A Timely NDAM Endo Appointment

Diabetes, diabetes, diabetes! That’s all I hear and think about, all day long, day in and day out…

I risk sounding like Jan Brady from The Brady Bunch with that opening line, but since November 1st, diabetes is THE only thing on my mind – thanks to NDAM 2022 kicking off, among other factors.

That’s why the timing of my latest endocrinology appointment was particularly fortuitous – until I sat down in that doctor’s office, I hadn’t quite realized just how desperately I needed help from my healthcare team. And it wasn’t until we talked through my specific concerns that I realized that I’m actually doing a lot better on the diabetes front than I had assumed…and recognition of that, plus my obvious desire to aim for even more improvement, has gone a long way in changing my attitude.

In fact, you could say that this appointment totally revitalized how I feel about my diabetes lately, and I’m thankful that it happened before I got swallowed up in the throes of burnout.

I went into the appointment hoping that I would gain clarification around my use of the Omnipod 5 system. I started using it a couple of months ago, and from day one, I remained confident that it would revolutionize my diabetes care. That’s only been half true since I started using it, as the immediate and most obvious improvement happened to my nighttime blood sugars. But my daytime levels, particularly after breakfast and lunch, continued to mystify me.

This particular diabetes appointment came in the nick of time.

As I explained all this to my nurse practitioner, she listened without judgment – the first factor that went into boosting my diabetes spirits. What she said next was the second boon, and that was that I wasn’t alone in my struggle to adjust well to the automated insulin delivery. She validated that what I was feeling was normal, and that there were adjustments we could make as a team that would hopefully result in better utilization of the technology.

The third thing she did for me was put me in touch with someone at Insulet who would be able to answer my questions about the algorithm and fill in the blanks about the components of it that weren’t clicking with me. She made this connection for me before the end of our appointment, and witnessing her do so made me feel better about having one less hoop to jump through post-appointment…and goodness knows, when it comes to the admin side of diabetes, any assistance I can get on making phone calls or sending messages is a huge help.

This single, thirty-minute appointment took a huge weight off my shoulders that I’ve been carrying around all summer and fall this year. Of course, there’s still work to be done on my part, and little things like remembering to refills prescriptions are still my responsibility alone. But I’m feeling a lot more confident in my ability to make the progress that I’ve been so eager to achieve, and that alone is massive – and even more special, having happened during NDAM.

I Care About Eye Care

Like most people with diabetes, I see an ophthalmologist (essentially an eye health specialist) once a year. This is because diabetes can affect vision and overall eye wellness, so an ophthalmologist will look for things like cataracts, glaucoma, and macular degeneration within my eyes to make sure they’re healthy.

These appointments have all followed a similar pattern for me in the last couple dozen years that I’ve had diabetes. I’m brought into an exam room, my vision is tested with an eye chart, and then my eyes are dilated and examined with extremely bright lights. And I’ve been very fortunate to hear the same verdict from the ophthalmologist year after year: There’s no evidence of diabetes in my eyes, which translates to my eyes look healthy and normal.

This lack of diagnosis has always reassured me, and this year it was no exception. The only thing that actually changed for me was that it dawned on me that this appointment really means a lot to me. It was relatively quick, completely painless, and, dare I say, pleasant because of my doctor’s deep personal connection to diabetes (her son is around my age and also has T1D). She truly gets what it’s like, and didn’t make a big deal whatsoever when my Dexcom interrupted our appointment with a high alarm.

My annual appointment with my ophthalmologist is like performing a maintenance check on a car – it’s my chance to make sure everything is operating smoothly.

I’ve come to realize that even though it’s a blip on the radar compared to all the other doctors and healthcare specialists I see throughout the year, it’s still significant to me because I don’t take my vision for granted. Sure, I can’t see much without the aid of my contacts or glasses, but I can still see without pain, blurriness, or any other general eye discomfort. That makes me lucky and also motivates me to continue doing all the right things for my eyes, such as replacing my contact lenses on schedule and taking care to use high-quality cosmetic products. I can’t say that those two factors alone have contributed to my eye health (in fact, I can say with certainty that it’s my diabetes management more than anything else), but even so…I recognize that eye health is not to be taken lightly.

I care about eye care, and I definitely see the connection that doing my best for my ‘betes benefits it, my eyes, and well…all of me.

My Endo Broke Up With Me

Break ups…they’re hard not to take personally. Especially when they aren’t done in person, face-to-face.

Phone calls are worse. But letters are the worst. Breaking up with anyone by sending them a letter in the mail removes all emotion from the equation. But I suppose there was no other way for my endocrinologist to end our doctor-patient relationship than via a vague, impersonal letter that wasn’t delivered just to me, but all of her patients.

That’s right…my endocrinologist broke up with all of us and informed us in a letter that she was leaving her (well, OUR) endocrinology office.

So long and farewell, endocrinologist…

She’s officially gone from the practice that I’ve been going to for nearly half of my life now, and I’m not going to lie, her abrupt departure shook me a bit. It’s not that I’m going to miss this doctor – I was never a huge fan of her bedside manner or approach to my concerns with my diabetes care. It’s more so that I’ll miss the convenience of traveling to this particular clinic, as well as the familiarity I have with all of their processes.

And it’s even more so that this situation is forcing me to face something I’ve been in serious denial about for quite some time: I need to prioritize finding a new endocrinologist that actually understands my wants and needs, and break out of the cycle of complacency that I’ve been stuck in all my adulthood.

It’s a daunting prospect and a reality that I’ve been trying to accept as I’ve gotten older and as my needs have changed, but real talk? Shopping around for a new doctor is exhausting. It’s just as bad, if not worse, than dating. You read about a person online, get your hopes up that they’ll be a perfect match, make plans to pencil them into your schedule, and then when you finally meet them…you’re disappointed. Wash, rinse, and repeat until you make a genuine connection with someone. Only the stakes feel higher in this situation because a doctor plays an integral role in your overall health and well-being.

So while it’s far from fun to find myself on the search for a new diabetes provider, I can still find a silver lining in the scenario. And that’s the belief and optimism that there is a doctor out there who will become a reliable and supportive player on my diabetes care team. I will find someone who is not located too far away, and who is kind, caring, compassionate, and knowledgeable when it comes to all things diabetes.

I’ve just got to have faith – and a little patience as I pour time and energy into the process.

Why I Called Quits on Metformin

This post was originally published on Hugging the Cactus on December 6, 2019. I’m sharing it again today as a follow-up to Monday’s post, which explained how I was introduced to Metformin. This one covers why I decided to call it quits on my Metformin journey. Read on for the full scoop…

Well, well, well…looks like I’ve got another Metformin update for you all.

You’ve probably lost track of where I am in this long, twisting journey with the pill. (If you need a refresher, all you need to do is click here and read through my original posts.)

All caught up? Great. Now you really understand how complex my relationship with Metformin is.

There were times that I loved it. There were times that I hated it. And there were times when I simply couldn’t be sure if it was working for me the way that I’d hoped and needed it to.

I thought Metformin was right for me, but it turns out it definitely is not.

This last go-round represented the latter thought: Metformin simply wasn’t cutting it for me.

I’d been taking one pill daily for about a month when I decided to quit. The reason why I stopped taking it is simple: I wasn’t noticing a dramatic reduction in how much insulin I take each day. It was maybe a one or two unit drop, and that just doesn’t justify me taking a pill like this on a daily basis.

Now, you might be wondering why I didn’t amp up my dose. After all, it says right on the bottle that I can take up to four pills daily. Well, I chose not to take more for a few reasons: 1) I’m in between endocrinologists right now, and don’t really have anyone to consult regarding dosage, 2) At one point in time, I thought I noticed side effects of taking Metformin, and I’ve convinced myself that any possible side effects would intensify with a higher dose, 3) I wasn’t sure whether the higher blood sugars I was dealing with in the fall were due to stress or permanent changes that my body was experiencing.

So yeah, as you can see, it’s not a cut-and-dry answer when it comes to me increasing my Metformin dose.

I feel like I’m in a better place now with my blood sugars and daily insulin intake. Certainly, things have improved compared to how they were in September and much of October. Rather than fret over taking “too much” insulin every day, I’m going to focus on things that I have greater ability to control, such as the foods I choose to eat (that may or may not impact how much insulin I need) and the levels of exercise I get each week. I feel like that’s a healthier, better way to take care of myself.

So…farewell, Metformin. I won’t miss you. I know you do great things for other people with diabetes, but I’m not sure that you and I are a good match.

Molly, Meet Metformin

This blog post was originally published on Hugging the Cactus on February 25, 2019. I’m sharing it again today because when I initially started taking Metformin, I felt really alone because I didn’t know any other person with T1D who was also taking it. It is my hope that talking about my experience helps someone who might feel similarly or would like to hear from a fellow T1D what it was like to start Metformin. Read on for more…

You may have read the title to this post and said to yourself, “Met-WHAT?”

Metformin is the new medication I’ve started taking (along with my typical insulin) to help regulate my blood sugars.

Maybe you didn’t make it all the way to that second sentence; instead, maybe you just Googled Metformin to learn more about it. And you probably immediately got confused, because the Google search results explained that Metformin is a medication normally prescribed to people with type 2 diabetes. You know that I have type 1, though, so what gives? Why am I taking this new pill?

You see, for about a year or so, my endocrinologist has been gently encouraging me to try Metformin. She expressed concerns over the fact that I’ve had diabetes for more than 20 years, and in that span of time, I’ve had to take a lot of insulin. Like, an incalculable amount. And while that insulin helps to keep me alive, there’s also risks associated with it. Namely, she explained to me that there’s research that indicates that people with type 1 who rely on large amounts of insulin have a higher risk of developing cancer later in life.

It took a long time for me to feel ready to try Metformin, but I’m glad I didn’t start it until I was comfortable doing so.

Whoa. The “c” word. Something I never thought I’d hear during a doctor’s appointment. If you know me personally at all, then I’m sure it’s not hard to imagine that I pretty much shutdown at the mention of “cancer”. Almost immediately, I panicked and asked why she thought this research was worth mentioning. She said that it was part of her reasoning for wanting me to start Metformin. The idea is that it would make my insulin more effective, and ultimately decrease the amount of insulin I need each day. She went into a little more detail, mentioning that the only side effects tend to be nausea/upset stomach – and that’s when I stopped listening. I politely told her that I didn’t think Metformin was a wise option for me at that time, and later that day, when I took to Twitter to ask other T1Ds what they thought, I gained swift validation that I’d made the right decision: Other T1Ds with Metformin experience told me that the stomach issues they had when taking it were miserable and that they wouldn’t recommend giving it a try. Plus, I consulted with my T1D pharmacist aunt, and her opinions matched those of the other T1Ds on Twitter. So that was all I needed to hear to feel at peace with my choice to not take Metformin.

In fact, it was enough for me to turn my endocrinologist’s offer down during our next two or three appointments. I was relieved that she never pushed me to try it, but there was a small part of me that wondered whether I should give it more serious consideration. Maybe I should let her talk me into a little, rather than brushing it away and using fear as my excuse.

So we did talk about, during my most recent visit with her earlier this month. She gave me some more compelling reasons to consider taking it. Not only could I reduce my insulin intake, but it might also help me with some preexisting digestive issues I’ve had since childhood. When I asked her about the negative side effects on the stomach that I’d read about online, she told me that she would only prescribe me the “extended release” version of Metformin, which had a much lower (if any) chance of inducing nausea or any less…desirable gastrointestinal disorders.

This news definitely perked me up. We discussed a plan for introducing Metformin to my body: Start by taking one pill daily after dinner. Increase by one pill each week until I’m at four pills per day, the limit. At any point in time, I could message her with questions if I started to notice low blood sugars in the evening.

I felt reassured by this logical plan, as well as her explanations of the benefits of Metformin. So I bit the bullet and I’m in my first week of incorporating it into my post-dinner routine. I can’t say that I’ve noticed even the slightest difference, which isn’t a bad thing. I imagine that will change as my dosage increases.

I intend to blog about this new journey with Metformin; not just for the sake of keeping track of how it affects me, but to also help inform other T1Ds who may have been or may be in the same situation that I was. We’ll just have to see how it goes, but for now, rest assured that I’ll be honest in my writings about my Metformin experience. At this moment in time, I can’t help but feel hopeful that down the road, I’ll be glad I made this decision when I felt ready for it, as opposed to when I was fearful of it.

My Experience Attending the ADCES All-State Meeting as a Panelist

Talking to one doctor or healthcare provider can be intimidating. It’s not exactly my idea of “fun” to sit in a stuffy room with a medical professional and discuss various health concerns. But what about talking to dozens of them, all at the same time? Forget about fun, it sounds like downright torture.

Fortunately, “torture” is not the word I would use to describe my experience speaking as a panelist at the ADCES Massachusetts All-State meeting earlier this month.

I really enjoyed the opportunity to speak on this panel.

Rather, words like “empowering”, “therapeutic”, and “reflective” sum up how I felt during the event, and I was pleasantly surprised by that outcome. After all, I had no idea what to expect – I was there sort of on behalf of my job, but also as a favor to a former colleague who was leading a session about navigating young adulthood and diabetes; in particular, what it’s been like to transition into the “new normal” of working from home, relying on telehealth visits, and dealing with record-high levels of mental health crises among the young adult population as a result of the pandemic in the last couple of years.

You know, just the type of light and fluffy stuff people love to spend Saturday afternoons discussing, right? (Yes, that was a sarcastic statement.)

Despite the heaviness of the subject, it was a really positive experience for me because I was able to be completely open about my experiences in a room of surprisingly engaged diabetes healthcare professionals. I say “surprisingly” only because I was speaking to a room of complete strangers who knew nothing about me, but that turned out to be the beauty of the entire discussion – I was a neutral third party whose experience they could learn from and take with them into future appointments with T1D patients my age. Similarly, I was able to draw from my own experiences with healthcare professionals in the last couple of years and elaborate on what’s worked (and what hasn’t), which was healing for me to talk about because as I’ve written about here in the past, I’ve had some less than satisfactory encounters with my doctors since the onset of the pandemic. It was also nice to feel like I was really being heard by these individuals, who reacted to my stories with empathy, kindness, and concern.

All in all, I’m pleased that this speaking opportunity went so well, and I’m grateful that I will have additional chances to be at events like this in the future, thanks to my job and diabetes community connections.

Unsteadily Stable

“Molly,

Your labs are stable. A1c is just slightly higher.”

This was the ultra-concise memo that my endocrinologist sent me post-appointment.

Nothing about this note was shocking, but somehow I’d deluded myself into thinking that my doctor’s analysis of my diabetes management in the last six months would be…I don’t know, a little more personal? Maybe contain congratulatory sentiments or words of encouragement?

Words of encouragement may have been more helpful in getting me to tip the scale and feel steadier about my diabetes management…

After all, I’d told her during our appointment that while I didn’t have any specific diabetes concerns to discuss, I did have a strong desire to improve my management. I know that I’m doing better than I was, say, at the age of 18 or 19, but as I grow older I become more acutely aware of the things that I could improve upon with my diabetes care. I acknowledge and accept that it’s up to me to be accountable for taking steps towards progress, yet I do rely on the input from my healthcare team in order to come up with realistic ways for me to make said progress. So naturally, I felt a slight tinge of disappointment when we discussed and agreed on a single, minor tweak to my basal and bolus settings before parting ways, with plans to see one another again in six months.

I couldn’t help but feel…that’s it? That’s all that I got out of this appointment? I suppose I’m feeling a bit jaded about it because it was my first time seeing my endocrinologist in about a year, since she had an extended leave of absence. In the time since I last saw her, I’d had a couple of appointments with the nurse practitioner who she allegedly works closely with, and I guess I had assumed that the NP would update my doctor on how I’m more determined than ever to take steps to achieve more time in range.

Now, I realize more than ever that I can only rely on myself to convey my thoughts and feelings about my diabetes to my healthcare team. Now, I realize that while my labs indicate my diabetes “stability”, my attitude towards my diabetes is the opposite.

I’m calling it…unsteadily stable. I’m doing fine with my diabetes, but I know that I am capable of doing better and feel like the path there will be a bumpy one.

Another way of putting it? I’m like one of those children’s roly-poly toys – I’m a little wobbly in terms of the goals I have for my diabetes management, but I certainly won’t let it cause me to fall down.

You Should Feel Empowered to Advocate for Yourself and Your Diabetes

This was the message conveyed to me after one of the best endocrinology appointments I’ve ever had, at least in my adulthood.

I’ll confess that I was nervous going to my first endo appointment of the new year. I didn’t know what to expect as I wasn’t bringing any specific concerns with me – besides the fact that I was upset about a conversation I’d had with a different doctor regarding a separate issue.

After the nurse practitioner and I exchanged pleasantries, she sat down at the computer screen that was displaying my record and asked me what I wanted to discuss during our appointment.

That’s when it all came flooding out.

I babbled about how I didn’t have anything in particular I wanted to talk to her about besides the fact that I got a very discouraging message from a doctor who told me I needed to have better control over my diabetes, and that this was infuriating to me because 1) not all of my health concerns can be blamed on my diabetes and 2) it was disheartening to be told by one subset of my health care team that I’m doing great with an A1c of around 7, but to hear from another subset that I’m not doing great and need to work harder. Once I finished my train of thought, I braced myself for a less-than-favorable reaction.

But that’s not what I got.

I’m really glad that nobody walked into the exam room as I was taking goofy selfies like this.

Rather, my NP asked me to explain my concerns in greater detail. She sat, listened, and told me that she disagreed with the comments from my other doctor’s office. It was validating to hear someone who actually does work in diabetes reassure me that, for starters, my diabetes might not necessarily be to blame for any other health issues I was experiencing. She also made me feel better about my A1c and that my track record proves how hard I’ve worked over the years to maintain a 7 (or below) and that it’s not indicative at all of a lack of control over anything.

Best of all, when I sheepishly admitted to her that I’d been embarrassed to write in about the health concern in question, she reminded me that I should always feel empowered to advocate for myself and my overall wellness. It was an incredibly powerful message for her to convey to me, seeing as my self-doubt had manifested itself in full-force over this whole interaction with the doctor’s office. And it’s a message that I plan to carry with me to future doctor’s appointments to help ensure that I do stay on top of my health to the fullest extent possible, while also making my voice heard.

At the end of the appointment, my NP turned and said to me that I’m an inspiration. While I don’t exactly agree with her words, I can’t remember the last time I left an appointment feeling truly understood as a patient living with type 1 diabetes. That’s what’s inspiring to me…the fact that a physician took the time to recognize the hard work it takes to live everyday life with T1D. And the discovery that my A1c has dropped by .3 to a level that I’m very proud to have reached – well, that’s the cherry on top of my first endocrinology visit of 2022.

“You Need to Have Better Control”

I read those six words, all strung together in a terse message from my doctor’s office.

Not exactly the response I was anticipating when I reached out to them to express concerns over a minor health issue I was experiencing…

Let me back up a bit. In early January, I decided to message one of my doctor’s to discuss said minor health issue. A week went by and I didn’t hear anything from them, so I sent them another message, reminding them gently that I was hoping for a reply sooner rather than later. Several more days pass by and I start to get annoyed, but I still keep everything in perspective: Maybe they’re understaffed at the moment. Perhaps a computer error prevented them from getting my messages. Or they might be just crazy busy with beginning-of-the-year appointments and responsibilities. Whatever the case may be, I decided to message one more time, drawing attention to the fact that my first message had been sent two weeks prior and that if I didn’t hear back by the end of the week, then I’d just call the office to hopefully connect with a nurse.

Luckily, it didn’t come down to that because within 48 hours of me sending that third message, I finally heard back from someone. And this someone said something that left me a bit gobsmacked:

“…with an A1c of 7 – you need to be better with your control.”

Life with diabetes often feels like this image – like you’re the only one in the control room of a command center that dictates whether or not you live. And yep, it’s exhausting.

I couldn’t believe what I’d just read, for multiple reasons. For starters, I’d mentioned in my first message that I *think* my A1c was right around 7, but I couldn’t be sure because it’s been a bit since I last had my A1c checked. So clearly, by reading the response from my doctor, nobody had gone in to check my records or look up my historical A1c – which may or may not have provided them with better context so they could answer my question better, but that’s besides the point. What had me most irate was the fact that I’ve been told – time and time again – that I’m doing a great job with an A1c around 7. I’ve had endos and nurse practitioners alike tell me that I don’t need to make any major changes and that I’m too hard on myself when I express a desire to get a lower A1c. So to have a completely different medical professional make a snap judgment right then and there that implies I do not have control over my A1c is obviously in direct conflict with what I’ve heard from others. How maddening is that?

Furthermore…I’m sorry, but A1c does not paint a complete picture of my “control”. I believe, along with many other people in the diabetes community (including medical professionals) that time in range is where it’s at. The amount of time I spend in range is leaps and bounds better than where I was in college – and honestly, so is my A1c.

This is why it’s incredibly frustrating to me that this person handled my health issue as though it was directly related to my diabetes and their perception of my lack of control. The three-sentence, curt reply to my initial message didn’t exactly help matters either, though I’m trying to not read too much into that…after all, you can’t gauge tone via written message.

I’ve decided the best way to handle this whole exchange is to bring my issue up again when I see this doctor later in the year. I’m not going to reply in the message thread, because I don’t see how that would cause any good, but I will bring this up when I go to see the nurse practitioner at my endocrinologist’s office at the end of this month. While she likely can’t fully help me address my health concern, she’s bound to provide me with some insight and some actual helpful advice that won’t involve her jumping to conclusions about my control. We’ll see how it goes.

For now, I will just have to try to keep my head held up high by taking control of the situation, if not my diabetes.

Adding Yet Another Doctor to my Diabetes Care Team…

As a person with diabetes, I see (what feels like) a ton of doctors. It’s probably not that many more compared to most people, but in addition to seeing doctors like a primary care physician and a dentist, I also see an ophthalmologist (eye care specialist), an endocrinologist (my diabetes doctor), an allergist, and a mental health professional.

But recently, one more doctor got added to that list: a podiatrist.

A podiatrist has become the newest member of my diabetes care team.

I wrote about how the nurse practitioner at my endocrinologist’s office promised to hook me up with a referral to a podiatrist in this blog post. Long story short, I voiced my concerns to her over the calluses on my feet, and she suggested I see a podiatrist so I could get an expert’s opinion on whether or not they were something to be worried about.

Fortunately, my first meeting with the podiatrist went well as I was assured that my calluses aren’t anything to stress over…but that initial appointment turned into a series of follow-ups (I’ll be seeing him every six months) as I learned that the podiatrist wanted me to start wearing orthotics to support pronation in my feet that I never realized I had. The doctor advised me to come back every six months so the degenerative changes in my feet can continue to be monitored, even though he was very pleased to see in my X-rays that the overall health of the bones in both feet is good.

Naturally, I had mixed feelings regarding the outcome of my first two appointments with the podiatrist.

On the one hand, I was happy to hear that my diabetes wasn’t creating any complications (beyond poor circulation – my feet are always cold and according to the podiatrist, this is due to Raynaud’s). Nerve damage is always something that I fear and I was genuinely frightened that the doctor was going to tell me that I was beginning to show signs of diabetic neuropathy in my feet. Obviously, I’m so relieved that this isn’t the case.

On the other hand, I was bummed to hear that his recommendation was to wear orthotics. Orthotics? Before I’m 30?! I guess it’s just the connotation of the word (it conjures up images of elderly folks hobbling around on canes and wearing special-made sneakers to support unsteady gaits) that’s got me rattled. I never realized that my tendency to walk around on my tippy-toes was due to the way my foot is shaped…but honestly, if wearing orthotics in my shoes now will help prevent or delay hip and knee pain later on in life, then I’ll quit complaining and just get on with it, even though it means I’ve got another doctor to see semi-regularly now.