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Friday, 26 September 2014

I am so hungry right now

There's a few funny things I like to hold onto from before my life with diabetes that make me feel, well, less diabetic. Normal, in a sense. One of these things was that although I was diagnosed with Type 1 Diabetes over 2 1/2 years ago, I maintained a similar eating regime. I struggled when I was 1st diagnosed to match my food to my insulin, but once my loyal pump came along it was a non-issue and I could go back to eating as I pleased. Which made me feel normal. I already had to test my blood sugars, give insulin in public, so being able to go out with friends and eat what I wanted was great in helping me to feel like diabetes wasn't attached to everything.

Lately, not so much. I don't know if any readers have had this problem, but it seems like all of a sudden, that small grain of my previous life I was holding onto, has slipped out of my fingers and ended up in the diabetes ocean that laps close to so much of my life already.

At first I thought I was getting higher BGL readings from a barrage of illnesses that I managed to catch, one after another. However they went away and my higher BGLs did not. I upped my insulin to food ratio. I upped my basal ratio. Despite that, I found that I could eat only select foods without my BGLs going into a tizzy.

So I increased my exercise from about 40 minutes per day to 1 hour and 30 minutes every day. All it has done is give me hypos at 3am. I haven't even lost any weight.

I am at a loss. The only thing I find now to keep my blood sugar in check is to eat minimal carbohydrate, 30gm for breakfast (whcih is really pushing it), 20gm for lunch and 20 gm for dinner. The sudden decrease in carbohydrates has left me feeling run-down, tired, cranky and I want to cry.

I feel like a failure and a liar. I have spent my time as a diabetic up until now chastising people who tell me "I cannot eat that". Now it seems they are right, and I really can't eat that. I consoled myself that at least, even though I had to have insulin, I could still eat what I wanted. Now it seems I have the worst parts of both Type 1 & Type 2 Diabetes.

I'm at a loss and I want my old life back (see, lack of carbs making me sad and emotional. Next minute I'll pull out my simple plan CDs, don some heavy black mascara, and go sit in front of Hungry Jacks in Queen Street with the rest of the emo kids).

This diabetes thing, it sucks.

Thursday, 18 September 2014

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. 


Wednesday, 3 September 2014

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.