Endo

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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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.

I Don’t Feel Like I’m Doing Enough

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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.