Endocrinologist

The Healthcare Experience

7 Comments

img_0048

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.

“How Are You” Makes a World of Difference

1 Comment

“How are you?” These are the three words which I absolutely hate to hear, but can’t seem to get away from. Almost every person who I pass during the day utters those words, and I hate it. I know they’re not doing it on purpose. I know that they’re just trying to be nice. But I never feel that question is a sincere one.

Do they really want to hear about my lousy diabetes day as we pass each other in the hallway? I think not. Is it fair for me to dump all of my problems onto them when they’re just being polite? Absolutely not. Most of the time, I give my enthusiastic-sounding “yeah, good” response and go on my way. I feel like a robot with no personality when I give the same stock standard response every day. I feel guilty for not saying “how are you” back. But I’m not going to say those words unless I really mean them. And I’m not going to give a genuine response unless the situation allows for it.

In the diabetes world, however, this couldn’t be further from the truth. In the diabetes world, I don’t feel that get asked “how are you” enough. I yearn for my doctor to ask me how I am. And I don’t mean how my diabetes management is going. I don’t mean how my blood sugar levels are. I don’t mean how my latest hba1c result stacks up from last time. And I don’t mean how was that blood test that he ordered last time I was here.

I want to be asked about how I am coping with having diabetes day in, day out. I want to be asked how I feel when I wake up in the morning ridiculously high, despite feeling that I did everything right the day before. I want to be asked how I feel when I wake up in the middle of the night sweating and shaking because I’m terrifyingly low despite all my efforts to avoid it from happening. I want to be asked how I feel when my mind is plagued with thoughts of nasty complications that could affect the quality of my life. And I want to be asked about my small diabetes victory that feels like a massive achievement.

Don’t get me wrong, I am happy with my health care professionals for the better part. And I am happy with my diabetes management, for the better part.

But when I’m in the diabetes world, hearing those three words “how are you” is enough to turn my day around for the better. And while it may seem like nothing to my doctor, hearing the words “I get it” can make a world of difference.

More how-are-you’s from healthcare professionals, please.

Building Trust With My Endocrinologist

Leave a Comment

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.

I Don’t Feel Like I’m Doing Enough

13 Comments

I’ve been stuck in a rut for a while. My hba1c levels are okay, I guess, but they’re not great either. And they’ve been stuck in that good, but not great phase for a long time. And right now, I just can’t stop thinking about this tweet from last week.

I have a love hate relationship with my doctor. I love how he can quickly dismiss my concerns when I’m not feeling well. But I hate that I don’t feel that anything constructive comes from seeing him. Every single visit usually goes the same way. He’ll tell me that my illness is “just a virus,” send me for a blood test and then tell me “you need to get your sugar levels down.” I’ll nod my head. I might even manage to mumble an “okay.” He’s usually running an hour behind, and I’ll be lucky to get five minutes in there before I’m pushed out the door. I know he’s not a diabetes expert, but it’s not like he even tries to offer any sort of genuine help.

Then there’s the endocrinologist. An endocrinologist appointment really does motivate me to do better with my diabetes. And I can talk to the endo, if its someone I’m comfortable with. But I don’t get to see them as often as I probably need to right now. If I’m lucky, I’ll get to see them twice a year. And if I’m extremely lucky, I’ll get to see the same endo both times. I’m due for an appointment right about now. In fact, I could really use an endocrinologist appointment right about now. And out of the whole six months that my appointment could have been scheduled for, it just had to be in the two weeks that I was on holidays. And now, the earliest I can reschedule for is January. January, for heaven’s sake. Being in the public health system can be so frustrating sometimes. 

And I just can’t stop thinking about that tweet. I think there’s a good reason I wrote it. I need to try harder to find the support I was calling for in that Tweet. It’s well and truly time for me to get back on track. I’ve had my break. Perhaps too long of a break. I’ve had a lot of fun and enjoyed a lot of good food. And now, it’s time for me to hit that reset button that comes after a good break.

Normally, I would have accepted that wait until January for an endocrinologist appointment. Normally, I would make those excuses about work and life and being busy. But today, I’m going to give my Diabetes Clinic a call and see if there are any cancellations that have come up. And I’m going to make more time for diabetes. Because right now, I don’t feel like I’m doing enough. And right now, I want to feel better about myself.