Tag Archives: happy

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

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

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

So here we go.

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

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

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

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

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

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

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

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

To these incredible people, I say THANK YOU!

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

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

5. I’m grateful for my parents. 

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

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