My Dad’s Story

This isn’t the first time I post about my dad. I’ve made it pretty clear all these years that he’s the reason why I started advocating for people with diabetes in the first place. My own diagnosis was just a coincidence, I guess. But this is probably one of those post that hurt because 1) this is yet another Fathers Day weekend I won’t get to celebrate with him, and 2) I’ve been struggling with my diabetes management lately. The first reason is obvious, the second is just because my dad, his dead and my pain are a reminder of what can happen to me if I don’t get back on the wagon and stop making excuses.

daddyThe year 2000. I had been married for less than a year, I was starting a whole new life in Canada, getting adapted to everything, learning a new language, trying to make peace with the fact that I wasn’t mommy and daddy’s little girl, but a married woman away from home. I was happy… until June 30, when my brother called me to inform me that the father I had hugged good-bye 6 months ago and seemed in good health, had had a massive heart attack and he was likely not going to make it. So I went back to Colombia and went straight from the airport to the ICU to see my dad, with the authorization of the doctor because my flight arrived past visiting hours. I was in shock, there were cables and monitors everywhere,  he was sedated, and on a ventilator. The nurse told him I was there, but for me he was already gone. I knew it in my heart I was there to say the last good-bye.

11 days of torture went on, and each one of them I spent outside the ICU with my family hoping for a miracle, but knowing the outcome wasn’t going to be good. The doctors explained what had happened, how diabetes had made my dad’s heart vessels so thin there was nothing they could do. His heart condition was silent, he never had any symptoms before. He had struggled so much with it despite trying to take good care of himself and having a loving wife who understood his needs. He had retinopathy that responded well to treatment, and he once had to deal with the possibility of a toe amputation that was avoided thanks to good doctors and my dad’s discipline. I remember being scared for him sometimes, but at that time I really didn’t grasp the damage diabetes was doing to his body. He was a hard-working man, who never complained and who was active until the day he got on that ambulance.

On July 10, 2000 as I saw his heart rhythm diminishing, I went out of the ICU and I told God it was OK… he could go. His kidneys had started failing a couple of days before. A little before 6 p.m. the nurse came out to tell us they had been trying unsuccessfully to get his heart going for the last 20 minutes. This is probably too much information, but there’s an image that will never leave my mind: the one of my father’s muscles still contracting after the shocks with the defib. And just like that, he was gone… my dad was gone. He was 64 years old, was married to my mom for 36, had 4 children, 1 grandchild, and he left a huge hole in our lives. Diabetes took him away. I will never know if he knew I was there with him, but I really hope he did. The rest is my personal history of advocacy, my diagnosis, and my efforts to understand it all.

There’s a part of me that feels that no matter what I do, things will be the same for me. I know it’s wrong to think that way but diabetes is such a treacherous thing, you can be doing all the right things and still end up in the ICU. However, I also know that as long as I’m allowed to live, I have to do the best I can with what I have, and sometimes I know I don’t do it, mostly because I have excuses but also because diabetes and recurrent depression are a shitty combination (pardon my French), and I guess I’m just coming to the realization that I’m not getting any younger.

I know that if my dad was still alive, he would be giving me all the support I need to manage this condition, not only because he had it but also because I know he loved me so very much. And that makes me feel like a big hypocrite sometimes when I purposely don’t take care of myself out of laziness, lack of motivation or simple diabetes burnout (OK, not so simple but you know what I mean). I do great for a few months, fall off the wagon, get back on again… It’s such a stupid roller-coaster. Sometimes I just don’t want to deal with it, or I think I can’t do it… so I think about my dad and what happened to him; how strong he was and the example of resilience and responsibility he always gave us.

The sad thing is that as I’m writing this post I still don’t know where to start to take the right road again, but I know I’ll figure it out. My dad is my guiding light and wherever he is right now I know he wouldn’t want me to go through these things without talking about them or ignoring them. I have his memory to honor.

Diabetes Art

D-Blog Week 2013 – Day 6: I don’t paint, I don’t write poetry, I don’t play any music. I could sit and come up with something because I’m creative, but instead I have chosen to share a poem about resilience, the ability to recover readily from illness, depression, adversity, or the like.

I believe we’re all resilient when living with a chronic condition. We get knocked down, we get back up and keep on going no matter what. Mostly because we have no choice, but also because it makes us stronger.

Invictus
by William Ernest Henley (1849 – 1903)

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Listen to the poem on Classic Poetry Aloud.

Freaky Friday

D-Blog Week 2013 – Day 5: Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

This is a tough one. If I had the choice, I would prefer to have NO chronic condition. Mostly because the word chronic means it’s a pain in the butt you have to live with every single day and most likely has no cure. I thought about it, and the first thing that came to mind was hypothyroidism… but I already have that, got diagnosed when I was 17 and taking that little hormone pill in the morning doesn’t take much of an effort. But there’s not switching; instead I got lucky and got both. So no, I wouldn’t switch, nor I wish diabetes or a thyroid disease on anyone.

compassionThat being said, when you deal with a chronic condition and have the chance to share your experience and communicate with people who are going through something similar, I’m completely convinced that it makes you more compassionate. Being part of the DOC and interacting with other people who are dealing with diabetes has definitely made me more open, less judgmental, and more prone to walk in other people’s shoes. I’m less quick to anger when someone disagrees with me, and I understand we all have pain at different levels.

I’m the person who likes to help, I’m the person who wants to be there for a newly diagnosed patient, I’m the person who will never give anyone the pity look because I hate pity looks. I’m the person who will try to empower others and give them the tools they need, at least when it comes to sharing their story.

We all struggle daily but when we know exactly what that struggle is like, I believe it changes us in a positive way.

Accomplishments Big and Small

D-Blog Week 2013 – Day 4: We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered, making a tough care decision, etc.

Self-acceptanceI think my biggest, most recent accomplishment is self-acceptance. I’ve spent most part of my life being extremely hard on myself, or letting other people’s opinion of me affect me. I’ve let it destroy part of who I am to the point that I let others convince me I had to be different in order to be happy.

Truth is, the moment I stopped and accepted myself with every single one of my flaws (physical and emotional) I finally understood that I don’t have to be different, or think differently, or change who I am or how I feel.

So what if I’m overweight? That’s up to me to deal with and change if I want it to change, not because of what others may think of me. The more people I meet, the more I realize they’re looking way beyond my extra pounds.

So what if I deal with depression and anxiety? I didn’t choose it, I do the best I can. I’ve been dealing with this since I was 19 and yet I’ve managed to live a normal life. People who have judged me or given up on me because of it were simply not strong enough… not as strong as I am.

So what if I have diabetes, hypothyroidism, PCOS and can’t conceive a child? Well, tough luck… but this is what I was given and I can’t let it keep me from being happy. This is me, this is my body, I do the best I can.

I could go on and on, but one thing I can say out loud is that I may not like myself every day of my life, but I certainly like myself way better than I used to. And that, for me, is my biggest accomplishment.

Memories

D-Blog Week 2013 – Day 3: Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

There isn’t only one memorable diabetes day for me. This condition has given me enough memories to write a book. Starting by losing my father to its complications, to being diagnosed in a bizarre way, and then becoming an advocate. But since I’m being asked for one memory, I guess I will have to tell the story about how I became a co-host for the DSMA en Vivo show… or just the first day of the show.

After months of discussing the idea with Cherise, we finally were ready to launch. I had already been a guest on the DSMA Live show, which was really funny, and I still listen to the podcast sometimes just to make fun of my Spanish accent. But being a guest and being one of the hosts are completely different. As a guest you can goof off, you’re the sensation of the show and people want to listen to you. As a host there is so much more to think of, and let’s be honest… have you heard the first En Vivo show? I personally think it was a disaster of sorts.

First my speakers volume was all the way up, so I was getting this horrible feedback that I had no idea of what to do with. Then it was so improvised and my first time on the “radio” that it all felt like talking mostly to the wall. My Spanish is impeccable and I tried really hard to come up with something good to say since we didn’t have a guest, but when I listened to the podcast I felt so much shame with all the ummm’s and ahhh’s.

As the show has progressed, I think I’m getting better at it. I still notice a lot of my very Colombian accent and I’m trying to come up with a more neutral way to talk. But that’s another story. Right now I just feel proud of what I do with Kiki every other Tuesday, and we’re seeing the results. I love having an outlet for my advocacy efforts, and I feel like I’m a valued member of the DOC.

 

We, the Undersigned

D-Blog Week 2013 – Day 2: Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate). What are you trying to change and what have you experienced that makes you want this change?

My petition would be for schools, work places and the like to be fair and understanding about people with chronic diseases with diabetes. I can’t believe the amount of crap I read about people being treated unfairly at their work, or not being given the considerations they need at school. This year has brought more personal stories from friends and family who are either afraid to disclose information or who feel they don’t have the same opportunities.

I recently read a story about a girl who couldn’t make it to a school trip because, I quote, ” the school isn’t insured and also they can’t touch the girl if she has a hypoglycemic attack. All they can do is give her painkillers and a plaster.” Today I read another story about a child who can’t get admitted into a school because he has diabetes. I could go on and on about this kind of stupid situation.

Are we really just going to sit and see this happen, or are we going to demand educational institutions to get their staff trained and ready to comply with the needs of children with diabetes? Diabetes happens, it happens a lot, there is no cure, you better get with the program.

As for work places, I really don’t want to say much, but in my personal experience it isn’t nice to tell your superiors your blood sugar is low and having them treat it like you just need to sneeze. We need more education, and as patients we need to be firm… really firm.

Share and Don’t Share

D-Blog Week 2013 – Day 1: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

Most of the time I’m just nervous about being judged by my medical team. Because for them I may just be the numbers on a test results sheet, but they don’t know what’s really happening to me. My doctor doesn’t know that I struggle with two jobs, a hectic schedule, and that most days I just want to give up and forget about everything. That affects the way I manage my chronic conditions.

Sometimes I’m too tired to remember to take my medication on time, or I’m running late so I skip breakfast which is something I shouldn’t do. Things like that change the rules of the game, and it’s so easy for health care providers to just pretend we follow instructions and work like machines.

I feel like I want my doctor not only to listen to how my body is doing, but to really listen and give me advice when I feel so messed up, being in control is the last thing I can do.

Diabetes and Time Management

time-management-help2013 has been… interesting. A lot of life changes; most of them good (like moving to a new apartment closer to work), some of them sad (my boyfriend lost his mom to cancer). Life has also been extremely busy since the end of February when I got a second job, but that’s a story for another day.

Anyway, between dealing with all the changes and having a crazy work schedule I feel like I’ve been slipping through the cracks with my diabetes management. I don’t feel sick, but I know that when I go to see my endocrinologist this afternoon I won’t get a shiny A1C result like the one I got 3 months ago. Running from place to place I’ve made more than a few unhealthy choices when it comes to eating; thankfully I have a boyfriend who likes to cook healthy, so at least I get to fit some healthy meals in. Still, frustrating because time management and diabetes management seem to be a huge problem for me these days.

So today I find myself afraid of going to  see my endocrinologist. Or maybe it’s just shame  because at the end of the day I feel like I have nothing but excuses for my poor diabetes management, even if people around me tell me they don’t blame me because they’ve never seen someone so busy, and they have no idea of how I do all this. But I’m not going to cancel/reschedule my appointment; it only adds insult  to the injury.

This is the first time in my life when I hardly have any free time—the little I have I spend it trying to get some rest—and I’m here wondering if I’ll ever get the hang of this. How do people manage? All I can say is that I’ve had it easy for a while, and I know I’ll figure it out at some point, but right now I’m not so proud of myself when it comes to taking care of this body.

Suggestions/ideas are welcome. 🙂

Advocating and Life Purpose

About a month ago, when we had Manny Hernandez—president of the Diabetes Hands Foundation—as a guest in our DSMA en Vivo radio show, I got reminded once again of why I do diabetes advocacy. He explained it very simply, very clearly, that many of us decide to advocate for others because we’re looking for purpose in life. We may have many things figured out, but sometimes we hit that wall where we start feeling there is something missing. And that’s when service comes in.

advocacyFrom my mom I learned a quote by Rabindranath Tagore that reads “I slept and dreamt that life was joy. I awoke and saw that life was service. I acted and behold, service was joy.” From my mom I also learned compassion and the fact that thinking less of ourselves and more about others is what fuels our spirit. And when it comes to diabetes advocacy, I’ve discovered that throughout life’s challenges, being there for others makes it all easier for me.

Last year when my 5-year marriage ended, I went into advocacy mode full on. I tried to participate as much as I could, I gave my time and effort to the DSMA en Vivo radio show, I attended conferences and meet-ups, and that kept my mind from sinking into an abyss. So not only I was helping others, I was doing a great favor to myself.

As my life changes and improves, and I find myself in a much happier place after many years, I want to do more for the diabetes community. Sometimes I feel like I’m taking on too much, or that I’m promising things I may not be able to do; and that’s when I have to have faith in myself and believe that I’m as good as anyone else who wants to be there for people with diabetes.

Fortunately I’m not alone. I have an amazing group of people encouraging me and each other so we come up with initiatives and ways to help and raise the diabetes community voice. And when I get to interact with these people every day, I feel extremely lucky.

So I guess this is a thanks to all of you, members of the diabetes community, and especially to the leaders who have trusted me to be part of either advisory boards, committees and such. The rest of the work is in my hands and I will try to remind myself that this is my life’s purpose every single day. Because being a diabetes advocate is a blessing to me.

ADA Step Out Walk 2013

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I just signed up to participate in the American Diabetes Association’s Step Out: Walk to Stop Diabetes. I’d like to invite you to support me in my efforts by registering to walk with me or making a donation in support of my efforts.

Chances are, you also know someone who has been affected by diabetes and you already know how important it is to stop this disease.

By supporting me, you will help the American Diabetes Association provide community-based education programs, protect the rights of people with diabetes and fund critical research for a cure.

Will you join me by visiting my personal page and making a donation?

The power we have together far outweighs what I can do alone. Please join me in this great cause—it would mean so much to me!

Thank you!