Why I write about my health

November is National Health Blog Post Month (#NHBPM). Wego Health is encouraging health bloggers to raise awareness and help others. 30 days, 30 posts. Here I go…

This morning I told my friend Melissa that sometimes I get tired of living. Yes, I know that sounds horrible and that life is a wonderful thing, most of the time. Then I get hit with several chronic conditions, recurrent depression and a whacky endocrine system, and the first I have to do in the morning is feed my thyroid the hormone it refuses to produce, so I can actually function. Then I have to test my blood sugar, figure out what I can eat, try to do good and still see that number raising. Then I have to remember to take my happy pills because everything else goes to the crapper if I don’t. Every muscle in my body hurts, not because I’m a weakling, but because there’s also an auto-immune inflammatory process of unknown cause. It isn’t bad enough to keep me from living, but it exacerbates during the cold months making me wish I could just stay in bed. And that’s just part of it. So yeah, some days I want to either throw the towel or throw a pity party and eat all the ice cream.

And days like this are the reason why I write about my health. When I sit down and put my thoughts into words, it helps me understand what’s going on with me. I stop and think about the choices I made just five minutes ago and how they affect my health. I stop and think that I’m 37 years old, I’ve had type 2 diabetes for 12 years and I’ve actually done my homework because *knock on wood* I’m still alive and kicking, and I have no complications. It makes me realize that I’ve become so acquainted with my depression, that as soon as the early symptoms hit I know what I have to do and I’ve been depression-free for more than over a year. Writing about my health makes me be aware of my needs and responsibilities, but also of my big and small victories.

Mind you, I’m not a model patient, I’ve had really bad bouts, I tend to forget things on purpose. Yes, you can enter periods of denial and it doesn’t matter how long you’ve lived with a condition/illness. So I write, because writing about my health makes my conditions more real, and because it gives me the opportunity to share with others, mostly to tell them that it’s OK not to be perfect, and that we all have bad days. Living with an illness is not easy, so writing is cathartic.

Advocate and then some more!

This weekend, as we took a break from  the activities at the Taking Care of Your Diabetes expo in Des Moines, I told my friend Marie that every day I strive to do something good for someone, big or small. It comes from the example my parents gave me. That is probably the main reason why I decided to become a diabetes patient advocate, and try to learn as much as I can about how to understand every single person affected by this condition. I don’t do it for recognition; at the end of the day I prefer my name NOT to be mentioned anywhere… I just do it because I care.

One of the things about diabetes (and any other kind of disease) is that when you meet someone who is also dealing with it, it feels like you just added insta-friend powder. The most awesome moment of my weekend came after I shared a lunch table with my friends, and then a lady we didn’t know asked if she could join us. We talked about diabetes, shared what type we had… you know, the usual. And then we mentioned DSMA, of course (Scott Johnson and Mike Durbin were at the social media booth telling people about what diabetes advocates do). When we finished lunch, the lady got up to leave and I gave her my website business card and a Diabetes Advocates brochure I happened to have with me. Her eyes watered up and she asked me if she could give me a hug. She was grateful to hear us say that she’s not alone, that there are people out there who will listen to her and she can count on. And that, my friends, is what makes me so proud to be part of the DOC. Because no matter what I do, I can do a good deed every single day.

This was my first year at TCOYD, and I have to be honest and say that my main reason to go was to hang out with the fantastic people I’ve met in the diabetes online community. But it’s not because I want to hang out… it’s because I love to see them in action. People involved in the You Can Do This Project, inspiring patients to support each other via words of encouragement. Projects like Diabetes Art Day where we learn to express what we can’t with words via art. People like Mike and Marie who took the time to help a very funny old lady when she wanted to check her blood sugar and didn’t know how to. That is what moves me, that is what makes me see my friends as superheroes, people who give big part of their lives without asking for anything in return… or maybe just a hug, like the one I got.

You Can Do This Booth  Diabetes Art Day
There is an excellent article written by Kerri Morrone Sparling on how to become a patient advocate. Everyone should read it. We can be our own advocates and we can help other people. For me it’s all about reaching the community and I’m grateful for being part of DSMA because it allows me raise my voice every week and tell other people with diabetes that they are not alone.

DSMA Live en Español

En un esfuerzo por extender la misión de DSMA con toda la comunidad, hemos decidido ofrecer una versión en Español de nuestro programa de radio DSMA Live para llegar a la comunidad Hispana, no sólo en Estados Unidos, sino alrededor del mundo. Acompáñenos los martes a las 8:00 p.m. CST. Estaré presentando con Cristina Rodríguez de ChicagoNOW. Nuestro primer programa será mañana, 24 de julio. ¡Los esperamos!

Let’s Talk Complications

diabetes complications Last night I had the opportunity to participate in a virtual summit with some members of the DOC. When I received the invitation from Scott Johnson to join him and some people involved in Pharma and social media, at first I wasn’t sure I would fit in the group; there was to be a discussion about Diabetic Neuropathy and my reaction was “Well, I don’t have that… What kind of input could I possibly give?” —But I said yes, anyway; the conversation was eye-opening and it left me with a lot of bittersweet feelings.

I was rather grateful to be able to say that I’m free of complications, and then it hit me. Just because I’m complication-free now, it doesn’t mean the future doesn’t hold any challenges. And how well informed am I about these complications? I wouldn’t put myself in the completely ignorant category, but I’m definitely very close to it. What I know is very vague, very superficial, and usually tainted by the sensationalism of the media. Nobody wants to learn about diabetes and what it can do to your body when the first thing you see is a horrendous photo of a sick foot that most probably needs to be amputated. That’s fear-education and I avoid it like the plague. The sad part is that at some point I end up avoiding it ALL.

How many of us can say that, unless we get diagnosed with something, we actively go and look for information on a certain condition, especially a complication from diabetes? I certainly can’t! I go for my eye exam every year and I’m all happy when the doctor tells me my retina is the most beautiful thing he’s ever seen, and I leave it at that. I don’t worry about it for another year because I’m almost convinced that I’m doing all the right things to control my diabetes. After all, no complications means good control. Ummm… No, not really. We all have different bodies and this is what we were talking about last night. Some people can spend years without paying attention to their blood sugars and develop no complications. Some others can pay attention to every single thing they do and still get them.

And that is why we all should be open to:

1) learn about complications
2) talk about complications
3) approach it from an educational point of view
4) discuss it like patients, not like pharma, doctors or the media

How do complications of diabetes make us feel? What would happen if we got one? Are we prepared? Do we know how to recognize symptoms? Let’s put neuropathy as an example. I was one of those people who thought neuropathy = pain. I was wrong. It turns out I could have diabetic neuropathy as of this very moment and be completely unaware of it. Why? Because the symptoms are vague and can be related to many other conditions. Orthostatic hypotension? I have that… and it’s a symptom! Yes, quite shocking. It may not be neuropathy, but at least now I know I should pay more attention to the things my body tells me.

So, the same way we advocate for finding a cure and talk about our rights, we should be working on discussing complications openly to get rid of the stigma created by the media and other misconceptions. Knowledge is power. Shared knowledge is power.