Month: February 2016

For The Love of Automation

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At 8.10am yesterday morning, I made a call to a clinic where I had an appointment booked.

“Hello, you’ve reached [clinic name]. Our offices are staffed on Monday, Wednesday and Thursday from 8am to 3.30pm, on Tuesday from 8am to 2pm, and closed on Fridays. Please try calling again during business hours.”

When I was told during business hours that I should try calling back during business hours, I hung up the phone in frustration. I knew that once my work day headed into full swing, I’d likely forget to call again before 3.30pm.

When I eventually did call again at 1.01pm, I was greeted with the same message. Only this time, I listened long enough to catch an additional option on the end where I could leave a message. I left my name, the purpose of my call, and a telephone number that I could be reached on.

At 1.09pm, that call was promptly returned.

“I was wondering if you would be able to e-mail me my appointment confirmation letter now so that I can arrange time off from work,” I asked the receptionist.

This clinic usually sends confirmation letters four weeks prior to an appointment. However since I would need a few days off from work after this appointment, I wanted the letter as soon as possible.

“We only send appointment letters out four weeks in advance. We don’t actually send the letters ourselves. It’s automatically generated through the computer. Unfortunately there’s nothing I can do,” she replied.

“Would I be able to get a letter from the doctor?” I asked.

After a few umms and ahhs (much like my own), I decided that I would simply have to give my boss the dates now, and owe him the appointment letter and doctor’s note when I got them. I thanked the receptionist for returning my call, and she wished me a great day.

The reality is that many large businesses I deal with seem to go out of their way to avoid human interaction with me. As my mother often says, gone are the days where a business caters to what the customer wants.

Yet if I were the one cancelling the appointment, I’d be expected to call up in person, with reasonable notice, give an explanation for cancelling, and possibly jeopardise my ability to make appointments in future.

If I were to fall sick tomorrow, I’d love nothing more than to be able to send one generic mass email to everyone I had to cancel on. But in reality, I’d be on the phone or emailing every single person affected. They’d have an explanation, my sincere apologies and an invitation to reschedule.

If I can make that effort for free, surely businesses can be more flexible in delivering their services when the need arises.

A freaking letter shouldn’t be that hard…

Giving Up Lent, For Lent

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Of the many things I have attempted to give up for Lent over the years, I can only remember one that I actually saw through until Easter. I managed to give up my favourite computer game, Captain Comic, for a whole forty days back in primary school. I fondly remember playing it on our very first computer in the ’90s, that a family from school salvaged for us from a rubbish heap.

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In recent years, my motivation to keep doing Lent is diabetes. Even though I’m an adult and I’m no longer forced to do Lent, I still like the idea of using it to change my “bad diabetes” habits. Give up chocolate, give up junk food, exercise, have perfect blood sugar levels and perhaps stick with it after Lent…

The reality is that I’ve failed almost every time. I’ll end up feeling guilty and unhealthy for breaking. I’ll end up feeling trapped by my diabetes, with no willpower to control my bad habits. Even when I have made it a fair way in, I’ve ended up subsiding and binge eating towards the end.

But I’m only human, and I shouldn’t have to apologise for my bad habits. Besides, Lent doesn’t just last forty days for me. I already give up a lot for my diabetes, throughout the whole entire year.

Money, for starters. Insulin, test strips, needles and even jellybeans aren’t cheap. In May I’ll be switching to an Insulin Pump, which only costs around $8,000. Thank goodness for private health insurance! Even though my expenses are heavily subsidised by the Australian government through the NDSS, diabetes is still not cheap and I can think of a million other things that I would rather put that money towards.

Food. I have to think carefully about every item of food that I put into my mouth. Carb content? Weight? Is it a pre-bolus food? Or does it need a delayed bolus? Feelings of satisfaction after a nice dinner are often replaced with feelings of guilt and anger if the follow up result is not ideal. I’ll often have to forego tempting foods for which the spike is just not worth it.

Thoughts. Diabetes is one of the first things I think about when I wake up in the morning. I’m constantly plagued with thoughts of where my blood sugar is sitting after a meal. Did I give too much insulin? Not enough insulin? Did I forget to bolus for something? Then at bedtime, I’m usually playing guessing games as to where my levels are headed through the night.

Confidence. It’s hard not to judge myself by my diabetes, when it’s on my mind all the time. It’s hard to feel good about myself when my diabetes isn’t going so great. As my diabetes gets older, I find myself thinking more and more about my future. About how well I am managing my diabetes, and whether I am “healthy” enough to withstand complications.

Time. Finger pricks, insulin injections, treating a high, correcting a low and just thinking about it all! Diabetes doesn’t stay on the desk at five o’clock on a Friday. There is no annual leave, sick days, personal leave or rostered days off. Finding the time to do ALL of this on top of life is a miracle sometimes.

Lent always makes me feel bad about myself, and I know that I’ll end up failing miserably. So this year, I’ve decided to give up Lent, for Lent. I’ll still be working towards some of my diabetes goals in the lead up to Pump Day in May.

But I certainly won’t be shying away from a slice of this Macaroon Cake I made last week. Happy Monday!

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Selfish Perspectives

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I feel like I’ve been pretty selfish this week.

On Monday I shouted iced coffees for my team at work on a 42 degree day. I drove my air conditioned car to diabetes clinic, paid an overpriced fee to park undercover and complained about it. I made the decision to switch to an expensive insulin pump in May, even though I can do the same thing with injections. I whinged about an endo who wasn’t supportive enough, despite the fact that I had access to a diabetes specialist and paid absolutely nothing to see him.

On Tuesday I bought croissants to have for lunch the next day, even though I had bread in the cupboard at home. I bought my favourite coffee capsules that were on sale, despite the fact that I already had a stockpile in my locker and instant coffee in the kitchen that would do the same job in satisfying my caffeine fix. I also went out dinner with my family for Mum’s birthday, despite the fact that the cupboards and fridges at home are never empty.

On Wednesday I wanted to make a cake for my Mum’s actual birthday, despite the fact that we’d already celebrated with a fancy dinner. I drove my air conditioned car to the supermarket that is literally a stone’s throw from my house, despite the fact that I could have walked there. I bought cooking chocolate, almonds and whipping cream, even though I could have easily made a simpler cake with the ingredients on hand at home.

On Thursday I asked my team mates if they wanted to pitch in and play lotto for the $20 million this Saturday, even though I already have enough money to live comfortably. I walked over to the coffee shop at lunch time for an iced coffee, even though I had coffee capsules and instant coffee at work. I apologised for the gift card I gave to my Mum for her birthday because it wasn’t thoughtful enough, despite the fact that I’d spent a generous amount of money on it.

Which brings me to Friday. More than likely, I’m going to buy an overpriced coffee on the way to work this morning. I’ll be too lazy to make my lunch at home, and I’ll just buy junk food that I don’t really need to be eating. I’ll probably withdraw some money from the ATM on the way out for the weekend, even though I have bank cards in my wallet that do the same thing.

And you’re probably wondering what the point of this rambly post is, right?

I’ve been reflecting on all of this today, and it really got me to thinking about Spare a Rose and my own donation to Life For a Child a week ago. When I think of the disadvantaged children in other parts of the world who cannot afford insulin and diabetes supplies, my own complaints look really petty and selfish. Compared to all of the unnecessary money I’ve spent this week, my own donation to Life For a Child seems pretty poor.

So, today I’ve matched the donation I made to Life For a Child a week ago.

Without access to diabetes supplies, education and healthcare, people with diabetes will suffer. Without insulin, people with diabetes won’t survive. That’s a human being living with the same condition, just like you or I. Or a son. A daughter. A sister. A brother. A mother. A father. A friend. A family member. An aquaintance. Or even a stranger.

If you are reading this, you are touched by diabetes.

And nobody deserves to die because they have diabetes.

This weekend, consider telling your loved ones that you’ve given life to a child with diabetes rather than gifts.

Flowers die, but children shouldn’t.

Visit sparearose.org, and give life to a child with diabetes today.

Also be sure to check out the folks at t1interational, who advocate for people with diabetes in developing countries. I wrote about their Insulin 4 All campaign in November.

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The Challenges of Parenting a Young Adult With Diabetes

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Today is my Mum’s birthday, and I couldn’t think of anything more fitting than to re-share these words she wrote about the challenges of being the diabetes parent of a young adult last year. And also because I got a bit carried away making birthday cake last night! Happy Birthday, Mum!

We are so proud of you Frank, that you manage your diabetes yourself. I must admit, in the beginning when we were learning about type 1, I didn’t know how you would cope. I myself found all of the information given to us mind blowing. There was just so much to take in.

So, fast forward five years and you ask the question, how much do your parents think about diabetes. Obviously, over time, the focus has changed. You have proved that you can manage your diabetes yourself, so that element is a relief for us. But we never stop worrying. Just knowing that you could black out if you went too low is always at the back of my mind. I am so relieved that I have never had to use that glucagon kit that we have in case of emergency.

We worry when you are out by yourself, especially since you don’t like wearing your bracelet. You wouldn’t believe our sighs of relief when you returned from the apartment after doing the BridgeClimb that night in Sydney. We know that you don’t want to burden us with your diabetes, so we try to act calm even when we are worried silly. When we hear noises coming from your room in the middle of the night, we would love to come in just to see that you are okay. We know that you wouldn’t like that, but hope that you will let us know if you ever need help.

We notice everything. When you don’t have breakfast in the morning, when you don’t eat all of your lunch at work and the times where you don’t eat much at all. We notice when you are grumpy and don’t want to talk, when you eat heaps of sweets and junk food, and when you look tired or unwell. Living in the same house, we know when you are checking your levels. We see you giving your insulin. We even notice the boxes in the fridge! I even feel guilty that we can just have a piece of chocolate in front of the TV without giving it a second thought, whereas you have to decide whether you are going to have it or not.

I talk to my friends about diabetes. I try to explain it to them. Most people, like we used to, know nothing about type 1 diabetes. Living with someone who has type 1 diabetes has made us more aware of the foods we eat and our lifestyle. Especially sugar and fat rich foods and recipes. Whenever someone in the family is sick, I make sure there are no diabetes symptoms. Any one of us could get diabetes. I’m very conscious of type 2 diabetes as well. So many people have it and it can be avoided!

Reading your blog has been great and I can see a difference in you. Connecting with people going through what you go through every day has made you more open and confident. It’s good to see you taking an interest in diabetes and not shying away from it.

Diabetes has become part of our lives. We don’t realise it, but “it’s there.” We have become diabetes aware. Whenever anything is reported in the media relating to diabetes, we take notice. Who can think of Sir Charles Gardiner Hospital without thinking of the wonderful Diabetes Clinic there. We know when it’s National Diabetes Week. There’s the NDSS. The Run For A Reason supports diabetes. We take notice of celebrities and sportsmen who have diabetes. We read your Diabetes WA newsletters that are sent to our e-mail. We hear of all the research that is being done into diabetes and we always hope that a cure might be possible in the future.

We are always thankful and happy that you will be able to live a normal life, and that we live in a country where we have access to doctors, hospitals and good health care. Even though we don’t have diabetes ourselves, we like to think you consider us supportive. You may not think we understand, but if you don’t include us with what is happening then it is more difficult for us. We are here sharing the journey with you in our own way whether you like it or not, whether you include us or not. Don’t ever forget that.

Stamp Of Approval

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“You want a pump, don’t you?” Gwen asked me in the hallway outside of her office on Monday afternoon.

“The doctor’s written here in your file that you’ve made up your mind and that you want a pump. Have you picked which one you want?” 

I knew which pump I wanted. It’s not like there was a huge choice to pick from, anyhow. I guess I was just a little surprised at how quickly things were moving. I honestly thought that I would have had to justify to Gwen why I wanted the pump.

“Right, I don’t think I have any of the Animas forms left,” Gwen replied as she hurried off towards Reception to retrieve paperwork for the Animas Vibe insulin pump that I’d picked.

We sat down in her office, where I was met with a stack of paperwork. We completed the order form for the pump itself. We completed forms to be sent off to my health insurer, who would be covering the cost of my pump. We completed forms to be signed off by the endo. We completed forms to be sent off to the NDSS, in order for me to be eligible to purchase subsidised pump consumables. We talked through order forms for the consumables that I will need to purchase prior to pump day. And we completed content forms so that everybody has permission to liaise with everybody throughout this whole loooonnnnnng process.

Gwen grabbed her diary from reception, flicking through pages in search of a block of free days for pump fitting. We eventually settled on a Monday and Tuesday in mid May, where I would be hooked up and trained under the supervision of both Gwen and a representative from Animas.

Gwen has been a significant part of my diabetes journey since the day I first walked into her office nearly six years ago. She’s been the one of the few constants I’ve had among an array of rotating diabetes healthcare professionals. I felt as though I owed her an explanation as to where my decision had come from. I felt like I needed to explain to her why I was abandoning the method of injections that she had taught me to do. In some way, I felt as though I needed her stamp of approval in order to move forward with this scary new way of managing my diabetes. 

But the words were struggling to escape from my mouth. I was overwhelmed.

“You don’t need to explain it to me,” Gwen said.

“I do. I never made this decision lightly. That’s why I didn’t decide straight away back in November. But injections are a lot of work. I don’t do the same things every day. I don’t eat the same meals every day. I don’t live that regimented lifestyle that seems to produce those good results. I feel like I owe it to myself to give the pump a go. My hba1c has been fluctuating within the range of a point over these last few years, and I’m aiming for it to be more stable and at the lower end of that range.”

But no matter how many words I managed to string together that day, I realised that this wasn’t Gwen’s decision to make. It was mine. It was a decision that I made for my own diabetes, and my own life. It was a decision that I will have to own. Right now, it’s a decision I’m damn well proud of.

Gwen totally respected that this was my own choice to make, and she never once tried to sway me either way. But it was still nice to feel a stamp of approval in her final words.

“I think you’ll enjoy pumping. I think it will give you the edge that you’re looking for.”