Brain Battle

Our brains are constantly looking for heuristics and shortcuts. We take in so much information every second that we need a fast and efficient way to make sense of the world around us. We use categories and stereotypes to help us understand what we see and what we’re experiencing. So we end up telling ourselves stories to explain phenomenon. Many times we’re correct, but sometimes these assumptions are wrong.

Can you think of a time you saw something that maybe you didn’t understand and made up an explanation or jumped to a conclusion?

I’m guilty of it, we all are. But the thing is, it can be damaging. Maybe a person was having a bad day and made one off comment and now you assume that the person is always rude. So now you’re doing the person a disservice by judging them based on one comment when in reality, they could be a super nice person.

There are so many reasons for a single action.

Having type 1 diabetes, I feel like I’m constantly defending myself against stereotypes and people’s assumptions.

“Do you want dessert?”

“No thanks.”

Why did I say no? There’s a million reasons why I may have said no. But because I have diabetes most people’s first assumption is it’s because I can’t or shouldn’t eat it. I can’t be too mad, that’s their brain trying to make sense of the situation. Besides close friends and family or people who know someone with T1d, when they hear “diabetes” they think sugar=bad. They’re not trying to be rude when they respond “Oh sorry, I forgot you can’t eat that.”

Cue deep breaths.

Most of the time, that’s not why I say no. Usually it’s because I’m trying to eat healthier and one way that I’ve chosen to do that is to cut down on sweets. Sometimes I say no because I’m too full. Or my stomach hurts. Or I don’t like that dessert. Or I just don’t want it. Occasionally it’s because my blood sugar is too high and I probably shouldn’t have it, but that’s the minority.

I’m in a facebook group for a fitness program and was reading a post about a woman who was out with friends and turned down alcohol since it’s not part of the nutrition plan and she’s trying really hard to stick to the plan. She posted how people assumed that because she wasn’t drinking that she must be pregnant.

And that guy who was distracted during your meeting. It’s not that he doesn’t care, maybe he has a lot going on at home that he’s trying to sort through.

All of this is to say, there are many reasons why people do what they do, why they say what they say. I’ve been trying to give people the benefit of the doubt and not jump to conclusions. I fight my brain’s tendency to make snap judgement and instead be open to alternative explanations. I know how annoying it can be to have people make assumptions about me, and so I try not to do it to others. I think this is something that everyone would benefit from if we all decided to second guess our snap judgments and assumptions.

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Sweet Sixteen

Today marks 16 years with type 1 diabetes, Sweet Sixteen.

In honor of this day, here are 16 of my favorite sweets from the past year. Yes, I can eat that.

1.This birthday cupcake from my birthday last week.

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2. This doughnut that looks like a pizza!

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3.  My first visit to Chick-fil-A with a delicious cookies and cream milkshake.image

4. Amazing doughnuts from a local bakery that I brought to my family’s Father’s  Day gathering yesterday.

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5.  A bacon glazed mini doughnut. Can’t go wrong with bacon.

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6. Bonuts (biscuit doughnuts) and a biscuit with chocolate gravy, peanut butter, banana jam, and pretzels from Biscuit Love in Nashville.

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7. Brown butter almond brittle and bramble berry crisp ice cream from Jeni’s Splendid Ice Cream. I dream about this ice cream.

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8. A seven layer birthday cake. Layers of vanilla cake with whipped chocolate buttercream in between covered in more chocolate and frosting.

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9. These biscuits with jam from Loveless Cafe in Nashville.

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10. Holiday cookies that I decorated:)

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11. I hosted a popcorn potluck party and people brought the most amazing flavors including Oreo, white chocolate lemon, and puppy chow!

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12. Monstrous piece of chocolate cake! And plenty of people to help share!image

13. Delicious Thai ice tea flavored Popsicle!

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14. Went to a local tea shop for a full English tea and had the most amazing scones, macarons, and petit fours. image

15. For the Jewish holiday of Purim, my friend and I made cookie butter filled hamantashens with dark chocolate drizzle and sea salt.image

16. Delicious margarita. Cheers to 16 years. Although hopefully soon there will be a cure and I won’t have many more diaversaries to recognize.

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*Many of the above desserts were shared, eaten over multiple days, or were not finished.

A scary situation (told using bitmojis)

I recently found myself in a very scary situation as a diabetic. Let’s just say that I was about to drive myself to the hospital for my blood sugars, which I’ve never had to do before. Spoiler alert: I didn’t and everything is fine now, but it was still a frustrating and slightly alarming afternoon.

It started at my company picnic. It was a beautiful spring day and I was happy to be outside with my coworkers.

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But my blood sugar was high and rising fast.

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I had bolused for my lunch and figured it would eventually come back down. I was away from my CGM playing frisbee, running to catch it, and figured the activity would probably help lower it too.

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Not a frisbee, but closest I could find

After playing for close to an hour, I checked my CGM, but instead of my blood sugar going down, it was still going up.

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I corrected for the high giving more insulin and headed back inside to the office. My CGM started to point downward and I figured I was in the clear.

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As soon as I got back to my office, I went straight into a meeting. I sat there trying to pay attention to what was being said, but I was starting to feel nauseous and out of it. I felt so sick, I knew something had to be wrong.

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Luckily the meeting was short and I immediately checked my blood sugar number again, this time it had risen to over 500! I was shocked!

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I texted my dad and my sister (who is a nurse and soon to be a nurse practitioner) and filled them in. Then I rushed to the bathroom and gave myself a shot and changed my infusion set.

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I went and told my manager that I had to leave work early. I decided that if in one hour, my blood sugar wasn’t clearly going down, I would drive myself to the hospital. If all the insulin I had been giving wasn’t working, I knew I needed to get help.

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I got home and checked my ketones, which looked fine. Then I got a large glass of water and laid down on the couch, praying that my blood sugar would start to drop. About a half an hour later, I started to get some good news. And as it continued to fall, I gave my dad and sister a play-by-play.

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I was slightly bummed that I was missing my weekly bootcamp workout class, but I was just so relieved that my blood sugar was coming down. And as it dropped, I started to feel better physically too.

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I continued to lay on the couch, taking it easy as I watched my blood sugar fall. Soon it was dropping double arrows fast.  I started to worry that I may have given too much insulin and I was going to crash, which has happened many times before. I just wasn’t in the mood to be caught on a roller coaster of highs and lows.

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But finally, after about a total of 3 hours later, my blood sugar was almost completely back to normal and I could finally relax.

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So everything was fine and life went on, but it definitely was an experience that I hope never happens again!

Diabetes Blog Week Day 5- Tricks

Diabetes Blog Week

Today’s topic: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other.

For me, diabetes “tricks” are really just more safeguards that I’ve created for myself to cover for the fact that I’m actually not very organized when it comes to my diabetes. But you know what, it works for me and that’s what’s important.

So here are my diabetes tricks, which are essentially tricks that I play on myself so that I don’t find myself in hot water with no supplies left. Or ways to make the supplies I do have last longer.

Hide things from yourself. I don’t have an organized system to remind myself to reorder supplies. And while I know many companies offer automatic refills, it never matches up to when I actually need supplies so I end up stopping it. Basically, when my supplies look like they’re running low, I order more. But sometimes things don’t go smoothly. I forget to order. Or there’s a hold up with the pharmacy and they need my doctor to write a refill which takes longer. Or they mess up the prescription. And then days and sometimes even weeks pass and I start to freak out because I’m running out of insulin and I need it to live! But then I remember my trick, I hide an extra bottle of insulin from myself so even when I think I’m out, I really have one left! Genius! And I do this for all my supplies, I keep an extra bottle of test strips, a sensor, and a couple infusion sets separate from the rest of my supplies just for emergencies (or moments of forgetfulness)

Buy bulk. I’ve used many things to treat lows over the years, but my food of choice are packets of fruit snacks. They’re small and portable, they’re the right amount of carbs for most of my lows, you can eat part of a pack, they don’t raise my blood sugar too high and they work quickly, and they’re cheaper than glucose tabs and other snacks. So I go to Costco and I buy the box of 80 fruit snacks (which are usually only like $10-$12 in store for the box). But I don’t just buy one giant box, I buy 2 and sometimes 3. I keep one in my apartment, I keep one in my car, and I use one to refill all my stashes of fruit snacks in every coat pocket, purse, and bag. This way I can guarantee that I am never without a way to treat a low.

Find good tape. When it comes to my CGM, I wear that thing as long as I am getting accurate numbers, which I beyond the approved 7 days. But I never would be able to wear it as long as I do without the comfortable, sticky tape that I place over it. I currently use Hypafix, the 4 x 10 roll, and am a huge fan. Having strong, reliable tape is a must when you continuously have tubes and sensors stuck in/to your body.

 

 

 

Diabetes Blog Week Day 4- Healthcare Experience

Diabetes Blog Week

Today’s topic: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? 

Oh man, I don’t even know where to begin. I’ve had so many awful experiences with doctors, offices, insurance companies and pharmacies. I can’t forget about the Epic Letter of Complaint that I wrote and sent to a former endocrinology office. Or the more recent Insurance Frustrations I’ve dealt with that are all too common.

Unfortunately I have yet to have a doctor and office where I felt like I consistently received competent, respectful, helpful care. Some visits and doctors have been better than others, but on the whole, there is much room for improvement. In fact, at my last appointment, the doctor forgot to check my A1c! We’re talking lack of basic diabetes care here.

So I’d like to invite you to my imaginary endocrinology appointment, an idealistic appointment where I get the exact care and consideration that that I as a patient and person deserve (and you know, a few extra perks since this is my fantasy appointment after all).

Receptionist: Good morning Reva, you’re here to see Dr. Rainbow?  Please have a seat in the massage waiting chairs, the doctor will be with you in a just couple minutes. She is actually running ahead of schedule this morning.

Nurse: Hello Reva, come on back with me. I can take your pump, dexcom, and meters from you. We’re going to download all your numbers and information and use a software that graphs them together. Do you use any additional apps that we can also incorporate the information? Any fitness or food tracking apps? With this integration, we can get a better idea of how exercise is affecting your blood sugars and if your carb and insulin ratios are adjusted for the foods you eat and when you eat them.

Now we’re going to check your A1c right here in the office with a simple finger poke. We know how annoying it can be for you to have to go to a separate lab early in the morning before work and before your appointment to get your blood drawn to check your A1c. And then have the lab forget to send it to your doctor so it isn’t there when you arrive for your appointment. We wouldn’t want that to happen to you.

You’ll be in exam room 2. It looks like the doctor is ready for you now.

Doctor: Hi Reva. I wanted to let you know that all your prescriptions are up to date. We were contacted by your pharmacy that your insulin prescription needed a refill. So we took care of that and it should be all set when you’re ready to order more.

So, how do you feel things are going? I have your graphs up on the screen and I can see some places that we can make some small adjustments. But before we go into that, do you have any specific questions or concerns  you’d like to talk about?

Our nutritionist is in the office today if you’d like to meet with her after we finish. Now let’s take a look at your graphs. Your A1c is looking good, good work on improving it since our last visit.

I also wanted to see if you’d be open to talking about or trying different brands of insulin or other medications that have been approved for use with type 1 diabetics to see if we can get your numbers under tighter control. What I would hate to have happen is to not talk about other options that exist, since treatment of type 1 diabetes has progressed over the years. We pride ourselves at this office with keeping up to date with the latest research, technologies, and treatment options. You deserve the best care that we can provide and we will work together to make sure you get it and reach the goals that we’ve worked together to set.

Is there anything else that you’d like to cover that I may have missed today? I want to make sure that you feel like you got the most out of this appointment and feel comfortable with your changes and next steps. Great.

Well, I look forward to seeing you in 3 months. If you have any questions over the next few months, please don’t hesitate to call, email me, or use the patient portal to communicate and I will personally respond within 24 hours. I would hate for you to have to make multiple calls and wait days to get a simple answer from me.

Have a good rest of your day and keep up the good work!

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Diabetes Blog Week Day 3- Language

Diabetes Blog Week

Today’s topic:  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples?

 

“You’re not diabetic. You have diabetes.” This is what my mom used to say to me back when I was first diagnosed. I was 12 years old. Honestly at that time, that distinction wasn’t that important to me, or maybe I just didn’t understand the difference. Today, I use the phrases interchangeably, although I get why my mom made the distinction. She didn’t want me to define myself by my diabetes. It was something that I had, not who I was. But while I don’t feel limited by my diabetes, it is a big part of who I am however I say it.

That was the first time I really thought about the nuanced language we use to talk about diabetes. But it wasn’t the last.

It was a few years ago. I was at my endocrinologist’s office for my appointment. My doctor had left the room briefly for something and my chart was open in front of me. I peeked over to see what was on the screen and I saw it: “diabetes mellitus type 1, uncontrolled“.

Uncontrolled?! Who, me?? The person who tries every day to manage my diabetes? The person who is constantly carb counting, correcting highs, and treating lows? The person who is always thinking about diabetes is uncontrolled?! What?!

It was such a slap in the face to see those words on the screen. I was sad and angry and confused. I felt like I had been incorrectly labeled…and judged. I felt like I wanted to write a paragraph explanation next to that word for whoever might read it. Why couldn’t it say something like, “Engaged patient, making progress, but room for improvement”? I know now that what I saw was part of the ICD-9 codes for billing purposes. And yes, at the time my A1c may have been higher that I’d like. But the fact that my struggles and effort of living a normal life with such a challenging chronic disease had been reduced to that single word was demoralizing.

I’ve since checked the codes that my doctor used, and I haven’t seen uncontrolled used again. But I’ve never been so angered and hurt by a word used to describe me and my diabetes. Even though I wasn’t necessarily meant to see what was written and it wasn’t a word that my doctor ever used directly with me, it demonstrated the power a single word can have and how important it is to be cognizant of the language we use when speaking about and describing diabetes. You never quite know the effect it may have.

Diabetes Blog Week Day 2- The other half

Diabetes Blog Week

Today’s topic: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

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I’ve experienced all the emotions above as well as many others. I have good days where I feel proud of my blood sugar control, encouraged by the support that I receive from my family, friends, and online, and optimistic about the future. And I have bad days where I feel frustrated by my roller coaster of blood sugars, tired of having to constantly think about and manage my diabetes, and fearful about future complications. And sometimes when the emotions get to be too much, I become indifferent and burnt out.

What helps me when I find myself in a funk is to have outlets where I can essentially vent. I know that when I blog about my frustrations, that I’m not alone, and that others have been there too and got through it. When I talk to friends and family, they may not completely understand what I’m going through, but they validate my feelings and listen to what I have to say.

Finally, there are 3 phrases or mantras that have really helped me find perspective and get through tougher times.

You can find more The Other Half of Diabetes posts here.

Diabetes blog week Day 1- Message

Today’s blog topic: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? 

One of the many reasons why I love Diabetes Blog Week is because it’s a chance to see and read all the different diabetes blogs all in one place. Every year I’m excited to see new diabetes bloggers as well as catch up with the blogs I’ve been following for some time.

Last year there were over 150 bloggers who participated. One hundred and fifty people of different ages, different years of living with diabetes, some have it themselves, some care for others who do. Everyone wrote something personal and unique to them, yet we all have one thing in common. We are all living with or caring for someone with diabetes.

I think the message that is most important to me is that even though we are all in this together and we all have something in common, we each have our own experiences and stories to tell. No two people with diabetes are the exactly the same. Our bodies react differently, our approaches to food and exercise may differ, our strategies to cope are unique to us. And that’s okay. Diabetes is a complicated disease and how we manage it is distinct to each of us. And if someone does something differently, it’s not our job to pass judgment or tell them that what they’re doing is wrong. Our job isn’t to blame or criticize. Our job is to accept and encourage everyone. Because while our journeys may be different, our destinations are the same as we all hope for a cure and a long and healthy life.

Read other blogger’s response to this post here.

Diabetes, Filters, and Reality

I am fascinated by fashion and lifestyle bloggers and Instagrammers. I’m talking about the beautiful women and sometimes men who are dressed immaculately, hair and make-up perfect, with gorgeous houses that are beautifully decorated down to the tiniest detail. They post stunning pictures of their morning coffee next to fresh flowers from their trip to the farmers market, their children or pets perfectly posed, babies smiling and always looking adorable, food that makes your mouth water, and views of places that make you want to get in the car and drive there.

I am envious of them and their seemingly perfect lives. Their posts in many ways make me want to be them, or hell, just be friends with them. Their pictures and post present this shiny picture of life filled with beauty, smiles, and a sense of optimism. They are pinterest come to life.

But I know what I am seeing is not reality. Because what we don’t see are the 56 pictures that were taken to get that one perfect one. We don’t see the baby throwing a fit before finally settling down for just long enough to snap the picture before then spitting up on her adorable, probably hand-sewn dress. We don’t see the 20 minutes of staging that breakfast picture, getting the lighting and angles just right as the coffee turns cold. And we don’t see the mess that is hidden out of view.

But we aren’t supposed to. These lifestyle bloggers are selling us on this image of reality, one that is carefully cultivated. Real life is not that neat and perfect. I’m sure even the best lifestyle blogger has a bad day, but we wouldn’t know. Not unless they told us. And that’s okay, because I and countless others enjoy seeing these pictures and posts, imagining a life that is different from my own.

Anyone who uses social media or blogs is in essence creating a version of reality. What we choose to share and not share all help paint a picture of us and our lives to our viewers and readers. When I started this blog, I wanted it to be as close to reality as I could. To me, sharing the difficulties, fears, and frustrations is just as important as sharing the triumphs. It would be impossible to begin to understand what it’s like to live with diabetes without sharing the good, the bad, and the ugly. But even then, I do think about what exactly I am sharing.

filterBut what would a filtered view of diabetes look like? I had some fun imagining an Instagram filter of my CGM where the filters would allow you to take the reality of a crazy day of blood sugars and choose a different story to tell. For example, the stabilize filter showing a day of in- range blood sugars.

But it’s not my reality. And it’s not a story that I’m interested in telling. I want people to see the mess, because most likely, they have messes too. I want people to see my imperfections, because we all have imperfections. I will continue to fantasize about the lives portrayed by the fashion and lifestyle bloggers, but my diabetes is and will be filter-free.

 

 

 

 

 

#IWishPeopleKnewThatDiabetes Day

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I wish people knew that my diabetes isn’t a consequence of anything I did or did not do.

I wish people knew that diabetes is all consuming. It’s always there. I’m always thinking about it in some way or another. You can’t take a day off.

I wish people knew that currently there is no cure for type 1 diabetes, and while you may have good intentions when you claim that certain diets/herbs/treatments will cure it, you’re wrong. I hope one day there will be a cure, but today, there isn’t.

I wish people knew that each person’s experience and management of their diabetes is different. What works for one person doesn’t always work for another.

I wish people knew that every day with diabetes is different. And even if you do everything “right”, it doesn’t always behave.

I wish people knew that living with diabetes is expensive! And constantly dealing with insurance companies and pharmacies and doctors is often overwhelming and frustrating.

I wish people knew just how much work goes into managing diabetes, effort that isn’t always apparent from the outside or reflected in the numbers you see. It’s physically and mentally exhausting at times. And no matter how challenging the day is, you wake up and have to do it all again.

I wish people knew that diabetes isn’t a joke.

I wish people knew that type 1 diabetes has a complicated relationship with sugar. It isn’t caused by too much of it. Sugar isn’t bad. I can have sugar. In fact, when I have low blood sugar, I need it.

I wish that people knew that we need more research, funding, education, advocacy and legislation. We need to increase access to affordable treatment, improve patient safety, and find a cure.

I wish people knew that diabetes can also be a blessing and not just a burden. I’m a stronger person because of it.

 

This post is part of #IWishPeopleKnewAboutDiabetes Day, follow the conversation on Twitter, Facebook, Instagram, and other social media using the hashtag.