Category Archives: Stories

January 10, 2018 · 3:59 pm

Remember when 2020 seemed futuristic?

It’s the beginning of 2018 and it’s time to set those resolutions, right!? Not so fast.

In an exchange with someone at work, I proclaimed that I’m really not about resolutions because I usually make goals. And with a short break between the past year and the current year, it’s easy to get your head in order and your priorities straight. Time off is an absolute blessing.

Additionally, I had been going through a major burnout the end of the year. To be quite frank, I wasn’t eating well, I was drinking too much and my goals seemed so far off in the distance, it didn’t really matter to me whether they were going to be reached or not.

So what did I do? I set myself up for a refresh. For our Secret Santas at Christmas, I asked for things I’d use in the New Year to improve upon myself– whether that was writing more than I initially had been or trying something new as a form of exercise– the things I put on my list were going to serve some purpose.

Here’s what I asked for:

  • Pens and journals… ‘cause, duh. And I realized that I hadn’t been WRITING in a while. Typing, yes, and it was also starting to make my wrists and hands ache. Uh oh!
  • A Google Home mini or two… (we bought another one)
  • Socks. Can’t ever have too many.
  • A Happy Planner. Have you seen these things? I started following boards on Pinterest but the whole thing is still overwhelming and I’m about two weeks into 2018.
  • A new gym bag. YAY!
  • Makeup brushes… for those days I feel like I need to be done up.
  • A new endocrinologist.

You got me. No, I didn’t ask for a new doctor, but I did change my insurance plan and in case you didn’t know, in-network and out-of-network doctors can be the difference between having a savings account and not having one anymore. By the way, I’m still paying off a bill from Feb. 2017 because guess what– this dummy didn’t pay attention to the network.

So, I stuck with my plan and found a doctor close to home that works with Type 1 patients regularly. YES! If you haven’t read my other blogs (and I don’t expect that you would have), you would have seen that I’ve been to a variety of doctors and have had a variety of experiences with each of them. By this point, it’s kind of like dating over the age of 30– you’ve made up your mind halfway through the first date.

Within the first third of the appointment, I already knew I had hit a mini jackpot. When you can go to a doctor’s office, not a hospital, and find a representative for your insulin pump dedicated to that office who can help answer questions, is an RN and also has diabetes, it feels like you’ve won the lottery. I was kind of hooked after that.

The doctor himself was nice and talkative, made me feel welcome and didn’t lecture me. “How long have you had diabetes?” he asked me. “Twenty-six years,” I said, I think he knew I had been lectured long enough.

I digress. So, before going to see my new doctor, I decided that I was going to go back to the rudimentary way of keeping track of blood sugar levels: I started writing them down again. Not only was I writing down my glucose numbers but I also started writing down things that I was eating and at what time. Along with that, I was listing carbs and units of insulin I was getting.

I know. Don’t tell me. In this day and technological age, I shouldn’t have to manually write anything down, but call me old fashioned; I like paper and I like to see everything together over a day’s time.

As you can probably assume, I’m holding myself accountable for my actions and what I put in my mouth. I’m watching my carbs and I’m trying to get my steps in daily. If it weren’t for this stupid cold, I’d be working out right now. I hope to get on that this week and get back into a daily regimen that will give me the results that I saw a few years back when I was dedicated.

This can all seem for superficial reasons, right? Like, I’m getting married soon. So many people have been trying to remind me of that recently and although I’m excited, I’m not allowing that to be the beginning of my life. I’m alive right now and there shouldn’t be anything preventing me from living to my full potential.

Just like I didn’t become the woman that I am because I met my fiance, I’m not letting different milestones define who I am as an individual because I am me 24/7/365. No offense to the wonderful man I’m about to marry– I definitely found someone who compliments my character and who is my partner in everything I do– but I am my own human.

So here’s to 2018– a year in which we will define ourselves for ourselves; in which we’ll reach for the highest mountain and tallest branch; in which we will achieve our dreams and make wonderful memories; in which we realize just how much we have to be grateful for. Here’s to us.

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September 12, 2017 · 8:38 am

How to Feel When A Product Actually Works

I’m getting married in less than a year. If there’s anything that comes along with the happiness and dread you feel planning a wedding, the pressure to look impeccable is also a burden to bear. “Aren’t you supposed to be on a diet for this wedding?” we’d see, commented on pictures of food on Facebook.

But when aren’t we pressured to look our best and be at our best, meanwhile hypocritically telling women to embrace their curves. Which is it?

On top of that, we live in a complexion focused society. It’s a nicer way of saying “racist,” I guess, but a way to drive home my point.

So, naturally, I’ve begun focusing on my appearance more and more as time goes by. I’m looking at my weight, watching what I’m eating, looking at the length of my hair, the whiteness of my teeth and the pores on my skin. On top of that, looking at my vitiligo.

I wish I could plan where the color was going to disappear from next, but I can’t. I wish I could at the very least, design my spots so that applying makeup wouldn’t be as complicated as it can be.

Before my sister went with my parents to Mexico, and before our engagement shoot, she took me to Sephora at JC Penny here at Ford City Mall. Though 7 years younger, she knows more about makeup than I do. She wanted to take me to get some new foundation, eyeliner and anything else I may need for the shoot. I sat down to try on foundations with my sister giving her opinions. I saw the makeup on my face, but didn’t see a difference between the brands. I wasn’t used to looking at that type of thing. Instead when I looked in the mirror, I looked at how the foundation looked on my spots. How much correction did it give me where I didn’t look out of place anymore. Was it going to color me in or make me all one color? Was this breathable makeup, or paint?

I had accepted the vitiligo some time ago, already. I’ve learned to laugh at myself as necessary, make it a point to talk about it instead of ignore it and understood that no matter how much makeup I may pile on my face, I wasn’t going to fully cover or erase my spots. And I was fine with that. Sure, I hated that I couldn’t tan and be darker anymore during the summer and that if I forgot sunscreen even for 30 minutes outside, something was going to burn. But it’s purely cosmetic.

About a month ago, I was on a group page on Facebook and came across a post from a young woman claiming that she was working with this great company that has figured out how to reverse vitiligo. I clicked on the link. I saw testimonials. That was the first thing I saw. A mother talking about how it helped her little girl; a young woman who developed it later in her life claiming this had helped her and a man talking about how he’s seen the effects of it. No complaints, obviously. The claim that it was all natural caught my eye as well.

I started to think about it. Should I reach out to this girl? Would I be able to talk to her and ask questions? I shared it with my mom and sister. “Do you know if it really works?” I didn’t know what to tell them other than I had seen the same testimonials they had. “What’s in it?” my mother asked. I didn’t know that either. I thought about it a little more. What’s the hurt in asking and trying? This is no more a part of me than was my full color 5 years ago.

I got in touch with the young woman and she was super excited to speak with me. We messaged back and forth and I told her I was a diabetes blogger and that I had written about both conditions in the past. I showed her posts where I spoke up about my vitiligo and where I had been an advocate for diabetes. She definitely wanted to get me on the phone.

I called her. She sounded young, first thing I noticed. We exchanged stories. She was also from Chicago, now living in LA. She said that everything she saw was so great. Yeah, I kind of know that. She liked it so much she shared it with the owner of the company and he wanted to talk to me, too.

A millionaire Latino with an accent, he explained how he got the best of the best together to try to find a “cure” of some sort for vitiligo. His primary priority is for children, so that they’re not teased or looked at differently, helping them young so that they can, I suppose, grow up “normally.”

You have to fix it from the inside out, they said, because it’s an autoimmune condition. The funny thing to me is that the owner mistakenly asks me if using insulin means you have “worsened” diabetes. No, I said. And I had to explain that whether or not you take insulin doesn’t mean your diabetes is worse. I was surprised that he wouldn’t have known that. He didn’t claim to be one of the doctors, I thought. Just the guy that orchestrated this whole thing.

Ok, I said, I’m interested in using this product. What’s in it? “There’s nothing in it that you can’t buy at the local GNC or Vitamin Shoppe,” he said. “It’s just the way that the ingredients are put together,” he concludes. Sure, I said.

I warned him of my cynicism. “Growing up with a condition that strangers think they have a cure to is the breeding ground for cynicism. I’m skeptical of a lot, too.” I figured I’d reinforce my feelings on the subject.

They were going to let me try it. “All we want is your testimony,” they said. That sounded fair. If anything, I could really write truthfully on the matter since this is something affecting my body. I suppose it’s also important to note that I didn’t talk to my doctor before taking this. They tell you that you should. But who does? When I received the bottles in the mail, I read the ingredients. When I understood, and could read every vitamin in the bottle, I stopped worrying about it and started taking the instructed tablespoon every morning before eating breakfast. One table spoon. That’s it.

I took pictures of all my spots so that I could later compare and see a change, see the difference that I had seen on the testimonials. If it helped those people, it could help me, too, right? I wasn’t buying into Jack’s magic beans because I believed the pictures. At least, I think I wanted to believe them. Taking this concoction of vitamins was like buying a lottery ticket for the Mega Millions. You know what I mean—for a minute you believe you have the ticket to making your dreams come true. That this time, you actually believe you have a winning ticket. If not the major jackpot, then enough to buy you a new house and save up for future inheritance. As you drive yourself home, you feel safe and secure, almost excited, because tonight you may actually find yourself having a heart attack from the shocking truth that you could be a multi-millionaire. That’s how I felt taking this vitamin shots (in liquid format).

Every day, I thought to myself, they told me it usually affects your face first. I didn’t see any changes on my face. I kept taking it. Every day, I took this pink, gooey liquid that smelled like cat food and looked like Italian salad dressing.

I haven’t taken any more pictures since the first time because I didn’t see a difference.

About two weeks ago, before leaving for Michigan for a weekend trip, I had come out of the shower and was going to brush my teeth. I wrapped the towel around my chest as I looked at myself in the foggy mirror. On my chest, directly under my chin I have a series of little white spots. I noticed that in two, little brown freckles were filling them in. My natural color was filling in on them and as I started to look at some others on my arms and shoulders, I noticed little freckles in a couple of them. There weren’t many freckles, at least not enough to touch or look filled in.

I showed my fiancé and my sister who both saw it and said, “Wow, it actually worked?” There’s a part of me that’s super excited to keep drinking this GoodbyeVitiligo, while there’s still some skepticism there. I don’t want to put my eggs all in one basket because I’ve never had this opportunity before. This is the first time something that people said would work, worked. It’s a small example so far, but for right now, I feel like one of those people in the testimonials.

I also want to be clear, that I decided to try this because 1. I could read every vitamin and had taken some of them already. 2. It wasn’t a lot to ask in exchange to try it. 3. If it didn’t work, I knew I would be OK.

I went in without any expectations. So, the fact that I see this little improvement is something astonishing for me. I would like to have my skin color back for the pure safety of it (I hate getting burned and I don’t always remember sunscreen) and quite honestly, I would appreciate going back to the way I looked. I know I’m not an ugly person regardless of my color and how much of it my face and body has. However, I would want it all back if I could have it.

I’m going to keep taking it. I want to see if this continues to work. If it does, I’d consider myself a very lucky woman. Not only would I gain my color back, but I would have strengthened my immune system in order to beat this condition. That, to me, is miraculous.

 

 

 

 

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January 17, 2017 · 8:59 pm

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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November 21, 2016 · 7:33 pm

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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November 1, 2016 · 1:21 pm

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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August 30, 2016 · 10:15 pm

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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March 22, 2016 · 11:41 pm

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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September 15, 2015 · 10:00 pm

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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May 31, 2015 · 8:50 pm

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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May 18, 2015 · 7:56 pm

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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