Category Archives: Stories

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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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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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

Does diabetes really disable me?

Through work, we are voluntarily asked to fill out a questionnaire regarding disabilities– making sure they hit quotas, I suppose, on supporting the people with disabilities in this world. I voluntarily answered the questionnaire, like usual, not afraid of any question that should come up, especially because I don’t think of myself as having a disability.

As I reviewed the questions, I saw it on the list: Diabetes. All of a sudden, a trigger went off in my head and I almost closed the questionnaire because I didn’t want to admit that I had a disability. Would anyone?

In the end, I didn’t close it and I ended up finishing it, however there was a feeling of anger and resentment that went through me. I thought, I’m never going to be like everyone else. I’ve come to this realization many times in my life– it wasn’t something new to me or to anyone. In fact, I’ve written about how diabetes made me different multiple times and I wasn’t ashamed of it.

But now, work knew. The people who employed me and those above them now all knew that I had diabetes. Again, this is not something that I’m ashamed about, however it is something that I’m weary of especially because to those who don’t know me, I’m another person with diabetes– enter all of the stereotypes that screw with the mindset of those who are ignorant to the disease.

Was it really a disability? A few hours later that night, I told one of my best friends about the questionnaire. “You don’t have a disability!” he said to me, so confidently. I smiled because I was grateful to him and to all of my friends who feel the same way.

It’s not a disability simply because I don’t treat it like one. I technically have not been disabled from doing anything in my life. Besides wanting to maybe be in the peace corp or a fighter pilot (because I mean, who doesn’t want to do something like that in their life?), I’ve done everything that I’ve ever wanted to do. Sure, a vital organ in my body doesn’t really work the way it should and I’m part cyborg because of the pump that I wear on my hip, but in no way was that a disability.

I take care of myself as best as I can. Sometimes that does slip from me because of my busy lifestyle and all the different things I get myself into. At times, I don’t check myself as frequently as I should, but I always keep my pump on. That’s one thing that I can’t not do; I can’t not take insulin. It’s not like taking aspirin or a pill of some sort. It’s not a medication that I’m taking to help me live. It’s a hormone that I NEED to live.

The kicker here, is that diabetes can become a disability. If I let it slip enough, I can go blind, lose a limb, lose my life. This is why I continue to go to the doctor so that I can stay on top of my issues and making sure that I can prevent any harm that may come my way.

It’s important to track and important to know what’s going on in my body, since it’s not something that I can take advantage of and not think about. I was told to go back to the continuous glucose monitoring system to help better control myself and I have. There are dietary restrictions that I’m putting on myself just out of mere knowledge and understanding that certain foods don’t cooperate with me. I have to do these extra things so that diabetes NEVER becomes a disability.

There may be sacrifices, but I don’t see them that way. I see them as ways to live a better and longer life. If not eating rice and bananas means I get to stay here and enjoy life for a few more years– then so be it. Here I’ll stay.

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Filed under Complications, Diabetes, Health, Personal

Shameless About My Spots

This past year has brought a lot on me. Life doesn’t get any easier as you get older, you just get better at it. In the past few years, I’ve decided to take my health into my own hands and do the best I can with my body and what I put into it as well as how I treat it.

Most recently, I’ve decided not to be ashamed of my vitiligo. I decided to tell people that I had it and face the fact that no, it’s not a makeup malfunction– it’s a skin discoloration disease that again, I cannot control. Seems to be the story of my life.

It’s one thing to get sick due to some cause of your own and a completely different thing when you realize that you did nothing wrong to deserve what comes at you. And that the fact that you are “sick” is because your body decided to turn on you and kill its own cells. Lovely isn’t it?

I have become more comfortable in my own skin– like, really. There are days, like today, I go out without makeup because I didn’t feel like I needed it. It’s not to say that people don’t stare at me, because they do. Or I see them trying to look me straight in the eye instead of at my “spots” because they feel like somehow it’ll be offensive or because they’re uncomfortable. Mostly, they don’t look because it makes them uncomfortable and surprisingly I’m OK with that because it’s not my insecurities, it’s theirs.

I wonder what people would say if they really spoke their mind. You know, like those people who say, I could never give myself shots or check my blood sugar all the time– I don’t know how you do it. Well, you do it because you have to. I wonder how many people would say to me, “I don’t know what I’d do if I suddenly lost pigment in my skin and had to face the world as someone with two different colors on my skin.”

I wonder how many people would actually be ashamed. I mean, we knew that Michael Jackson was, since he sped up the whiteness and bleached his skin to level himself out– color wise. Apparently, Sammy Sosa has the same issue. Sometimes, I wonder what it would be like to be all white– translucent, mainly. I look at my brown skin and I love it because I always have. I always loved being tan and dark during the summer. Now, I look and still see my tan skin, but also see my spots– on my knuckles, on my feet, on my face, dots on my shoulders– and it doesn’t scare me. I don’t mind it anymore because that’s just what my body decided to do.

If anything, I’ve realized that there is a reason for everything. I shouldn’t fight it, especially because in the end, it’ll all turn out all right. One color or two, my soul is still complete and even more accepting and well-rounded than before. .

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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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As Long As I’m Alive…

There is not one day that goes by where I’m not affected by this internal bully of a disease. More like an annoying, know-it-all friend who won’t shut up. It feels like no matter what you say, you’ll never be right, even if you really, truly thought you were. Not to mention that they’re always challenging your knowledge and throw a wrench in your plans, and the next thing you know, you feel like you’ve been through an emotional roller coaster and you don’t know what tomorrow will bring.

It’s almost like a bad relationship. Neglect leads to fights, which lead to emotional bouts in your head, leading you to cry tears of frustration, feeling like you don’t know what you can do to fix it and eventually dreading the future with your partner. You get tired and burn out. There is no relief, there is no consoling or anyone to tell you it’s going to be all right, because honestly, you don’t even know it’s going to be all right.

Don’t forget the good days. Those are a double-edged sword. You celebrate the wonderful communication, the fact that it all worked out for the day, and you hope that in 24-48 hours, you feel the same way: happy, warm and balanced.

The internal conversation is messy. If anyone else heard it, they’d think you were nuts. You blame yourself for things that sometimes are truly out of your control. You try to think ahead to guess on what the outcome will be in four hours only to be incredibly off kilter with what your “opponent” is trying to do to you. Yes, it feels like it’s out to get you and throw you off on purpose. “We’re on the same team!” you scream at yourself. “Why is this so hard?”

Don’t get me wrong. Diabetes is sometimes my best friend and we get along. Other times, I bitch about it like there’s no tomorrow and yet other times, I want to punch it in the gut and leave it agonizing over what it’s done to me. Fortunately, for me and diabetes, it is not a person who I can harm.

When you feel out of control, sadly, shame comes upon you. I’m telling you, the more I think about it, having a chronic disease is really like having a bad partner. At times you don’t want to even talk about it for fear of what other people are going to say. “Why do you do that to yourself?” “Why isn’t it working?” “Maybe you just have to take a step back and breathe.” That’s what I think to tell my friends when they’re having relationship issues and it applies to me as well. Ridiculous, huh?

However, this comparison also goes to show you just how emotional and psychological diabetes is on someone. Though it might not seem that bad or you think it’s linear and systematic, it’s not. Every day it’s something new. Whether it’s administrative like ordering prescriptions, verifying insurance, having organizations say they don’t want to cover you or worrying about what you have to pay out-of-pocket to miscalculating carbohydrates, eating too much fruit, having your tubing kink, running out of strips or explaining what the beeper on my hip is for, I deal with some aspect of my diabetes every day.

I’m not complaining. I’m really not. But between letting it out and trying to stay balanced on my own, I really want a break. Other times though, when I’m feeling low and lonely, I’ll settle for a hug.

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