Category Archives: type 1 diabetes

The Epic Letter of Complaint

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I’m not one to typically complain. I rarely send back meals or make a scene about the poor service I receive. I don’t leave complaint cards or online reviews, even when sometimes I should. I don’t like confrontation and I lack assertiveness. These are things I know about myself and am working on changing. And when I do decide to stand up for myself and make a phone call about poor service, I often get so distraught that the tears start flowing, completely undermining my efforts.

This year has been a true test of my patience and my tolerance for poor treatment. Between my endocrinology office and online mail pharmacy, I have spent countless hours on the phone or waiting to get the care and medicines that I need.

When the first incident happened, I was upset, but I let it go. It was the first time something had happened in the past 8 years so I didn’t make a big deal. When the second incident happened, I was perturbed and frustrated. I knew what was happening and the way that I was being treated was wrong. I made a complaint, but I still didn’t feel that my situation was being properly recognized and dealt with. I started thinking about switching doctors, but I still stayed. When the third incident happened, enough was enough. I was mad. Something had to be done.

I wrote this letter (email) back in June. I sent it yesterday. Why did I wait so long? Partially because I didn’t want to burn any bridges until I was sure that I wouldn’t be coming back, until I had secured a new doctor that I liked. Since this has now been accomplished, I was ready.

Why a letter? As I mentioned early, it’s often hard for me to get everything I need to say out before the tears take over. I wanted to be taken seriously, I wanted to be sure that I said everything I wanted to say. And while emotion isn’t bad, I didn’t want it to get in the way so I articulated my experiences in writing.

What was I hoping to accomplish by sending the letter? Honestly, I just wanted the office to know what kind of errors were being made and the kind of treatment the office was providing so hopefully no one else would have to go through what I went through. Yes I wanted an apology and my feelings to be validated, but more importantly, I want to be sure that other patients are well cared for and don’t slip through the cracks the way I did.

So I sent this letter. I know it’s long, but hey, a lot of shit happened that I wanted to tell them about.

Dear Mr. X*,
I have been a type 1 diabetes patient in your office for the past 8 years.
I have been on an insulin pump this entire time.
Several recent medical error events in your office have made me frustrated and worried about the care that I have been receiving.
Recently, while attempting to refill my Humalog prescription I was asked by my mail order pharmacy to call them and verify the prescription that they had received from Dr. Y. This prescription was for 27 vials of insulin, and the instructions were for me to inject 100u three times a day. I usually only require 9 vials for the 3 months.
1.       As I stated earlier, I have been on an insulin pump for the past 12 years, nowhere in my record should it be recorded that I inject insulin
2.       This amount of insulin would probably kill me
3.       I once again needed to call your office and have this corrected with my mail pharmacy so that my necessary prescription could be filled before I ran out of insulin.
When I called the endocrinology office to get the prescription corrected, I talked to a nurse who figured out where the mistake was. I told her that I needed the correct amount sent to the mail pharmacy and she assured me that she was doing this electronically as we spoke on the phone. The next day I still had not received any notification from the mail pharmacy saying that it was received, so once again I called back the office to inquire as to what happened. After checking, it was determined that the prescription was supposedly sent to a different pharmacy and not the mail pharmacy,  although I had asked multiple times over multiple communications for this insurance company mandated change.
Frustrated that this was again not what I had requested, I made sure the nurse sent it to the correct pharmacy. I then called the other pharmacy to let them know that the prescription was incorrectly called in, that I would not be picking it up, and they informed me that they never received a prescription for insulin!
This makes me question both the medical record software and whether your office ever called it in to begin with.
I was forced to once again call the endocrinology office to verify that everything was correct since I was starting to run out of insulin, and was able to get this confirmation.
It is unacceptable that this process took four phone calls to get the correct prescription to the correct pharmacy over multiple days.  As you know, insulin is essential to my health, with fatal consequences if I run out.
And this is not the first time that the lack of care from this office has occurred. Earlier this year, I drove over 40 miles taking off work, waited 90 minutes for an appointment only then to be told by another doctor at the practice (Dr. Y was not seeing patients during this time) that she had clinicals now and could not see me that day and that I would have to come back the next day. Although being compensated for the gas from your office was a confirmation of a problem, this did not instill in me any feeling that I was “appreciated” as a patient, rather that I was considered just another body to move around to the convenience of the doctor.
Additionally, during this past winter, it took 3 weeks and multiple phone calls to get a prescription refilled for my Dexcom sensors due to a misunderstanding in your office that I wanted a refill and not a prescription for a whole new system. During those 3 weeks, I was out of sensors, thus not able to use my Dexcom unit.
This event itself was totally unacceptable.  But coupled with the recent insulin debacle, it makes me question the safeguards (if any) present in your office.
As a patient, and healthcare consumer, this utter lack of respect  of my time, poor record keeping by your office,  and obvious lack of concern for my welling being shown by your staff is not only medically concerning but totally unacceptable.
I have a Master’s Degree in Public Health, and work in the Healthcare arena. I have a high level of health literacy, and unlike many, I am able to generally navigate the complicated and complex health care system. Many if not most of your patients do not have this ability. I hope that you institute changes to the offices policies and practices, so that no one else will have to go through the ludicrous process that I had to endure to get my life sustaining medication and diabetes sensors. This multiple event experience has been completely unacceptable.
If you would like to discuss this further, I can be reached at XXX-XXX-XXXX
Thank you,
Reva
*All identifying information has been removed from this letter

Five hours after the email was sent, I received a phone call from the administrative director who I sent this letter to. He apologized for my experiences and told me that he had shared my letter with their chief of clinical services who would be looking into it more and following up. He thanked me for detailing my complaint and asked me if there was anything that I wanted to add. He recognized that I had chosen to leave the practice, but hoped that I would consider them again in the future.

I don’t know what will come of my letter and if any changes will actually be made, but I’m proud of myself for sending it. The office needs to know what happened so it can protect its patients. I may not be the most assertive person, but I’m glad that this time I wasn’t silent. I’m glad that I spoke up for myself and made my complaints known. Hopefully my complaint can help bring positive changes to the practice and improve everyone’s experiences, even if it’s too late for me.

The Risk

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I looked down at my watch. 3:23. Twenty-three minutes past the time of my appointment to see my new endocrinologist. I had arrived at the appointment almost a half hour early, not wanting to be late to the new office. But now I had been sitting in that waiting room for close to an hour and I was starting to get antsy and frustrated.

I checked the time again. 3:27. My impatience had started to turn to anger. Part of the reason I had switched endos was to avoid excessive waits like this. I got up and went to the desk. “Hi, I’m just wondering how much longer you think the wait might be.” The woman made a phone call. “They’re about to call you back any minute.”
Sure enough I soon found myself seated in the exam room. The nurse took my blood pressure and my height and weight, but nothing else. I sat in the chair and waited. And waited. And waited.
When I first arrived at the appointment, I was excited. I was eager for a new doctor, for one that would see me as a person and a patient. Who would listen and help me. Who would take more than a couple minutes to really understand me. I had high hopes for this appointment. But as I sat in that chair, that hope was diminishing minute by minute. 3:47. I started ranting angrily in my head.
“This is so annoying and typical! I leave work early, drive 35 minutes to wait an hour to see the doctor! Not only that, no one checked my glucose, or tested my A1c, or took my meter or pump or CGM to download my numbers. What the heck is the doctor going to talk about then?! How is she going to make any meaningful recommendations?! Why am I even wasting my time here?! Now I’m going to have to find another endo and do this all again!”
I stood up, too fueled with anger to sit any longer. I paced the room as the time approached 3:56. The doctor came in. “I’m sorry to keep you waiting.” I shook her hand but didn’t reply. She should be sorry. My earlier excitement had turned to bitterness. I sat down, my arms crossed, already defensive. This isn’t how I wanted this visit to go.
But then the doctor started talking.
She started asking all the right questions. She asked about my history, about my numbers, about my obstacles. She asked about my habits, my patterns, my journey. She asked me what I wanted to work on. She asked me what my goals were. And she listened. She took notes, she analyzed, she discussed. She took my CGM and downloaded the numbers, pinpointing right away areas that we could work on, some today and some over time. As she filled out my medical record, she read her notes out loud. They were so thorough and detailed. She made sure that we talked about everything I wanted to and made sure we had a plan to follow up. When we were all done, she looked at me and said, “Welcome to this practice, we’ll take good care of you. Your goals are our goals and we’ll work together to meet them.”
It was everything I hoped the visit would be. She was everything I had hoped my doctor would be. It was night and day between this doctor and the one I’ve had the past 8 years. It even made that hour wait worth it. Besides the wait, I wasn’t thrilled about the fact that I have to go to separate lab for my A1c test or that she couldn’t download the information from my pump just my CGM. But regardless, I still consider the visit a great success.
It wasn’t easy to leave my other doctor and practice. It’s hard to leave comfort and familiarity behind. But sometimes we don’t know what better things await us if we never take the risk.

Oh crepe!

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When I was first diagnosed, I carried a little book around with me to look up the carbohydrates of everything I ate. Since I didn’t always have access to the packaging of the food, I would look up every food and add up all the carbs in my meal. Now, that same information is available right on your smartphone. However, after adding up the carbs for thousands of meals over the years, I’ve memorized the majority of the foods I eat and have gotten pretty good at estimating.Yes, there are times when I over or underestimate, but I generally feel pretty confident in my abilities.

In fact, one could say that I’ve gotten a little too confident and maybe even lazy when it comes to carb counting these days. And this attitude is dangerous. Because when I am significantly wrong in my counts, the results can be pretty catastrophic. The continued importance of being accurate in my carb counting was made abundantly clear to me last week over a meal of crepes.

I was excited to try a new crepe restaurant for dinner with a coworker. Although I knew what a crepe is, I greatly over estimated the number of carbs for the thin pancake like wrap. While a typical crepe is about 10 carbs, I had figured it was at least double, thinking of it as more of a tortilla.

Everything was fine for awhile and I figured that I had successfully calculated the meal. I drove home and decided that I was going to go for a run, never mind that I was still really full from dinner. After my second mile, I started to feel off. I figured it was just from running on such a full stomach. I headed home and showered. It wasn’t until after I finished my shower that I realized that the weird feeling was feeling more like a low blood sugar. I checked my blood sugar. 34!! Ohhh crepe!

I treated the low and eventually felt better, but the experience was definitely a reminder that even after all these years, it’s still important to look up foods that I’m not as familiar with. It’s easy to fall into old habits of guessing and being a little lazy, but I realize it’s definitely worth the extra time to look something up in the beginning than to deal with a low blood sugar later. Next crepe, I’ll be ready.

Oh the Irony

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I have this ritual. Almost every time that I go for a long grocery shopping trip, I treat myself to a cold bottle of diet A&W root beer on my way out. I don’t drink a ton of pop and root beer has always been one of my favorites. Having performed this ritual enough times, I’ve come to recognize the diet bottle just from the color of it. I was finishing up a particularly epic grocery shopping trip and grabbed the A&W from the cooler as I got in line to pay, confident that it was the right one.

Parched from my long shopping excursion, I got into my car and immediately cracked open the pop and starting chugging, relishing the cool and refreshing taste. With half the bottle gone, I glanced down at the bottle. Something was off. I didn’t see the “Diet” sign anywhere! Shit.

Two thoughts immediately crossed my mind. Well technically first I silently cursed myself. But then my first thought was “What a waste of calories!!” followed by, “Holy crap that’s a lot of sugar!” A bottle of regular A&W root beer is a whopping 80 carbs! And here I had just drank close to half.

I took out my insulin pump and immediately started figuring out how much insulin to give. It looked like I drank half, but the top half of the bottle is skinnier than the bottom half, so maybe its not actually 40 carbs. I decided to subtract some to account for bottle shape and gave myself some insulin.

Within 5 minutes Gigi (my CGM) was already buzzing, displaying the two upward arrows showing that my blood sugar was rising quickly. I cursed again. Maybe I should give a little more insulin. I could just picture my blood sugar rocketing to the 300’s. I was pissed. What a stupid, careless mistake. Really I was thinking that if I was going to have that many calories and sugar, I would have preferred ice cream or at least a root beer float!

I went about my afternoon and tried to put the incident behind me. That is until about an hour and a half later.

Something wasn’t right. Gigi was being quiet, but all of the sudden I did not feel well. I got out my glucose meter and tested my finger. 37. Ummm what?! The low caught me off guard, as I was sure that I had given the appropriate amount of insulin according to the label. I needed sugar, and fast.

The bottle that only an hour earlier I was cursing, was now my salvation.

Ohhh the irony.

A1c Accuracy

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“So how have you been?”

A seemingly innocent question asked by my endo as she sat down across from me. I never know quite how to answer this. I’ve been good. Really I have. My new job is going well, I’m enjoying living on my own in my new apartment, my weekends have been filled with fun events with my friends. I’ve been trying to get back into working out, I’ve been getting better at cooking and trying new healthy foods, things are good. But that’s not really what she wanted to know.

“I’ve been good.”

“How have your blood sugars been?”

Ah now we get to the real question.

“Have they been high, low, are you having any problems, do you notice any patterns?”

“Shouldn’t you know?” I thought, assuming that she had at least looked at my graphs and A1c (which in fact she hadn’t since they were still being downloaded).

“They’ve been high lately, higher than I want, but I haven’t really noticed any patterns.”

“What about lows?”

“Yea I have them after the highs, probably from over correcting. Lots of roller coasters.”

We talked a little and made some adjustments and she got ready to wrap up the appointment.

“I was just wondering, what’s my A1c?”

“Oh I hadn’t even looked yet. (Ummm what, why not?”) It’s actually pretty good, 6.9.”

“Seriously? Are you sure?? That doesn’t make sense.” My doctor turned the screen so I could see it on the computer. I looked at her perplexed. “I’m shocked, are you sure that’s right?” It’s not that I didn’t believe that it could happen, after all almost exactly a year ago I was at 6.7, but I know what my blood sugars looked like then and I knew how they have been the past couple months, and something just wasn’t adding up. But I was hoping that maybe I was wrong. Maybe I was just remembering the worst of the past few months and in general I was doing pretty well. “I want a re-check,” I joked.

“Yea I’m pretty surprised too, that doesn’t really make sense based on these graphs.”

I’m not going to lie, I kind of wanted my doctor to prove me wrong, to not agree with me. To point to some trend or something that showed that I wasn’t as off as I thought.

“We’ll have them test it again.”

In the 13 years that I’ve had diabetes and the over 50 A1c checks that I’ve had, I never really had a reason to doubt the accuracy of the test. But here I was, getting my first recheck. As I sat there waiting for the nurse to come back with the results I debated in my head whether it was better to be right or wrong in this situation. Right in that ordering another test was the correct decision, that the first result wasn’t accurate and that I know my numbers and my body. On the other hand, I was hoping that I was wrong. That I was doing better than I was giving myself credit for, that maybe my A1c was 6.9, a number I’ve been working to get back to.

The nurse walked in and I looked up expectantly.

“It’s 7.3.”

“Yea that makes more sense.”

Slightly disappointed that I wasn’t 6.9, I was still okay with that number. It’s been where I’ve been stuck at for the past 9 months so at least I wasn’t doing any worse. Okay, 7.3. it’s not my best, but it’s not my worst. I said the number over and over in my head…and then I let it go. I’m trying to use my numbers to guide me, but not get caught up in them. So instead, I thought about what I need to do different between now and my next appointment in 3 months. Rather than focus on the number itself, I thought about what I can do so that the next time I see that 6.9, I won’t doubt its accuracy.


Diabetes Blog Week- Day 6: The Diabetes Lens

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“Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

In many ways, diabetes has become a lens through which I see everything in life. Thus every picture becomes a diabetes-related picture. So for this post, I chose 4 pictures that at first glance don’t seem “d-related,” but as you’ll see, my diabetes is there in all of them.
Voted Best Tacos in My City
The newspaper of city where I live decided to have a poll to see what the best tacos in the city are. These are from the restaurant that won first place. Having never been before, my friends decided that we had to try them. I have to say, I definitely agree. But looking at this plate, I see more than the delicious food, I see a complicated equation of trying to figure out how many carbohydrates exactly I’m eating here and how much insulin I need to give.
Spring Is In The Air
On this particular day, my coworker and I decided to take a walk after lunch around the city. Since we’ve been having unusually cold weather lately, we were excited to see that the flowers were now in bloom and stopped to take a picture. My coworker walked out of the office for our walk carrying nothing besides her phone. I on the other hand knew that I had to be prepared while away from the office. As I pulled my phone out to take this picture, I reached into a bag that also had 2 packets of fruit snacks, my glucose meter, and a little money just in case. The thing is, I can never walk out of the office empty handed because I never know when I might drop low.
The New Dress
Wedding season is upon us and I’ve been shopping for some new dresses to wear. With any dress, I look to make sure that I like the style, the cut, the fit, the color, and the material. As I try on each dress I ask myself, will it match the occasion? Is it flattering? Will I get good use out of it? These are the normal considerations. But with every dress or outfit that I try on, I also have to consider my diabetes and specifically, where my pump will go. Does it have pockets? Will my pump show if I strap it around my leg or wear it on my hip? How easily will I be able to access it? My diabetes can influence what I end up buying and wearing.
The Bike Ride
 
Within the last year, I’ve gotten pretty into bike riding. My mom and I would go for beautiful, long rides in the summer together. I love the exercise, the scenery, and this quality time that we spend together. I look at this picture and I see the beautiful lake, my awesome jersey with the Detroit cityscape, and my bike. But what you don’t see are the 2 packs of fruit snacks and granola bar stashed in the pockets on the back of my jersey. You don’t see my CGM and more emergency sugar in the red pack attached to my bike along with my phone, ID, and insurance card in case of a real emergency. Having diabetes means always having to be prepared, especially when you’re out exercising.

Diabetes Blog Week Day 4- Mantras

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“Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost?”

I have two mantras, two sayings that get me through the hardest days. I share them both with you, perhaps one will speak to you and help the way it’s been able to help me.

1. Tomorrow is a new day.

I get frustrated a lot by my diabetes, and I imagine that I’m not alone. I make mistakes, I see numbers that I don’t want to be seeing, I deal with feelings that I don’t want to be dealing with. It’s easy to get caught up in the numbers and emotions each day. It’s easy to look at a CGM graph that looks more like a roller coaster than a flat line and feel defeated. To feel hopeless and helpless. But you can’t. Tomorrow is a new day. Tomorrow you can do better. Tomorrow you can try harder. Tomorrow you don’t have to make the same mistakes that you made today. Tomorrow’s numbers will be better, you’ll see. Tomorrow you will feel better. You won’t have those icky lows or those gross highs. You’ll look at your CGM and smile, not frown and shake your head. Tomorrow is a new day. And if it’s not better? Guess what, there’s another new day after that.

2. You are not defined by a number. 

That blood sugar number that you see that you don’t like, it doesn’t define you. It doesn’t show what kind of person you are, how much you care about your health and taking care of yourself, how much you care about others. That number doesn’t know how much you tried to keep it in range. That A1c number that’s higher than you want, it doesn’t tell the whole story. It doesn’t mean you don’t care, that you didn’t try, that you don’t want to do better. You are not defined by a number. Numbers are there to help you, to keep you on track and tell you what you need to do. They are information, data collected to help you be healthier and live better. They aren’t there to label you, to judge you, to condemn you. Good or bad, you are not defined by a number. No number can capture the effort you put into caring for your health: the worry, guilt, frustrations, sadness, preparation, vigilance, triumphs, determination, resilience, and all the blood, sweat and tears.

You are not defined by a number. 

You are so much more.

 

Diabetes Blog Week- Day 3 What Brings Me Down

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“May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?”

For most things in my life, my level of effort has been indicative of the outcome. That is, when I try my best and put a lot of hard work in, I can usually expect favorable results. Of course this is not always true, but it has been true in many cases. For instance, my grades throughout school, events that I put a lot of effort into planning, projects at work, you get the idea. And if the results are not what I had hoped for, it’s usually not unexpected. I usually know that maybe I didn’t study enough, or put enough thought into something, or cut corners. So if I wasn’t completely satisfied with the results, I usually knew what was to blame.

One of the most difficult aspects of living with diabetes for me is the frustration that comes with trying to keep my blood sugars under control. There have been many times where I think that I’ve done everything “right” only to be disappointed. I counted my carbs (yes, I looked them up even), I checked my blood sugar, I gave my insulin before I ate, and I checked my blood sugar 2 hours later. But despite all of this, sometimes I still end up with a high blood sugar or a low blood sugar and I have no idea why.

It’s beyond frustrating to think you’re doing everything you’re suppose to but still don’t get the result that you want. There are a million reasons why that blood sugar could be off. Maybe my infusion set isn’t working, maybe the insulin isn’t good anymore, maybe the food was actually more or less carbs than I thought, maybe the low is a result of exercise I did hours earlier, maybe I’m getting sick, the list can go on and on.

So many times I’ll check my blood sugar and just be perplexed. The number is unexpected and not what I want to be seeing. 345?! Ugh!! Why?! I’ll shake my head, I’ll audibly sigh, I’ll mutter obscenities. As much as I try to dissociate emotions from these numbers, it’s not always possible. High numbers can put me in a bad mood. They make me angry and frustrated and can often feel like a personal failure.

I can always do better. I can be stricter, more vigilant, more attentive. I know that. Most of my high blood sugars I can point to something that I did or did not do that is most likely the cause. But those high or low blood sugar numbers that are unexpected are the ones that really get to me. Those are the one’s that I hate dealing with, but you know what? You just deal. You accept that once in awhile you might not have anything to blame, sometimes you don’t have an answer, things are out of your control. But dwelling on it isn’t going to raise that low blood sugar or lower that high one. So you do what you have to do, and you move on. Because pretty soon, there will be another number, and hopefully that one won’t be unexpected.

 

Integration

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“What is it?”

The devices gathered around, peering inquisitively at the band that lay in the middle of the circle.

“I don’t know,” B.G. Meter replied, inching closer.

“Don’t touch it! We don’t know what it does! It might be dangerous!”

Meter gently tapped on the black surface and a series of bright white circles bounced across a mini screen.

“Look it lights up!” Gigi exclaimed.

“Why hello there,” the band stretched out, springing to life. My name is Fitbit Flex. And who are all of you?”

“Oh um, hi. My name is B.G. Meter and these are my friends Insul N. Pump and Gigi CGM. We didn’t mean to bother you, but we noticed that the Human started wearing you and we were curious what you were doing.”

“Oh how lovely! It’s always a pleasure to meet new devices. I’m a tracker. When the Human puts me on her wrist I can tell her how many steps she takes each day, how many calories she’s burned and even how well she slept!”

“Oh wow. You must take a lot of blood to figure out all that information. Where is your lancet hidden? Not that I was checking you out or anything, but you have a rather sleek design.”

“You’re making me blush, Meter. I actually don’t need to take any blood to figure out those numbers.”

“Whattt!? No blood? But you’re still under the Human’s skin right, like Gigi or Insul?”

“Nope. I prefer to stay away from bodily fluids and functions.”

“Crazy! How come you can’t do that, Gigi? So how does the Human know how many steps she’s taken? I noticed you don’t have a very big screen.”

“Yes, bigger is not always better, Insul. When the human lightly taps on me, my dots show what percentage of her goal she has completed. One dot is 20%, two is 40%, etc. But more importantly, if the Human takes out her phone and opens my app, she can see all these numbers and graphs right on her phone.”

“Wait, let me get this straight. You send your information right to the Phone, the thing that the Human always has with her?! And she doesn’t have to type anything in? We’ve been trying to get our numbers on the Phone for ages, but it will never take it from us!”

“Well that seems rather silly to me. The app also lets the Human keep track of other things too like her weight, calories eaten, and how much water she drinks. She can even cheer on or taunt her friends to reach their goals.”

“How can we get our numbers on there?? I know that the Human can manually type in that kind of information, but she’s kind of lazy. It would be perfect if her blood sugars and units of insulin delivered was wireless sent and synced right in your app. With your information about steps and activity and food logging and our information about glucose numbers and insulin, we could really help the Human understand the big picture!”

“You know what, Gigi, that’s a great idea. Hopefully someone smart is working on figuring that out right now.”

I sure hope so.

Superpowers and Kryptonite

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I tend to not remember a ton from the time when I was diagnosed, but I clearly remember one conversation with a doctor that I had when I was 12 and probably type 1 diabetic for only a couple weeks.  I remember the doctor telling me that I would get to know my body so well, better than most people without diabetes, and know roughly my blood sugar just by the way I feel. It was such a foreign concept to me at the time. At that age, I wasn’t paying attention to my body for the most part, maybe the way it looked since I was at the beginning of puberty, but not how I was feeling. I was skeptical, but I found the concept intriguing. “It’s kind of like I have a superpower!” I thought. “I’ll be able to feel my blood sugar. You ordinary humans can’t do that!”

The doctor was absolutely right. As with many health conditions, you become hyper attuned and aware of changes within your body. Sure, I can feel a low blood sugar, but more specifically I can often feel the difference between a 90, 70, and a 50. Between 120 and 220 and even 320. I can feel the low coming sometimes even before it’s reflected in the number on my meter. With my CGM, these feelings are often confirmed by the device, but the discrepancies between how I feel and what the CGM says are often in agreement with how my body feels.

DC Comics, The Adventures of Superman

I’ve been without my CGM, Gigi, for close to a month now. It wasn’t a purposeful decision, but when my transmitter battery died, it’s been taking longer than expected to get a new one sent. So I’ve gone back to using my superpower more, for better or worse. But during these past few weeks, I’ve learned that my power is not perfect and indestructible. Rather, my superpower has a kryptonite. These dangerous forces weaken my power, they confuse me, and they ultimately make me unable to accurately predict what my blood sugars are. Perhaps T1Ds have different forms of kryptonite, different interfering forces, but below are the 5 that I have had to battle against:

1. Adrenaline. I remember before my big interviews or doing something crazy like going bungy jumping or even before a first date, constantly testing my blood sugar because the adrenaline rush that I felt mimicked the feelings of a low. I’m shaking, my heart is racing, am I excited or am I low?!

2. Anxiety. Similar to the rush of adrenaline, my feelings of anxiety often get mistaken for a low. Context is obviously important, but in the middle of the night when I can’t sleep and feel shaky and unsettled, there are times when it’s been nerves rather than a low.

3. Alcohol. I was warned about this one even years before I could legally drink. “Alcohol is dangerous,” my doctors would says, “You can’t always feel your lows when you drink.” While this hasn’t been too much of an issue for me, I do notice that I don’t feel my lows until they are much lower, so in the 50s as opposed to catching them in the 70s.

4. Other medications. I hate using my asthma inhaler even when I need it. After using it, I always get this shaky feeling and my heart races. But usually the desire to breathe normally wins out over potentially feeling low.

5. Nitrous oxide (laughing gas). When I got my wisdom teeth pulled out, my dentist turned on the gas and in less than a minute, I was telling him to turn it off. The feeling reminded me so much of being low that instead of the serene feeling that others get, it made me feel anxious, uneasy, and just uncomfortable.

Unfortunately, a few of my kryptonites are unavoidable and thus my superpowers are always in jeopardy. But part of being so vigilant and aware is also knowing when these weakening forces may be at work, and then taking extra precautions. This may mean more finger tests or checking my CGM more often. But in the end, I may not have the world to protect with my power, but I will do what it takes to protect the one life that is mine for the saving.