Diabetes Blog Week Day 1: Share and Don’t Share

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 Today’s prompt: “Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?”

You asked me how things are going.

I said pretty good.

I didn’t know what else to say. 

Things aren’t going “bad”. I generally feel healthy. I don’t have any complications. I have had some disturbing lows and some uncomfortable highs. I felt nauseous, and dizzy, and disoriented, shaky, light headed, and weak, but I don’t feel that way now. I treated those highs and lows and I moved on with my life. 

Things aren’t going “great”. I’m frustrated. I’m confused. I’ve had enough. Sometimes I see my blood sugar go high and I don’t know why. I thought I did everything right, but yet there it goes, rising above 250, 300, 350. Ugh. Other times I kick myself because I forgot. I honestly got caught up in life and forgot to bolus until much later. That’s not an excuse, I know. But doc, it happens. I’m not perfect, but I’m trying! I know sometimes it doesn’t look that way from my numbers, but every day I try. 

You asked me about trends. Am I usually high around this time? Am I usually low?

Umm? Maybe?? You’re asking me to remember over 90 days of blood sugars, when I can barely remember yesterday’s. Yes. Sometimes I run high after dinner and before bed, but not always. Yes. I’ve been waking up low in the morning, but not always. It makes me sound like I don’t pay attention to my numbers, like I don’t care. That I don’t think about them. It’s not like that. My numbers are always on my mind.

I see my A1c. I know what you must be thinking. It is higher than you want, it’s higher than I want. But I do care. I care more than you’ll probably ever know. 

I’m not sure if you believe me, I think you want to. Yet, appointment after appointment we find ourselves in this same situation. Last appointment was great, a .8 drop in my A1c. Finally made it to the low 7’s. I’m not sure the next one will be so great. Don’t give up on me.

I don’t think my A1c is representative of how I view my diabetes. I don’t think it shows how much I do try and how much I do care. And all I hope is that you realize that too. Don’t use that number to label me in your mind. Yes, you can make generalizations about my self-management based on that number. But while my A1c may say a lot, it doesn’t say everything. 



Daily Awesome

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Recently, I was writing some content for a website about strategies for dealing with stress. One of the suggestions was, “appreciate the small things in life that make you happy.”

Now, I’m not an overly stressed person (right now at least). I’m actually fortunate to be at a nice equilibrium. I am busy, but I am not too busy. I am stressed, but it is more eustress than distress. However, as I was writing this strategy for coping with stress, I realized that I don’t stop and appreciate the small instances in my life that bring me joy. I have gotten into such an automatic routine, that I don’t often notice these occurrences.

There’s a blog called 1000 Awesome Things that each day talks about a small joy of everyday life. For example, crossing off the last item on a to-do list, eating a taco without anything falling out, peeling a hard boiled egg and getting a big piece of shell all at once, lending a pen to someone and having them return it, squeezing through a door as it’s shutting without touching it, the list goes on (and on and on). I highly encourage everyone to spend a couple minutes scrolling through the list. It will truly make you appreciate the small things.

Anyways, in preparation of this blog post, I decided that I would make a conscious effort to notice the small things in my life for the past couple days that made me happy. Really taking the time to not only recognize these moments, but relish them. So here it is:

  • The first sip of coffe on my morning commute. Usually at about 7:40 in the morning, in my car, driving on the express way. Nothing like the first taste of that warm deliciousness.
  • Finding an opening in busy traffic without having to sit and wait for the light to change. Some days I sit and wait forever for traffic to stop, but on this lucky day, I got ready to turn and traffic was perfectly clear.
  • Pushing the elevator button and it’s right there waiting for you.
  • That feeling when you finish a difficult workout and you are exhausted and every muscle in your body is fatigued, but you’re done. And you did it.
  • Testing my blood sugar and seeing that perfect number.
  • Coming home and having an excited puppy waiting for me. She is always so happy to see me, rushing to the gate with her tail wagging, jumping up and down. It doesn’t matter if it has been 8 minutes or 8 hours.
  • Driving in the sunshine with the windows down, sunroof open. 
  • When that song that you really wanted to hear comes on the radio.
    Seeing this straight line in range,
    no matter at what time during the day
  • Thinking that I was all out of my morning oatmeal packets, but then finding one hidden in the back of the cupboard.
  • Not showing a blood sugar spike on my CGM outside of my normal range after a complicated meal.
  • Pulling into a metered parking spot and still having some time left on the meter.
  • That moment when you take off the high heels you’ve been wearing all day, no matter how comfortable they seemed this morning.
  • That sense of accomplishment after climbing 5 flights of stairs instead of taking the elevator.
  • Babies. And puppies. Pictures or the real thing.

I’m sure I could think of more examples, but I truly found this to be a good exercise. I think a lot of times we have an easier time remembering the negative experiences we had, big and small: the guy that cut you off in his car, the rude customer service person, spilling your coffee. These events linger, even though we don’t want them to. What about the guy that waited a little longer to hold the elevator or the door open for you? The person at the grocery store that let you go before them when you had only a few items? Finding that extra $5 that you forgot was in your pants pocket? Those are the kind of events that you want to stay with you. The small, but positive moments.

 When I took the time to appreciate these small moments of happiness, I noticed that it put me in a better mood. It made me feel more content, even for just a little while. 
So take a few moments to appreciate your small moments of happiness. I think you’ll be glad that you did.

The Not So Silent Diabetes

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Sometimes I like to play this game where I put myself in other people’s shoes and try to guess what they must be thinking.

Let me give you some examples.

I recently started an internship where I’m working in a cubicle. I’ve met the people on the other side of my cube walls, but they don’t really know more than my name since they are in a different department from me. They don’t know about my diabetes. Anyways, the office that I work in is pretty quiet all day. I can hear the mouse clicks from 2 or 3 cubes down. Sometimes I like to think about what the guy on the other side of my cube wall must be thinking when he hears all this:

Bzzzzz Bzzzz Bzzzzz. Drawer opening and closing. Zipp. Zipp. Click. Beeeeeep. Zipp. Zipp. Beep. Beep. Beep. Beep. Crinkle crinkle. Drawer again.

First my CGM goes off, buzzing in my drawer. Sometimes I open and get it out, and then end up testing my blood sugar with my meter. The meter beeps when the reading appears and then my pump beeps when the number is sent to it. Then I either give insulin through my pump (more beeps), or I treat my low with some fruit snacks (thus the crinkling).

So what is the guy on the other side of the wall (or anyone else) thinking when he hears all these noises and beeps??

He probably thinks that I’m sitting on my phone getting all kinds of messages.

Maybe he thinks I’m playing some kind of game that beeps a lot.

Maybe it’s my pager going off because I’m needed down in surgery. Or the President is paging. It’s my pilot paging to tell me that my personal helicopter is ready and waiting to take off.

That I have a mini robot in my desk drawer. He beeps when he feels neglected. He feels that way a lot apparently.

Again, I thought about this when I was in the bathroom changing my infusion set. I was going to run out of insulin before the end of the day so I took all my supplies with me to change it in the bathroom. There are only two stalls in the bathroom so I took the handicap stall that had a sink and counter in it. I heard the door open and close and someone enter the stall next to me. I tend to think that bathrooms can be a little awkward as it is, so I try to get in and out as quickly as I can. Except this time I knew changing my set would take a little longer.

Ripppp. Motor sounds. Beep Beep Beep. Clink Clink. Beep beep beep beep beep beep beep. Click. Beep Beep Beep Beep.

Opening the supplies isn’t very quiet as I rip open the air-tight packaging. Next I rewind the pump, and you can hear the motor working. I fill the syringe with insulin, clinking the glass to get the bubbles out. Then I put the new cartridge of insulin in and prime it with a series of beeps. When it’s all set, it’s inserted with a loud click followed by some more beeps to further prime the insulin. It’s not a quiet process, and not the sounds one usually hears in a bathroom. So what is this woman thinking is going on?

Again, maybe she thinks I escaped to the bathroom to use my phone.

Maybe I’m playing some kind of game.

She might think it’s another kind of medical device or maybe she knows it’s an insulin pump.

That I’m building a time machine in the bathroom.

That I’ve created an extraterrestrial connection in the office bathroom and we are communicating through a series of beeps.

Honestly, I have no idea. The woman left the bathroom before I was finished and the guy on the other side of my cube wall has yet to inquire about all the noise. I never really realized how loud diabetes can be until sitting in a silent office all day.

I may not know what these people think is actually going on, but I’ve enjoyed trying to figure it out.

A mini robot in my desk drawer would be pretty awesome though.

Under an Elephant

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My CGM spent the night under an elephant.

Well an elephant pillow. Gigi (my Dexcom CGM) has been getting on my nerves lately. It keeps telling me that I am low when I’m not. I recently switched the sensor from my arm to another new location (my lower backish area). Sometimes it takes a couple days for it to calibrate, but I wasn’t sure if the inaccurate readings also had to do with the new location. Either way, I felt like the past few days all I’ve been hearing is Gigi vibrating in my purse, in my desk drawer at work, and on my nightstand when I’m trying to sleep. It’s one thing when its telling me that I’m low or high, but when it isn’t being accurate, it’s just annoying. The way it’s designed, if you don’t acknowledge the warning (high, low) by pressing a key, it will keep buzzing at shorter intervals until you press a button. Sometimes I talk to Gigi in my head. “I heard you the first time Gigi, let me just finish what I’m doing.” It doesn’t listen. It was as if it  kept yelling at me, “Pay attention to me!”, “I’m here!”.  Actually my CGM is a lot like my puppy, Mayzie, always wanting my attention. Mayzie doesn’t care what I’m working on, it’s all about her. When she wants to play, you better play with her. Gigi is like that too. It doesn’t care if you are at work, at the movies, or trying to sleep, when it has something to tell you, it’s going to tell you!

Last night I had had enough. I just wanted one night of undisrupted sleep. My CGM doesn’t go off every night, but it does a lot. I figured that it would be okay for one night to not leave Gigi on my nightstand where I could hear it. I put it on the floor next to my bed and put my elephant pillow over it to muffle the sound. I had a very nice sleep without being woken up by Gigi.

The next morning I was in my car driving to work. I could tell that I was starting to feel low. “That’s odd,” I thought, “Gigi hasn’t made any noise”. In my head I began to chide Gigi. “Of course when I’m not low you vibrate, but when I’m actually low, you don’t go off.” I felt around my purse for my CGM to see what number it thought I was. That’s when I realized that Gigi was still in my room, under my elephant.

You know how they say that sometimes you don’t realize how great something is until it’s taken away from you? Well I realize that now. All day I wished that Gigi was with me, I didn’t even care that she would be vibrating. I dropped low two times, one was so low that my tongue and lips started to tingle. Gigi would have caught those! At another point I checked my blood sugar and it said 150. Well is that 150 on it’s way up or on it’s way down?! Without Gigi I had no idea! I missed Gigi. I realized how much I had taken her for granted, how much I had overlooked the incredibly important service it provides me because I had gotten caught up with the inconveniences.

I love my puppy and my CGM. Despite how annoying my CGM and puppy can be (and yes she can be annoying, especially when she thinks my arm is a chew toy), now that they are in my life, I can’t imagine it without them.

Good Mayzie
Bad Mayzie

Practice What You Preach

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This past week I had my yearly exam with my obgyn. I will spare you all the details, but during our small talk, my doctor asked what I do and what I studied. I proceeded to tell her about my public health background and interest in health communication.

The conversation then turned to whether I wanted to go ahead with the standard STD screenings. She started to explain to me that she recommends everyone get screened, even if you are in a monogamous relationship, aren’t currently sexually active, and practice safe sex. She paused for a second and then said to me, “I guess you know all of this already. You are probably the one telling other people. Well at least then you can practice what you preach.”

She’s right. A lot of the health communication work I’ve done has been writing health content for adolescents and women ages 18-35. I’ve written about the importance of getting screened for STDs multiple times, in fact, I wrote about it this week for a website I’m currently helping to work on. I’m one person that my doctor does not need to convince.

She was also right about another thing. Even though there is a separation between my personal and professional life, I do want to practice what I preach. Not just with screenings, but with other health topics as well.

As a public health professional, I feel that I live a healthy life that is in line with current recommendations. I’m in no way saying that my behavior is perfect! I don’t regularly floss, I spend too much time in the sun (even with sunscreen), I don’t drink enough water, the list goes on. However when I write about general healthy habits, I don’t feel a tension between what I am recommending people do and what I currently do. I’m not implying that all people in the public health field (or any field really) should share this opinion, but it’s something that is important to me personally.

Enter my diabetes.

Being in the public health field, I’ve struggled with the fact that for most of my life with diabetes, my A1c has been higher than I want it. How can I advise other people on how to change their health behaviors when (until recently) I can’t get my own diabetes control where I want it?! I studied health behavior change, my job is to help people make positive changes in their lives and adopt healthy behaviors. Yet, I’m not able to practice what I preach, not with this. I worried about my credibility.

I’ve learned the theories. The Health Belief Model, the Theory of Planned Behavior/Reasoned Action, Social Cognitive Theory, The Transtheoretical Model, at some point I’ve applied them all to my own behavior. I know all about self-efficacy, motivation and confidence, outcome expectancies,  perceived severity, susceptibility, barriers and benefits, social norms, and cues to action. But despite all of this knowledge, my A1c was too high.

I’ve spent a lot of time thinking about this. Many nights tossing and turning were spent wondering if I truly am in the right field. Here’s the conclusion I’ve come to.

My A1c isn’t perfect, but it’s gotten better every appointment. I know the theories, but I also know that change is damn hard! Even with the best intentions, it takes time (years!), it takes effort (every single day!), and there will be setbacks. I know what it’s like to struggle towards a health goal. Maybe having an A1c that is a little higher than where I want it hurts my credibility, but honestly, I think it enhances it. When I’m at work writing, “Change is hard and takes time” I know first hand. I may not be at my ideal A1c but I’m getting closer, and that counts for something. I can bridge that gap between academia and real life, between what the health messages say and what happens when you try to incorporate that advice into a life managing a chronic condition. Most importantly, I can bring all this real life experience to my professional career.

My personal struggle does not mean that my professional advice is any less credible. To me at least, it means the opposite.

Dear GiGi, From Management

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Dear Dexcom G4 Platinum (or Gigi for short),
I want to extend a personal welcome to you as you take up your new residency at Arm for the next 10-14 days. I know that the move was slightly difficult, especially one handed, so I’m glad to see that you are settling in nicely. This must be a big adjustment for you, being somewhere completely new, but I think you’ll enjoy the change of scenery while the restoration occurs at your previous location at Abdomen. I’m hoping that you will continue to stick around.

Gigi, if we’re being completely honest with one another, I was a little hesitant to allow you to move to your current location. It’s nothing personal, it’s just that the last occupant was a bit of a pain. I’m hoping that you and I won’t have to deal with similar issues. As you may have noticed, your new location is a bit more public. I’d appreciate it if you could lie low, but I realize that unfortunately, that’s not really part of your design. 
I hope that you are comfortable though, Gigi. The area you are inhabiting is a little too cushiony for my liking, but perfect conditions for you. I know how you enjoy having that little extra to pinch. Your location is under continuous renovations; I’m looking for a sleeker, stronger look, but it’s a work in progress. 
There is another reason why I’m writing to you though, besides to welcome you. I’ve actually had a few complaints from some guests about you being extra “grabby” and “clingy”. This particular complaint was a bit concerning from Purse Strap: 
“I was minding my own business, attempting to disembark from Shoulder when Gigi aggressively grabbed me and I got hooked around her, causing me to yank her and eliciting a yelp from the Human. I was both startled and deeply dismayed.” 
Similar complaints were filed from Shirt, Bra Strap and Sweater. I’m asking that you please stop getting caught up with our guests. If you can refrain from this activity, I believe that you will have a smooth and enjoyable stay at Arm.
Thank you for your understanding. I appreciate your service and trust that we will not have any more problems in the future.
Sincerely,
Management 


If My Scars Could Talk

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I seem to scar very easily. Cuts and scrapes that would heal pretty quickly on most people either take me 4 times as long to heal from, or end up leaving a scar. I honestly don’t know if this is diabetes related, if anyone reading happens to know, please let me know.

What this does mean though, is that I have a collection of scars from over the years, a few with some pretty great stories attached. I have this visual of me sitting at the equivalent of a biker bar, recounting the stories of my “battle scars”, feeling pretty badass. 

See this one here on my knee, I got this one when I went skydiving. Man, it was awesome, what a rush!  Nothing like falling through the air at 14,000 feet. Anyways, I didn’t quite nail the landing and I ended up with this scar right here.

This one on my arm, oh this one is a great story. It was my 18th birthday, my boyfriend at the time surprised me with a bike trip and picnic lunch. We were 10 minutes into our bike ride when I completely wiped out going down a hill. I cracked my helmet, hit my chin, road rash on both my legs, the palm of my hand, and the inside of my arm. We called an ambulance and get this, since I turned 18 that day, I could decide if I wanted to take the ambulance or not. I decided it wasn’t really necessary once they verified that I didn’t have a concussion. Everything healed pretty well except for my arm, which now resembles something between a birthmark and a burn. Not quite the type of birthday surprise we had in mind.

And this scar on my foot, this one I got at a club in Chicago. My friends and I were out dancing and this drunk girl wasn’t watching where she was going and her stiletto impaled the top of my foot. Holy crap that hurt! I could barely hobble off the dance floor, and the girl was completely oblivious to what she had just done. When the bruises faded, I was left with this nice scar.

(I’m realizing that these stories are doing more to highlight my clumsiness than anything else)
With all these scars, it really shouldn’t have been a surprise that I’m starting to have little scars on my stomach from my infusion set and/or CGM sensor. I never really noticed them before in the 12 years that I’ve had my pump, so I think my CGM sensor is the cause. The scars are small, some darker than others and some bigger than others, but they are there and honestly, I wish they weren’t. I know I’m being vain. However, if the scattering of scars that I see on my stomach is the result of wearing my sensor for 8 months, I wonder what it will look like in 5 years, in 10 years, in 20 years…
I think it’s time that I take my own advice. I have a few options:
1. I can face my fears. If I don’t want scars on my stomach, I can begin to rotate my sensor to other parts of my body. I’ve already moved my infusion set to a new site, so I’m sure I would get used to the sensor being somewhere different, like on my arm. It’s just working up the courage to try somewhere new.
2. I can work on not being self-conscious. Just like the other scars on my body, those small scars also tell a story. They tell a story of living with diabetes for close to 13 years. They are nothing to hide or be embarrassed about, they are part of who I am and I should work on accepting that fact.
3. I can focus on the positives. I have little scars, but luckily I don’t have lipohypertrophy or scar tissue that can affect insulin absorption. Lipohypertrophy is a medical term for a lump under the skin from an accumulation of fat at the site of many insulin injections. These are both possible side effects of insulin injections. I can choose to focus on the fact that right now, I just have little scars.

4. Other? I can try to put some mederma or something on the scars to see if they will fade or wait and see if they naturally fade with time (although in the meantime I’m just making more scars). Or I can take a break from wearing my CGM for awhile (but I’m starting to feel blind without it and really rather not).  

So which one will it be? What am I going to do? 
I don’t know yet.

My Sister’s Letter

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I’m so lucky to have such an amazing sister. She is younger by only 2 and a half years and we have always been close. My sister is my best friend and has always been supportive and there for me. When I was diagnosed with diabetes at age 12, it clearly had an effect on everyone in my family, including my sister. She was 9 years old at the time.

Below is an excerpt from a letter written to her 4th grade teacher. It was written less than 1 month after I was diagnosed. Reading it for the first time, I just want to give her a huge hug, both the 9 year old her and the 22 year old. With this letter, I see my diagnosis through her young eyes, as well as the emotions that she was experiencing.

July 10, 2000

Dear Mrs. D,

Hi, how’s your summer going? Mine is fine except for one thing but I won’t get into that now.

… (I’ll skip the part about what my sister did that summer)

The thing that was a shock to my family is that my sister got diabetes. We found out when she went to her yearly check-up. She had to spend three days in the hospital getting taught her and my parents how to deal with diabetes. She needs to take 2 shots a day but she doesn’t mind them. She also has to watch what she eats, never skip meals, and take a snack before every meal. She doesn’t like that she can’t eat candy, cake, ice cream, cookies, marshmallows, or cotton candy, but they do make sugar free ice cream and candy. She can also have a little taste of anything else with sugar in it. But the part she hates the most is that she has to check her blood sugar 4 times a day and to do that she needs to poke herself. She had always hated it when she goes to the doctor and they do it there and now she has to do it 4 times everyday. I hate hearing her crying and screaming and saying that she can’t do it when it comes time to poke herself. Sometimes it takes her a long time and other times it doesn’t. I poked myself to know what it feels like and I didn’t mind it a bit. She gets a lot of bruises on her fingers by doing this and then she always can’t find a finger because they all have bruises on them. I am really mad and sad that this happened and it’s hard to describe my feelings about this on paper. So all I can say is I really hate that this happened and I think it’s totally unfair that Reva and other people who are diabetic have to go through this but it isn’t the worst thing to have happen. I really wish they would find a treatment that will make it go away or find a way to make it easier for people with diabetes like my sister.

This letter makes me want to laugh and cry. I smile when she talks about how she tried poking her finger and “didn’t mind it a bit” because that description fits her so perfectly. My sister, about to graduate college in less than a month, is hoping to enter the medical profession. Blood and needles and all that doesn’t seem to phase her, she is so intrigued by the workings of the human body. I on the other hand, get extremely squeamish. It made me sad to read how she hated hearing me cry and scream, I wish she never had to go through that with me. Her letter reminded me how truly difficult it was in the beginning, especially the first few months. I’ve talked about how it used to take me an hour to poke my finger, but as my sister’s letter describes, it was also accompanied by a lot of crying and screaming. I’ve probably tried to gloss over those memories over the years, but this letter brings them back. Finally, I love that my sister feels not only for me, but for all diabetics and hopes for a cure.

Any kind of illness, tragedy, or life-altering event has a ripple effect. It impacts those that are close to you besides just yourself. It’s so important to be there for one another and to recognize that even if it feels like it sometimes, you are not alone. It was easy for me to be selfish; it’s my disease, my life, my struggles, but this letter reminds me that my family had their own struggles from my diagnosis. My sister has always been by my side, through good and bad even when what was happening to me was affecting her as well. I am so thankful for her and even if I didn’t express it back then, I hope she realizes it now.

I love you so much Banana!

Self-Conscious

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I’m not ashamed of my diabetes. Ask me anything about my diabetes, I’ll tell you. Oh you want to see what the infusion set or CGM sensor looks like? Here, I’ll show you. You want to watch me test my blood sugar or change my set? Sure, by all means.

I am open about my diabetes, but yet I have my moments. Maybe ashamed is too strong of a word, maybe it’s more that I become self-conscious.

It was a few months ago. I was a tourist in our country’s capital, spending the afternoon sight seeing on my own. All of the sudden I could feel my blood sugar dropping, and not the gentle kind of dropping. I took a pack of fruit snacks out from my coat pocket, ripped the packet opened, and poured the entire contents into my mouth at once. Yes, eating them one or two at a time may have been better etiquette, but sometimes etiquette goes out the window when it comes to diabetes. As I stood there masticating like a cow, I became aware of a man that was walking toward me, having witnessed the whole ordeal. He gave me a kind of confused look as he walked by. Part of me wanted to chase after him and tell him, “I don’t normally eat like that, I have diabetes and my blood sugar was low and I was feeling impatient!” but really I knew it didn’t matter, plus I was still working my way through the stickiness of the fruit snacks. It wasn’t just about that man though, it’s all the “inappropriate” times that I rip open that packet of fruit snacks and pour them into my mouth. I know it doesn’t matter what other people think, but sometimes I can’t help but wonder. What were those women thinking when I was eating the fruit snacks in the museum when it clearly said no food or drinks? What about the people at the gym when I have to stop halfway through my workout to eat a packet? In the waiting room of the doctor’s office? I mean they probably just think I reallllly like my fruit snacks, but I do wonder.

It was a few weeks ago. I was among a small group of people, gathered in someone’s home, listening to a community leader speak about his experiences over the years. Cheese and crackers, fruit, and cookies were served. I was seated next to this gentleman, everyone’s attention aimed just to my left. That’s when I realized I had forgotten to bolus for the fruit and couple crackers I had eaten. However, I was having one of those moments where I just wanted to blend in, I didn’t want to draw attention to myself as I knew pulling my pump out of my pocket and beeping away would. So I didn’t bolus then, I waited until our talk was over and everyone had gotten up. I suffered for my decision, my CGM showing my blood sugar in the 200’s and rising. I shouldn’t have cared, no one else would have. Or I should have excused myself and gone to the bathroom to give myself insulin. But I didn’t, and my blood sugars reflected that moment of self-consciousness.

It was a few days ago. I was shopping for some dress pants for my new job. I found a nice pair, but when I tried them on, I realized that the pockets weren’t real, basically just slits not big enough to hold my pump. “You can always just clip it to the outside of your pants.” I knew that, but I didn’t want to. I didn’t want it to show.

I’m not ashamed of my diabetes, but I realize I clearly still have moments of self-consciousness. I’m comforted by the fact that I’m sure everyone has their moments, whether it’s diabetes related or not. But what I have and what I do to take care of it should not be a source of self-doubt or make me feel self-conscious. What I do is necessary for my health and for my life. I can’t let moments like these prevent me from taking care of myself. While I recognize that I’ve had less of these moments as I’ve gotten older, I know it’s something I still need to work on.

Deserving Better

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Provider-patient interaction and communication is very important. It doesn’t matter how old the patient is, he or she deserves to be treated with respect, dignity, and compassion. Thinking about all my appointments over the years with my various endocrinologist, I keep coming back to one particular appointment. I was probably around 13 or 14. I was having a lot of trouble with my blood sugars, my A1c was way higher than I want to admit, and I was struggling. It wasn’t that I didn’t care, I didn’t want the high blood sugars, but it was hard for me to remember to test and give insulin and my numbers reflected that.

I remember I used to dread going to my endo around this time. “I’m going to the doctor to get yelled at again” I would say. My mom and I would sit in the exam room, while I anxiously awaited some lecture about what I could be doing better. At this particular appointment my doctor looked at me and started asking some strange and poignant questions. “Are you not taking your insulin on purpose?” “Are you trying to lose weight?” What? No, why would I not take my insulin on purpose? Lose weight? What are you talking about? I was so confused. I looked at my mom who was just as naive as I was. The doctor explained that some type 1 diabetics purposefully don’t take insulin in order to induce ketoacidosis and in turn, lose weight. It’s a form of an eating disorder that is called Diabulimia, although he didn’t use that term at the time to describe it, and it is very dangerous. Neither my mom nor I had any idea about Diabulimia or that people did this. While I do appreciate that my doctor was just trying to rule out this possibility for my high blood sugars, I did NOT appreciate the manner in which he did so.

To me it felt very accusatory. More than that, it was as if he didn’t believe me about why I thought my blood sugars were high. An issue like that is a sensitive topic, but he did not approach it like that at all.  Would I have admitted it to him if I was suffering from it? With his demeanor, probably not. When my doctor saw my confused response to his accusation, we put it behind us and moved on with the appointment. I mostly forgot about this encounter until recently when I started reading blog posts about people that have suffered with diabulimia themselves. It made me think back on this encounter and made me angry. Diabulimia is a very real eating disorder that many type 1 diabetics suffer with it, but that’s not what this post is about.

I am a different person but also a different patient than I was 10 years ago, and a lot of that has come from being in the public health field (besides the fact that I’m now older). I believe that we as patients need to take an active role in our own health care. We should feel empowered to ask questions, to clarify and seek out answers, and to be treated like a human being and not just another statistic or number. Similarly, health care professionals should be working towards patient engagement and patient-centered care, to having meaningful exchanges and collaborative appointments rather than authoritative uni-directional lectures.

My pediatric endocrinologist had no bedside manner. He spoke in a monotone at me, not to me. He was not very personable and really did not see me as a person struggling with control of my diabetes, but probably rather as “14 year old female, type 1 diabetic, A1c 10.0”. I should not have stayed with that doctor as long as I did, but my mom and I did not feel empowered. We were still in the early stages of dealing with this diagnosis, there were so many unknowns for us and we were told that this doctor was one of the best. Well all I know is that his approach really did not get through to me. Yes he could adjust my basal rates and carb ratios, but his recommendations only hit the surface, he wasn’t getting to the underlying issues of my high blood sugars. It honestly took years before things really clicked for me, and it was with no help from that doctor.

I should have stood up for myself, even if that meant finding a new doctor that was a better fit for me and how I approach my diabetes. Having a positive rapport and relationship with your doctor is important. Being treated like a human being is important. You and your health are important.

Everyone deserves health care professionals who understand that.