Diabetes and Healthcare Professionals

Sticking Up For My Diabetes at Work

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During a diabetes at work themed OzDOC chat a few weeks ago, I was reminded of an instance where I was given a hard time for leaving work early for a diabetes appointment. During the discussion, I shared how confrontation and explanation had really paid off for me in the long run.

I am fortunate that I have the luxury of starting work early, and finishing early. This gives me a little more flexibility in tending to any diabetes related demands in the afternoon, or simply taking some time to breathe.

However, appointments to see specialists at my diabetes clinic often do fall during working hours. I attend a diabetes clinic in a public hospital, meaning appointments are in high demand and often carry a long waiting list. The clinic is only open 4 days per week, and specialists often gravitate between a few places of work. I am in no position to simply cancel an inconvenient appointment, or reschedule at a time that suits me.

I am always transparent about attending diabetes appointments during work hours. I will supply my employer with the hospital confirmation letter confirming where I am. Even if the appointment is at 11am, I will still come in for a few hours during the morning just to show that I am being honest.

I consider myself a pretty reliable worker. If I’m not at work by quarter to seven in the morning, you can probably assume that something is wrong. I call in sick very rarely. I always pitch in and help where needed. Diabetes rarely interferes with my work, and many are surprised to learn that I have it.

It really hurt me that I wasn’t automatically trusted in this instance. I thought I had a decent relationship with my boss, even though he’s not around too often. But the truth was, I don’t think he had ever heard from me that I had diabetes. Besides, I refused to let this slide out of principle.

I explained the situation. I explained that I had diabetes, and that I see specialists to look after my condition. I explained that it wasn’t always practical to be able to obtain appointments outside of work hours. I also made the point that I could have called in sick and presented a medical certificate. Instead, I gave notice and came in for a few hours to help the team out during the morning.

I think I took him by surprise. I dare say I made him feel guilty for it. I think it simply came down to a lack of understanding, which was easily rectified with education and information. 

Ever since, I haven’t had any problems with work and diabetes. I get asked how everything is going, which is kind of nice. I’m taking some time off work during an extremely busy period to get my insulin pump next month, and so far everyone’s been respectful of it. 

Talk. Explain. Educate. In most cases, they simply don’t know. Sticking up for myself in that situation was one of the best things I could ever have done for myself.

Join our weekly diabetes support chats Tonight from 8.30pm AEST by following #OzDOC on Twitter. Tonight we are playing a game of “have you ever…“

“Do You Use a Lot of Test Strips?”

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“Do you use a lot of test strips?” My pharmacist asked me, as I placed a handful on the counter to purchase.

I went silent, lost for words to answer his question.

“Yeah, I do,” I replied.

I was wondering if I was going to have to justify myself. Was this going to be another big dilemma where I would be told that I’m using too much? Was the computer going to tell him that I’d gone over the limits and couldn’t purchase any more?

“Do you see a diabetes educator?” He asked.

He sounded like he wanted to suggest something. That I needed to get help?

“We’ve actually got a little boy who comes in here. He’s got this little sensor that he wears on his arm that measures his fluid. He swipes over it, and it gives him his readings. He doesn’t have to prick his fingers so much. It even gives him a history of his readings.”

I smiled, because I knew exactly what he was talking about. “Yeah, that’s the Freestyle Libre,” I replied.

A little over a year ago, I wouldn’t have even known anything about this. I would have just stood there and politely nodded, but disinterested all the same. I’m so proud of the interest I’ve taken in diabetes over this past year. I love how passionate and how “in the know” I feel around the subject of diabetes. I loved that I was able to hold up that conversation and sound like a bloody expert. The happiness I felt for that little boy and his mother was so real.

I know that he was genuinely being nice, but I still felt I needed to justify myself before walking out.

“Just because I use a lot of test strips, it doesn’t necessarily mean I’m struggling with my diabetes. That’s the common misconception among healthcare professionals. Regular testing is just something I do that helps me to manage my diabetes.”

“And just because I’m buying them, it doesn’t necessarily mean that I’ve run out of them at home. You’ve gotta stock up, right?” I said, thinking fondly of this “Clean It Out” prompt from Diabetes Blog Week last year.

Textbook Diabetes

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I’ve been thinking a lot about a promise that I made to my diabetes educator during my last visit. I promised that I would stop being so slack and start logging my insulin doses with my Freestyle Insulinx meter. “You need to be logging your insulin doses, otherwise it’s no better than any other meter” keeps ringing in my head.

The thing is, I’ve been spending considerably more time around my diabetes healthcare professionals since I began to ponder an insulin pump a few months ago. My team, and what they’ve asked of me, has been at the forefront of my mind in my day to day decision making a lot more often than usual. 

In contrast, I’ve spent a great deal of time over the past year engaging in the Diabetes Online Community. With people just like me, who are living and dealing with diabetes on a day to day basis. I’ve found my voice, and become a lot more confident and empowered to make diabetes decisions on my own terms.

So when I’m around healthcare professionals who don’t necessarily have that element of actually living with diabetes, it really hits home in front of me. And I am suddenly reminded of something I haven’t engaged myself with in a very long time. Textbook diabetes.

My diabetes healthcare professionals are fantastic, and I know that they only have my best interests at heart. But I can only wonder whether they realise just how hard it is to do all of those little things on top of diabetes itself. I can only wonder whether they realise just how hard it is not to have any more than two hypos per week. To log every blood sugar level, and every insulin dose. To follow what’s written in a diabetes textbook, when you know that the textbook isn’t going to produce the results.

While I certainly don’t claim to be an expert, I know how to look after my diabetes better than anyone else. I live with, and manage it around the clock. It’s like a pet. I know how much to feed it. I know what upsets it. I know what makes it sick. I know what it likes, and what it dislikes. It might go against everything ever written in a diabetes textbook, but I know it works for me.

I promised that I would e-mail my educator the meter reports so that she could begin to work out insulin ratios for the pump, and help me to fine tune things. And I want to. I really want to. But the reality is that I haven’t. While everything has been going well lately, there’s still been a lot of fine tuning around my insulin requirements. That meter data doesn’t mirror textbook diabetes at the moment. And right now, I’m not comfortable trying to justify my intuition over textbook. Better luck next week, eh? 

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.”

The “Fill In” Endo

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I’m very protective over my diabetes. I share it with the people I can trust, and I do my best to shield it from people who aren’t going to be supportive. I can thank my very first endocrinologist for that.

Thankfully, the endo I have today is someone I can trust. Each time I go into diabetes clinic, I find myself able to share more and more with her. Which is funny, considering I only go in there twice a year. But still, I feel a certain level of comfort in front of her, that I don’t in front of strangers.

I’d been planning Wednesday’s appointment out in my head for weeks. I had a list of notes and questions in my diary to ask her. I was nervously anticipating my post Christmas hba1c result. Sidenote: I really need to get these done inbetween my 6 monthly appointments, so that I’m not playing guessing games or making excuses to slack off on diabetes management for too long! I knew exactly what I wanted to talk to her about. I even brought along my FreeStyle Insulinx meter and USB cord, ready to share my data with her. For me, that was a massive step, and a big vote of confidence in her.

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So, when a “fill in” endo came over and called me into the office, my guard was immediately up again. That trust was gone. I would have to tread water carefully, but I was willing to give him the benefit of the doubt.

However, he didn’t seem to be very knowledgeable around my questions.

I asked him if I would be able to get an endo’s sign off on the pump without coming in for another appointment. His response went something like “I’m not really sure. I imagine that we would be able to sign it without you coming in. Gwen will be able to tell you.” Gwen, being my fantastic diabetes educator, of course.

I also asked him if I could have a letter exempting me from limits on subsidised test strips. He responded with “I haven’t really heard of such a thing. It might be a better question for Gwen. There is such a thing as too much testing. Most people probably don’t need to be testing more than 4 or 5 times per day.” 

He also wasn’t very encouraging when we talked about my latest hba1c result.

It had gone up by half a point since last time, but it was exactly where I expected it to be after the past few months I’ve had. I expressed my disappointment, and my desire for it to be lower and more stable with a pump. “Your hba1c is around where we’d like to see it. It’s certainly a good range to be aiming for” he replied, suggesting that I didn’t need to be aiming any lower.

All in all, he left me feeling disappointed. I feel like I’ve come so far with my diabetes management. I’m so proud of the attention and interest that I’ve given to my diabetes in this past year. I had shared my perspective around my diabetes to him, looking for some support and some guidance. Yet some of his answers were so vague and wishy washy, that I seriously doubted whether he was an actual endo.

I got the impression that because my chart looked amazing compared to many of his other patients, he didn’t need to give me too much of his time. I’m not a qualified professional myself, yet I can see that there’s room for improvement. There is always room for improvement.

As I walked out of there with a doctor’s certificate dated from the 1990s in hand, I thought to myself thank goodness I’m seeing Gwen on Monday.

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