Category Archives: Diabetes

How to be an ally to someone living with Diabetes

So recently, I decided I had to write more and put it out there to my friends on Facebook: what do you want to know about me and diabetes?

I got amazing answers, to be honest, and although I’d written a lot since I started my blog years ago, there were still a few topics I hadn’t touched.

The first one I chose to write about is important because I’ve faced the complete opposite in situations in my life: How to be supportive, how to be an ally.

Imagine the situation of having to make an added decision about everything you do in a day. Everything is a choice that isn’t a guaranteed positive. This is true for everyone, except our decisions affect a lot more than just our mood in the moment.

Checking blood sugar is the only guide you have. That’s poking your finger, drawing blood and making sure you know where you are in the spectrum at a particular moment in time.

You have to decide what you have to eat and when. You have to keep your emotions in check because, guess what, those affects your blood sugar, too. Everyone has a different opinion on what to do and what to eat. You workout but deciding what to do with your insulin is questionable. How hard do I go? How much insulin to I give myself? You do everything you’re told to do and the numbers still don’t reflect. What do you do now? Cry?

Every day is a different situation. A different “choose your own adventure” story. A different ending just to wake up and do it all over again.

Then, (here it comes) you find that person that tells you that you’ve done this to yourself. You didn’t take care of yourself. You’re doing it wrong. Why can’t you just follow directions? Why can’t you lower your blood sugar? Just count the carbs! Just don’t eat that! Just be happy! And my favorite– you know you can cure that, right?

How would you feel? When every day is dedicated to staying alive, keeping healthy, and calculating your risk on the food you eat, the last thing you need is someone telling you that you’re doing it wrong.

There’s no right answer.

As someone who’s supporting a person living with diabetes, as a friend, ally, significant other, you have to understand the challenges. It’s actually quite easy, judging that you’re a human.

Here are a few things to know and understand. If all people knew and realized this, the world would be a better place.

1. The body is a mystery and a beautiful machine. It’s complicated and everything is connected. Just think about that for a second. Many people with diabetes know and understand this. We know how our bodies work and what’s missing.

2. As a person injecting insulin, we are tasked with thinking like a pancreas. Except we’re not an organ and we go based off of math to make all of our decisions.

3. Don’t tell us what we can and can’t do. Or eat. I bet you $1 million that we’re already 5 steps ahead of you.

4. If our blood sugar is too high or drops too low, we didn’t do it on purpose and it’s not our fault. In any case, DON’T BLAME THE PERSON TRYING TO KEEP THEIR BODY IN BALANCE.

5. Diabetes is hereditary and genetic. Type 1 is autoimmune meaning our bodies attacked the insulin producing cells and they no longer exist. We did nothing to bring it on. Type 2 is also genetic and although you may be healthy, you CAN develop it. Stop telling us that we did this to ourselves.

6. Don’t assume you know how we feel. Please, this can ruin relationships.

Things you CAN do:

1. Make healthier choices for yourself. Seriously. It’s a way to help us and put yourself in our shoes, even if it’s a tiny step.

2. Ask don’t tell. “Do you know why your sugar dropped?” “How do you feel now that you started doing xyz?” “Is that something new you decided to try?” But don’t ask, “can you eat that?Ever.

3. Listen. As much as you can’t see diabetes, it weighs on us like a 2 ton elephant. Sometimes we need to vent because it doesn’t always go our way. Sometimes we’re at a loss for … everything.

4. We can’t “get rid of it.” Understand that every day, month, year, diabetes is going to be there. It’s not the flu, not a cold. It’s a chronic disease that we and you have to live with if you’re around us all the time.

5. We all have hidden demons and issues. Put yourself in our position. Like so many others, we don’t like to be defined by our issues. Stop using the word “diabetic” and do use words like “people with diabetes” or even better, “people living with diabetes.”

Did I miss anything? Any recommendations that you have that you’ve seen work? Anything people have done for you? Leave a note!

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Filed under Diabetes, Family

Stop Assuming You Know How I Feel

Not 24 hours ago did I read a blog post that kind of blew my mind. It wasn’t in the sense that I was exposed to something new and life-changing, but it connected the dots and made sense of a lot of commonalities that have society-changing results.

Heather Gabel, who I have yet to meet in person, writes in “The Things They Don’t Want to See” about people with disabilities and the assumptions made about them. Analogized through staring, the assumptions result as insults and are biased to those making them. I won’t butcher it anymore. If you want, read it.

This quote summed the whole thing up perfectly:

MY EXISTENCE IS NOT LIMITED TO THE IMAGINING OF WHAT IT MUST BE, BUT IT IS IMPACTED BY THE KNOWLEDGE THAT WHAT I DO TO SURVIVE CONSISTS OF THE THINGS THEY DON’T WANT TO SEE.

C’mon… how many times have you heard, “I don’t know how you can take shots every day. I wouldn’t be able to do it.” The typical response to this, if you’re anything like me is something like, “Trust me. You’d do anything in order to stay alive.”

I started thinking about situations like this– comments, questions, assumptions– where I was pigeon-holed. I mean, on top of the assumptions about being Latina, I also get assumptions from both sides about my diabetes. One is invisible, until I make them aware, whether it’s through answering their question about my insulin pump being a pager or in telling a story. The other is visible because of my features, tan skin and dark hair but also my last name and the languages I speak.

About four years ago, I developed vitiligo. It’s not necessarily tied to diabetes, but the fact that I have one autoimmune disease, I’m susceptible to more. While others have thyroid issues and celiac disease, I lose pigmentation of my skin. I’m saying this because it’s true: It’s not a big deal. Compared to diabetes and thyroid issues and all those other lovely autoimmune issues, vitiligo has no harmful effects besides horrendous sun burn. No pigmentation = no protection = very sensitive skin. I’m basically turning white. There have been super stars and super models with it, but who am I?

People don’t mind staring at me. Some ask if there is something wrong. Other’s ask if it’s temporary. Others just stare. Good thing I’m loud and present. I don’t mind answering questions because that person had the courage to ask about something that s/he assumes I’m sensitive about. I’m not.

A colleague of mine only addressed my vitiligo after I told him that I wasn’t born this way– which many also assume. “Can I ask you a question? That is, if you don’t mind me asking,” he said one day. I told him I didn’t care. This isn’t as bad as diabetes can get. I just don’t have color and my color, or lack thereof, shouldn’t be what makes people treat me differently. Isn’t that racism of some sort? Xenophobic?

No one will ever understand what it feels like to be the person who has assumptions made on the daily because she is Latina, has diabetes, is a woman and has vitiligo. Lucky for the rest of the world, you’ll never have to really guess how I feel. My face, tonality and diction speak for me. People make assumptions about me every day and in the end, I really don’t care because I know who I am. However, this still has to change.

I agree with Heather when she takes it down to the minute details. Encouraging your children to feel comfortable and telling them that people are different in so many different ways can one day help both sides. Don’t assume that we’re all sensitive, bitter or afraid, because we aren’t. We’re normal.

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Filed under Culture, Diabetes, Health, Personal, Stories

Do you keep diabetes a secret?

Diabetes, as we all know, can’t be seen on a person. But wouldn’t it be cool if people with diabetes suddenly had purple eyes or lighting bolt shapes in their hair? It’d be even better if we developed some sort of superpower. I guess you can say, our superpower is the ability to manage our lives, to supercede any doubt, to live everyday like it’s our last because just about 50 years ago, it might have been. Thanks to modern medicine and technology, we’re able to live with diabetes for 50, 60, 75 plus years without question.

No, you can’t see diabetes. You can see actions though. You can watch someone check their blood sugar, take an insulin shot, swallow a pill, mentally count their carbs, program their pump to deliver a scheduled bolus and even adjust a basal rate. But seeing it, no. You can’t see beta cells being attacked, unless under a microscope and even then– I have no idea if that’s possible.

Unless someone sees my pump, they really don’t know that I have diabetes. We’ve been in that situation before– you know, when people think my pump is a pager or something of the like? I hate to break their heart when I tell them, no, I’m not a doctor.

A few years back, when I initially thought about writing this blog post, I read something that asked the question, “Where do you hide your pump?” I then proceeded to read comments that dissected the question and said things like, “I don’t hide it. I’m not ashamed.” Fair assessment. I never thought about “hiding” my pump either. But was that something I was doing when I strapped a band around my leg to clip the pump so that you couldn’t see I had it on when I wore a dress? Was that what I was doing when I clipped it to my bra so that I looked like Iron Man? Was the fact that I was trying to disguise it or camouflage it under or between something else actually “hiding”?

I then thought about the stories of people who hid the fact that they had diabetes on purpose. They thought they were a liability to their job. They were ashamed for not taking care of themselves (to an extent). They didn’t want to be different from their peers. They didn’t want anyone thinking they were different or were incapable of doing something.

I suppose that it is a choice to “come out.” There is a choice in talking about it all the time, in joining our online communities, in educating other people, even if it’s correcting the term “diabetic” to “people with diabetes.” We’re not defined by our inability to make insulin, but by the ability to supercede it and conquer the world through gifts we’ve been given by science and technology.

I guess I could choose to keep diabetes out of the conversation, but it’s created such a strong person through acceptance. I see so many strong people who discuss, bring to light and fight through issues that we all go through because we don’t make one measly little hormone. It’s such a tiny thing that has such a huge impact, and I’ve said it before.

Diabetes has given me the ability to believe in myself, it’s given me the voice to speak, it’s given me the drive to help. Diabetes has made me develop into the person that I am, although it doesn’t define who I am or will be. It’s helped to make me confident and knowledgeable. It’s tied into the rest of my communal beliefs and has only made me a more well-rounded person with abilities to lead, write, organize and make people understand.

Have I kept diabetes a secret? No. Have I hid my pump for fashion’s sake? Yes. But what you gonna do? I don’t think I’ll ever keep diabetes out of the equation. I don’t think you should either. Be proud. You’ve come this far and you have so much more to go.

 

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Filed under Diabetes, Stories, technology

No Awareness Needed

Can I just say that I didn’t know it was National Diabetes Month?

I mean, I knew it but I thought it was diabetes AWARENESS month. I guess now that diabetes isn’t a rarity, there needs to be more acknowledgement of the illness and not so much awareness building. I once wrote a blog about how it wasn’t a six-degrees of separation as much as it was one degree. It seems like everyone knows someone with diabetes nowadays.

When I was first diagnosed, I remember people giving me apples and fruit on Halloween. That was no fun. I preferred arts and crafts instead. I also had kids thinking that I was contagious, that I was privileged (since I could go to the bathroom any time I needed to) and that I was teacher’s pet. She bought sugar free candies for me that the kids thought were special. Yes, I AM special.

I had other kids try to steal my glucose tablets in school. “Why do you get candy?” “Why do you have a can of Coke in your locker?” “Why do you have sandwich crackers?” At that time, all I knew is that if I ever felt shaky, I would have to eat that stuff. It never happened. At the end of the year, I’d throw out stale crackers and hot cans of Coke. I cannot remember my blood sugar ever dropping when I was in grammar school.

I think back on growing up with diabetes and I laugh. Not because it’s funny, but because the way of thinking about diabetes was so old school, for lack of better terminology. It was very limiting and in fact, may have been easier to manage with all those restrictions. Now that doctors tell you that you’re not limited and you have to count carbs the freedom is cool to have but at the same time makes it more difficult to keep in check, that is unless you restrict your own diet from things you know you shouldn’t be eating.

In the end, you realize what your body is made for– veggies. Lots of them. Food becomes more complicated with freedom. As opposed to “normal bodies” we have to consider what’s being consumed all the time. As a person with diabetes, you realize what exactly is healthy for your body because you see the repercussions of eating crapola or something that you didn’t realize would affect you so negatively.

You know how they say, you are what you eat? It’s more true for people with diabetes. We eat too much sugar and even though we take insulin we slump. It’s terrible. You feel slow, sleepy, fat, cranky and full of regret. You’d think knowing this would stop us from indulging– nope. It happens.

This month, I plan on writing a lot. I want to definitely add to this blog since I haven’t been in quite some time and hopefully get into a groove with it all. Since I’m not bringing “Awareness” to anyone anymore, I’ll just tell you what it’s like to live with this little thing called Type 1. 

Here’s to National Diabetes Month! Happy November!  

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Filed under Diabetes, Stories

Why going to the endo is like math class

D E B U T S I N G L ERemember when you used to take tests or quizzes in math class and the teacher would tell you that “you have to show your work or else you’ll only receive half the credit”? First of all, I should be allowed to do math in my head, even though I get it, they wanted to cut the cheating out. Secondly, I hated getting the answer right but the “steps in getting to the answer” wrong. Isn’t there more than one way?

Yesterday, I had a visit with my endocrinologist who I hadn’t seen in a year. This was due to being laid off my job a year ago and finding health insurance again. Going to see a world-renowned endo is pricey! Along with getting to see all my doctors again (yay!), I get my supplies, insulin and everything else I need to get my a1c back down (it was a 7.9). It’s not terrible, but I was doing much better this time last year. I actually thought it was going to be higher!

With that said, I took the time to tell my doctor about the issues I’ve been faced with and really, nothing has changed since the last time I was there– besides the fact that I wasn’t checking myself enough due to a shortage of supply. I feel like most of the time, it doesn’t matter if you have diabetes or not, doctor’s advice is usually the same: Do more exercise, lose more weight, you’re doing fine, at least you’re alive. We’ve all heard it.

This time though, I was scolded about not wearing my CGMS, which I admit slipped to the wayside, again due to shortage of supply. But, not to fear! I’m back on it.

As I was sitting there with the doc, reviewing the printout of history from my pump, what I call my diary because, well, they know EVERYTHING just from looking at a few numbers on paper… and graphs, and charts, and totals, I saw the scatter of numbers throughout the pages. Most notably were the days where I checked only once or not at all.

**[If you know anything about diabetes and this isn’t the first time you’ve heard of this situation, you know how important it is to check yourself. I’ve written about it here. The doctor refers to not checking as the “dangerous road.”]**

This is when the guilt sets in. There are days when you wake up and you just don’t want to deal, so, putting your health at risk, you don’t. It’s not to say that it is the right thing to do, but it happens. For those who don’t have diabetes, let me just say, it gets exhausting. Always thinking about what you’re eating, the amount of sugar, carbs, counting, shots, boluses, double checking how you feel, checking blood sugar, making sure you’re on top of your life! Numbers– all numbers, all the time. So even though it sounded like a good idea to skip on checking out where you were and how you were doing in terms of blood sugar levels, it’s not in the long run and you look like a bad student at the doctor’s office.

At this point, I’m too old to shout out, “But my a1c was a 7.9! That’s still pretty good!” But that’s how I felt. It was a sigh of relief, it was a way to loosen the hook I’d always be on with my diabetes. But you know what? I didn’t show my work.

When the doctor downloads all the information that my purple insulin pump stores in its computer system, he sees what’s going on like when I drop and when I’m too high and all that jazz– my personal life and what my insides are doing. The graphs and charts are only possible with data, but if I’m not checking myself or wearing my CGMS there is no data. The data here is the long division work I did in my head and didn’t show on paper. The a1c result is the answer that I got kinda right. The only reason it isn’t in the “correct” spectrum is because I didn’t show my work, thus slipping up in the end.

Because I didn’t do the work, my doctor couldn’t tell me how to fix it. As much as this is about pricking your finger and sampling some blood, NOT doing actual facts and figures in your head, you’d think it’d be easier, right? Well, besides my need to ration supplies, it’s easy to forget to check. I’m running to work, I’m busy at work, I’m running home, I’m running around, living life, doing things and then, “Oh, shit! I have to check myself!” Does that not happen to you? It happens to me all the time, which is why the CGMS is good for me. It’s stuck there and that’s it. It tells me when to check and I’m good. For the most part. Technology has been known to fail.

So based off of what he knew for sure, he changed my basal rate, changed my carb ratio and sent me on my way for blood tests.

Usually, when I leave the doctor’s office, I’m known to dwell too long on the whole ordeal. I cry most of the time as a release of energy, anxiety and stress that living with diabetes brings about. I’m reminded of everything I have to do to not die a slow and miserable death, and at the same time, I swear that I’m going to change. The difference this time was that I had company and I had to explain things. He told me that I wasn’t perfect, that I’m human and that he was going to support my habits that I intended to build on. I didn’t cry but instead I accepted the fact that I do what I can and sometimes, things don’t just go the way you want them to.

Life is a tumultuous rollercoaster on its own. Sprinkling in some much needed care adds a little anxiety, but more, it adds the motivation needed to feel better and more in control. In the end, I’ve realized that in order to take control of my diabetes, I’m going to have to do the work and hopefully the more corrections I make on my process, the better my results will be.

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Filed under Diabetes, Doctors, Hospitals, Personal, Stories

My Diabetes Advocacy

I reread an interview I did a few years ago during National Diabetes Awareness Month aka November. Although I felt that it could have been a bit more concise and articulate, it made me think about what I said and how I said it. If you take a look at it, I go into a lot of specifics and thought processes of my own. Incidentally, it made me think about my diabetes advocacy and quite frankly, where it went.

Yeah, I’m a busy person. I have about 10 jobs and most of the time my friends think I have no time for them, but letting my advocacy slip is like letting my health go. I feel like it goes hand-in-hand. One cannot exist without the other. And I started to wonder, was I burning out again without knowing it?

It’s possible to avoid your health by making yourself too busy. People do it all the time. They’re too busy to work out, too consumed by other things to eat better or monitor their lifestyle. Could I be doing the same thing when it came to taking care of myself and just hadn’t realized it? Was I using my work and my extracurricular activities to bury the fact that I wanted to forget I had diabetes… again?

Truth be told, I haven’t had insurance since I was laid off my last full-time job. I just started a new position where I’ll have it again, but knowing there were inhibitors to caring for myself made me almost wish I didn’t have diabetes. I still checked myself and worked out and ate all right, but the idea of having to re-order pump supplies and having to go to the clinic instead of my world-renowned endocrinologist scared me. I was in this position again for wanting to work for myself and be on my own a bit. I was also unaware of this new insurance marketplace but at the same time was set on the fact that I would find a job when I needed it, which I did.

However, when it came to my presence on social media and out in the public sphere, I found that I was lacking. I didn’t blog very much. My posts about #BlueFridays had gone to shit and my @Kikisbetes Twitter feed wasn’t very active. Hell, my profile picture on the account doesn’t even look like me anymore. But now as I reflect on the past six months, I realize that I haven’t let my advocacy die. My social media advocacy, might have been impaired for a while, but not my roots for the work I was actually doing. It just goes to show the world we live in. More importantly, the world I live in– if you’re not on social, you don’t exist.

During November 2015 I made an offer to a nonprofit from the Brighton Park neighborhood here in Chicago to speak to groups about diabetes for free. I thought, “Why not get out there, meet people in the community and spread some diabetes awareness?” I wasn’t working regular hours and had time during the day to dedicate to hear myself talk about something I was a supposed expert in. Not an expert– just blessed by autoimmunity.

Needless to say, they took me up on the offer. I was able to speak to a group of mentors who worked with parents and their children. I was there to let them know about diabetes awareness, symptoms and preventative measures. A few months later, I spoke to a group of teen moms about what to look out for in their little ones, the importance of taking care of themselves while pregnant and why nutrition is of utmost importance to learn and be aware of.

The flame burns eternally inside me to work and advocate for those who may have or have diabetes, including myself. It’s in my head all the time and every chance I get, I talk about what I know, what I’ve learned, what I can do better and how we can help others educate themselves on having this disease (or disorder, in my eyes, if you’re Type 2).  Learning that others have issues makes me want to work harder for them and myself, making sure that I don’t let my health slip.

In the end, I’m still here. I may not take a picture of myself for #BlueFridays and may only sporadically Tweet about my drops and low blood sugar levels, but know that I’m doing whatever it is that I can to help those around me in their battles with diabetes. My diabetes advocacy will never die.

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Filed under Diabetes, Doctors, Health, Stories

The Drop

Earlier tonight, after a day of working out and hanging out with my family, I came home to relax and as I awoke from a nap, I realized that my blood sugar was rapidly dropping. It’s like feeling that someone has altered your equilibrium.

You’re weak, yet you can walk. You’re unfocused, yet you know what you have to do. You think you’re relatively low when you feel the beads of perspiration emerge from your pores, yet you don’t really know how low you are until you see the number.

Tonight, my number was a 33. Yeah, that’s totally not normal. In recent days, I’ve dropped to 44 and 45. I know, I know I have to watch it. Scottie Pippen’s number is the straw that broke the camel’s back. Sorry for the cliche statement.

So as anyone who can express their thoughts with words, I wrote a bit directly on my Facebook page using my phone while laying on my bed, t-shirt still soaked with the sweat from the drop, feeling that at 9:30 p.m. I was going to go to bed just to wake up refreshed and start over again tomorrow. However, I started feeling better, washed the dishes and here I am, making a long overdue blog post out of the Facebook post that is too long for anyone in their right mind to read. It’s too long for social media, but hey, that was my outlet.

With that being said, here it is. The Facebook post no one should have had to endure without clicking on a link to my blog. Thanks and have a good night.

You never realize how much you take your body for granted until its use is challenged. For people with diabetes, the thought is always in the back of your mind.

You feel every time your blood sugar goes up, each time it goes down and always have the desire to feel the best you can. You’ll give up favorite foods, sacrifice sleep and succumb to stabbing your fingers just to keep your body in check.

You’ll never really have a peace of mind, no matter how many devices you have attached to your torso. However, you’ll find it pretty cool to make light of the situation by calling yourself a cyborg and knowing that it really is true.

As someone with type 1 diabetes, your blood glucose does drop to the point of fear. Knowing that you might black out before the orange juice hits your lips; feeling bullets of sweat drip down your face, your back; hyperventilating even as you shove glucose-increasing food in your mouth and praying that the feelings stop as quickly as they came. They usually never do.

The situation quite literally knocks you out. Your body feels like a rung out towel. You look as though you did an hour of cardio, hair and shirt wet, leaving you feeling cold, even in the middle of summer. You want to sleep, giving your body time to bounce back from the low that might have killed you, had you not felt it. Tunnel vision, lack of leg function and weakness is not foreign in these situations, making it scary to live alone; making it scary just to think about not being able to function. Everything you take for granted is questioned.

As you level out, things slowly get back to normal. But you’re impacted. You’ll never forget the feeling. It makes you want better. Makes you hate the disease you didn’t ask for. Makes you wish you had a normal body. And in the end, you know you’ll never have what you want but ultimately, the education, experiences and lessons learned have made you everything you are and everything you’ll ever be.

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Filed under Complications, Diabetes, Health

Hope? Is that the right word?

As much as we all want to believe there will be a cure for diabetes, especially Type 1, in our lifetime isn’t it still a reach?

Happy New Year to you, too.

For as long as I can remember, there has been plenty of talk regarding a cure, whether that was in the form of an artificial pancreas (which would help to manage diabetes as normally as possible) or the use of stem cell research to find a way to replenish the dead beta cells. A cure would be great but at this point, the fact that we all use insulin pumps (or something that’s technologically advanced) for insulin therapy and continuous glucose monitoring systems, it seems that an artificial pancreas would be much more plausible in our lifetime. A lot of the time, we know the cure isn’t coming, so we settle for the best that we can get.

But is it really settling? I guess that’s the most that we can do as people living with an autoimmune disease. I mean, had it been back in the 1800’s we all would have been dead by now. It’s not a morbid thought as much as it’s the truth. We are attempting to adhere to every single bit of technology so that our life is “normal,” and we don’t die from the inability to care for ourselves.

The more and more you hear about advancements in research, the more and more I ask, “So when are the trials happening?” and “When do we get to try some of this good stuff?” We’re like junkies looking for the next taste of hope in the form of a medical journal article. I even want to have all those different tests done to make sure that I do really have diabetes and not some crazy, unexplainable gene mutation that can be cured by taking a pill.

Now they tell us that they’ve successfully taken adult skin cells and converted them to fully functional pancreatic cells. What? You mean, the answer was in our skin all along? And can you actually replenish cells that have been that far gone from your pancreas? I just have a million and one questions and a lot of the times, no one can answer them or clarify them for me. You know why? Because that research is usually done on rats and nothing or nobody else.

I wonder if it’s an issue with funding or the fact that they realize this is impossible in humans. At this rate we’re going to be taken over by rodents because those garbage eating animals are all going to be cured of their diabetes. I’m wondering about the 370 million people worldwide who suffer from diabetes and more, those who are dying every day from diabetes complications. What about them? Why hasn’t anyone stepped up to actually find an answer to the problem?

I digress. This is a medical breakthrough. They always all are. My question is, when do we actually get to see how and if it can impact humans? Will it ever get to that point? Does this really actually mean anything for all of us who live every day with diabetes?

I guess we’ll just have to wait to find out.

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Filed under Diabetes, Health, Insulin, Research, technology, Treatments

Is That A Pager? And other random things that make me go… hmmm….

It happens at least once a week, more when I’m around people and have to pull out the pump from my pocket. “Is that a pager?” Now, after being asked for like the 500th time, I have some alternate answers to that question.

“Yes, yes it is. Problem?”

“I’m a doctor.”

“It’s actually a morphine dispenser. Want some?”

I can go on and on as to what I tell them and what they ask me. Sometimes they ask if it’s an iPod or something. Yes, it has internal surround sound. Beat that.

There are other things that we people with diabetes use that typically other people want to use just so that they know what’s going on in their bodies, like a CGMS. “Really?” I thought as I read a comment on my Instagrammed CGMS photo from the gym. “I need one of those for my workouts!” it read.

Here I am, not wanting to use the damn thing because of pain and comfort issues, and this guy wants to use it because he’s a workout freak. Can’t they make something like that for the general public? Make it more painful while you’re at it.

The fact that we live in a data driven society makes me weak with an overwhelming nausea. Fitbits, pedometers, heart monitors, work out apps, calorie counters, spread sheets, all that good stuff that people look at and collect is just too much. The first time the doctor took my pump and downloaded all the information it had stored, I was going to throw up. It was like he was reading my diary.

He knew when I took it off, when I didn’t check, could assume why I didn’t check and why I did (and he was right), could tell me when I ate, how I slept and even knew my deepest, darkest secret! (Just kidding on that one, but they can also see when you take it off during “intimate times.”)

They gave me the print outs of all the information that they downloaded off the tiny purple MiniMed and I was overwhelmed, confused and wanted to faint. Did I really have to know about all the numbers and trends and graphs and data points in order to know I felt good? Did I have to know all of that so that I could check my blood sugar and make a smart decision on how much insulin I was going to take? Normal people don’t even know their blood sugar levels on an hourly basis, yet we were getting it every five minutes. Oh, how jealous must those data nerds be right now?!

I find it interesting that diabetes is such an epidemic that everyone is willing to test you on and question (“You know, I heard that if you…”) yet those same people who are ready to judge really have no idea what we go through or what life is like. When you talk about the pain, the discomfort, the repercussions of the sickness, most people say, “I’d never be able to do that.” Yes you would, modie fodie, because you want to live, breathe, dance, survive. When your life is on the line, you’ll do as much as you can to keep it.

After feeling humiliated and naked after they checked out my data points, I decided that I’d have to be really good and not try to mask things. When you have diabetes, your numbers tell it all. It’s like that idea that you can’t hide what you eat because it shows on your body. I can’t hide what I’m doing to myself because it shows on the CGMs. Caught! Red handed!

Sometimes it’s not about the management of the actual disease as much as it’s about the conditioning to keep things on track. It becomes clock work after a while. I wake up in the morning and grab my machine on my way to the bathroom to wash up. I test and brush my teeth, then go along my merry way. That’s my morning, before I make a smoothie, work out and clean something.

Once you do something for 20 days straight, it becomes a habit. How about if you do it for 20 years straight? I think I’ve skipped checking a few days out of those years, quite honestly.

Now I want to know– if you have diabetes, what situations or things have you found yourself in that make you go “Hmmm…”? Tell me! I want to know! 

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Filed under Culture, Diabetes, Health

Being Healthy Isn’t Profitable

It’s been another long while since I’ve written, but I feel that it’s time to do so again. The time seemed right, so here I am.

A few months ago, I started thinking about how much money I spend on diabetic supplies a year. It’s well into the thousands and I thought to myself, “Wow, those girls at work don’t have to worry about this. They can save or spend that money on things.” I was a tad bit jealous, not only because I’m an Aries, but because well, they technically took home more of their money than I did. Mine went to life support.

Then, I went to see my doctor. Because I have high cholesterol and it runs in my family, my doctor has been talking about a pill. “No,” I say every time shaking my head side to side. “I’d rather try to lower it naturally than to take any medication.” See, the way I look at it, insulin is not medicine. Insulin is a necessary hormone needed to live. Without the hormone we die.

I don’t want to take medicine. It was a decision I made when I realized how much of in control I could be of my diabetes and I decided to take full ownership of my body. But how much more would I have had to pay every month for cholesterol medication?

If my body didn’t crazily decide that insulin was bad for it, I would still be making it myself. If it wasn’t for that, I’d be healthy, paying for maybe aspirin or cough syrup once in a great while as opposed to steadily paying about $300 a month for the rest of my life. It’s slightly jarring if you think about it.

Thousands of dollars for each person that  has Type 1 diabetes in this country. That’s millions in the pockets of these pharma companies who just so happen to be in charge of creating the “special serum” that keeps us alive. We live at the mercy of these companies! And this is just ONE of the many chronic illnesses that exist.

From cancer treatments to thyroid medications, if you’re sick, you got to pay. It’s going to keep you alive and well. Wouldn’t you pay to keep yourself alive, defying the entire theory of “Survival of the Fittest”? How much is your life worth?

The more you think about it, I don’t know if it necessarily gets depressing, but the truth of it all makes it dreary. And once again, I’m consumed with numbers and the handling of my life.

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Filed under Diabetes, Doctors, Health, Insulin, Stories