When Diabetes Isn’t Responsible for an ER Trip

If something unexpected happens to me in terms of my health, I can almost always safely blame diabetes for causing whatever it may be. But when I absolutely, definitely cannot blame my diabetes, I can’t help but feel angry at my body for rebelling at me in ways that it shouldn’t. Particularly when those ways end up with me making a trip to the emergency room.

Let me set the scene: It was a Tuesday evening, around 7:45 P.M. My partner and I were watching an episode of Stranger Things (we’re not caught up yet so please, don’t spoil it for me). Suddenly, I felt an itch on my upper left arm. Like anyone would, I scratched it. But then it got more intense. Like, really, seriously itchy. I rolled up my sleeve so I would be able to scratch with greater ease, and was surprised to feel some bumps emerging on the itchy patch of skin.

I peeled off my sweater and stepped into better lighting in the bathroom so I could examine the area better. There was a large patch of red, inflamed skin on my arm that was covered with bumps that looked like hives. I was dumbfounded. Unsure of what triggered the hives, but alarmed by how swollen and irritated my arm looked, I shot a couple text messages to my EMT father and nurse best friend, who both advised me to get my arm looked at stat.

HUGGING THE CACTUS - A T1D BLOG
Stranger things have happened in my life with diabetes (just had to sneak a pun in there)

And that’s how I found myself in a crowded emergency room, tearful and furious at my body, on a random weeknight. Part of me was relieved that my diabetes didn’t seem to have anything to do with this (but see my recent post on Metformin and you’ll understand that I have some theories about that being the cause). But the other part of me was so pissed off that my body just couldn’t be normal for once. I felt that my body was lashing out at me like an unruly child, declaring its anger towards me in the form of an incredibly itchy, ugly rash. I couldn’t help but stew over the whole situation the entire time I waited to see a doctor.

Long story short, a dose of Benadryl cleared up the hives within an hour. The doctor was unable to determine a cause, since I couldn’t think of anything new introduced to my diet or any new scents/lotions/detergents used in my household. And insect bites got ruled out because the doctor was certain that a bite would be more localized and not spread in a giant patch on my arm. I’m still perplexed at how it happened, but I guess I just have to make peace with the fact that it did and be grateful for 1) making a total recovery from it and 2) not experiencing any issues with my blood sugars as a result of it.

When diabetes isn’t responsible for an ER trip, it means that it’s okay to still be upset about it, but also glad for not having to explain the intricacies of diabetes to every doctor and nurse that walks into the room…because I can’t think of a single PWD that would ever feel happy about taking on that happy task.

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.

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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.

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.

Molly, Meet Metformin

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.

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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.

A T1Diary of my Recent Endo Appointment

I’m trying something new here today, folks. As you can see, this blog post features not just words, but video, too. How exciting! The aforementioned video shows the before, during, and after of my most recent endocrinologist appointment. I share a touch more than I normally would in this format, and I cover something that’ll be a big subject in one of my upcoming blog posts.

Originally, I shared this video (in short clips) directly to Instagram, where it would live in my stories for 24 hours before going away. But the thought occurred to me to save and splice the video segments together to create a full video, albeit a poorly manufactured one. I’ve decided to call it my first attempt at video blogging, otherwise known as vlogging.

Fear not, my fellow wordsmiths: I still plan on writing actual blog posts. I’m not sure how regularly I’ll be vlogging. But I can promise that if people kinda dig this, then I’ll make a point to vlog semi-regularly. I can also promise that the videos will be a bit shorter and shot in one take, because 1) I don’t think anyone wants to hear/watch me blabber for more than a couple minutes and 2) it’ll help ensure that I don’t jump around from topic to topic. And for the sake of full disclosure, I’m not lovin’ my once-a-month Favorite Things Friday post as much as I used to…so this may eventually replace it. We’ll see.

So, without further ado, enjoy this little video from me…and remember that it was initially created for Instagram, which encourages users to make very short video/photo clips, and helps explain why this whole package is a bit choppy. And please do let me know, in the comments or on various social media channels (accessible in the upper-right hand menu of the Hugging the Cactus homepage), what your thoughts are on vlogging.

 

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.

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.

What Went Wrong During my Recent Visit to the Eye Doctor

You want to know what went wrong during my annual eye doctor’s appointment last week? Just about everything, that’s what went wrong!

Okay, that’s being over-the-top dramatic. Nothing life altering happened, thank goodness. But the appointment started out on the wrong foot when I had to wait more than an hour to be seen by the doctor. Let me tell you, there is nothing pleasant about waiting in a room that hasn’t been updated since about 1982, with ancient stacks of National Geographic as the sole source of entertainment.

Anyways, after an agonizingly long hour and change, I was finally called in to see the doctor. He started the appointment asking the usual slew of questions: How are you? How are your eyes? (My answer to both was a short, but still polite, “good”.) Then he asked the annoying question: Is your diabetes under control?

I hate that – the “under control”. It makes it seem as though diabetes can be tamed 100% of the time, like it’s a savage beast that just requires domesticating in order to live a normal life. But I answered it anyways, knowing he wouldn’t care to hear why his word choice was bothersome. “I’m doing well,” I said, my eyes wandering over to the doorway. I couldn’t understand why he’d chosen to leave the door open – the hallway to the waiting room was very short, and based on what I’d heard when other patients went in to see the doctor, everyone in the waiting room would be able to hear the entire doctor-patient interaction. Definitely not cool in my book, but instead of confronting the doctor about it, I opted to speak in a much quieter tone of voice than normal. At this point, I just wanted the appointment to be over.

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QUIZ TIME! Is this A) a medieval torture device OR B) a phoropter? (It’s B, which is the legitimate name of this piece of ocular equipment. Who knew?)

He spent 15 minutes running the standard eye tests (read the chart in front of you, does this setting make it better or worse, etc.), then dilated my eyes. I was sent back to that horrid waiting room for another 20 minute while the dilation took effect. When he called me back in to give my dilated pupils a final inspection, the following exchange happened:

Doctor: You know, I saw a patient the other day who was diagnosed with diabetes at birth.

Me: Yeah, I know a couple of people who were diagnosed as babies. It’s awful.

Doctor: Even though he’s had it his entire life, he doesn’t take very good care of it. He’s got diabetic retinopathy now. *shuffles paperwork*

Me: *Fidgeting uncomfortably in the chair, waiting for him to add to that. A long 20 seconds elapses before he finally says…*

Doctor: Fortunately, that’s not the case for you.

Um, WTF, Doc?! What’s up with that weird dramatic pause? Were you TRYING to freak me out? Mission accomplished, dude. But my oh my, such a sweet relief to hear that there is no diabetes in my eyes.

As I walked out of the building a few moments later, I couldn’t help but think about how this was a textbook example of how an appointment shouldn’t go. I left feeling an odd mix of emotions: disappointment with my doctor’s behavior as well as relief with his assessment that my eyes, at least, were proof of my well-managed (NOT under control) diabetes.