A1c: Keep it a Secret or Share it with the World?

This post originally appeared on ASweetLife.org on May 12, 2015. I felt very strongly about keeping my A1c to myself four years ago. I’m still not too keen on sharing it with the world for the reasons I explain in this post, but I have been known to celebrate A1c victories on social media by posting particularly exciting results. Where do you stand on the spectrum? Keep it a secret, share it with others, or somewhere in between?

Over time, I’ve grown more comfortable with the concept of sharing as much of my diabetes story as possible. I’m open to the idea of answering questions that others may have for me, but there’s a key piece of information that I don’t think I will ever willingly share online: my hemoglobin A1c.

Some might make the assumption that this is because I feel ashamed or defeated by that number. I won’t lie, there are times in which I do get disheartened by my current A1c – particularly when I expected to hear a more favorable report from my endocrinologist.

Rather, I think the real embarrassment stems from the comparisons I make between my own A1c and the numbers reported by others. When I began blogging for ASweetLife just over two years ago, that marked the start of me exploring the world of T1D blogs. It was awesome to connect with others virtually by reading about their own personal experiences with diabetes. I admired the courage that many demonstrated by revealing some of their greatest challenges and obstacles they had overcome in their journeys. It seemed that improved A1c numbers were a common theme for nearly all of them.

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What do you do with your A1c information?

At that point, I started to compulsively compare my number to everyone else’s numbers. I seriously questioned myself and my ability to obtain a better A1c reading. I mentally berated myself for having a less-than-perfect number. The rational part of me knew that it was not wise to measure myself against others, but I just couldn’t seem to help it.

After a while, it dawned on me that the road to better A1cs had not been smooth for any of these individuals. It was marked by divots, twists, and turns along the way. As such, I wasn’t being fair to myself as I sought to see a better A1c. I know that it’s hard work and that I just need to focus on my own overall health and well-being (as opposed to that of other people) as I continue to strive for that 6.

Regardless, don’t expect to see me posting my A1c to my blog any time soon. I don’t really think I need a daily reminder out there for all to see of what my A1c was at a given moment in time. Instead, I think it’s important that I focus on what’s happening now and what I can do to help my current state of being. So for now, I’m content with keeping my A1c to myself.

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Is it Weird That I Love Looking at Lab Results?

Is it just me, or does anyone else anxiously await checking lab results after getting blood work done? And am I the only one who excitedly reads through results, looking for anything abnormal so I can see which area of my health I need to work on? It’s kind of like whenever I handed in a paper or took an exam in college – I always logged onto the student portal multiple times in the days after to check for posted grades. I do the exact same thing with my patient portal.

I know, I know, I’m weird. I prefer to call it quirky.

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An *utterly fascinating* screenshot of some of the allergens I’ve been tested for in the past.

I started thinking about this little idiosyncrasy a few days ago, after I got lab results back from my allergist. She had me go into a lab to get 10 vials of blood drawn so it could be tested to see what types of allergies I had. Fun!!! In the days following, I checked my patient portal dozens of times to see whether the results were up. And when they finally were, I was obsessed with poring through them and seeing how much sense I could make of them.

And I’ll admit, I love looking at lab results because I have a historical view of just about anything and everything I’ve been tested for in my life, and that includes my A1c levels. On more than one occasion, I’ve fallen down the black hole of comparing and contrasting my results over the years. It’s interesting to see how I can trace back certain A1c levels to different events going on in my life at the time it was checked, and more than anything, I enjoy seeing how much I’ve improved in the last decade.

So if this habit of mine sounds plain strange to you, then I don’t want to be normal…I want to be informed. I always want to be informed when it comes to my own health, because ultimately, I’m the one responsible for it, as well as the one who will do everything in her power to improve it.

Aim for an A1c of…What?!

All my life, I’ve been told that I should do what I can to keep my A1c levels between 6 and 6.5. This is the “ideal” range, the sort of long-term goal I should bear in mind on a daily basis.

So when my primary care doctor suggested that an A1c of 7 to 8 might be a more realistic, sustainable, and healthy zone, my jaw dropped to the floor.

He explained his reasoning for saying such a thing: Since people with diabetes obviously have different needs when compared to people without diabetes, it’s not entirely logical to expect a person with diabetes to maintain an A1c that they might have with a functioning pancreas. He said that as time goes on, it could affect cognitive abilities.

And then he said that this was the range that would be recommended to a person with type 2 diabetes – there’s no new research that indicates any difference in desirable A1c levels for a person with type 1 diabetes, so, as my doctor said, I should continue to aim for 6 to 6.5.

This was such a WTF moment for me, for a couple of reasons.

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Does anyone else feel super awkward taking selfies in exam rooms? Does anyone else even take selfies in exam rooms?!

One being that I had NO IDEA why he was saying this to me. He built up this whole explanation as to what the “new recommended A1c” is, only to inform me at the very end that it was only safely applicable to people with T2D at this time. Was he confused? Did he forget that I have type one for a minute there?

The other reason I was flabbergasted by this little discussion was that we hardly ever go into detail when it comes into my diabetes. In fact, he didn’t even ask me when my last A1c test was, or any questions regarding my insulin pump/CGM. He just asked the standard “how is your diabetes” question, to which I replied with a super-lengthy, not-at-all vague response: “good”. He did put orders in for the standard array of tests that I take for each annual physical, which would inform him of my blood sugar at that moment in time, as well as my current A1c. But it was nothing that I’d be talking to him about during that appointment because the results wouldn’t be available until late in the day. So yeah, I found the whole thing to be pretty bizarre and mildly misleading.

Coincidentally, I’ll be seeing my endocrinologist in a few weeks, and let’s be real here: She’s the one doctor who can best advise me when it comes to diabetes treatments and protocols. So I’ll be sticking with her recommended A1c range for me, which I have a feeling won’t be any different from what I’ve been told all these years with diabetes.

My T1D New Year’s Resolutions

New Year’s resolutions are kinda tacky and silly, especially ones that are broken three weeks into a new year. Even so, I like to put a little thought into how I can better myself when a new year begins, so I guess I’m the sort of person who (somewhat grudgingly) tries to make a commitment to some form of self-improvement around this time each year.

Happy New Year!
Are you making any New Year’s resolutions?

While some of my resolutions are going to remain private, I’d like to share others – specifically, my diabetes-related ones – here because I think it’ll be the first step in making them a reality in 2019. Here’s what I’ve come up with so far, along with some explanations why they’re my goals so far:

  1. Improve my A1c – This is kind of a cop-out resolution, because let’s face it, a better A1c will never not be a goal of mine. I’m in a better range now than I was a few years ago, which is a huge accomplishment in itself. But I know I can do more, and I have the drive and desire to get myself below 6.5 this year.
  2. Make time for more IRL T1D hangouts/meet more T1Ds – I can’t be the only one who scrolls through Instagram and feels pangs of jealousy when I come across photos of large groups of T1Ds hanging out, right?? A significant percentage of these hangouts are the result of T1D conferences, which I’m rarely able to attend. They either cost too much money or take place at an inconvenient time, so I’m forced to miss out on some valuable face-to-face time with people who understand me in a unique way. It’s definitely a bad case of FOMO. As a result, I want to be proactive and try to arrange more meetups in my area in the next year.
  3. Incorporate more self-care into my routine – 2018 was such an insanely busy year. I felt that, at times, I was getting pulled into too many directions and had obligations to so many people that I could barely keep up, let alone make any time for myself to catch my breath. I had days here and there where I could sneak away for an hour or two and treat myself to a massage or exercise at the gym, but I really didn’t have a single mental health day in which I unplugged from everything and kicked back. Though I know 2019 will be just as hectic, if not more than 2018, I still want to be sure to make more time for myself, even if it is just for five or ten minutes a day.

Now that I’ve shared my resolutions, I feel like that will hold me accountable for making a good-faith effort in accomplishing them. And I also feel that they will be good things for me to write about throughout the next year, so I can keep both my audience and myself informed of my progress.

And with that, it’s my final blog post of 2018. Here’s to 2019, a year that will be filled with plenty more content from Hugging the Cactus. To you, my readers, I wish you a healthy and happy new year!

Memory Monday: The First Time I Met an Endocrinologist that I Didn’t Like

One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…

…the first time I met a diabetes doctor (endocrinologist, or endo for short) who I didn’t like. At all.

I knew right off the bat that we would be a bad fit, because he started the appointment by sharing his own blood sugar with me (as he was also a T1D). “Oh, I’m 136 right now…that’s a bit high, so I’m going to take insulin for it.” He reached for his insulin pump and I stared at him, nonplussed. Since when was 136 a “high” blood sugar? Why was he sharing this with me? If his own target blood sugar range is so narrow, then what the hell is he going to think of me when he reviews my own data?

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The face I make when I think about that awful appointment and the negative thoughts it gave me about my A1c.

The appointment only went downhill from there. At this point in my life, I was a brand-new college freshman, and my diabetes was simply no concern of mine. So my blood sugars and A1c weren’t great.

And I got scolded for it.

Throughout the entire appointment, I felt judged. I held back tears at points because I felt that I had to explain myself to this guy, that I had to somehow get him to understand that the transition to college hadn’t been easy on me, and that’s why my A1c was high. But I couldn’t get the words out. Instead, I sat there, numb, as he lectured me on what I should and shouldn’t be doing to take care of my diabetes. He kept insisting that I go onto a pump, which at that time, was totally scary to me – a non-option. He was so adamant that I got frustrated and shut down towards the end of the appointment, nodding and smiling tightly at his words.

I’m certain that I cried on the way home from that appointment out of frustration over how it went. I didn’t feel motivated to take better care of myself; instead, I felt rotten. I realized that just because someone is a doctor, it doesn’t mean that they necessarily know how to convey messages about health to patients. In other words, not everyone has an appropriate bedside manner.

Fortunately, that was the first and last time I saw that doctor. He moved to a different practice weeks after I saw him. My next endo appointment was with my current doctor, and seven years later, it’s one of the healthiest doctor/patient relationships I’ve ever experienced. When I look at it that way, it was worth experiencing the worst in order to get the best.

Reflections on my Recent Endo Appointment

Last week, I wrote about some anxiety that I was feeling the day before I was due to see my endocrinologist. Now that the appointment has come and gone, I feel like I understand the reasons why I was so nervous…

  • Reason #1: Some part of me must’ve known that my A1c has gone up over the course of the last three months – it rose half a point, much to my dismay. I confessed to my doctor that I’ve been a little careless, particularly in the last month or so, when it comes to carb counting and healthy eating. Luckily, she wasn’t critical of me, but I almost wish that she’d reprimanded me in some way. It would’ve been the talking-to that I felt I deserved.
  • Reason #2: My endo permanently switched locations: She’s now based at the medical center that I used to go to when I was seeing a pediatric endocrinologist. I hadn’t been back there in about eight years, and boy, it brought back some unexpected emotions. I must admit that I had to hold back tears as I walked into the building. I don’t know why all the feelings hit me so hard, but I suspect that it might have been because of the flood of memories that flowed through my mind. It also symbolized the journey I’ve been on in just the last eight years of life with diabetes, in which I:
    • Transitioned from injections to a pump.
    • Stopped using Lantus.
    • Started using a Dexcom.
    • Improved my A1c/overall health significantly.
    • Decided to become a more active member in the diabetes community.

Those are some major changes, and the magnitude of them practically knocks me               out as I think about the last 20 years I’ve had with diabetes.

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Just making some awkward faces while I wait for my doctor. Also, I love that the exam room has a full-length mirror in it: It’s perfect for taking pictures/killing time while I wait!
  • Reason #3: I was meeting all sorts of new people, which is very nerve-wracking to an introverted extrovert like myself. I was used to the receptionists and nurses at the old location. I got to know them and vice versa. It made going to appointments a little easier. At this new/old location, though, I don’t know a soul except for my doctor. A reassuring smile or light conversation would’ve placated me on this visit, but perhaps those things will come in time.

Anyways, now that I’ve had time to think about the emotional aspects of this appointment…I’m going to switch gears and start doing the things that I need to do and that I am capable of doing in order to get my A1c back to where I want it. I know that I’ll get there. As my appointment wrapped up, I looked my endocrinologist in the eyes and promised her that the next time she saw me, I’d be down more than half a point. And I intend to fulfill that promise.

 

Endo Appointment Anxiety

I’m feeling anxious about my appointment with my endocrinologist tomorrow.

I don’t know why. I like my doctor very much: She’s always encouraging, pleasant, and helpful. The only thing I’d change about our appointments is to slow them down a bit; sometimes, she whips through them so quickly that I forget to ask her the questions floating around in the back of my mind.

Could it be that I’m worried about my A1c test? Possibly. I don’t know whether my A1c has gone up or down in the last three months. I have stretches of time in which my blood sugar behaves the way I want it to, but I also experience clusters of days here and there of complete diabetes chaos. In the last month, for instance, there were a few too many circumstances in which my blood sugar was above 300 mg/dL. Each time, I’d correct the high, only to either experience 1) a sudden drop resulting in a low or 2) several hours of prolonged high blood sugar because it was taking the insulin a long time to take effect.

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I love that there are posters about “understanding” diabetes on the wall – it’s too complex to break down into a few bullet points.

Now that I’m thinking about it, maybe those scattered, wicked-high blood sugars are the reason why I’m anxious about this appointment. I know that my doctor will probably ask me about them, and I’m going to have to admit to her that a combination of emotional eating, lack of carb counting, and general carelessness resulted in those highs. I know that she won’t judge me, but…I can’t help but judge myself for causing the blood sugar swings. The rational part of me is aware that it’s unhealthy to blame myself for occasional slip-ups, but the goodie-two-shoes, Miss “Perfect Diabetes” part of me is shaking her head in shame and disappointment.

If nothing else, this is a prime example of how diabetes can be an absolute (warning: foul language following) mind fuck.