Diabetes Blog Week Day 5: Dream Diabetes Device Wildcard

Posted on May 17, 2013 by Reva

Today instead of swapping diseases, like today’s topic, I’m going to swap topics.

Tell us what your fantasy diabetes device would be. Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?

I’m going to start by saying that I do not want another device to carry around. Between my pump, meter, CGM, and phone, that is enough devices to have with me all the time. Here’s what I do want. I want an app on my phone that integrates everything on to one platform. But it’s not just going to store blood sugar numbers and insulin doses, oh no. This app is quite sophisticated. This kind of technology has not even been invented yet, that I know of (this will be awesome to read 5 years from now when this dream is a reality). Let me paint you a picture.

You’re out to eat and you ordered this amazing Mexican dish. You aren’t quite sure how many carbs it is though. There’s the rice and the beans, the tortilla, the filling, etc. Maybe you can make a pretty close estimation, but it’s still just a guess. You take out your phone and open the DiaBites App (pronounced die-ah-bite-ees, patent pending).

You take a picture of your food using the camera in the app. Presto! DiaBites brings up a screen that tells you exactly (Yes, exactly! This is my dream device) how many carbs are in the food that is right in front of you. It also breaks down the other nutritional information (calories, sugars, fat).

But that’s not all this app does! You scroll down. DiaBites tells you exactly how much insulin you should give yourself. You look at the number it’s telling you to bolus. Wait, that seems a little low for all that food. That can’t be right. Don’t worry, it is! DiaBites also takes into account your active insulin and your current blood sugar number. How does it know this information?! It wirelessly collects this information from your pump and CGM. You now know exactly how much insulin you need to give for that delicious Mexican meal.

The DiaBites app has other great features. As it collects your glucose numbers, basal rates, and boluses, it charts your trends and can alert you in text format when you’re blood sugar is too high or low, as well as when it’s rising or dropping at a fast pace. This is similar to current CGM’s although you are able to see and customize the alerts on your phone. The app will also recommend insulin doses based on your calculations to correct for the number. For D-parents, you can set the app to receive text updates from your child’s CGM. You’ll be alerted on your own phone when your child’s blood sugar is above or below the level you set, no matter where your child is.

Numbers, graphs, charts, and pictures can all be sent to you or your doctor’s email with a push of a button. No more manual tracking of exactly what you ate, how much insulin you gave, and your pre and post blood sugars. DiaBites compiles all this information (including pictures of all your meals) for you in an easy to read daily journal which can be downloaded quickly and easily or uploaded directly from your phone. Don’t worry, you can select if and which pictures to send, just in case you don’t want your doctor to know about that piece of cake.

DiaBites the App, coming soon to iPhone and Android (I wish!!!)

Image from Blogchef.net- Smothered Burrito Recipe

Diabetes Blog Week Day 4: Accomplishments Big and Small

Posted on May 16, 2013 by Reva

Today’s prompt: Share the greatest accomplishment you’ve made in terms of dealing with your diabetes. No accomplishment is too big or too small.

I see my accomplishments as building blocks to keeping myself healthy. They honestly all felt like the “greatest accomplishment” at the time. Instead of focusing on just one, allow me to share some with you, starting from the very beginning. (Many of these I’ve already written about so I’ve included the link to past posts)

The first shot that my parents gave me. It was in the hospital after being diagnosed. I hate needles, just receiving a shot was an accomplishment.
The first time I poked my finger. And then eventually being able to do it without crying or having a fit each time.
The first shot that I gave myself. It was because I was too angry at my mom at the time to ask her to do it. But hey, anger as a motivation still did the trick.
The first time I had a sleepover after I was diagnosed. Being away from my parents when I had become so dependent on them was a big deal, even when it was just for one night.
Switching to an insulin pump and inserting my first infusion set. I passed out the very first time from holding my breath in anticipation. The nurse kindly reassured me that a medical center was one of the best places to pass out.
Inserting my infusion set without numbing my skin first. I used to use Emla cream (a local anesthetic) to numb my skin every time I had to change my set. The day that I decided not to use it was a pretty big deal.
Going to sleep away camp, both diabetes camp and non-diabetes camp. It was a big step to be away from home for an extended period of time and be responsible for my own care.
Deciding that it’s okay that people can see my infusion set (and later, sensor) at the pool. Realizing that I don’t need to hide it, despite the stares.
Taking care of my diabetes in college. That’s kind of a broad one, but an accomplishment nonetheless.
Studying abroad in England for 6 months with my diabetes and traveling around the world. Always an additional challenge traveling with diabetes.
Starting to use my CGM and inserting my first sensor. I still hesitate, but I’m getting better each time.
Switching the sensor to new locations on my body. Sometimes I can be a little reluctant to change.
Starting my blog and sharing my experiences with my readers. I don’t think I could have anticipated how discovering the DOC and blogging would positively change my life.
Having my A1c drop to the lowest it’s been in years at my last appointment. Even if it goes up at my next appointment, at least I know that I can do it.
Realizing that even though having diabetes is not easy, it has given me many other strengths.

I could spend more time talking about each of these accomplishments, but looking at this list (which still doesn’t include a lot of other diabetes achievements) helps me to realize that I truly have accomplished a lot in the past 12 years, many of which were not easy feats. I often get caught up in the day-to-day management of my diabetes. I get upset when I see the daily spikes in my blood sugar or when I have to treat a low in the middle of my workout. Taking a step back to see how far I’ve come since my diagnosis helps to put it all in perspective. Living with diabetes isn’t easy. Each day is a struggle, but I’ve come a long way. Yesterday’s mountain is today’s mole hill. A finger prick that used to bring tears and take 30 minutes now is now an act that I don’t even think about. In a way, every day feels like an accomplishment.

It’s not just about diabetes though, it’s life in general. Your struggles now may become one of your biggest accomplishments later. These struggles and accomplishments are what help to build your inner strength and character. Big or small, they are what make you the person you are today.

Diabetes Blog Week Day 3: Memories

Posted on May 15, 2013 by Reva

Today’s prompt: Share your most memorable diabetes day.

My most memorable diabetes day is without a doubt my diagnosis, but I’ve already written about that. It’s been hard to think about a particular day or experience that really stands out. The experience I’m going to share may not be my “most memorable”, but it is one that has stuck with me.

One of my favorite spots

Where I went to college, there is an area of land called The Arb, which consists of 123 acres of nature. There are walking paths, an abundance of trees, open fields, a river, and beautiful landscapes. There are always people walking, jogging, picnicking, laying in the sun, and enjoying the outdoors. One of my favorite things to do while in college was to go for a walk in-between or after class when it was nice out. Sometimes I’d find a bench and read or other times I’d walk the paths. The Arb is big enough that you could walk into the woods and be at least 20 minutes from any of the entrances. It was a great place to clear your mind.

I always have fruit snacks with me in case my blood sugar drops low. They are in every coat pocket, backpack, purses, you name it. I remember a particular day during grad school when I decided to go for a walk in the Arb by myself between classes. I reached my hands into my coat pocket and felt the crinkle of a fruit snack packet. I started my walk into the arb, heading for a spot near the river. My blood sugar was fine when I began, but it quickly started to descend. This was before I had my CGM so I had no idea that it was dropping as fast as it was. All the sudden I went from feeling fine to feeling really really low. All I had with me was what was in my pockets (which didn’t include my meter).

I reached my hand into my pocket to pull out my fruit snacks to treat my low. That’s when I realized that what was in my pocket was actually empty wrappers. I had forgotten to throw them away and to replace the stash in my pockets. I didn’t have anything with me to treat the low!

I started to panic. I was probably only a 15 minute walk back to the Public Health School where my belongings were, but running would only make my blood sugar drop faster (or at least that was my “low brain” reasoning at the time). I started walking quickly back towards the school. I looked around, I couldn’t see any other people near by. I became really dizzy, to the point where the leaves on the trees were blurring together. I distinctively remember thinking that I wasn’t going to make it back, I honestly thought that I might pass out right there in the middle of the grass. How long would it take for someone to find me? Who would stop? Would they think that I was just sunbathing? Would my friends worry if I wasn’t in class? Would they think to look for me here?

I’ve had a LOT of lows in my life. I’ve had some that were just as bad as the one I was experiencing and some that were even worse. But what made this day memorable was that I was alone. In the woods. Low. Without a way to treat it. It was honestly my worst nightmare come true.

I made it back to the public health school, my head spinning and my heart racing. I treated the low right away. However, that might have been the scariest diabetes moment I’ve ever had. Scary because it brought up all the “what ifs”. What if I hadn’t made it back? What if I did pass out? What if no one found me for hours?

Now, I make sure that I have a full packet of fruit snacks with me at all times. I always take my phone and if I will be walking somewhere alone, I make sure someone knows where I am. Having diabetes means ALWAYS being prepared. You never know when or where a low will strike.

Diabetes Blog Week Day 2: We, the Undersigned

Posted on May 14, 2013 by Reva

Todays prompt: Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?

In many countries (including the US), Spanish soap operas, telenovelas, play an integral role in people’s lives. However, they are more than just entertainment. They are public service announcements in narrative form. They are carriers of educational messages, reaching millions of people every day. Telenovelas weave health topics into the plot of the show, whether it’s about using condoms, getting tested for STIs/HIV, eating healthy or just going to the doctor. One in three telenovela viewers say that this prime time entertainment TV is their top source of health information, according to the CDC. Entertainment TV has huge potential for carrying educational and health messages to millions of viewers.

So why am I telling you this? My petition is to have a character created on the TV show, Glee, that has type 1 diabetes. Glee is not a telenovela or even a soap opera, but it does have many of the same characteristics. As I just described with telenovelas, Glee addresses diverse issues through its stories and characters, reaching 8-11 million viewers. Topics include: teen pregnancy, economic status, race, sexual preference, religion, physical and mental disabilities, sex, school and domestic violence, school shootings, homophobia, eating disorders, sexual assault, drug and alcohol, the list goes on. Using engaging story lines (as well as song and dance) the show brings awareness to and educates viewers on important topics while still providing entertainment.

You don’t have to like the show, many people don’t. What I want to draw attention to is its ability to bring up relevant, complex, and controversial issues and address them in a way that the audience can relate to and understand. I think it would be a perfect show to have a character that has type 1 diabetes. This person would have diabetes, but would not be the “diabetic” character. They would be multidimensional just like all the other characters. Artie is in a wheel chair, but his character is much more than that.

The character I’m proposing would have type 1 diabetes, but would not be defined by it. By having such a character, I believe that we can begin to bring awareness and education to viewers about type 1 and type 2 diabetes in a way that can develop over multiple episodes. Rather than having a single episode on a medical show in which there is a short storyline about someone with diabetes, the character on Glee would be someone that has the opportunity to grow and develop. Viewers would have a chance to get to know the character as a person. The character can introduce concepts such as the challenges of living with a chronic disease, self-management, lifestyle modifications, and differences between type 1 and type 2 diabetes. Whether its asthma, diabetes, epilepsy, cystic fibrosis, or some other chronic condition, I think that it is time that there are more positive representation of chronic health conditions on mainstream television. 15-18% of children in the US have a chronic condition. These types of characters on TV can help children, adolescents and adults to not feel marginalized or “different”. They can become a point of reference for children trying to explain diabetes to their friends. “You know that character on Glee? Yea, that’s what I have.”

To me, my petition is less about the particular TV show, and more about the fact that a mainstream character with type 1 diabetes is created on primetime television. I chose Glee because I think they do a good job of addressing certain issues, but I admit there may be a better show out there and am open to all possibilities.

My petition:

We, the undersigned, petition the Fox Broadcasting System and the creators of Glee to create a regularly appearing character on the show who has Type 1 Diabetes.

While many different issues are addressed on this show including characters with unique backgrounds, sexual identities, disabilities, and other characteristics, we believe there is a great opportunity to address a health condition that affects millions of people in the United States. This character can help to bring both awareness and understanding to viewers around the growing health epidemic of Diabetes (type 1 and 2).

Thank you.

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

Posted on May 13, 2013 by Reva

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

Posted on May 9, 2013 by Reva

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.

Practice What You Preach

Posted on April 29, 2013 by Reva

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.

If My Scars Could Talk

Posted on April 18, 2013 by Reva

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

Posted on April 15, 2013 by Reva

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!

Social Math

Posted on April 4, 2013 by Reva

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.