Sunday, November 23, 2014

The Body With Diabetes: Interview with Christina Elizabeth Rodriguez

Christina Elizabeth Rodriguez
November is Diabetes Awareness Month and for today’s La Bloga posting, I’m so happy to introduce you to Diabetes Activist, Christina Elizabeth Rodriguez.  Christina is a Chicago native, and is active with the Diabetes Online Community, has her own blog at kikisbetes.com, and is on twitter:  @kikisbetes.  Look her up!

Before we get started, I’m adding a few introductory facts regarding diabetes.
First, definitions:  there are four types of diabetes.  Click on each one for more information:  (1) Type I, (2) Type II, (3) gestational diabetes, (4) pre-diabetes.  
Second, technology:  The glucose meter is essential for individuals with any of these four types of diabetes, because it measures blood glucose levels.  With the meter, individuals know exactly what is happening in their body. Guessing glucose levels simply by how one feels can be dangerous, because assuming your glucose number is in no way accurate.  
Testing reveals how much glucose is present in your blood at that moment. The components of the meter are: (1) the meter, (2) glucose strips, (3) lancet.  To test, you take a glucose strip and insert it into the meter.  Then, you pierce one finger with a lancet, placing the drop of blood on the glucose strip. In a few seconds, the glucose number will appear on the meter. There are also continuous glucose monitoring systems and pumps. 
Third, what the meter says:  A normal blood sugar level is considered less that 100 mg/dL when fasting (morning numbers) and less than 140 mg/dL two hours after eating your first bite of a meal. 
Fourth, how to describe us:  We are "individuals with diabetes." We are not "diabetics," because we are not defined by this disease. 

Christina Elizabeth Rodriguez was diagnosed with diabetes Type I when she was 7 years old.  During her lifetime, she has been a passionate seeker of knowledge, wanting to understand her body in order to assist what is not working.  I found her on twitter and have been continually inspired by her passion, her commitment to understanding diabetes, and, in turn, assisting others in diabetes education.  She is a truth seeker!  I had the opportunity to speak with Christina recently and want to share with you our conversation: 

Amelia M.L. Montes:  Thank you so much, Christina, for taking the time to talk with me about a chronic disease that greatly affects the Latina/Latino communities.  First, tell me about your tattoo.

Christina's tattoo
Christina Elizabeth Rodriguez:  It’s a blue circle to represent diabetes.  I took the Chicago flag and instead of two blue lines, I made it into one circle and then added the Chicago stars, the four stars across the middle of that circle.  I feel the empowerment with this tattoo.  People see the tattoo and say, “That’s cool, is that Chicago?”  I say, “Yes, BUT, it’s also representative of diabetes awareness” and then this gives me the opportunity to talk about diabetes with them. 

Amelia M.L. Montes:  And you mentioned that you also wear a pump.

Christina Elizabeth Rodriguez:  People see the pump and ask me if it’s a pager or ask if I’m a doctor.  And I think of responding with crazy answers, but then I think, where will that get me?  So I explain what it is, and what it means to me. 

Amelia M.L. Montes:  So, in what creative ways do you educate people so they will remember details (because diabetes demands learning so much information)?  For example, how do you educate people about the differences between Type I and Type II Diabetes? 

Christina Elizabeth Rodriguez:  I call Type II a “Disorder,” and Type I a “Disease.”  I call Type II a “Disorder” because your body has a malfunction, whereas with Type I, diabetes is an autoimmune disease.

Amelia M.L. Montes:  You’ve had diabetes (Type I) since childhood. Does the disease limit you in any way? 

Christina Elizabeth Rodriguez:  I don’t want to let chronic illness limit me from doing anything, but there are days when I can’t physically do something due to exhaustion, hyperglycemia, or hypoglycemia, and it can weigh on me as a psychological issue.  There are many studies that connect Type II diabetes to depression, but this doesn’t mean people with Type I don’t have depression. 

Amelia M.L. Montes:  Agreed.  It’s definitely false to think that depression only manifests itself in individuals with Type II.  Also, some people feel that Diabetes Type I and Diabetes Type II are two very different diseases.  In some of your articles, you have said there are similarities.  Where are the connections?

Christina Elizabeth Rodriguez:  The cause—the causes are all different but the reasons they’re all called diabetes are because the symptoms and the ultimate effects are the same.  With Type I, I feel all the symptoms twice as fast as those with Type II.  With Type II, their blood sugars are elevated for so long, that they don’t know how normal feels.  With Type I, my moods and symptoms change multiple times [a day] and are so different every day. 

I remember the first time I was on a twitter chat and we were asked how we feel when we do everything right, and then you check your blood sugar, and it’s still high.  I saw answers like:  “I want to throw it [the glucose meter] out the window,” and “I get angry, and then my blood sugar goes higher.” Just reading that helped me feel I was not alone. 

Checking your blood sugar.  Placing a drop of blood on the glucose strip that has been inserted into the meter.  
Amelia M.L. Montes:  I get that—reading diabetes online community comments and feeling less isolated.  You’ve made sure to reach out, educate yourself, be involved with diabetes communities.  How can readers who have diabetes break through the stigma, the shame connected to this disease, which sometimes makes them hide?  How can we talk to each other? 

Christina Elizabeth Rodriguez:  You have to talk about it, and let them know just what they’re doing to their bodies if they don’t take care of themselves.  I always said that if we taught Latino families together [those with and without diabetes] about the treatment of diabetes, the person that actually developed it would be better off.  It really takes a village to cure individuals.  If you get everyone to understand, make healthier choices, and even change their lifestyle, the entire family (or community) will be better off.

Amelia M.L. Montes: How do we do this with our various communities.  Also--do you belong to other communities and how do you navigate diabetes in all of these communities? 

Christina Elizabeth Rodriguez:  Sometimes I feel I’m in three different communities.  The first community is the general every day.  I go to work, and I mingle with people who are not Latino and don’t have diabetes.  Total market experience.  You don’t care what color anyone is—you are just “being.”  The second community is the Latino community who has less resources.  I am very tied to that culture, from the art I have in my house, to the way that I say my name.  The third community is the Diabetes community.  Not only am I usually the only Latina with diabetes, but I also have Type I which is not as common as Type II among the Latino community.  And then I say, how are we going to get these different communities together?  What are we going to do to upkeep your health?  Diabetes isn’t racist, sexist, gender neutral.  When you have diabetes, you can get comments like, “pero no estas gorda” [“but you’re not fat”].  And there is where diabetes education is most needed. So I try to speak from a general diabetes perspective.  I may not know what medication you’re taking, but I know exactly how you feel.

Amelia M.L. Montes:  Was there a time where you were able to educate “on the street.”

Christina Elizabeth Rodriguez:  I was on the bus, and there was an older woman with a woman who seemed to me to be in her 40s.  I heard them talking, about the older woman’s husband who was going blind and how her eyesight was going as well because of diabetes.  And the younger woman also had diabetes and was talking about her A1C (a test that measures the amount of blood in one’s sugar over the period of three months), and I thought, “Holy cow—there really is someone who understands diabetes.”  The younger woman got off the bus and I was trying to figure out how to start a conversation with the older woman without seeming like I had been eavesdropping on their conversation.  So I ended up taking out my glucose meter on the bus, and she said, “Ahhh—tu tambien!  Pero tan jovencita!” [“Ahhh—you too!  But you’re so young!”] And we started talking.  I asked her about her family, and if they talked to their family about diabetes.  I said, “Talk to your kids about it, they may be able to help you.”  It was the most memorable diabetes experience I’ve had.  I ended up overshooting my bus stop by 20 blocks so I could keep talking to her. 

Amelia M.L. Montes:  That is such an important story that, again, speaks to the need for education.  What kind of diabetes education do you feel should be in place for Latinas/Latinos? 

Christina Elizabeth Rodriguez:  The one thing that we have realized is that fear does not educate anyone.  We’ve seen HIV campaigns in Mexico gone wrong, and now Ebola is another perfect example.  We need to put a positive spin on education.  What I’ve found completely useful is that I learned how the body is supposed to work and then I learned why my body is not working the way it’s supposed to. A health class shouldn’t be about just medication or carbohydrate counting.  It should be about how your body is supposed to function and how to get it back there.  I’ve always been interested in the science portion of diabetes. 

Amelia M.L. Montes:  So what are some ways to talk to the public that may be helpful? 

Christina Elizabeth Rodriguez:  Don’t say:  “If you don’t check your blood sugar, you’re going to lose your leg.”  That doesn’t educate.  In order to manage diabetes, it’s important to not let it take you over.  You have to be the one who is leading diabetes, and that’s where education comes in—not scaring people.  There has to be more positivity and empowerment. 

Amelia M.L. Montes:  Agreed!

Christina Elizabeth Rodriguez:  For example, I was at Northwestern, and a doctor explained that if you check your blood sugar only three or four times a day, that’s like taking a thousand piece puzzle, and only having three pieces of it.  The more you know, the more you own the situation.  It’s in your power to do it. 

Amelia M.L. Montes:  Yes—so important.  And regarding checking one’s blood, I’ve become used to testing more often on days when I’m not feeling well.  So, Christina, where do you feel we are now with diabetes education?

A visual explanation of diabetes Type I
Christina Elizabeth Rodriguez:  I feel like there’s a cure for this issue already.  World wide, diabetes costs over 240 billion dollars a year.  I volunteer with the American Diabetes Association (ADA) and sit on the committee for the ADA EXPO that happens every year.  The Chicago ADA chapter is the biggest one in the country.  Everyone who sits on the committee wants to do something to further community education, but it seems that the funding is always for something big:  “The Walk,” or the EXPO that happens once a year draws about 14,000 people.  What I’ve noticed is that the most congested area of the EXPO is the screening section where they will check your feet, your eyes.  It’s a free screening, but without any education. But if you look at it that way, what does it tell you?  You learn that people clearly aren’t getting the attention they need outside of that EXPO.  That means that there needs to be more education, health services, and guidance and that’s just not happening.  There’s nothing in regards to community building.  Community building is about having the time, energy, and efficiency to do it. 

Amelia M.L. Montes:  Are hospital clinics different? 

Christina Elizabeth Rodriguez:  I didn’t have insurance for about a year, and I used this state-funded healthcare situation as a learning experience.  Throughout the experience, I had to ask the right questions and demand proper health care.  I had a nurse once who told me I didn’t have to check myself so often.  Why?  Because the state only gives you enough strips to test once a day.  They will not insure you for more than one strip a day.  How are people supposed to take care of themselves?  So if you can afford it, it comes out of your pocket.  But what happens when you can’t? 

Amelia M.L. Montes:  When you say that you “had to ask the right questions and demand proper health care,” I think about the average patient who will not at all think about asking questions, but instead, simply follows "doctors orders” without bringing a healthy dose of skepticism into the doctor’s office.  But that comes with empowerment.  Because you are active with the ADA and are familiar with medical corporations, what do you say to them? 

Christina Elizabeth Rodriguez:  I’ve been approached by pharmaceutical companies.  I tell them: “You have to teach people about themselves, and how they can manage this on their own.”  This is why, if I ever won the lottery, I would give donations to clinics – not to foundations.  You can donate and donate to foundations, but you don’t know where that money is going.  If there were more funding for community clinics where the underserved go for medical attention, they would have more resources for education and servicing the people who really need it. 

A visual explanation of diabetes Type II
Amelia M.L. Montes:  Your openness and forthright discussions are vital for the rest of us, Christina.  For example, here’s an excerpt from the “Discuss Diabetes” posting introducing you:  “Growing up with diabetes has given Christina a unique perspective.  ‘Ever since the beginning, I’ve always had this perception that I didn’t do anything to get Diabetes,’ she said.  ‘I didn’t choose to have this condition, and if people don’t like me because of it, it’s not my problem.  It’s theirs.  People often say, they’re sorry when they hear I have diabetes.  But I wouldn’t be the person I am today if I didn’t have it.  I likely wouldn’t be such a good multi-tasker or as ambitious.  I want people to know that I believe I can still do everything I want to do.’”  Comments?

Christina Elizabeth Rodriguez:  I’ve grown extremely honest.  When I go to the endocrinologist, there are times when residents who are working with the doctors come in to see me first.  The last time I went, I gave her [the resident] a run for her money.  She asked how I was doing, and I told her I’m tired.  I’m exhausted from having to be my pancreas.  There’s this thing called a burnout, where having diabetes literally gets you down and you’re doing things just to get by.  So I gave her this scenario.  For me, a burnout happens about every six months.  When I told her how I felt, she didn’t know how to deal with it, which is fine.  She was just learning.  But sometimes doctors are also shocked at how open I can be.  I figure, the more they know, the more they can help me.  Being vocal and open and talking about it as much as possible is going to eventually make diabetes less of a stigma and more something that can be managed:  Talking about it and making it a lifestyle change. 

Amelia M.L. Montes:  Are there other challenges for you that are linked to diabetes? 

Christina Elizabeth Rodriguez:  I developed vitiligo, which is skin discoloration.  There are no health repercussions.  It starts off as white patches.  This is another autoimmune disease, and when you have one, you can get more.  There are worse things than having your skin color go away—like diabetes. 

Amelia M.L. Montes:  Christina—thank you so much for your passionate and important words.  La Bloga honors November Diabetes Awareness with your interview today. Gracias! 










3 comments:

Olga said...

Gracias, Amelia, for this interview with Christina on this important issues. This is a good source of information for our community and for anyone seeking to become more informed on the issue. Love the tattoo by the way. And, of course, Chicago rocks! :)

Amelia ML Montes said...

Gracias, Olga. There is always so much to say about diabetes. I like that Christina and others are working to make diabetes education accessible, calling out the issues, making it a cool thing to take charge of diabetes instead of letting it take charge of you. Here's hoping this important information will reach many readers.

Sylvia Riojas said...

I'm so glad I found this interview. It gives me greater insight into the problems my family members with diabetes have, like "burn-out." Thank you for your efforts, Christina.