Diabetes and Healthcare Professionals

Building Trust With My Endocrinologist

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I have struggled to place my trust in endocrinologists over the years. Trust that I can comfortably pour my heart and complete honesty on the table. Trust that I’ll receive total support and complete understanding in return. Trust that any and every judgement will be reserved. And trust that I won’t walk out feeling fragile and disheartened once again (you can read about that here).

Because trust might mean admitting that I had hypos every day last week. Trust might mean confessing to eating a massive dinner on Thursday and then having high blood sugar levels for the rest of the night. And trust might mean admitting to feeling overwhelmed and frustrated by diabetes at the moment. On some level, I’m scared of what will come next. Will she tell me that my diabetes control is terrible? Will she threaten me with complications? Will she tell me that I need to be locked away in a mental hospital because I can’t deal with it all?

Around two years ago, I was transferred from the ‘young adult’ to the ‘adult’ diabetes clinic at my hospital. I was no longer a newly diagnosed, high priority patient. I felt a great sense of independence, achievement and liberation over my diabetes. And I was finally given an endocrinologist who I could call my diabetes specialist (it was a bit of a russian roulette before). Over time, I’ve become more and more comfortable with her. I’ve been able to place a greater level of my trust in her. And each time I go there, I’ve felt confident in sharing more with her. And Wednesday’s appointment must have been my most successful yet.

First up was my hba1c result. It was a few points higher than last time, but I felt satisfied that it had gone up rather than down. I shared that I’d been having lots of hypos prior to my holiday. I’d become obsessive compulsive in checking my blood sugar levels, and was trying to correct them shortly after eating dinner. The holiday did a perfect job of taking my mind away from obsessive testing, and my blood sugar levels had stabilised nicely in these past few weeks I’ve been back. I’ve just had My Perfect Week!

Next up was insulin doses, and we talked through my lunch. 7.9 before lunch, cheese toastie on Burgen bread with 4 units of insulin, 4.6 after lunch. Perfect. As usual, that dreaded question of how many hypos in a week came up. And as usual, I gave a vague answer that did have some truth. I was having significantly less hypos, and none were happening overnight anymore.

I brought up my recent eye concerns. I told her about my twitch, and that I’d gone and had my diabetic retinopathy scan in the process too. My recent bloodwork came back with good kidney and urine functions and some apparently ‘amazing’ cholesterol levels also.

We went into the exam room, where she had a look at the injection sites on my stomach. I hate this part because I always get really ticklish at the pokes and prods! She couldn’t believe that I used 6mm needles because I am so skinny, and gave me some 4mm needles to try at home.

It felt great to review and talk over everything in there. And as I voiced my issues, I made some realisations about myself that my endo seemed to notice as well. I was a proactive patient. I seemed to be able to identify and stay on top of my issues. I was among the least concerning of her patients. And according to her, this was the best case scenario she could expect from one of her patients.

I definitely walked out of there with a stronger focus and motivation to get me through the next few months. I’m glad I rang for that cancellation and didn’t wait until January. “Don’t test!” my endo jokingly said to me as I walked out of there, a smile on my face.

Getting My Twitch Checked

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For the last couple of weeks, I’ve had a bit of a twitch in the bottom corner of my right eye. Like a rapid, vibrating sensation that comes and goes. And every time that it happens, I have the sudden urge to rub my eyes to try and make it stop. And every time that it happens, it annoys the hell out of me.

I didn’t want to take it too seriously because I’ve been on holidays over the last two weeks. But everytime a bad reading came up, I would feel guilty. And everytime I ate more than I should have, those horrible thoughts of complications would plague me. Crazy theories would run through my head at night. What if the blood and oxygen was struggling to get through? What if, somehow, I’d damaged one of the blood vessels in my eyes?

Yesterday I said I want to make more of an effort with my diabetes. That I want to take things more seriously than I’m currently doing. And after writing that post, I made an appointment to see the optometrist during my lunch break today. It’s been well over a year since I last got my eyes checked, and this twitch seemed like the perfect opportunity to shoot two birds with one stone.

I felt so serious, and so unenthusiastic as I was called in and sat down in that chair. I almost felt like I was in a job interview, justifying my reasons for being there.

“I’m here for two reasons today. The first one is that I have type 1 diabetes, and I want to have the back of my eyes checked. The second one is that I have a bit of a twitch in the corner of this eye, and I wanted you to have a look at it.”

He dismissed the twitch straight away, telling me that heaps of people get it. It’s triggered by stress, and that getting a good night’s sleep and cutting back on stimulants will help. And considering that I’ve practically been living on coffee during my holiday, this made complete sense. I’ve still been craving those coffees I’ve been having on my holidays since I came home. My morning espresso at the corner downstairs. The cappuccino with my big breakfast. And my afternoon coffee and cake at my favourite pasticceria in Sydney, Via Del Corso.

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I think I’m getting a bit carried away…

The digital retinal scan of my eyes looked fine. He also told me that my eyesight hadn’t deteriorated over the last 12 months, which would have been a sign of badly managed blood sugar levels.

To be honest, I was a bit bothered that he didn’t seem to take my concerns as seriously as I did. He gave me the impression that I didn’t need to be there, considering that I’d had an eye check last year.

“I’d rather be safe than sorry. I’d rather be safe than sorry, because I hear all these horror stories about diabetes and complications…”

I didn’t feel like I’d finished my sentence, but I trailed off and couldn’t get anymore words out. Maybe he didn’t fully understand the seriousness of diabetes. Maybe he didn’t get what complications were. Maybe in his eyes, it was all for nothing.

But in my eyes, I’d dismissed a major concern on my mind. In my eyes, I’d taken things more seriously than I normally would have. And in my eyes, it was better to be sure. I was able to walk out of there today feeling a little less heavy, and that was well worth the effort.

And those good results are definitely a start towards doing more for my diabetes.

Thanks, Gwen

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My diabetes educator, Gwen, was a fantastic support system for me in the initial months following my diagnosis. She was a very direct person, and had one of those strong voices that still rings clearly in my head today (even though I have not seen her in several months). She reminds me of one of those teachers who would challenge you by answering a question with another question and often leaving me stumped for a response. And although I absolutely hated it at the time, I know that she was only trying to help me to think for myself and solve the problem on my own. As Gwen would put it, her job was to teach me to think like a pancreas and make her role as my diabetes educator defunct.

Gwen was extremely understanding and never passed judgement. Although she was not a diabetic herself, she was very experienced in dealing with young adults like myself and often referred to her experiences being a pretend diabetic. She was extremely supportive and was even prepared to come to my defence after I walked out of a less-than-supportive endocrinologist appointment on the verge of tears (which you can read more about here). She always made time for me if I needed it – I can even remember her once squeezing me in for a quick chat during her lunch break!

Over the course of a few months, we covered all the basics like the role of insulin, hypos, hypers, sick days, travel, exercise, carb counting and making lots of adjustments to my insulin doses. If there was something that I wanted to help me manage my diabetes, Gwen would get it for me. Like an insulin pen that could dial half units. Software so that I could download my blood glucose results onto the computer. Books to record my blood glucose readings. And anything else she thought I might find useful.

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Within a couple of months, Gwen felt confident that I didn’t need her anymore. I did have a couple of bumps throughout that journey, but that probably belongs in another post. Its worth noting that at the age of 17, learning to manage my diabetes was much easier than if I was younger. I used to see young children in there with their school uniforms, parents and other siblings. I really do count myself lucky.

One piece of advice from Gwen that I really wish I didn’t ignore was finding and connecting with other people with diabetes. I really do wish I’d found the support of the Diabetes Online Community sooner. Hell, there should be a mandatory session dedicated to the DOC!

I’m forever grateful for our amazing public healthcare system here in Oz. Through that hospital outpatient clinic, I have had access to any sort of service I need to manage my diabetes – podiatry, optometrist, dermatologist, dietician – and I still do, to this very day! If only some of the waiting lists weren’t so long… As Gwen would say, getting through all of those d-related appointments in my first year would be the hardest. And it would have been much harder if I was lumped with the financial burden of all those appointments too.

I’m also forever grateful to Gwen. I fondly remember her comfort and support after that nasty endocrinologist appointment. I can remember Mum wanting to buy her a small gift on my first Christmas with diabetes just to thank her for all her support during that first year. Support that I can still remember and still appreciate to this very day. Thanks, Gwen.

 

Hospital Memories

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On what would be my last morning in hospital after being diagnosed with diabetes, part of me couldn’t wait to go home. Even though I’d only been there for 5 days, it felt like an ordeal that had dragged on for weeks and weeks. The problem was, I could barely remember what home actually felt like. I could barely remember my life beyond those long corridors buzzing with doctors, nurses, visitors and patients at all hours of the day. Life beyond the hospital cafeteria, auxiliary shop, vending machines and coffee carts. That a world actually existed beyond that campus filled with traffic, cranes, helicopters and portable fences.

I had forgotten what life was like without having a nurse walking in every hour to check my blood sugar levels. Without having the trolley come past at breakfast, lunch and dinner time to take our orders. Having the doctors come past every morning to do their rounds. Having visitors come to see me every day. Being able to stay in pyjamas all day. Being able to sit in bed at 3pm and read the magazines people had brought me. Sneaking downstairs to explore those long corridors once the nurses disappeared. Being delivered a white-bread ham and cheese sandwich at bedtime, just in case I went hypo through the night. Hearing old Mr. Giglia across from me coughing, groaning and spluttering every 5 minutes. And laughing at some of those difficult patients I could hear from across the hallway!

In the short 5 days that I was there, I had formed a strange attachment to my hospital surroundings that had began to feel somewhat like home. Part of me felt quite comfortable sitting in that hospital bed at 9.30am on that Thursday morning watching Bones. That part of me didn’t quite feel ready to step outside into that cold, cloudy May morning and return to everyday life. Which for me, would be a new life. A life with type 1 diabetes.

When I was told I could go home, I wasn’t excited. I was hesitant. Uncertain. Nervous and scared at the same time. All of those medical ‘elves’ were about to fade into thin air and I would be left to deal with this diabetes thing all on my own. They wouldn’t let me wait for Mum to come, they were ready to force me into a wheelchair and send me to the outpatient lounge. They didn’t even leave me with enough supplies to see the rest of the day out.

As I sat there at the bus stop on that blustery, grey May morning waiting for my ride home, I didn’t know what the future would hold. I only wish I could go and sit next to that innocent, nervous 17 year old boy and tell him that everything was going to be okay.

More Understanding From Diabetes Professionals

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I’ve enjoyed lots of perks being in the public health system. Namely, its cost me next to nothing, and I have had access to all of the services I need through my hospital outpatient clinic (podiatry, optometry, etc.). But one of the downsides to being in the public health system is that you don’t really get to see the same doctor every time. So you don’t really get to build that relationship, that trust, or that level of comfort that allows you to talk openly to that person. There’s also a long patient list, so there’s often a long time inbetween appointments.

I remember one of my endocrinologist appointments. I’m pretty sure it was in the first year of my diagnosis. I got my hba1c and other bloodwork done before I went in to see the doctor. I think the hba1c was somewhere in the high 7s if I remember correctly. I showed the doctor my book where I had written all of my blood sugar levels. I was newly diagnosed. There were lots of 10s, 12s and even 15s. There weren’t a lot of 5s 6s and 7s. And all that doctor could say to me as he was flipping through that book was that I had very poor control of my blood sugars.

No words of encouragement. No understanding. No support. I don’t even think he understood exactly what it was like to be a diabetic. Or what I was going through. And then he even had the nerve to start scaring me with words about diabetes complications if I didn’t get those numbers down.

I was so disappointed. Here I was, having conquered my first few months in a strange new land and yet all he could do was shoot me down. I was feeling disheartened and guilty as I walked out of that room. And my wonderful diabetes educator could see the look on my face, and asked me what was wrong. She did her best to give supportive comments and words of encouragement. She even offered to go in there and say something to that man, which I politely refused. She knew that I hadn’t been at it long. She knew that I was trying my hardest. And she clearly knew what it was like to be a diabetic (and she did not have diabetes herself).

If that doctor knew me better, if I was his regular patient, this probably wouldn’t of happened. But that’s the reality of the public health system. Its a revolving door of doctors catering to a long, long patient list. And that’s okay. But with a little more understanding and a little less judgement, we both could have gotten a lot more out of the appointment that day. If that doctor had taken a few more minutes to look at my background and get to know me, this probably wouldn’t have happened. If he had made me feel a little more comfortable, I probably would have been able to elaborate more openly about my diabetes. And he would have been able to give me better, more personalised support and encouragement.

This post isn’t a way of attcking diabetes professionals. Because I’ve also had many outstanding experiences with diabetes professionals who have gone above and beyond to help me. Encourage me. Support me. Make themselves available to me inbetween appointments. Understand me. Namely, my diabetes educator. But its also important to raise awareness that we don’t get the positive experiences, understanting and encouragement that we, as diabetics, deserve. Nobody should have to go through what I went through that day. And that’s the one diabetes thing I would like to see change.

I’ve written this post as a participant in Diabetes Blog Week 2015. Follow #dBlogWeek on Twitter for the latest updates from the event and participants.