a week you will be required to take control of emergency situations. The very nature of the emergency situation will make you feel weak, tired, confused, disorientated, shaky, sweaty and will affect your vision and hearing.

At the end of each days' work, your superior will rip up everything you have done and ask you to repeat the exact same work the next day. This will go on forever; however please note that no two days work will ever produce the same results, keeping you busy and amused.

You will have a meeting at minimum once every 3 months with a company medical official where your progress within the company will be rated.

Very basic hazard training will be provided briefly as your role is very prone to safety issues and injury is not uncommon. 

You will need to supply your own large handbag to carry around all the job-specific supplies.

We Offer:

• Mental anguish, stress, anxiety and depression
• the flexibility of multiple office locations, or you can work from home or anywhere else you go as the job travels with you
• On your initial start up with us required items such as glucometers will be supplied, but all refills and running costs will be at your own expense. You cannot claim these on tax as a work-related expense
• Great career progression - starting with microvascular complications and working your way up to macrovascular complications. 
• A Kellion Victory Medal to commiserate 50 years of service
• Great, friendly and supportive team environment
• Dental scheme*

We offer an attractive remuneration package costing you between $1000 - $10000 and up every year

If this sounds like a role that would interest you please email us at thisjobreallysucks@curediabetescorp.com.au

*Due to recent policy changes the dental plan is no longer available

I Spy With My Little Eye...

....diabetics. Everywhere I turn.

It's National Diabetes Week this week. We wouldn't have a national diabetes week without diabetics, and I seem to have run into a lot of them this week. One of the best things about having diabetes (look at me go - saying there's good things involved with diabetes) is meeting other diabetics. Getting to know their stories. No two stories are the same.

Lately, I seem to be meeting them left, right and centre. It gives me such a buzz every time, knowing there's other people walking around with broken pancreases.

I was at Garden City the other day and had just sat down to my extremely fatty, carbohydrate loaded lunch - the kind of lunch that would give my endo a coronary just to see the number written down in the carb column. I had just bolused when I heard a distinctive 'beep' coming from the table next to me. There's no mistaking that beep - the beep of a glucometer, springing into action.

My head instantly snapped over towards the source of the sound, and I saw a girl probably just a bit older than me stashing her meter away in her bag. I think I kind of just sat there in a happy daze as she pulled out an insulin pen, dialed up the number and proceeded to give herself the good stuff. "Look! Another diabetic" I basically punched my fiance in the ribs getting him to spot the other diabetic. Her husband, or partner, or brother or whoever he was must have overhead me, or otherwise noticed me staring weirdly at his wife, partner sister or whoever she was to him.

I guess the smart part of me was a little slow off the mark, because I know its rude to stare when you're doing your diabetic business. So I declared myself: "I'm diabetic too! Sorry, I didn't mean to stare. Its nice to know you're not alone." He nodded at me, as she had already begun eating. "It's ok, she feels the same way too."

As I left, we exchanged a friendly, 'in the club' smile.


Yesterday, the first day of National Diabetes Week, I was standing in a line for some delicious crepes at the Abbey Medieval Festival. Wearing a deep blue Medieval Dress, my purple people eater pump, Vernon, was clipped onto the top of my dress...I didn't think it would be very ladlylike to go fishing about in my bra to bolus. Pumps must be some sort of beacon for other pumpers...next thing I knew I had another young lady in front of me saying she "liked my pump",  as she pointed out her own purple Medtronic pump.

As we stood and waited for our crepes we swapped diagnosis stories and dates. We found out we had gone onto pumps at nearly the same time. Eventually we got our crepes and parted ways to enjoy the festival - but not without first wishing each other good BGLs for the day.

After the festival I came home to a facebook message from someone I knew a long time ago, who had just been diagnosed with T1D recently. I hadn't spoken to this person in about 6 or 7 years, but wanted to ask me some advice after finding out through a mutual friend that I had had T1D as well for the past few years. And that's the thing with diabetics. We reach out to each other, constantly, and I have not met a diabetic yet who isn't happy to help.



For me, it isn't National Diabetes Week. I'll leave that to the Diabetes Organisations. For me, it's National Diabetics Week. I'm going to celebrate all the amazing people who live with diabetes every day of their lives.

The Cronut of all evil

I have blogged a few times about how ignorant comments made about diabetes or to a diabetic about their condition can make people with the condition feel.

Most things, whilst I can get upset, I can politely discuss with the offending person because I know a very large part of what they have said comes from misconceptions made worse by the very wrong public perception of diabetes.

Then there's The Paramount Coffee Project, who came in with fully loaded bazukas and blew all other ignoranases clean out of the competition. The fact that I am still cranky enough the next day to write this is testament to the anger that pulsed hard through my veins.

I opened up my facebook newsfeed yesterday to see a post from the Paramount Coffee Project being passed around in diabetic circles. They had erred harshly on the side of "how is being this horribly ignorant and rude even possible" with their post. They had created a secret menu item that was only available if you asked specifically for it - prior knowldedge only kinda deal. Which is a great marketing strategy. Unfortunatley their marketing genius obviously used up all his genius on the secret menu idea and had a severe case of brain fart when coming up with the title and marketing catch phrase of this secret item.

They called a ridiculously delish looking cronut topped with affogato and some other fancy thing I can't remember 'Diabetes'. Yes, Diabetes is what they named their dish. The cronut they had pictured was very soft and looked like heaven for your mouth . Diabetes does not look like this. Diabetes looks like fingers covered in red and black pinprick marks. Diabetes looks like an alien insulin pump canula stark white against pink flesh. Diabetes looks like bruises, blood and needle marks. It looks like dark circles under your eyes and worry lines on parents' faces.

There's infinite amounts I can say about how naming a dessert 'Diabetes' is just plain wrong and should never have been suggested or followed through with in the first place. Comments were made about how there is no way they would ever call a dessert 'SIDS surprise' or 'Cancer Cake' (N.B. - I fully understand how serious these are - this is for example only) - because diabetes isn't recognised as being the serious disease that it absolutely is.

After the shock of the name, I read the description, which ended with the phrase 'So come in and ask for diabetes today'. This was the part for me, that made me wish all sorts of evil things on this establishment. NOBODY - I repeat NOBODY would EVER EVER EVER IN A HEARTBEAT ask for diabetes. NOBODY does this 'to themselves' willingly. I don't ask for needles, sleepless nights, hypos and hypers, fingerpricks in the blistering cold or anything else that settled into the spot where my defunct pancreas resides when diabetes wriggled it's way into my life.

Thankfully, the DOC was all over this. I think this post was averaging 3 tirades per minute about the seriousness of what they thought was a 'joke'. People posted links to tribunals to make official complaints, tagged Diabetes Australia and all sorts of fun things to help with the message that this was not even a little bit o.k.

Unfortunately for the establishment, this was all going on whilst the 'creative genius' behind it all slept soundly. The post was removed today and a belated apology issued. I don't know how many phone calls they recieved this morning. I feel sorry for the staff, who might have had to deal with eventuated threats from parents that they would bring their 5 year old with Type 1 in to the store so the workers could explain to him that some cronut he had never eaten was the reason why he has to inject insulin for the rest of his life. For Paramount's employees sake, I hope they left the phone off the hook today.


Power to the DOC (who I can see are still worked up over it this morning based on the posts and jokes being made about Paramount). I hope I never see anything this disgustingly ill-informed again in my life.

If These Walls Could Talk

I don't know how many other people watch the Big Bang Theory. Today the episode where Howard moves in with Bernadette played. They mentioned, “If these walls could talk”. Coincidentally the real estate showed potential renters through our house as we are leaving and moving to a bigger rental.

I happened to be getting a glass of water as one prospective tenant inspected the kitchen. Her eyes swept the cupboards, coming to rest on my bright yellow sharps container. It's not something you find sitting in among the canned veggies and cereal in your average Australian household. Nothing was said, but the stunned “OH MY GOSH, Do they do drugs?” look is preeeety hard to miss. I wonder what she thought my story was.

The walls know my story. If walls could talk, and she could listen, she would know my story. It's weird to think that diabetes ties in with where you live. A reminder that diabetes is woven into the fabric of my entire life, whether I think about it consciously or not. It's not necessarily a bad thing, its just there, all the time.

If my walls could talk: They'd complain that at odd hours of the night, light switches turn on and off, or the fridge light turns on, the illumination casting an eerie light over a weird girl who rapidly shovels food into her mouth, eyes still squeezed shut.

Maybe my walls would tell you that that girl uses a funny machine in the kitchen, but never in any other room. She carries it with her everywhere, but unless desperate, she always walks to the kitchen to use the machine that displays ever-changing numbers.

They'd probably tell you about all the times she had to wipe blood marks from them, and how much they despised having the sticky fluid dry onto them.

In agreeance with the floor, they'd muse about the strips that, even though they only get used in the kitchen, make their way all throughout the house. The floors and walls have a theory that these strips are building a colony and will one day take over the world.

The walls would whisper about how the girl often comes home and goes straight to bed. She is often woken by her phone and will complain of 'hypos' that made her go to bed.

If they could talk, they would gossip about how the girl is soooo disgusting and sometimes trash dives to retrieve food packages she threw away only moments before. And all she wants to do is read some numbers before throwing it away again.

I'm sure my walls would have many things to say about me, my diabetes, and how little use that bright yellow container actually gets because I always forget to clip my cannulas before throwing them away into the normal trash.

Food For Mortals

I didn't know this, but apparantely when you become diabetic, you don't need to eat anymore. We have no need to partake of any oral ingeston of any vitamins, minerals, proteins, good fats, or any other sort of nutrition at all. I think that all of my doctors must have neglected to tell me that I now absorb all these nutrients through magical diabetic sunrays or osmosis. Food is now something I have purely just to get fat.



At least that's the way non-diabetics can make it feel to me. I had a blood test on Saturday as my endo appointment was today. The collection lady was chatty and cheerful and my first impression was that I liked her and maybe I would always get my bloods done on a Saturday with her from now on. Unfortunately, my first impression was wrong. About halfway through the collection she took a closer look at what she was harvesting my blood for and out it popped:

"Oooooh this has your 3 monthly average (HbA1c) on it! Will it show that you've been a naughty diabetic?"

She was lucky there was a needle jabbing into my arm. Otherwise my fist might have (Who am I kidding might have? Would have. My fist WOULD have) met with her face.

Besides that fact that her job is purely to stick things into my veins and make me bleed into a little tube and not at all to question my diabetic habits, this is insulting. No wonder diabetics can have a pretty volatile relationship with food at points. The basic gist of it from everyone else is 'diabetic eating = bad. Starving = good'. Do not put anything into your mouth and you have done well.

I should have asked her if she had any alcohol last night, or EVER really and proclaimed she was bad.

EATING IS NOT BAD. That is all I have done that could possibly ever make me a 'bad' or 'naughty' diabetic. I test alot. I don't always write it down and I sort of went to my endo appointment empty handed, but I test so damn much that I could give my endo my ranges before and after each of my meals and what I needed help with. I take insulin for everything I eat. Sometimes it doesn't work out the way I wanted it to, but that's not for a lack of trying. The ONLY thing I could posibly have done to be a bad diabetic is to have provided my body with the nourishment it needs to sustain my life. I wasn't aware I had reached god status and no longer needed physical consumption of food.

And even if I didn't follow the testing and injecting regimen as closely as I do, I am still not BAD, and no diabetic is naughty for it and NOBODY has the right to make these judgments without knowing diddly-squat about us or what we have going on in our lives.

Diabetes Blog Week Day 5: Diabetes Life Hacks

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)


Diabetes Life Hacks? I probably don't have anything original that I haven't picked up from other blogs or D-forums/chat rooms.

I guess I struggle with remembering how diabetes devices affect my body - like lancing devices, set changes, etc. So whenever I need hacks these are the things I look for. 

For the 1st 6 months I was diagnosed I have a favoured finger that took the brunt of testing. Consequently that finger is now very calloused and require 1 1/2 whole lancing points above my other fingers to draw blood. Eventually I worked out a system where I assigned each finger to a meal or a specific testing reason. My thumbs are for my pre and post breakfast, index fingers for pre and post lunch and middle fingers for pre and post dinner/before bed. My ring finger (and the equivalent on the opposit hand) is for pre-driving checks and my pinkies, because they bleed much more readily are reserved for hypos. In doing this my fingers have a chance to heal and the callous on my favoured finger is slowly softening. 

As well as this, I change my lancet on pay day every fortnight, which is the same day I buy my strips and other diabetes supplies, so I am just able to start with everything fresh. Failing every fortnight if I buy supplies in bulk, I try for at least once a month


My next hack is to remember when I last did my set change as I always forget and will just wait for the insulin to run out. I calculated an average of how much insulin I use per day and I fill my insulin up with this exact amount for 3 days, plus approximately 6 - 7 units for prime/air bubbles. It also helps to curb overeating because I have to remember I have only given myself x amount per day, so if I pig out one day I take it easy the next to save premature set-change.


The other hacks I use most often are about remembering carb counts for things. When I package up sausages I will write on the outside in marker how many carbs are in the serve I just froze so Its not something I have to look up later. Or for cereal I find a small bowl, scoop, etc that is roughly the size of a serving and have attached to it a label with all the cereals I eat and how many carbs is in 1 scoop - so that way  I never have to weight it and can just quickly use the scoop to get out an exact amount of carb. I tend to cycle through about 3 different cereals so the scoop has all 3 written on it and I just move it from one box to the next. 

Not over exciting hacks, but they help make diabetes care just that little bit easier for me.

Diabetes Blog Week Day 4: Mantras and More

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Dance Magic Dance! I am a shocking dancer. No sense of rhythm whatsoever. But when diabetes is kicking my ass, my lack of groovin' moves is the least of my worries. So when I'm having a hard diabetes day, I post a few gripes to the DOC, and when I have had understanding and suggestions a plenty thrown my way from amazing people all over the world, I go to groove town. I twerk in my kitchen like no-one can see me (except my bogan back-door neighbours really can see me).

Its not just the dancing that helps - I have a collection of songs that specifically relate to diabetes (at least in my head they do anyway). They're all mostly break-up songs and I sing them to my defunct pancreas. Except for that one random 'The Used' song "Together Burning Bright" which I reserve for when I've had enough hypos that my happy-making hormone is exhausted for the day. On particularly bad days I close all my windows and doors and warble along with Bert McCracken to how everything is going to be AOK at the end of my day:

"I think it's gonna be alright, now
I think it's gonna be okay
Just close your eyes
'Cause we are only sparks
But together burning bright"

Failing singing and dancing, the diabetic rap always makes me want to wrap my diabetes in a bear hug again, cos without diabetes, things like this wouldn't exist:

Dancing doesn't exactly solve diabetes problems...but it makes me happy and gives me energy, which bad diabetes days suck from me hard.