Diabetes Musings

Diabetes As An Election Pawn

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The Australian government recently pledged $54 million towards subsidising Continuous Glucose Monitoring technology in children under the age of 21 if re-elected this year.

While I am happy for the children and young families who may see benefit from this technology, I also felt rather saddened that I would be left out. It was difficult to digest comments from Health Minister Sussan Ley that seemed to imply that glucose monitoring issues were only pertinent to young people.

I do sympathise with young children and their families. I’ve often acknowledged that diabetes may be more challenging in an adolescent context. However, my time in the Diabetes Online Community has taught me that everyone’s diabetes is different. People are diagnosed with type 1 at all different stages in their lives. Each person’s experiences are unique. Each person’s experiences are equally challenging.

It shouldn’t be a case of who needs it more than the other. I shouldn’t have to justify my need for a CGM over a child’s. Or a teenager’s. Or a person older than me. We shouldn’t be at war with each other, when we are all walking the same path.

I’ve been using the FreeStyle Libre for two weeks (Abbott supplied me with a reader and two sensors free of charge), which is the closest I’ll ever get to having a CGM. The data, and the insight it supplies me with is amazing. Not having to prick my sore fingers is nothing short of amazing. Yet the cost puts this technology out of reach should I wish to use it. I’m a young adult on a less than spectacular wage, and I can think of a million other things I’d rather put my money towards.

I do tip my hat to Diabetes Australia and JDRF Australia, who, among others, have lobbied tirelessly with the government in search of this outcome over the years. I might also add that Diabetes Australia’s submission to the federal government did not have an age limit. The submission was based on clinical need, including cases such as pregnant women with diabetes and those with impaired hypo awareness, among other categories.

While many saw this as a cause for celebration, I still digest it with a grain of salt. This pledge has been conveniently made ahead of a federal election in Australia, even though Australians have been lobbying for several years without a lot of progress. As with any promise that is made, it can just as easily be broken.

But it is, however, a start.

You can read all the details here, and Diabetes Australia’s media release here.

The Healthcare Experience

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It’s Day 4 of Diabetes Blog Week, and so far I’ve managed to make my way through all of Monday and Tuesday’s posts, and comment on a fair chunk of them. Today it’s time to tackle the topic I’m most excited about. Here is today’s prompt:

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I’m pretty grateful that I live with diabetes in Australia. I attend a diabetes clinic in a public hospital which is completely free of charge, and hooks me up with any related service I need. Private Health Insurance covers hospital care, and the cost of my brand new $9,000 insulin pump (posts to come next week). Diabetes consumables and insulin are heavily subsidised by the Australian government. All in all, I never need to worry about how I will make ends meet with diabetes here in Australia.


My biggest frustration, however, is that I feel my healthcare professionals don’t often have enough time for me. I was diagnosed as a young adult, which meant that getting a grasp on diabetes education and self management was a lot easier. I was quickly weaned off diabetes education as soon as I could manage on my own. My clinic has a long patient list and waiting times for appointments can often span months. My chart probably looks a lot better compared to most of the other patients in the clinic, which means I am pushed out of the endocrinologist’s office as quickly as possible.

But what about if I’m not happy? What if I don’t want to settle for satisfactory? What if I want to do better with my diabetes? What if I have the potential to do better?

Over the past year or so, I’ve really had to learn to stand up for myself and what I want from my healthcare team. During a time of burnout last year, I had to ring up and chase appointment cancellation slots down at the clinic. I had to do the research, attend the information evenings and tell my diabetes educator that I wanted to go onto an insulin pump. I had to make my goal clear in front of my healthcare team, one that was beyond the “satisfactory” point where I was at.

Nobody else was going to help me, even if there was a benefit to my health. There is simply no time for me in a busy diabetes clinic with a high volume of patients. It’s great that I am a “switched on” patient, but the sad reality is that not every person with diabetes is. Not every person is in a place where they are able to speak up for what they want. It can be hard just to accept and become comfortable with this condition, alone.

One person I would like to praise is my diabetes educator. I know that she is under the pump. Yesterday, she told me that she is under pressure to cut one hour education sessions down to 30 minutes. Yet she always makes herself available to me outside of appointments by both phone and e-mail.

I’m still in uncertain territory at the moment with the insulin pump. I’m testing my basal insulin rates overnight, and checking to see whether they keep my glucose levels steady or not. Being able to talk the adjustments through with Gwen over the phone and by e-mail these past few days is a big relief. I haven’t leaned on this kind of support as much in the past, but I know that I intend on doing so in the next few months.

Technology is also amazing. When I was first diagnosed six years ago, I was given a meter and a logbook. Today I have meters that log my blood sugar levels and calculate my insulin doses. I have devices like the Insulinx and the FreeStyle Libre which are computer friendly. I am using the amazing Diasend software, that allows me to upload the data from my insulin pump, glucose meter and FreeStyle Libre into one place. Gwen can instantly see the reports on the other end.

My biggest takeaway here, is to stand up for what you want. Don’t be afraid to lean on your healthcare team, but also the people around you who can encourage you to do so. Your health is so worth it.

To read other posts related to today’s prompt, click here.

Message Monday: Everyone’s Diabetes Is Different

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Today kicks off the Seventh Diabetes Blog Week, an annual event in the diabetes online community from Karen at BitterSweet Diabetes. Here is today’s prompt:

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

I began writing this little blog of mine almost a year and a half ago. I knew very little about diabetes, or what was going on out there in the diabetes community at the time. I wasn’t a very “switched on” patient. I used to shy away from my diabetes a lot. I can’t even say that I was very interested.

It’s been quite a journey for me, writing this blog. As Georgie pointed out last week, I look back at some of my old posts and I see how much my attitude towards my diabetes has developed. I am so much more passionate about diabetes today. I am so much more motivated to do better. I know exactly what I want from my diabetes team, and I fight for it. I’m getting started on an insulin pump today, and I can’t imagine that I would have had the courage or motivation to do it if I weren’t a part of this community.

I am here in the diabetes blog space, because it is something that genuinely interests me. Writing this blog has helped me enormously in dealing with my own diabetes. Sometimes it’s there as a way to express what’s on my mind. Other times it’s there simply as a way to get my point of view out there when I see something I don’t agree with. Blogging keeps me grounded and focussed in my efforts with my own diabetes.

Last week, I had the privilege of spending 2 days with a group of Australian diabetes bloggers at Abbott’s Diabetes Exchange event in Sydney. Disclosures can be found here.

We all came from different areas of the country. We were all diagnosed at varying points in our respective lives. Some people had decades of diabetes experience, while others had only a couple of years. Some people used insulin pumps, others were on injections, and one used an inhaled form of insulin. Some people worked in the diabetes space, while others were simply consumer advocates. Some knew each other in real life, while others were meeting for the first time. Some people selected the toast and the muesli that was served at the breakfast buffet, while others opted for the fruit and the eggs.

Even though all of us in the room had diabetes, we were all different. We all had different opinions. We all employed different tools and methods in order to manage our diabetes. We all added different issues to the conversation that reflected what we each felt most strongly about.

Yet we were all able to sit in the room together for 2 days without murdering each other. We were all able to engage in a healthy conversation. We were able to contribute our different points of view, while listening and being respectful of others who might have a different one. We were able to sit together at the dinner table on Thursday night until the lights were switched out and the hotel staff had closed up for the night. We were able to prepare and share a meal together at the Sydney Fish Market on Friday afternoon. We were able to Tweet at each other throughout the conference, even though we were literally sitting next to each other.

No two people’s diabetes are the same. The way I manage my diabetes is not necessarily any more correct than the way in which you manage yours. I try my best to be mindful of this as I write here, and in the way that I conduct myself online.

If the Diabetes Exchange event in Sydney last week was anything to go by, I believe that we can each manage our own diabetes, while being friends at the same time.


To read other posts related to today’s prompt, click here.

Side note: Thank you to Hannah and Laura for putting together a fantastic blogger event in Sydney last week. Thank you to the Abbott team for your hospitality and for the privilege of allowing me to be a part of the Diabetes Exchange program. And to the bloggers, it was an honour to meet you all in person. 

Why Australians With Type 1 Have It Better

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Happy Friday!


I’m in Sydney today for day 2 of Abbott’s Diabetes Exchange event. I’m officially hooked up to the FreeStyle Libre, and I’ll post some observations here in the weeks to come.

In the meantime, you can follow along on Twitter using #DX2Sydney and on my Facebook page here.

Second order of business: I recently wrote a column for Insulin Nation, in response to the ongoing health insurance stories coming out of the US. It’s titled Australians With Type 1 Have an Easier Time With Health Insurance, and you can read it here.

Finally, Diabetes Blog Week kicks off on Monday. I had a great time participating last year, and there’s just such a great sense of community about it. If you’re thinking of starting a blog or adding your voice to our great community, it’s a great time to do so. Head over to bittersweetdiabetes.com to see what it’s all about and to sign up.

Have a great weekend! 

The Story of How I Was Diagnosed

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This coming Monday will mark six years of life with type 1 diabetes. Today, I’m revisiting the story of how I was diagnosed.

The first week of May holds a lot of significance for me. It marks six years since the turn of events that led to my diagnosis with type 1 diabetes, and yet I can remember it as though it happened yesterday.

I was 17 and midway through my first semester of uni. I was struggling to find my feet among uni assignments, my new job, and my 18th birthday looming a few weeks away. I had decided to skip uni for a few days to try and make some headway with my assignments. I had about three or four separate papers to write, which meant hours and hours of reading through mindless PDF scholarly journals for references. It was enough to put me to sleep.And speaking of sleep, I was absolutely exhausted. I could not be bothered in the slightest. After many Facebook sessions, browsing breaks, heading to the kitchen for a drink and then going to the toilet, I had wasted away almost 3 days. And by Wednesday night, I had achieved next to nothing. And for the most part, I just thought I was being a lazy kid procrastinating on his uni assignments.

Enter Thursday morning and I really didn’t want to get out of bed. I felt weak and lethargic, and my mouth felt really dry. I just put it down to my inactivity over the past three days, then forced myself up and prepared a super healthy lunch to take to work. I don’t think I even lasted half an hour at work that day. I didn’t have the energy to stand on my feet that day. I knew something wasn’t right. I told Mum I had to see a doctor ASAP. And I NEVER go to the doctor.

At such short notice, I had to settle for the first doctor I could find. After explaining my symptoms, he told me it was just a virus and ordered bedrest and hot drinks for 3 days. Phew! What a relief it wasn’t anything serious…or so I thought.

I spent the next 3 days in bed, which speaks volumes for me. I NEVER stay in bed when I’m sick, but I had absolutely no energy to do anything else. With a dry mouth stripped of all its saliva, I was struggling to eat anything despite my Mum telling me to “eat something!” (Its an Italian thing!). All I really felt like were cold refreshing drinks. I was constantly craving Orange Juice on the rocks.

By bedtime on Saturday I was restless. My mouth was bone dry. I was on my third or fourth iced orange juice when my rumblings in the kitchen got Mum out of bed. “What are you doing, the doctor told you to have hot drinks!” Mum yelled. My heart rate and pulse were getting more and more rapid, and I was urinating at least once every hour. I spewed and felt slightly better. I don’t know if I would have made it til morning had I not.

By the time I woke on Sunday morning – Mother’s Day no less – I was panting. My heart rate was extremely rapid and I felt breathless. Added to the list of no saliva, extreme thirst, constant urination and lethargy. I told Mum and Dad how I felt. I knew I needed to go to hospital, but was too scared to suggest it. I had so much faith, so much trust in my parents, and I needed to hear them say it first for it to be a real possibility. We talked about going back to the doctor, but I shot it down. There was no point. I knew I couldn’t hold out that long. As soon as the h word was mentioned, I was out the door.

The car ride to the hospital was a blur. I was panting the whole time, counting down the minutes until we got there. What was wrong with me? Was I ever going to get my saliva back? Would I ever be able to eat again? Honestly, then and there, I wasn’t even sure that I would make it to the hospital conscious or even alive.

I was diagnosed with Type 1 Diabetes as soon as I walked through the door. If the hospital emergency staff picked up on my symptoms this quick, why couldn’t Thursday’s doctor? He could have saved me a whole lot of trouble and a whole lot of pain.

But looking back now, I wouldn’t have had it any other way.

After the ordeal I had been through, the relief of being able to get back to normal far outweighed coming to terms with diabetes, finger pricks and insulin injections. I don’t know if I would have embraced diabetes as well as I did had I not gone through this.

And I have a story to tell. I have memories that will last me a lifetime. I’m a stronger person because of what I’ve gone through. And, if anything, its made me even more passionate about diabetes awareness.

  
  

Updated: I’ve now climbed the Sydney Harbour Bridge twice. They were among the best experiences of my life, and it goes to show that diabetes hasn’t stopped me from living a normal life.