I had this great idea, I was going to use “social math” to describe the impact of diabetes. Social math is taking big numbers and statistics and putting them in a context that provides instant meaning, making the numbers more relatable and understandable for people. It helps people to see the importance of the numbers instead of just the numbers themselves. I thought this was perfect, I can show just how much supplies, money, and time is spent dealing with diabetes in a method that would make it more concrete. Well, turns out it’s not that easy.

Let’s start with how many. According to JDRF, each year, 15,000 adults and 15,000 children are diagnosed with type 1 diabetes in the United States. That’s approximately 80 people per day or about 1 person every 20 minutes.  So in the time it takes you to eat your breakfast, another person in the U.S. has been diagnosed with type 1 diabetes.

Type 1 diabetes accounts for a huge amount of money spent each year. Each year, T1D accounts for $14.9 billion in healthcare costs. That’s close to $2 million being spent every hour! But that $14.9 billion only makes up a fraction of the $174 billion that accounts for both type 1 and type 2 diabetes, according to the CDC. And that’s just for direct medical costs.

There’s a lot of supplies that come with being diabetic.

In one year, my skin has been punctured by at least 1,618 needles.

What about test strips? If every type 1 diabetic in the United States saved the test strips they used in one year and lined them up end to end, they would circle around the world, twice!
This is using an average of 4 tests per day, per person, and 2 million people with type 1 diabetes.

Here’s where the numbers aren’t quite as compelling.

Type 1 diabetics need insulin to live. However, we’re still talking about relatively small amounts. I go through about 2 vials of insulin a month, that’s 20 ml. In the almost 13 years that I’ve had diabetes, I’ve used about 3 liters of insulin, that’s less than 1 gallon. When I think about it, a gallon of insulin is a lot, but that’s because I’m very familiar with my insulin doses. To someone who has no idea, a gallon of insulin in 13 years may not seem very significant.

What about time spent on diabetes related activities? You know how someone has figured out how many days we spend in the bathroom or on the phone or watching tv? What about diabetes? When you add up all the minutes, how many days of our lives are spent strictly taking care of our diabetes? Here’s the thing, the answer is every day! It doesn’t work like that. Even if I say, oh yea I probably spend 30 minutes between bolusing, carb counting, testing and treating lows every day, I’m still thinking about my diabetes every other minute of the day. It is always on my mind.

Basically I decided that the numbers don’t come close to conveying the impact of type 1 diabetes. There might be 2 million of us in the United States, but we are only 5% of all diabetics. It has a high cost, but only a fraction of the amount spent on diabetes in total. But these numbers don’t convey the day to day experience of living with diabetes. It doesn’t convey the continuous level of vigilance and worry, the constant mental math, the feelings associated with low and high blood sugars, the level of necessary preparedness, or the frustrations we all feel.

I deal with 1618 needles a year, but that doesn’t tell you about how when I was first diagnosed, it took me close to an hour before I could psychologically send one of those needles into my finger. $20 spent on treating lows a month doesn’t tell you how disruptive and debilitating some of those lows can feel. And that 1 person that was diagnosed in the past 20 minutes, it doesn’t tell you the emotions he or she is feeling while being told that their life is about to completely change.

Social math is a great tool for some statistics, but when it comes to diabetes, there’s so much that it can’t tell you.

I had a different post for today, but I couldn’t go through with posting it. In light of current events, it just seemed so trivial. This past week I was informed about the tragic and untimely death of two people that I went to high school with. I can’t even fathom the grief and shock that their family and friends must be going through. That kind of pain and loss is unimaginable and my thoughts and prayers are with them during this difficult time. After hearing this devastating news, it seemed that everything else I heard was just more sad and horrible news. A brain tumor scare, a cancer diagnosis, the slow decline of a family member’s friend, relationship drama, car accidents, the list goes on. Perhaps I was just more acutely aware of these events because of the news of the first, perhaps every week has this much bad news, but it seemed so overwhelmingly negative. It’s all so hard for me to process, I don’t even think I can put into words how I’m feeling, only that I am so sorry that there is so much suffering in this world and I wish it didn’t have to be this way.

The one thing this week truly gave me though, is perspective. Yes, I may have a chronic disease, but it’s manageable and it’s not a death sentence. I’m still in good health, I have friends and family that love me, and I have so much to be grateful for. The events of this week made my own daily struggles and frustrations seem so small, and rightly so. It’s important to have that kind of perspective. It reminds you to not take anything for granted, to truly live each day to the fullest, to live in the moment, and to cherish the people in your life. It didn’t feel right to spend today’s post talking about low blood sugar or other inconveniences. Today is about taking a step back from your own life, stepping outside of your own daily hassles, frustrations, and problems and acknowledging the bigger picture. It’s about realizing that although your worries may seem great, there is someone else with far greater worries. It’s about recognizing the struggles and suffering of those around you and being there for them, even just in thought.

It’s so easy to get caught up in your own little bubble, but I’m learning that it can be beneficial to take some time to step back and to put your life and the problems you may be facing in perspective. Perhaps for a moment, they won’t seem quite so bad.

“I was angry, for I had no shoes. Then I met a man who had no feet.” ~ Chinese Proverb

It’s taken me a while to complete this post, as I figured out a way to express what I think without sounding hypocritical. Humor to me is really important, I use humor all the time in relation to my diabetes (as evidenced here, here, and here). However, to me there is a fundamental difference when someone who has diabetes makes a joke or uses humor versus when someone who doesn’t have diabetes does. Where one is socially acceptable and is a benefit of the in-group status, the other can be viewed as insensitive. So this post is not talking about humor as used by a PWD (person with diabetes) or those close to them as a coping mechanism, way to show ownership of their disease, or as a means to live a normal life. Instead, it is addressing the way that humor and diabetes is used by society at large, and the negative implications of these portrayals and statements. 

There are a lot of ignorant, misinformed and insensitive people out there. Jokes and comments are made about everything and everyone, it’s just part of life and you learn to roll with the punches. However, I’ve noticed that compared to other illnesses and diseases, diabetes often ends up as the butt of many jokes or is used to get a good laugh. We don’t hear many jokes about cancer, HIV, lupus, heart disease, or MS, so why is diabetes so funny? No seriously, why is it?

Me at a Cadbury chocolate factory in England

On more than one occasion I’ve heard people say comments similar to “I’m going to have diabetes when I finish eating this” or something like “I feel like a diabetic in a candy shop”. I’ll admit, I’ve made my fair share of jokes at my own expense. A diabetic in a candy factory? I can understand why people think it’s funny. Diabetes has become synonymous with too much sugar. But let me tell you a little secret, I did not get type 1 diabetes from having too much sugar and sugar is not my enemy. Even type 2 diabetes isn’t caused by simply eating too much sugar. Obesity or being overweight is a risk factor, but other risk factors such as family history, ethnicity, and age also play a role. 

Too often people make comments that they think are funny without considering the effect it might have on others. A few days ago, I saw a status on facebook illustrating this point. The status was about a particular college basketball team making it to the “Sweet Sixteen” for March Madness. The status read, “(school’s name)’s so SWEET it just gave me diabetes”. I suppose the person was trying to be clever, but referencing a chronic disease shouldn’t be funny. I know no one is trying to be malicious, but those kinds of comments can still be offensive and not to mention are inaccurate.

And that’s not the only time I’ve encountered a situation like that. I was at the bar when a guy ordered a round of shots for us and some friends:

Me: Wow that shot was really sweet.
Guy: Yea, too many of those and you’ll end up with diabetes.
Me: It’s okay, I already have it so we don’t need to worry about that.

The look on the guy’s face was priceless as he attempted to back track and sputter out an apology. I let him squirm for a little before telling him that I have type 1 and it was fine. But I seriously hope he thinks twice next time he makes a comment like that.

I’m not saying that everyone needs to be an expert on diabetes, but with a total of 8% of the population of the US having either type 1 or type 2 diabetes, it doesn’t hurt to be a little knowledgable about a condition that unfortunately is only continuing to rise in the United States (if current trends continue, 1 of 3 adults will have diabetes by 2050). At the very least, we can try to stop the spread of misinformation and myths, many that seem to abound in the media and popular television (that in itself is a post for another day).

No, Billy probably just has a stomach ache, a sugar rush, and maybe a cavity.

So again I ask, why is diabetes so funny? Is it because people downplay the seriousness of the disease? (It’s among the top 10 leading causes of death in the US according to the CDC, sounds pretty serious to me). Is it because so many people have it themselves or know someone who does? Is it because it’s often associated with being overweight? Is it because type 2 is often preventable? (Type 1 unfortunately is not). I don’t have an answer. Perhaps humor is an acceptable mechanism or motivator to help people prevent type 2 diabetes, although I seriously doubt it.

But here is what I ask from you. Please think twice before you add the hashtag #diabetes under that picture of the chocolate cake or of you eating the giant ice cream sundae or pile of candy. Take a minute and consider the unintended consequences of what you say before you make statuses or statements like the ones mentioned earlier. Jokes about diabetes can be funny, but just be aware that they may not always be viewed that way by everyone, they also may be hurtful or even victim blaming.

All I’m saying is that to me diabetes isn’t a joke, it’s my life. I think a lot more education and awareness is necessary for people to truly understand what it means to live with diabetes, type 1 and 2. That way perhaps people will be a bit more conscious about the comments they make about diabetes and what effect these comments may have on others.

What do you do?

Four simple words that I never thought I would come to dread as much as I do. A harmless question when you have a job, but when you are unemployed looking for full time work, this question takes on a whole new dimension.

So what do you do, Reva?

Well, I have an MPH in Health Behavior and Health Education, but I’m currently looking for full time employment. I’m interested in health communication, innovative approaches to health promotion programs and campaigns, chronic disease management, worksite wellness, etc.

I always answer this question in a similar manner because every encounter becomes a networking opportunity. And this is what people are really interested in when they ask that question, right? Even though the question itself is so vague, don’t they want to know what you do for a living? It’s implied. But why?

What do you do?

When we ask someone what they do, it’s in part to make small talk, but I think we also assume a person’s job says a lot about who they are. In many cases this is in fact true. My friend is an adoption worker. This says that she is a very altruistic, caring, and persistent person. My lawyer friends? Driven, confident, articulate, and critical thinkers. But what a person does for a living does not necessarily define or describe who they are or who they aspire to be, something that is especially true as people begin their careers. My lack of full time employment does not mean that I don’t do other things. I blog, I volunteer, I job search, I have part time work, I exercise…and I manage a chronic condition. Our identities are based on so much more than our jobs.

My identity? I am American. I am Jewish. I am a woman. I am a Public Health Professional. I am a young adult. I am a Wolverine (Go Blue!). I am a daughter, sister, and friend. And I am a diabetic. None of these alone describe who I am. I am all of these things. Kerri Sparling of Six Until Me has a mantra that encapsulates this perfectly. She says, “Diabetes doesn’t define me, but it helps explain me.” All of these identities, as well as a person’s job, does not singularly define a person, but it does help explain who they are.

So I started thinking about alternatives to the question, What do you do? Although more to the point, they would be a bit awkward in a casual conversation or in a first encounter with a person.

So tell me, what defines you?
What do you do now, and what do you hope to do in your life?
If you could have any job, what would it be?
Nice to meet you. What makes you happy in life?
What are you doing in your life now that is helping you to become your ideal you?
Is the life you’re living the life you imagined?
What are you passionate about? Is the work you do related to your passion?
I know what you do. But what do you like to do?

Alternatively, I’ve thought about answering that question more broadly. What do I do? I work to inspire people to make positive health behavior changes in their lives and to live their lives to their fullest potential.

I’ve yet to ask any of these questions or to use the above response, but I’ve definitely thought about it. So far I’ve kept to social conventions and norms and have continued to use my standard response. However, this period of job searching has truly made me examine what does and doesn’t define and explain me.

What about you? What explains you?

My rudeness? Contrary to what it looked like, I was not texting during the movie. I was giving myself life sustaining insulin for the popcorn I had just consumed.

My tardiness? I was on my way out, but then I realized that I didn’t have enough insulin left in my pump to get through the day so I had to stop and change my infusion set before I left.

My irritability? I’m sorry, that was not personal, that happens sometimes when my blood sugar drops so low that I can barely think straight.

My tiredness? It was a rough night, being continuously woken up by my CGM vibrating on my nightstand for a high blood sugar, and then low, and then high again.

My cautiousness? I want to be as spontaneous as you, but I have a lot of considerations when it comes to my health.

My frustration? It’s hard not to be some days when despite your best efforts, your blood sugar just doesn’t want to cooperate.

My fears? There are so many unknowns, the potential for complications, and the worry that your best effort may not be enough.

My anger? You try living with this disease 24/7. Some times it gets to you. You think “why me?”, “it’s not fair.” Life isn’t fair but you learn to make the best of it.

My annoyance? That happens when you talk about diabetes without bothering to differentiate which type you are talking about, contributing to the confusion and misunderstanding between Type 1 and Type 2.

My awareness? From detecting how my body feels to predicting future situations, diabetes brings a heightened sense of perception, vigilance, and alertness.

My sense of responsibility? I developed that young. I had to.

My persistence? No matter what happened the day before, you don’t give up, you keep going and keep trying. Today is a new day, but it’s still a day with diabetes.

My determination? I want a long and healthy life, so I will do what it takes to make sure that happens.

My empathy? I may not know you or even exactly what you are going through, but I know what it’s like to struggle, I want to be there for you the way others are for me.

My patience? Change takes time. Hard work pays off, but sometimes it can take months before you see any results, but it’s still worth the effort.

My discipline? You just have to be, there’s so much to do and remember. You need to have a high level of self-control.

My courage? When you have no other option, you learn to face your fears and you become stronger because of it.

My openness? We all have challenges and obstacles that we must face in our lives. By talking about it and being open, we can learn from and inspire one another.

My quick thinking, flexibility, strength, preparedness, understanding, perspective, knowledge, focus, advocacy, direction, and hope?

My diabetes gave me all of those too.

While there are many negatives and hardships living with diabetes, there are also many strengths. Sometimes you just have to look a little harder to see them.

“Diseases can be our spiritual flat tires – disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.”  ~Bernie S. Siegel, American writer and retired pediatric surgeon, who writes on the relationship between the patient and the healing process as it manifests throughout one’s life

I was raised somewhere between the Eastern and Western worlds. No, not physically. I’m talking about philosophically. My dad is a family dentist and forensic odontologist and is a firm believer in Western medicine. More than that, my dad’s approach to the world involves logic, science, and reason. Things are true because of rigorous testing, scientific proof, but still with a healthy amount of skepticism. For him, there is a logical and scientific answer to most happenings in the world.

My dad’s view of the world contrasts that of my mom’s. My mom takes a more spiritual approach to life. She practices and teaches yoga and meditates twice a day. She believes in karma, chakras and energy flows, and the power of the universe. While my mom does not reject Western medicine, she takes a more holistic approach to the body, following many of the teachings of Ayurvedic medicine. When my dad says to take an ibuprofin, my mom suggests natural herbs and foods or yoga positions.

I feel fortunate to have been exposed to and raised within this dichotomy of viewpoints and beliefs. It has led me to be open and accepting of alternative medicines and approaches to wellbeing. I accept that there isn’t always a logical explanation for everything, sometimes you have to suspend your disbelief, to not think in black and white terms. However, I still retain some skepticism, and an appreciation for Western medicine and all the advancements it has brought.

While accepting of the benefits of Eastern medicine, I have traditionally viewed my diabetes in strictly Western medical terms. My pancreas doesn’t work, therefore I give insulin to convert the sugar in my body into energy. I thought it was ridiculous when I would read that acupuncture or certain herbs could lower blood sugar or “cure” type 1 diabetes, there is no cure. However, I’ve recently started questioning how I can believe that alternative medicines can be helpful or beneficial in some contexts, but not in others. While I do not think that these alternative medicines are a valid cure for diabetes, I am becoming more open to the idea that certain herbs may play a role in how the body absorbs and responds to glucose. I have therefore decided to see if there is some value in the Ayurvedic approach to diabetes management.

Without going too much into it, in Ayurvedic philosophy, the five elements (earth, air, fire, water and space/ether) combine in pairs to form three forces or interactions called “doshas”. The doshas are constantly moving in dynamic balance, one with the others. Every living thing in nature is characterized by dosha. Basically illness or disease happens then when the doshas become out of balance in a person. There are three active doshas:

• Vata (air and ether)
• Pitta (fire and water)
• Kapha (water and earth). 

In a book called, “The Complete Book of Ayurvedic Home Remedies” by Vasant Lad, I found this explanation of diabetes:

“Diabetes is a metabolic kapha type of disorder in which diminished functioning of agni (digestive fire) leads to a tendency toward high blood sugar.”

The description of remedies included diet modification, cleansing programs, and the ingestion of various different herbs, many which I have never heard of. After consulting my mom, we decided that taking Turmeric capsules would be the best method to try since it was said to lower blood sugar and increase glucose metabolism (among having a plethora of other beneficial properties).

So that’s what I’ve started to do, in addition to insulin therapy of course. I have to admit, I am still skeptical. It seems a little far fetched that this plant will be able to help stabilize my blood sugar, but I’m giving it a try and trying to be open to the beneficial possibilities, if not for my diabetes, for the many other benefits Turmeric is said to provide. I will keep you updated on what I find.

Has anyone else had success with alternative medicine or Ayurveda?

Here are a few links:

USDA Benefits of Compound in Turmeric Spice Studied
http://www.ars.usda.gov/is/pr/2009/090521.htm

National Center for Complimentary and Alternative Medicine- NIH
http://nccam.nih.gov/health/turmeric/ataglance.htm

California College of Ayurveda
http://www.ayurvedacollege.com/articles/students/turmeric

Feb 26, 3:45 pm:

I started this blog almost 3 months ago to the day. It was the day of my last appointment with my endocrinologist. When my endo told me my A1c number (8.0), I was angry. I was tired of it being too high and not where I wanted it to be. I was scared, I don’t want to be putting myself at a higher risk for complications. This blog was in part started as a way to hold myself accountable, to keep myself focused and on task to reduce that number.

So how have those 3 months gone? I’ve been trying! I honestly have! I keep close tabs on my CGM, trying to catch my blood sugar before it rises or correcting as soon as I see that it’s high. I’ve been trying really hard to change a habit and have started bolusing before my meals instead of after. And although I didn’t think it was possible, my diabetes has been on my mind now more than ever. Is there more I could have been doing? Of course, there always is. But I’m hoping that what I have done will have a positive result.

With my appointment with my endo tomorrow, I’m nervous. I feel like I’ve been studying for an exam, but despite all my efforts, I still won’t get that A. I want something to show for all the effort I put in. I want that A1c number to go down, I need it to. I need to believe that all the time, work and trouble is worth it and that it makes a difference.

Feb 26, 9:45 pm:

I decided that I would upload my CGM data to the computer and print out a few graphs to take with me to my appointment. My doctor brings printouts with her, but she doesn’t typically look at the CGM graphs (which honestly makes no sense to me) so I wanted to have some with me that I could refer to. I uploaded the data and clicked through the different graphs and charts, however I did not like what I saw. Somewhere it said my average blood sugar over the past 3 months, 182. I looked it up online, an average bg of 182 corresponds with an A1c of about 8.0. I couldn’t believe it. That’s what I was at my last visit, how was it possible that with all my hard work, it didn’t go down at all?! I went to bed discouraged, fighting back tears of frustration.

Feb 27, 11:00 am:

I sat in the exam room, waiting for my doctor to come in. The anticipation building, all I wanted to know was what my A1c number is. The doctor sat down. She pulled out a piece of paper, showing trends in my blood sugar. “These numbers are looking really good, much better than our last visit. How do you feel?” I told her how hard I’ve been trying, the few trends that I’ve noticed (using the printout from my CGM that I brought with me) and how I felt that my blood sugars have been improving. “Hmm, it looks like you’re A1c isn’t showing up in the system yet.” Of course it wasn’t. We talked a little more and eventually she left the room to go check what it was. Finally! Here was the moment of truth.

She walked back in, a smile on her face. 7.2! Are you serious?! I was so happy! My doctor congratulated me. We’ve been aiming for 7.0 and this is by far the closest it’s been in years! YEARS!! And it’s the biggest drop I’ve had between appointments. Yes I know 7.2 is not ideal, I still have a ways to go to bring it closer to 6.0, but this is huge for me! I’ve been struggling for so long to get it below 7.5. One of my New Year’s resolutions was to lower my A1c by .5 in 6 months and here I have just lowered it by .8 in 3 months!

Every single day living with diabetes takes work. It’s the best feeling knowing that all the extra effort and attention that I’ve been paying to my diabetes paid off. Now I just need to continue this trend. Hopefully next time I can get it below 7.0. 🙂