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.

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.

I Finally Had an Endo Appointment, and…

…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.

An Endo Update

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.

We’ll see what happens.

Way Overdue for An Endo Appointment

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.

An Enjoyable Eye Exam

I think I just had the best doctor’s appointment of my life (so far).

And the most incredible part about that statement? This was my very first appointment with this particular doctor and she absolutely nailed it. I’m almost bummed that I only have to see her annually…

Let me back up a bit. This doctor is my new ophthalmologist (eye care specialist). I switched to her because I’d seen my previous one for just about my entire life, and while he was unquestionably an excellent and knowledgeable doctor, we had some…personality clashes that made my yearly visits with him not so great. It wasn’t like we had a breaking point or anything during my last appointment with him, I just decided that now was the time to make the switch to someone else.

So I did. In August, I contacted the new doctor’s office and set up an appointment. I also wrote to my old doctor and requested the last few years’ worth of notes to be faxed to the new doctor. I’d never written a formal letter like that before, but I kept it short, sweet, and professional by informing him that I’d be seeing a new doctor, providing him with her location and fax number, and thanking him for taking great care of me over the years.

An Enjoyable eye exam
I totally snagged this picture of the exam equipment during the few minutes I was in the room alone. 

Making the switch was as simple as those steps – I had nothing else to do but show up for my appointment on September 1.

When I arrived to the office, I took note of all the social distancing protocol in place. There were only a dozen or so chairs spread out throughout the waiting room. There were dividers in place and stickers on the floor to mark six or more feet apart from the next person in line. The receptionist took my temperature with a contact-less thermometer and of course, nobody was allowed into the area without a mask.

Pleased with the careful measurements the office had taken, I waited for a few minutes before being called into an exam room. A nurse gave me a brief exam and had me read an eye chart using my current glasses prescription, then she dilated my eyes before leaving to go get the doctor.

Within a couple minutes, the doctor entered…and it was nonstop chatter from the moment she came in to the moment I left the practice. Her bubbly energy was infectious and it was obvious I was speaking to someone who truly loves her job. She let me know straightaway that her son is also a T1D right around my age, so she’s more than familiar with every facet of caring for it (with, of course, a special focus on eye health).

We talked a little about everything from insulin pumps, careers, CGMs, my broken bone (she was rocking a brace on her foot, so we shared a laugh over our injuries), and our studies in college. And yes, eventually we did get to the eye exam component, which took barely 60 seconds. She exclaimed with enthusiasm over my “gorgeous” eye health and told me that she is a T1D cheerleader, meaning she recognizes how hard we work to take the best possible care of ourselves.

Absolutely amazing, right?!

The appointment ended with me mentioning my appearance in Dexcom G6 advertisements, and she requested that I send her a clip via email. I did so shortly after I got home, and received the loveliest response back:

“You are spectacular. See you next year!”

I swear, I’ve never left a doctor’s appointment feeling so wonderful about myself. It’s a credit to all physicians like this one, who are passionate about what they do, happy to really engage with patients, and demonstrate in-depth knowledge of medicine and the human body.

Why Meeting a New Endocrinologist is Scarier Than Going on a First Date

I have an appointment with my endocrinologist today. Or should I say, the person who I hope is my new endocrinologist. I really want this patient-doctor relationship to work out!

It’s my first new endocrinologist in about ten years and I am effing nervous. It’s comparable to going out on a first date with someone, only I’m not hoping to be wooed with flowers or treated to a fancy meal.

I’m hoping that this person is someone I can trust with my health…which I value a lot more than any of the associated costs of a first date.

Why Meeting a New Endocrinologist is Scarier Than Going on a First Date
There are higher stakes with a new endocrinologist than with a new dating-app match.

Why is this new doctor terrifying to me? For starters, I have so many questions. What if she doesn’t like me? What if I don’t like her? What if she judges me? What if she’s too lenient? What if…? The list goes on and on.

Plus, I’m seeing her after smack dab in the middle of holiday celebrations, also known as the most turbulent time of the year for me and my blood sugars. I’ve had so many highs in the last month that I’ve tried to stay on top of, but she’s bound to notice them and ask me if this is a regular thing for me. It’s also pretty likely that my weight has gone up as a result of the many indulgences I’ve enjoyed in the last few weeks, and I’m worried about whether comments will be made on that.

Not to mention that I haven’t seen an endocrinologist since…late August, I think? And that appointment was with my “old” doctor, who left to practice somewhere far, far away. It was a bittersweet parting, and it wasn’t on amicable terms because neither of us was ready for it to be over. So I’m heading into a new potential endocrinologist relationship with that in my mind, and my new doctor has a lot to live up to when compared with my old doctor.

I just want everything to go well. I know that if it’s not a perfect fit, it’ll be pretty evident straightaway, and I can seek another new endocrinologist. But to continue with the dating metaphor, it’s not as easy as just swiping along and seeing what other nearby options I have. There are other concerns beyond location: I need to make sure my doctor can accept my insurance, on top of them being likable, knowledgable, and eager to help me manage my diabetes. It might be surprising to learn that this particular combination is a tall order, but again, when it comes to my health I refuse to just settle.

Fingers crossed, it’s a match from the start and all of my concerns will be rendered invalid late this afternoon at the conclusion of my appointment…

 

Why It’s Important to Remember That The Doctor Isn’t Always Right

We should always do what medical professionals tell us to do…right?

I mean, why wouldn’t we? They’ve gone through many years of extensive training. They’ve got the education and degree(s) to prove their medical expertise. So why would a patient question a doctor or a nurse when they’re telling them to do something that will improve the patient’s health?

Well, a patient might question a medical professional’s advice when it seems contrary to everything else that the patient’s been told by other, trusted members of their healthcare team.

This is exactly what happened to me when I went to see my primary care doctor a few months ago.

Actually, more specifically, I saw a nurse practitioner who works at my primary care doctor’s practice. I made an appointment with the office because I’d been experiencing some wheeziness that made me think I might have asthma that couldn’t reliably be treated with a rescue inhaler (which is all that I had) on its own. I figured it’d be smart to talk it over with my doctor, or at least someone at his practice, to see if I should start treating my symptoms with another kind of medication or therapy.

Lemon Squeeze
As patients, we should always do what the doctor says…right?

My appointment barely lasted 20 minutes. I met with a nurse practitioner who I’d never seen before. I explained how I’d been wheezing the last several days, and how it got worse when I went to lie down in bed at night. Before I could get another word out, she asked me if a rescue inhaler was all I had to use in these situations. I said yes. She proceeded to tell me that rescue inhalers aren’t designed for daily use because, as the name implies, they’re for emergency situations. Then she started telling me about a steroid that she thought I should begin to use twice daily.

I cringed at the word “steroid” because I know that they don’t interact well with my blood sugars. Steroids can make blood sugars go high rapidly, and it can take hours for blood sugar to come back down to normal levels. I told her this, and she shrugged off my concerns by telling me that the inhaled steroid would be going directly to my lungs, not my entire body like a typical steroid. I remember nodding uneasily and asking her how to use the steroid – I wasn’t going to leave the room until I had a satisfactory amount of information on this new, unfamiliar drug.

She told me I’d take it once in the morning and once at night, before brushing my teeth. Apparently, I would need to be careful and remember to rinse my mouth out with water immediately after administering the medication in order to prevent…thrush. (If you’re unfamiliar with that word, it has something to do with oral, yeast, and infection…A.K.A. something that sounds like a nightmare.) That’s when I really became alarmed. I told her that people with T1D are already more susceptible to that kind of infection, and wouldn’t it be a bad idea to even risk it by taking this steroid two times a day? And again, she essentially disregarded my protests and told me I’d be fine as long as I remembered to rinse. Then, she sent the prescription to the local pharmacy and left me in the exam room in a confused daze.

I went to pick up the prescription, but I never used it. I decided to trust my judgment and avoid a steroid that seemed like it would cause more harm than good. I also figured that since the weather had abruptly gotten cold, then perhaps my asthma symptoms would subside before long; in the meantime, I could use my rescue inhaler as necessary. And you know what?

I was right. My breathing was normal again in a matter of days, and I only had to take a few puffs from the inhaler when it was all said and done. My decision to take my health in my own hands was further validated when I went to go see my allergist soon after this ordeal. I told her all about it as we ran through the list of medications that I regularly take. She was incredulous that I was prescribed the steroid in the first place, seeing as my asthma is practically non-existent. To quote her, “You’re (meaning me) already sweet enough, you don’t need this steroid or a risk of thrush!”

That remark alone sealed it for me: I did what I thought was best because I knew I was capable of making a decision about my body; nobody knows myself better than me…even a medical professional.