HCPs

An Indescribable Feeling

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“Can I get my hba1c done?” I asked my diabetes educator, the minute I walked through the door.

“I’ll go get the kit.”

I waited for what felt like forever, my attention shifting from a wall clock identical to those in my high school, to a weary poster from the 90s shouting reduced risks of cardiovascular diseases for every 1% drop in my hba1c.

As I sat there, exhausted after a full on day and a week of rollercoaster blood sugar levels, I wondered what my hba1c might look like. I hadn’t set the bar very high for myself. I was convinced I wouldn’t be anywhere close to my personal goal. I’d be lucky just to clear the 7% mark, at best.

Even though we say all the time that we are more than just numbers, it’s so freaking hard not to feel defined by one. Every day, I wake up to numbers. I make decisions based on numbers. I over-analyse numbers. I feel frustration over numbers. My long term health is dependent on the numbers. Numbers are the very last thing I see, before I go to bed at night.

I’d be lying if I said that my last hba1c hadn’t been hanging over my head since August. I’ve poured my blood, sweat and tears into my numbers over the past few months. But as my diabetes educator made her return to the room, I was about to learn that all of that effort had paid off.

“You’re joking!” I exclaimed.

“I’m not.”

“I can’t believe it!” I said to myself, leaning back and shooting both my arms up into the air in victory.

The feeling was indescribable.

Not only had I bested my personal goal, but I had clocked in over a point lower than August, and had set a new personal best.

I felt a million miles lighter. I felt like a weight had been lifted off of my shoulders. I felt like I was sitting on top of the world. I felt free.

I couldn’t wipe the grin off my face as I stepped out into the mild, sunny November afternoon. As I made my way down Hospital Avenue and back to my car, I kept repeating my new a1c over and over in my head.

I made a pit stop at San Churros on the way home for a Spanish White Hot Chocolate. A big plate of Connoisseur Belgian Chocolate Ice Cream followed when I arrived home, as I eagerly told my family the news.

I felt proud. I had fought a gruelling battle to regain some form of control over my blood sugar levels in the past year, and I had come out on the other side stronger than ever.

In that moment, I had won.

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.

Thursday Night, Diabetes Style

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When I last visited my diabetes educator in February, I brought my meter along in order to show her my numbers. I was stepping outside of my comfort zone. I was essentially exposing myself, and all of my highs and my lows. I wouldn’t be able to choose what I would share with her. I wouldn’t be able to summarise. It was a big step for me, but one that I felt ready to do.

Unfortunately, the focus seemed to be more on what I hadn’t done – logging my insulin doses into the meter. I apologised, and promised that I would send through two weeks worth of meter reports before my pump day, so that she would be able to work out insulin ratios and settings.

It was a simple task, yet one that has been weighing heavily on my mind for weeks.

Every time I have attempted to make a start, something gets in the way. In March, I got sick and was rage bolussing stubborn highs like crazy. A week later, Easter rolled around and I was eating more than I should have. I took some holidays, and the numbers didn’t reflect my regular routine. But most of the time, I’ve just been telling myself that the numbers aren’t perfect enough to send through.

I can probably guess what a healthcare professional might think. Lazy, slack, non-compliant (insert your favourite word here). But when diabetes already takes up so much of my time and energy, a simple task like stopping to log my insulin doses is a big deal. It’s hard to carry the same meter around with me, rather than rely on the others that are stashed in convenient places. It’s hard to stop and punch in the insulin dose, when all I really want to do is sit down and eat.

But I knew that I was going to honour my promise. I knew that I wasn’t going to lie.

Come Thursday night, I generated 14 days worth of Insulinx meter data on my computer and printed it out. I took a seat at my desk for what would be somewhat of a long night.

I went backwards, day by day, reflecting on the past two weeks of my diabetes life. Recalling exactly where I was, and what I was doing on that particular day. Thinking about what I’d had for dinner that night. Remembering the circumstances surrounding that stupid low, that stubborn high, or that victorious overnight result. It took me a few hours. It was a little confronting, staring at those numbers on paper and being reminded of where I had gone wrong.

I attached a note to my meter reports, apologising to my diabetes educator for not directly logging the insulin doses into the meter. I explained that I had thoroughly gone through my last two weeks, and provided what I believe to be a very comprehensive overview. I wrote notes about my typical day. A work day, where I was on my feet, moving around and lifting things. Night times, where I was often chasing post bedtime highs from things like Pasta, Fat and Protein foods. Insulin to carb ratios, correction ratios and Lantus doses.

I carefully folded my paperwork, placed it into an envelope and stuck an express stamp onto it.

As I placed my letter into the Post Box on Friday afternoon, that big weight that had been sitting on my shoulders for weeks was finally gone.

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.”

“How’s It All Going? Are You Managing It Alright?”

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“Could I talk to you for a minute?”

“Sure.”

“Let’s go over to the desk.”

“I’m going to see my diabetes specialist on the 3rd of February in the afternoon. I wanted to work until 12 and then take the rest of the day as sick leave. I’ve got a letter underneath my form here to say where I’ll be.”

I stood there, waiting. Confident that she would sign my leave form. Sub consciously thinking that this is the second time that I’ve requested leave for my diabetes since November. Knowing that she was pretty understanding. But still half expecting a comment. (And no, this was not the person who told me I Should Be Making My Appointments Outside of Work Hours).

“How’s it all going?”

“What?” I replied, stunned, and a little bit lost for words.

“Are you managing it alright?”

“Um. Yeah, okay, I guess. I can only do the best I can, I suppose. I’ve got the type of diabetes that isn’t caused from being unhealthy.”

“I know. It’s just that your insulin’s not there. My friend has a hard time with it, too.”

“It’s hard. But I’ve only had it for a couple of years. I’m lucky that I got it when I was 17. Some kids get it from a very young age.”

“Yeah, she got it when she was an adult, too.”

“I can only do the best I can” I repeated, almost trying to convince myself of that fact, rather than her.

“Cool. I’ll sign it and payroll can put it through for you.”

Sometimes people can surprise you. That little conversation was enough to make an ordinary day brighter. It’s never a simple question to answer, but it was enough to help me to remember why I do what I do.

Happy Monday!