Category Archives: Health

#FML: That moment at the airport when you realize you left your insulin in the hotel fridge

Greetings!

Well, this is my week back from my tour of Spain. My family and I went in celebration of my 30th birthday. The big 3-0! Yeah, don’t ask me how I feel about that yet.

We toured the Spanish cities– Madrid, Sevilla, Granada, Barcelona– and experienced the life of the Spanish, our conquistadores. Regardless, our trip during Semana Santa and were extremely pleased with the entire experience. If you follow me on Twitter, Instagram or we’re friends on Facebook, you’ve seen my photos over these past few weeks. Take a look.

My return to Granada was awesome. I remembered  everything as if I was there two years ago, not 10. We sat at the same restaurants we sat at, we drank the same beer I did and were able to hike up the mountain sides. My mom actually made it up to the Mirador de San Nicolas! I was extremely proud of her.

I didn’t want to leave, but alas, after three nights there, we were off to Barcelona to end our trip after another three nights there. We were flying up to Barcelona and had to leave extremely early in the morning. My sister and I packed our things together the night before, took showers, and were set to go. We woke up at 6am, had breakfast at 7am and were out the door and in the cab to the airport by 8.

Everything thus far was going smoothly and we were having a great time.

[If you’re Catholic, you’ll understand the transition.]

It wasn’t until we were in line to check our bags that I realized I had forgotten my three bottles of insulin in the hotel fridge. CRAP! And as I got that knowing look from my mother, and heard my dad ask how I could forget something so important, my stomach dropped. “I can buy it,” I told my mom. “When we get to Barcelona, I can go to the pharmacy.”

wpid-imag1727_1.jpgIt didn’t matter how many times I told myself it was going to be fine, I still felt so guilty. How did I forget it? Was it just a slip of the fact from my memory? Was everything else just too important for me to remember to take the insulin?

Regardless, as soon as I got through security, I told the TSA agent that I had forgotten my insulin at the hotel and if there was any way to call and see what we could arrange to get it back. The Guardia Civil, or the cops, took my mom and I back to the office where they called the hotel for us. We told them what happened and they asked if I could get a later flight or if I could wait to have the insulin by Tuesday.

The officer was reassuring, however, once we got off the phone and told them we would call them back to make arrangements. “She can go to the pharmacy and buy the insulin, that’s not a problem. If they need a prescription, you can go to the ER at the hospital and they’ll write it out for you,” he explained.

I still couldn’t get the thought out of my head; how could I be so stupid? We left and upon arriving in Barcelona, I went to the pharmacy where I could purchase rapid acting insulin pens for $54. When I got back to the hotel, my mother was relieved as were the hotel staff who heard about this accident.

I was saved. I kind of had to McGyver it still. I had a bit of insulin left in my pump (more than 24 hours worth). So what I did was slowed down the basal, which I had to do anyway after all the walking we were doing. I had woken up twice already from blood glucose in the 40s. Any time I would eat anything, I would inject it with the pens I bought.

My mother arranged to have the forgotten bottles sent to us in Barcelona. There were three, so I wasn’t going to leave them behind as wasted medication. And, if you don’t already know, this all worked out.

Waking up on Wednesday, I got a text from my mom saying that they just delivered the insulin and that they had it. Within two hours, I was low on insulin and everything was perfectly timed.

As much as I’d love to fly out the door without thinking about it, this reminded me that I had to– even on vacation. This isn’t the first time I forget something important, but the first time forgetting on an important trip and so much of it, was a first.

After having all the insulin, I wrote a note to myself to remember the insulin in the fridge, and also on my phone as did my sister. We were covered. What suggestions do you have? Has this ever happened to you?

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Filed under Diabetes, Family, Health, Insulin, Travel

Researchers Use Twitter To Determine Heart Attack Risk

I love Twitter. Besides all the conversations and the relationships I’ve built being on the platform, I love it because it’s opening itself up to new and more interesting developments that not just impact our social status but our future in so many capacities.

Sure, at some points it can be overrun with advertisements, Twitter chats, advertisements through Twitter chats, but in the end, I like it more than any other social network. Moving on, I’m sure you’ve all seen this already as it was picked up by the New York Times and now Fast Company: Your Tweets Can Tell if You’re Going To Have a Heart Attack.

LanguageWhen I saw that, I was appalled. Really? What is the reasoning behind this, I wondered. And then I thought, am I going to have a heart attack?

So I took to Penn News and read about the study that was done. Just so you know, this is a cross between psychology, computer and information science and engineering. They took the old-fashioned idea of surveys meant to measure the emotions and feelings of people and applied the theory to Twitter, drawing from the language chosen and emotional states of individuals.

Since coronary heart disease is the leading cause of death worldwide, the five researchers (among them one woman) decided to see if they could show connections between emotional states and physical outcomes using Twitter.

Margaret Kern, an assistant professor and the University of Melbourne, Australia, was the one woman researcher:

“Psychological states have long been thought to have an effect on coronary heart disease,” said Kern. “For example, hostility and depression have been linked with heart disease at the individual level through biological effects. But negative emotions can also trigger behavioral and social responses; you are also more likely to drink, eat poorly and be isolated from other people which can indirectly lead to heart disease.”

So off they went, pulling a set of public tweets from 2009 to 2010, establishing “emotional dictionaries” and word clusters that showed behaviors and attitudes. The tweets sampled also came from those who allowed for geo-tagging of their tweets, coming from “1,300 counties which hold 88 percent of the country’s population.”

What they found was that if people are more prone to writing expletives and are angry in their tweets, they are CDC Twitter Mapencircled by a community full of anger, which may make them prone to dying from heart disease. Whereas using positive words protected individuals from heart disease. They seemed to find a high-level, long-term communal characteristic.

What if my life actually sucks but I like to play the fact that I’m careless and fancy free and happy on social? Well, they found that it varied from location to location– down to the zip code.

Gregory Park is a postdoctoral fellow in the department of Psychology:

“Twitter seems to capture a lot of the same information that you get from health and demographic indicators,” Park said, “but it also adds something extra. So predictions from Twitter can actually be more accurate than using a set of traditional variables.”

When lined up with the CDC’s map of heart disease happenings, what this team of researchers found was that it was surprisingly accurate in the end. How cool is that? The innovation of thought process is incredible. Does this mean that the rate of diabetes can also be determined since it is closely tied to heart-disease? I wonder.

I wonder what people would be able to tell from Facebook statuses?

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Filed under Health, Research

The Top 5 Diabetic Myths

NO! That will NOT cure your Type 2 diabetes!

Sorry, just letting out my frustration with someone who sent me a message regarding “essential oils” that will “cure” diabetes. I. Wish.

In my timememe-32, I’ve heard a variety of different things from people who are dia-ignorant. That’s right; they’re ignorant about anything pertaining to diabetes. What’s more, what I found is that we people with Type 1 diabetes get discriminated against when we tell people we have diabetes.

“You’re so young!” “You’re not fat.” “You seem healthy.”

Yeah, well, I am young, I’m not fat and I AM healthy! And I have diabetes! Any more judgments you’d like to throw my way?

I don’t say that out loud. In fact, I just laugh at it. But trust me, I’ve wanted to say those things.

I’ve decided to choose a few myths from the top ones I’ve heard from different experiences and people. Let me know what others you know about. I like to be aware.

1. Why those essential oils, weird teas or any Mexican concoction will not “cure” diabetes.

Look. Any way you look at it, nothing will “cure” diabetes. Once you have it, you’ll always have it. You can make it better and even put it into remission, like cancer. However, once it’s developed in your system, it will always be there.

There are things that will make it better like, diet, exercise, particular medications prescribed by your doctor and making conscious decisions about what you’re putting into your body.

And for the love of Pete, don’t STOP taking your medications if you see something is working really well for you, unless you discuss it with your physician.

In the Latino world, we like to do things naturally– me included. I hate thinking that I’m going to have to take cholesterol pills or anything of the sort, so I try not to get to that point by deciding what I’m putting into my body. BUT I still have to take my insulin. I know a lot of people who think they can be cured by teas or other liquid concoctions.

“She drank that and she doesn’t take her medication anymore.” Why? Because she chose to stop? See, that’s not right and can cause more harm than good. Monitoring, eating good foods and talking to your doctor are the ways to put that bad boy down.

2. You eat a lot of sugar, you get diabetes. 

Unfortunately, it doesn’t work that way. The actual CAUSE for diabetes is unknown. However, research has found that it diabetes-here-i-come_o_1552291is hereditary and runs in the blood line. Diabetes develops over time at the cellular level. You eating a ton of candy will not develop diabetes because if you’re healthy and “normal” your body will create the insulin necessary to break down the glucose that you consume.

If you’re eating unhealthy food over time for a long time, there is a possibility of developing diabetes but there is no set of rules stating “If you do this… then you will develop diabetes.” And for people with Type 1 diabetes, this is completely thrown out the window.

Nothing that a person with Type 1 did CAUSED diabetes. In our bodies, our immune system attacked beta-making insulin cells, so we can no longer produce the hormone. That’s it. Because of our insulin therapy, however, we should still watch what we eat, but not be limited because– well, we’re injecting the hormone that your body has.

3. Diabetes is a death sentence. Might as well put me on dialysis now. 

WRONG. If that were the case… oh woe is me! If you’re diagnosed at an older age with diabetes, it might feel like a death sentence because it comes with a lifestyle change if you want to live healthily. Knowing that you can save yourself from infections, kidney failure, heart disease, amputations, erectile dysfunction, would you want to do that instead of sit there and wait for complications?

Diabetes is managed by your lifestyle choices. It takes determination and will power and change. For many people who are stuck in their ways, that’s the hardest part. Throwing out the bad stuff, eating the good and going for walks or bike rides can be enjoyable and you’ll feel better.

This is why I call Type 2 diabetes a disorder. It’s because something just went awry in your body, but you can help to fix it. It takes education. Plus, if you are a father, mother, daughter, son, sister or brother, there are people who care for you and love you. If you don’t take your health seriously for yourself and your desire to make things better, then do it for your family. It’s hard– yes– but it’s doable.

4. Insulin is bad for you and makes your life worse. 

Ha. I’d be dead if this were the case. Insulin is NOT bad for you. It is necessary for you to live. Believe it or not, everyone CREATES insulin. The reason why people like me inject it or are on a pump is because we no longer create it or we don’t make enough of it. That’s it.

If you have Type 2 diabetes and are put on insulin, that’s not necessarily a bad thing. It’s a good thing. It’s helping your body break down foods and function properly. Oral medications might not have been enough, which is a very probable reality.

5. You did this to yourself. You should be ashamed of your lifestyle. 

Say people all the time. Shame on them. Never will anyone know the pains of having diabetes unless they have it. Just because your body couldn’t “hang” doesn’t mean it’s your fault. Could you have been healthier? Sure. However now is the time to take the bull by the horns and change your life. Turn it upside down. You only have ONE life, so live it to the fullest.

Control diabetes so that it doesn’t control you. If you stop focusing on what you shouldn’t eat any long and focus on what you can and how good it makes you feel, this won’t be as hard as you think it is.

The journey is long but you can do it.

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Filed under Complications, Culture, Food, Health

Research Study: How Does Diabetes Affect Sleep?

Hi again and happy New Year!

It’s 2015…already. This year brings a lot of different things, like turning 30 and rethinking my life plan.

However, this is not what this blog post is about. I’m actually glad I’m getting something out in January, to tell you the truth. I’ve been busy– working, curating art, eating cleanly, working out, managing diabetes– you know the drill.

No, this blog post is about something that I went through in November of last year, the same week as World Diabetes Day. A friend told me about a research study that was happening at the University of Illinois at Chicago. The study was to observe people with Type 1 diabetes and the relationship of diabetes to sleep and cardiovascular disease.

How intense! But being the person with diabetes that I am, and a health enthusiast, you know I wanted to know more. That’s when I called Sarah. She’s a nursing student studying to get her PhD. This was part of her dissertation.

The way I understood this, when she told me, was that cardiovascular disease and diabetes are linked. If you have diabetes, either type, you have a higher risk for heart disease. This is something we know, because they tell us– over and over again. On the flip side, if you don’t sleep well you are also at risk for heart disease and diabetes. among other things.

Got that? OK.

Now, if you’re like me, you’ve had hypoglycemic episodes in the middle of the night causing you to get up, cursing the extra exercise you did or the fact that you didn’t eat enough. We’ve all been there. I’ve also had to get up repeatedly in the middle of the night to pee because of hyperglycemia. Again, disturbed sleep patterns.

Could this be an added reason as to why we are more at risk for heart disease? Because, face it, sometimes sleep is ridiculously uncontrollable like a bad day in Diabetes-land.

The aggregation of information from my body lasted three days. I went in to UIC, met Sarah, who was really cool, and chatted with her about diabetes and her studies while I filled out forms about my sleeping behavior. I think I’m a pretty good sleeper, you know?

She put me on a CGM (continuous glucose monitor) to track my blood sugars for a couple of days and then I had to spend the night at the sleep center while they monitored everything from my blood sugar to my urine to, of course, my sleep.

IMAG0666Surprisingly, my room looked like a little hotel, with an individual bathroom and a television. But of course, next to the bed sat the sleep monitors that tracked everything my brain was doing while I snored away.

The stay wasn’t bad. While I was being hooked up for monitoring, I talked to Sarah and the other sleep nurse (who was also named Sarah) about travels, books and experiences with hair during sleep studies. The glue they use to stick to your scalp is extra sticky, so there was a way the nurse lined it up making it easier to remove in the shower.

The multicolored wires were strapped and stuck to different parts of my body that included my legs, neck and head, along with a breathing monitor up my nose.

Additionally, there was another larger remote control looking thing that laid by my side instead of a teddy bear. It kept me company; I can’t complain.

IMAG0667Sarah left me while I laid in the dark, couldn’t see anything since I had taken my glasses off and (not lying) kind of wanted to sleep so that I could wake up and get it over with. I went through exercises with the nurse over the intercom and the only thing I could think about was, ‘What happens if I have to pee?’ They assured me however, that all I would have to do was yelp.

So there I was, laying in the dark, calming myself to go to sleep and I started thinking about this blog post and how what I was doing was important for the future of medicine. Along the process, Sarah took tubes of blood out of me at least three times. One of those tubes would go to research for the future of diabetes– in case they found anything unique or abnormal — but would only be tied to age, race and sex.

If those of us who have diabetes under control participate in these studies, sleep or otherwise, we could help the future of endocrinology. Think about it: we’ve had it for enough time that we’re use to it already. What if these studies lead to a cure in the not-too-far-distant future?

The next morning, I went off to do my daily routine, and said good-bye and thanked Sarah. And yes, there was compensation for the time and sleep over.

I left feeling like I did something for the future of diabetes. Whether or not that’s true, I’ll probably never know. But knowing that I was helping Sarah was satisfying enough. By the way, I commend Sarah for her efforts in learning about diabetes. She went through the steps that we went through to learn and put herself in our positions. She tried checking her blood sugar daily (with expired strips no less), she wore a CGM and she even drew her own blood! When she told me that, I was appalled.

There was no pity from her. If anything, she wanted to learn and help. And after the countless times I’ve heard, “I would never be able to do that,” here’s someone with so much interest and no need that she actually tried it and survived.

How about that?

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Gobble.Gobble. The 5 Things I’m Most Grateful For This Year.

I could have said 10. I feel like 5 was just the right amount though.

Every year I write a blog about diabetes and Thanksgiving, or so it seems. I feel like we all do. We talk about diet and eating, bolusing and carbohydrate counting. I’ve written about the things that Diabetes has given me years ago but I’ve never written about the things I’m grateful for because I have diabetes.

So here we go.

1. I’m grateful that people want to know my story. 

In the past few years, including this year, I’ve had people ask me for an interview because of my advocacy and activism online. I’ve been featured in Sanofi’s Discuss Diabetes blog and most recently, I’ve been on La Bloga as a featured interview. I find it extremely interesting that because of my blogs like this or tweets that I put out there for the world to see, I’m contacted. On one hand, I want to tell stories that aren’t normally told (in my case, the Diabetes-Latina-Female version of things) but I also don’t want to be the only one and at times am sad that it seems that I am.

2. I’m grateful that I have a great job with health benefits.

When the world spends $245 billion on diabetes, you have to wonder if there’s anyone helping the world out. At times, I battle this only because when I didn’t have health insurance, I was getting by. However, now that everyone MUST have health insurance, I’m glad I’m getting it through my job and not having to pay for it on my own. There is something sacred about this whole health insurance thing. We are grateful to have it, yet it’s the epitome of capitalism-at-work. We still put so much into having insurance that at times I wonder if the pay out is what I get out of it. I still have to pay when I go see the doctor because well, since it’s up to the hospital, they over extend their value. I went to a specialist recently and hey, I have insurance, I pay a $40 co-pay to see you and she quite literally walked in, spoke for about 15 seconds and left her interns or residents to do the rest. No asking how I am or how I’m feeling– she just told me her recommendation and that was it.

I still have to pay out of pocket for things like pump supplies, insulin, strips– I have to pay over $100 for both of those together. Why? If you have insurance, your prices go up. If you don’t, they’re cheaper. How much sense does that make? Regardless, I’m grateful that if anything should happen, I’m covered. Hopefully.

1496676_10104335075356050_7380396918683718610_n3. I’m grateful for all the people who have supported me through pictures, questions, chats and talks. 

World Diabetes Day 14 was the best. I was all in blue and got my friends and family members to wear blue, too and send me a picture in support and awareness for Diabetes. I was so humbled to see people actually do this for me and those they love. It’s not just about helping to cure those who are ill but it’s about helping to educate those who need the education.

All of my friends and family pictured here, knows what it means to me to have their support. They’ve been with me in the hard times, have read my blogs, supported me in my efforts, asked me questions and pushed me to be the best advocate I can be. They make my work within this space, my awareness-building worth it.

To these incredible people, I say THANK YOU!

4. I’m grateful that I live in a world class city. 

Chicago is known for so many things, including its hospitals, doctors, research and resources. This ties in to having insurance– because of insurance, I’m able to take advantage of all of these things in order to take care of myself and to make sure I’m in good health. Chicago has my heart as my birthplace, my city, my representation of what home is. I don’t ever want to leave, but it’s also because I don’t have to. I hear from other people about the challenges they face in finding doctors, where here in Chicago, I’ve seen one who’s world-renowned, and the other who is one of the best in the region. Researchers, studies, the forefront of medicine and what can be possible– it’s all right here. I’m lucky to have it.

5. I’m grateful for my parents. 

Whether they were afraid to let me go to college or move out of the house, they never stopped me from doing anything. My parents, as a team, taught me how to take care of myself and trusted me to take care of myself when it came time. My mother never sat on me about my A1c after I was 18 years old. Instead I told her about my visits to the doctor and how I planned to make it all better by myself. My dad would charge me with sports and exercise, being my coach in order to get my blood sugar down as I was growing up. Now I tell him about the technology and the numbers and how I see things changing and improving in my health. They have always been my support, have been there to hear me vent, have made it possible for me to take care of myself and definitely set me on the right path. I’m always grateful for my parents, but in this sense, I couldn’t have asked for a better team to handle this life changing disease.

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Filed under Culture, Diabetes, Health

Write Right about Diabetes

There are a few things that irk me about articles that I see written about diabetes.

Where to begin? Well, let’s give you my credentials and my “right” to be upset about this. I’m not really upset as much as I am just bothered. I’m sure these articles have great information, however, when you’re writing wrong about something I know so well about, I stop reading.

So, here are my credentials.

  • Person with Type 1 diabetes since the age of 7, which is approximately 23 years.
  • Diagnosed as having juvenile diabetes or diabetes mellitus.
  • Journalist with an M.S. in journalism from the University of Illinois at Urbana-Champaign
  • Reporter for 3 years.
  • Professional writer since 2008.
  • Editor for 2 years.
  • Freelancer since 2007.
  • Blogger since 2011.

So accuracy, writing and creating well-rounded pieces on diabetes is kind of second nature to me. I’m not bragging, since these pieces of information can be found on my bios, on Facebook, Twitter and numerous other outlets. I’m literally showing you why I’m going to complain about this in a second.

It’s November, which means it’s National Diabetes Awareness Month and an array of diabetes articles have been published left and right about things that the DOC, or diabetes online community, have known about for years. YEARS.

I saw an article recently about how medical professionals are now calling diabetes an epidemic. However, this term didn’t just start this year. Diabetes has carried epidemic traits for a long time. People are just noticing now.

So here’s my list of things to do should you decide to take on the mission of writing about diabetes:

  • We are people with diabetes, or PWDs. We are not diabetics. Since diabetic is an adjective for objects, it doesn’t necessarily apply to people. We are not things. Take a gander:
    • People with diabetes have diabetic supplies.
    • Diabetic comas, diabetic ketoacidosis, diabetic socks
  • This disease is not foreign to the world. Don’t write like it’s foreign and don’t write about it like it’s something that people have never heard of.
    • Write to educate the community. If you’re talking about new technology, write like you’re excited about it, not like it’s an alien species.
    • Put forth credible information that explains when statistics were collected and who is collecting them.
    • Don’t trust the first thing you read. Please.
  • Get to know the community. We’re here! And we’re not curing our diseases any time soon.
    • Find us on Twitter, join groups on Facebook, ask questions and get real answers.
  • Yes, there are four types of diabetes and none of them is “worse” than another. They’re generally all the same.
    • BUT there are various strains of the disease. Yep. There are ALL DIFFERENT TYPES!

I don’t want to discourage people from writing about it. It’s a nice challenge for a lot of people, including myself. When I wrote about the epidemic and all the different types for a publication, I realized just how difficult it was to write a piece for the general population, that’s full of myths, fake cures and, quite frankly, lies. It’s a full on effort to set people straight about all the things that revolve around the disease and having the disease. Sometimes, it’s overbearing.

Try living with it.

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Filed under Diabetes, Health, Stories

Diabetes and Tech: We’re all Geeks.

Continuous Glucose Monitors hurt. Their needles are thicker than anything I’ve seen since I’ve been diagnosed—do you know how many needles that is? Thousands. Blood withdraw, injections, tetanus shots, vaccines, all included. Especially for the size of the object that you’re inserting into your body, the needle for the sensor couldn’t be any thicker.

I stopped using it because of that. It didn’t just hurt—it felt like I was stabbing myself. My poor soft, virgin-to-any-needle thighs endured the worst pain. Bruises, blood and brashness were included every time I changed the sensor. However, according to my doctor there are two types of CGM users in the world: Those that hate it and use it and those who hate it and don’t use it. I fall perfectly into a category—for the first time in my life.

And don’t get me wrong, the 45 degree insertion angle is all kinds of important and I did prop it at such an angle, but it still hurt!

One of the downsides I found to wearing a monitor was the scars. It’s not like I don’t have plenty of them already from insertion sites for my pump, but when I wore the CGM I had to worry about double the amount of scars and where to place both devices. Additionally, the amount of times I saw “Cal Error” come up was disturbing. So I just went back to checking my sugar with finger pricks.

I went back to using my good old-fashioned glucose meter that conveys readings to my pump. It’s not at all new, especially since I live by the motto: If it ain’t broke, don’t fix it.  I’ve decided to downgrade just because of the fact that at this point in time, I don’t want to be literally tied down and monitored 24/7.

However, if you’re like me and have instances of hypoglycemia, the CGM can literally be a lifesaver. When you drop below a certain number, your pump or monitoring device will beep, vibrate or somehow call your attention so that you wake up and  treat the low before it’s too late. The CGM is programmed to keep you aware, and the more aware you are, the better it is for your diabetes management.

For those of you like me that don’t necessarily have a tracker of sorts, you can also use MySugr, a diabetes companion used to “tame your diabetes monster.” You put in everything manually, but it makes it fun and keeps you on your toes about the stuff that’s going into your system and the results that it portrays.

See, the thing here is, you can input your numbers (of all forms) and see your results tracked, allowing you to identify what you’re eating and how it’s impacting your body. This answer the question of the “if… then” scenario. You’ll start thinking, “If I eat this, then my blood sugar will be XXX,” allowing you for wiser choices on meals and carbohydrate intake.

There are other things that I use to monitor my activity—like the fitbit that I wear. That’s just one of the many devices that are currently being sold to play the pedometer role in a more high-tech and fancy way. It also shows that you’re “active.”

What’s the downside to wearing one of these? Charging it and forgetting not to put it back on. Additionally, you also have to be good about inputting your caloric intake, water intake and setting your fitbit to sleep mode. I mean, if you need something to make you active, are you really going to be adding in all that information? I know data geeks do it. Do you fall in that category? What ’bout the simple folks, like me? Will power I tell you.

I would like to wish from the app making gods, to create something that not only allows me to track my glucose levels and intakes, but also communicates with my smartphone, updating data so that I can look at it IRT. You know what that means? In Real Time—some marketing terminology I picked up. But instead of sitting there and unplugging in order to download all of my numbers, I could have them as they happen with stats and all! That would be cool. Someone get on that now.

Bottom line, we people with diabetes are all geeks. We love to nerd out to new technologies that can give us more data and tell us more information about our body’s performance. It’s quite literally looking at your body as if you were some kind of machine, or dare I say, cyborg. I actually like calling myself that. Geeky– I told you.

People with diabetes or PWD want to know more. I think it’s a sense that something went wrong within our bodies that we couldn’t control and by having control and understanding everything else, is not only necessary, but it also keeps us sane in a strange way. I mean, my life is run by numbers and sometimes that’s enough– especially when you burn out and become exhausted of always being “on top of it.” However, using technology helps us stay on it even when we don’t necessarily want to.

Additionally, we have the ideas of islet transplants– which create beta cells which create insulin– along with this far fetched notion of stem cells and the more we learn about it, the more we are excited that there may just be a cure of some sort. Trust me, when it comes to the ethics of some of these things, I find myself in a bind. I tend to be selfish and think of only myself when it comes to these things. I don’t know if anyone else thinks along these lines but I’m like, “I can be free!” Kind of like the genie in Aladdin. We can dream, can’t we?

Social media has also played a huge role for us. You’re probably reading this right BECAUSE you follow me on social. You saw this blog post on Twitter, right? Leave a note in the comments, please.

I digress. Social media has allowed for people to find those who are like them in various ways, not just also being a person living with diabetes. This includes people who live in the same city, like the same music, play the same games – all folks who have allowed for friendships to flourish and conferences fun to go to. Together, as a band of do-gooders, we have allowed for people to come to us with questions, comments and “I know EXACTLY how you feel” sentiments. We just want the dialogue to continue so that we know we’re never alone.

And that companionship, my friends, follows us all over the place through our technology, especially our smartphones. We are able to tweet, Facebook, Pin and Instagram from anywhere on the planet (that has Wi-Fi) and stay connected via microblogging and blog and information sharing has never been easier. Wherever my friends are, I can be right there with them, letting them know that, for example, TSA didn’t have to pat me down today at the airport. Those are #smallwins, but #wins in my book nonetheless.

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Importance of Diabetes Awareness: Do you have a pancreas? Beware of Diabetes.

Apparently, we haven’t been screaming loud enough or taking the proper measures to ensure that people know how big of impact diabetes is making worldwide. I’m honestly quite shocked that new and updated numbers about those living with and those living with who have gone undiagnosed have not yet been revealed. The last time that I looked at the stats, they were the same, so let’s not dwell on that.

Let’s dwell on the fact that people are still not aware of the repercussions and issues that lie ahead for our country and our world if we do not do something about the health and wellness for those communities who are getting hit hardest by this epidemic (because by definition, that’s what this is). Additionally, there are things that need to get done for those living with Type 1, not just Type 2, as well.

I don’t know if I should technically call it discrimination, but I’ve come across those folks to who’ve been “shocked” to hear that I have diabetes. I’ve also come across those who feel like they can cure me of my disease. Trust me, I’ve had those beliefs myself but to no avail, I know that this is a lifelong battle I’m going to have to go through. But how long will we be able to go without starting to ask questions about a cure or a more formidable lifestyle that’s agile and convenient, because I’m going to be honest, I’m tired of this disease.

Regardless of all of that, people who are shocked to hear that I live with diabetes are also ignorant to the fact of how it all works, possibly taking for granted the fact that their bodies work the right way. As a society, we are not aware of how diabetes comes into our lives, the causes nor the effects that they have on us as a whole, and in turn don’t understand how to fix the problem. That’s what we need to get to—people have to learn what’s wrong in order to fix it.

Let it also be known that I’m jealous of Breast Cancer Awareness. Yes, I said it. The whole month of October turns pink. And I have to wonder, is it the fact that Type 2 diabetes is, for lack of better description, believed to be a lifestyle onset disease rather than something that “just happens” the reason why people don’t support it? Because when it comes to diseases that kill people, Diabetes takes more lives than breast cancer and AIDS combined. However, that doesn’t seem to be enough to cause a ruckus, which I think is due to the inability to comprehend just how bad it can be and how with some awareness it can possibly be curbed.

There’s an Avon Walk for Breast Cancer, the NFL got in on it with their pink gloves and now retailers are merchandising pink products during October because, well, they need to make money on your boobs, too! While the ADA has its Walk to Stop Diabetes every year, it is nowhere near the fundraiser or awareness tool that it is meant to be. If those diagnosed were walking, there would be well over 70 million people taking to the Lake Shore Drives of the world. (I live in Chicago.)

During November, we should be talking about the issues that those living with diabetes face. These topics include the lack of healthcare; the lack of resources; the lack of education; the lack of proper doctors and medical service people who actually know diabetes inside and out and who can suggest proper measures to ensure the well-being of those who have been diagnosed or have been living with it for years.

We should be talking about the advances in medicine like the strides in creating pumps closer and closer to becoming the artificial pancreas we’ve all been waiting for in order to take our lives back and not live under the beck and call of this monster of a disease. We should be taking part in studies and writing about them—as I will next week.

There are plenty of us living with this disease and we’re loud and proud and active in so many spaces, that we should make those funders of health and illnesses listen to us, to know that we need to do more in order to teach people about diabetes— all types. We should be preaching to the choir, but have those members of the choir preach to their flock.

Think about it, I don’t have breast cancer, I hope to never have it, and I know about it. Why do I know about it? Because I’m a woman and have breasts. Doesn’t everyone have a pancreas that has the chance to malfunction? Not to be a Debbie Downer or anything, but folks should learn more about the pieces of their body that MIGHT have a chance of going awry.

The importance for talking about diabetes has not died, nor will it ever. It’s an epidemic, disease, disorder that will impact citizens of the world for as long as people walk the planet. We, as “preachers” or members of the DOC write and talk and expel and share and endure all that comes from having the disease, but now it’s time to reach out to those who have a pancreas to make an even bigger impact. I mean, I got a tattoo that represents diabetes awareness so that people HAD to ask me about it, even if they don’t have diabetes and know no one with it.

So, during this month of November, I ask you, how can we keep the conversation going?

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Every day for me is #DayofDiabetes

Building awareness for diabetes is a full-time job. It’s not just telling people about the disease, as I wish it were, it’s explaining the type you have, what you do about it and how you manage it in this whirlwind of a life. In recent weeks, I’ve received comments and questions concerning my pump, my diabetes, healthcare and questions about my insight. I’ve had deep conversations with healthcare providers, diabetes educators, health fanatics and people who want to help me control my glucose levels.

On April 5th, I had the pleasure to see our work come to fruition during the American Diabetes Association EXPO in Chicago. I sat on the executive planning committee for months previous to the big show and was happy to hear that over 13,300 people made it out to the event to learn a lot more about diabetes, resources and see that it’s possible to live a healthy life with the disease.

Since my pump warranty is up in October, I also had the opportunity to learn about the options I have as a person with Type 1 diabetes. Regardless of calling myself an advocate, I’m continuously learning to keep up the good fight of balance, education and proper management. I need my eyes to see, my ears to hear (I had NO clue diabetes affected hearing) and feet to walk!

After reading Kelly’s post about #DayofDiabetes, I felt the need to write this post (finally) and participate, because well, as the title says, EVERY DAY is a #dayofdiabetes for me!

In the never ending story of diabetes, like everyone else, I’ve heard comments regarding my life with diabetes. We should start a hashtag just for this!

See the following:

  • “You look healthy.” [In reference to me saying I have diabetes]
  • “You know that cinnamon helps with blood sugar levels, right?”
  • “Are you really wearing a pager?!”

I know, I know, we hear it all the time and this shit never gets old. In fact, I think it’s practice for me to perfect my answers to the questions. Additionally, it also helps for me to practice patience and allows me to further educate the people I speak to.

My answers to the bullet points above:

  • “I am!”
  • “Yes, but just so you know, my pancreas doesn’t work.”
  • “What did you think it was? An insulin pump?!”

My background has allowed me to dive a bit deeper when talking to others in the health space as well. For example, when talking to a representative from a clinical network, I was able to question the level of expertise being provided at their clinics. Are they just M.D.s or are they diabetic educators? Do your patients have access to an endocrinologist? How much are you actually offering the people who use your services?

I spoke with a few diabetic educators who showed me the Journey for Control maps of management.  Meant to instigate conversation about diabetes and management levels in groups, I asked if they had something like it in Spanish, if they offered this to young people with diabetes and if they had ever considered using it for parents of children with diabetes. It’s an awesome idea I wish my parents had access to when I was growing up.

I feel that I’m growing in knowledge and in many aspects of my life that only enhance my efforts for proper advocacy and education. My endocrinologist spoke at the EXPO about technology and diabetes tools in a digital world. When I caught up with him afterward, he mentioned that it was a conversation we had had that lead to this lecture. It is different when it comes from a doctor. I was live tweeting using #ChiADAExpo14 from my @Kikisbetes account.

“You made me trend,” said Dr. Philipson, who is also on Twitter. I laughed.

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This One Goes Out To The One(s) I Love

When I get scared, I get bitchy. When I get bitchy, I snap at people. When I snap at people, they don’t like me.

Usually, my fear comes from something that has to do with diabetes (like most of us PWD) and when I try to talk to non-PWD about it, I get approximately 3 different responses.

1. They don’t know how to answer and say, “I hope everything is OK” which makes me want to say, “You try living with a disease that can make you feel miserable just for eating… Anything.”

2. They say, “I don’t know how you manage! I could never.” Which makes me want to say, “You either live or die if you don’t take care of yourself. I’m pretty sure you’d be able to do it.”

3. If something happens within a few days, they say, “Well, why didn’t you … [insert what they think they know here.]” This makes me want to say, “You must think I WANT to feel this way, right? Because I did this to myself…”

Rarely do people get the answer right. But is there a right answer? This is a complicated situation to be in especially when diabetes isn’t just physical. No, it’s psychological, it’s emotional, it’s everything in one big ball of crazy. Most of the time, there is no right answer.

I think the best answer I’ve gotten to my explanation of a terrible night was, “Do you feel OK now?” That’s the most anyone can ever ask without sounding like a jerk.

I can count the times I’ve actually been afraid because of my diabetes. Afraid enough to want to talk about it.

1. Hypoglycemic moments when I drop below 40. For those of you who DON’T have diabetes, this consists of shaking, cold sweats, dizziness, imbalance and possibly your peripheral vision closing in on you– almost fainting. Fun!

2. Having my eye doctor tell me that I have bleeding in my eyes. Enough said.

3. Hearing that tingling sensation in my fingers could be “due to your diabetes.” GTFO.

4. Having my endo tell me that even though I worked really hard to keep that A1c down, it didn’t go down, and based on my numbers, it should actually be higher. FTW!

It’s not so much fear as disappointment, I think. “How could I let this happen?” is usually what I ask myself.

As a person with diabetes, we need a support system that consists of people who live with it, too. There is no way that people without diabetes could understand unless they are doctors or advisers or people with very, very empathetic hearts that have also studied the anatomy of the body.

When I complain, I really don’t know what I’m looking for. I hate to admit it, but most of the time I want to vent and talk about how hypoglycemia ruined my night’s sleep and how I don’t feel good and how I wish my head would un-cloud itself so I can think straight and I wouldn’t have to worry about getting up to pee all the time.

And today, I felt so bad for my complaints. How do people put up with me?

I want to make it easy for other people to understand who I am and what I go through, however, inside me there’s a war going on that’s trying to figure out a balance that so many other people take for granted. People are usually receptive to what I say and let me do what I need to do in order to feel better.

If my blood sugar is high, I lay down, drink a lot of water and take my insulin, usually over checking because I need to find out whether or not my cannula’s bent or if the pump isn’t working right. As much as you want to give in to technology, sometimes I doubt it.

If it’s low, I try not to panic anyone and drink juice and eat. On my own, I don’t panic, however much I feel like I’ll pass out or fall over, panicking doesn’t get anyone anywhere. It brings fear, sure. But it’s unnecessary at the moment.

So, here’s my letter…

To those whom I love and who love me:

I love you. I appreciate your concern, your kindness, your sympathy and your attempted empathy. Thank you for asking me if I have enough supplies or if anything belongs in the refrigerator. Thank you for asking me if I ate enough, took my insulin, are feeling OK or need any water. Thank you for keeping up your snack pile for me. Thank you for making sure YOU have things for me to eat, just in case. Thank you for telling me to check my blood sugar.

Thank you for asking if everything is all right when I have to see my doctor and asking about what he told me. Thank you for taking an interest in me and my issues. Thank you for supporting me and telling me that you’re proud. Thank you for your encouragement and positive words. Thank you for helping me keep this crazy effort to balance and for wanting to know how you can help. Thank you for learning about me.

However much I act as if I am always on my game, sometimes I’m not and I love that you can back me up and think for me when I’m not thinking. I appreciate it and could not ask for more.

To those whom I love and who love me, you are my guardian angels.

Gracias,

Kiki

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