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Whenever this notification pops up in my inbox, I’m filled with a sense of dread because it usually means one of 3 things: 1) I owe money to one of my doctors’ offices, 2) I have an upcoming medical appointment that I forgot about, or 3) There’s a problem with one of my prescriptions and my doctor’s office needs more information from me.
I never would’ve accounted for a fourth possible scenario, one that makes me feel good as a patient, being remotely likely…until it actually happened to me.
The message in question was from my diabetes nurse practitioner, and she wrote to me asking if I could recommend any diabetes support groups to another patient with T1D who was roughly my age. She explained that she thought to ask me because she knew that I have this blog/platform and remembered that I’ve spoken about how the diabetes community has greatly helped me over the years.
Upon reading the message, I immediately felt flattered that she thought to ask me. I typed up a thoughtful reply, including several different resources that might meet the patients’ needs, and sent it, feeling totally awestruck over how trust was definitely a two-way street in this particular HCP/patient relationship. It means a lot to me that my NP trusted my recommendations enough to not only want to pass them along to another patient, but to reach out and ask me for them in the first place. While my current overall healthcare team is lacking in some major ways – I won’t get into details on that, but let’s just say the search for a couple of new physicians is one that I’ll reluctantly embark on soon – this is reassurance that I do still have allies working for (and with) me. And that’s a really great feeling.
I’m still not used to having an endocrinology appointment every 6 months.
For my first two decades with diabetes, I saw an endocrinologist (or diabetes nurse practitioner [NP]) every 3 months. In hindsight, this sounds like a slightly aggressive amount of visits, but it’s what worked for me for a long time. Those appointments often served as motivation for me to do better, as well as learn about new diabetes care options available to me. And I’m fairly certain that they were a good opportunity for my parents and healthcare team to put their heads together, at least when I was younger, and come up with ways to make life with diabetes easier for me.
But as I’ve grown older and become more independent in my diabetes journey, I’ve relied a little less on these four-times-per-year check-ins. I don’t know exactly when, but in the last few years, my diabetes appointments became more of a nuisance than a boon…and I think my provider at the time recognized that. She suggested reducing my appointment frequency to twice a year, and since making that change I’ve greatly benefited from it.
And it’s why, when I attended my first appointment of the year recently, it felt like a nice little status check of where I’m at with my diabetes. In fact, that’s exactly how my NP kicked off the appointment: She asked me, “how are you doing? Is there anything new going on that you’d like to discuss?”
It felt great to be able to tell her: It’s all good.
Nothing new, no major complaints. We did chat a bit about my “diabetes cure” fluke from last month, in which we came up with no definitive answers but I was encouraged to monitor my blood sugars around my cycle a bit more carefully to see if I could come up with any patterns. We also went over my bloodwork and she was pleased to report to me that everything looked good, which is always reassuring to hear. The appointment ended with a check of my feet and thyroid, as they always do, and then I was free to go.
Even though we didn’t make any changes to my diabetes management, it was still worthwhile and comforting to know that my care team agrees with me that everything is all good and to keep up what I’m doing. That, in its own unique way, is enough motivation for me to do the best possible job taking care of my diabetes between now and the next appointment. It really is all good, and I’m grateful for (and proud of) that.
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.
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.
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 mightfeel 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.
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.
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.
…and it went well. Much better than I anticipated, both to my surprise and delight.
I’ve written here and here about my long overdue endocrinology appointment and my struggles deciding whether or not to pursue a new doctor. I eventually settled on taking an appointment with a nurse practitioner at my current endo’s office (mostly because I wanted advice from a professional sooner rather than later).
But my expectations for the appointment were low. I was doubtful that the NP would take the time to listen to, let alone address, my concerns. Fortunately, she proved me wrong.
My appointment – and the NP herself – really exceeded my expectations.
After we introduced ourselves to one another, I opened up to her that my previous appointment with the endocrinologist had been disappointing. I’d like to think I was gentle but brutally honest in my approach: Using kinder words than this, I explained to her that I felt like my last appointment was a waste of time and that I disagreed with the doctor’s assessment that I was doing just fine with my diabetes management. My sentiments were met with sympathy as the NP let me vent to her about where I felt I was lacking in terms of my diabetes care in the last several months.
The appointment lasted roughly 20 minutes or so, and by the end of it, several things happened: 1) I was given a new test kit and test strip prescription (I told the NP that I distrust my Livongo meter and want a reliable back-up for when I’m not wearing my CGM), 2) I had a referral to see a podiatrist due to concerns I expressed about my feet, 3) We agreed on a minor tweak to my correction factor that will hopefully help eliminate some mid-morning highs I’ve been experiencing, and 4) We set up a follow-up appointment with one another to take place in 3 months in addition to an appointment 6 months from now with the endocrinologist to make sure all of my bases are covered and I don’t have to go so long without seeing a doctor for my diabetes again.
I can’t remember the last time that I felt so heard by a diabetes clinician (or even any kind of clinician).
As the appointment concluded, I told the NP that I’m the type of person who relies on accountability in order to stay on top of my diabetes, and this appointment was the exact sort of accountability wake-up call that I needed to hold me over for the next few months until my next one.
And I daresay…thanks to the affability and receptiveness of this NP, I’m actually looking forward to our next visit in early 2022.
So I’ve got an update on my whole I-haven’t-seen-my-endocrinologist-in-8-months situation.
It’s not exactly the update I was hoping for, but it’s one that I believe just might push me into making some positive change around my diabetes care.
As it turns out, my endocrinologist is on leave and not taking appointments until February 2022, at the earliest.
What’s even crazier than that February 2022 wait time? The fact that I haven’t been at an in-person endo appointment since 2019.
I found this out after contacting her office and receiving a message back that I could either wait until that time to see her, or I could schedule an appointment with a doctor at a different location that the office would suggest to me.
At first, I wasn’t sure what the right move was. I was almost certain that I couldn’t (and shouldn’t) wait another 4 months to see someone about my diabetes; after all, I’ve been unhappy with my management for most of this year. But even though I have been similarly unhappy about my relationship with my current endo (it’s practically nonexistent), I admit that I felt fear over the prospect of seeing someone new because any other provider would only know me based on the information available to them in my records. In other words, they would only know me based on numbers, not based on who I am and my personal diabetes management style/beliefs.
So I sat on this news for a few days as I pondered whether or not to take this as a sign that it’s time for me to find a new permanent endo, despite the mere thought being incredibly daunting to me.
During my pondering period, I happened to get a call from my endo’s office that wound up making my mind up for me.
They called to let me know about an available appointment with the nurse practitioner who works closely with my endo – an appointment that I could get this week.
I hesitated for a moment (I really hadn’t anticipated getting an appointment before the end of the month) before agreeing to take the open slot. And I’m glad that’s what I decided to do, because 1) at least I can talk to someone about what I think I’m lacking in terms of my current diabetes management; 2) I might end up getting some quality advice that will redeem my endo’s office in my eyes; and 3) even if I don’t see eye to eye with this person, it will be the push I need to start actively pursuing a new endo that will more closely match my diabetes care style.
By chance, I was looking through some old lab results on my endocrinologist’s online patient portal when I noticed something.
I was (and still am, as of this writing) way overdue for an endo appointment.
The last time I saw my doctor was at a virtual appointment back in February – more than 8 months ago. This gap in time between appointments feel especially significant because most of my life with diabetes, I’ve gone to the endocrinologist 4 times per year. It was only when I started seeing this new endocrinologist (who I’m not a particularly big fan of, BTW) a couple of years ago, and it was at her suggestion that I dropped down to twice yearly appointments.
From the beginning, I haven’t loved that recommendation.
I’ve realized that I am the type of person who kind of relies on regular visits with my endocrinologist in order to keep my diabetes (and myself) in check. This doesn’t mean I actually enjoying going to see my endo – because who honestly likes to go see any doctor – but it does mean that I feel like there’s been a missing component to my diabetes care lately.
I guess I’ve just been too busy (traveling, working, trying to maintain a semblance of a social life) to slow down and really notice the absence in my diabetes care and management.
But what bothers me more is that my endo’s office hasn’t even tried to contact me to schedule an appointment. What gives?! The moment I knew that I was way past due for an appointment, I messaged their office, and I still haven’t received a response back.
So in addition to it being time for my endocrinology appointment, it may also be time for a new endocrinologist, period.
Hugging the Cactus 