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.

We All Can Do This

The diabetes online community is full of inspiring people. We are all inspiring to some extent, we all have something share and there will always be someone who is touched by our stories and experiences. That’s the most wonderful thing about the DOC, you never know when you’re going to make a difference in someone else’s life. And that’s why we’re here. But there are people who work hard every day to be a voice for everyone, to make everyone speak, so we can be heard. One of those people is Kim over at Texting My Pancreas, who came up with this wonderful idea called You Can Do This, a project I have yet to participate in because I’m extremely camera shy.

According to its creator, “You Can Do This is a growing community of videos, created by and for people with diabetes, with the aim of providing validation, hope and encouragement through honest talk for the diabetes community.” — And the project is 1 year old today! Congratulations, Kim! And thank you for giving the DOC a place to make a difference. And a big thank you to all the people who have participated and have words of encouragement for every PWD regardless of what type we’re talking about.

Maybe this anniversary will give me a good reason to be less camera shy. We all can do this!

What Diabetes Has Done for me

You never look at a chronic condition as something good. After all, diabetes can be such a pain in the you know what. All the things you have to do, all the things you have to take care of, all the things you have to stop doing, all the things you are at risk of… Yes, not fun. But for me, diabetes has also been a blessing in disguise… a big one! Especially now when I need to find some new purpose in my life.

I have mentioned many times that I started advocating for people with diabetes way before my own diagnosis. What I never thought about is that by becoming an advocate, not only I was helping myself to understand and be aware of my diabetes once I got diagnosed, but that eventually, advocacy and activism would become such an important part of my life; the connections I’ve established since I joined the diabetes community have been my lifeline more often than not.

We may not share the same type of diabetes. We may become friends with someone who doesn’t even have diabetes, but who cares about someone else who has it. We may not understand what the other person is talking about sometimes, but we all are there, having each others back, trying to be supportive. And this support is not only when it comes to diabetes, but it’s about knowing we have friends and people we can trust. People who won’t judge, people who will always be happy for the chance to meet, people who will go out of their way to show you they care.

I guess chronic conditions make us aware of how hard life tends to get at times and how many struggles we go through. I’m grateful I was put on this earth to deal with diabetes. It gives me purpose, it gives me something to be passionate about and it has brought many wonderful human beings into my life.

This summer will give me the chance to meet new d-peeps, see old friends again, work on an awesome project for the Hispanic community with the fantastic DSMA. And that is exactly what I need now. I’m making lemonade! 😉

Type What?

I’ve been thinking a lot before posting this. I even picked some people’s brains, mostly type 2’s. I don’t want to offend anyone or sound resentful. It’s just that sometimes I feel so invisible because I have type 2 diabetes… and apparently I’m not the only one. We’re kinda the ones “responsible” for our condition, and even though I know many people in the diabetes community don’t make the difference between all types of diabetes, there are still many others who think we don’t have to deal with “that much” and that we’re a bunch of irresponsible wimps with no character. After all, eat better, exercise, lose weight and your diabetes will be gone… *poof*, right? NO, not right.

If you’ve seen me you’re probably thinking I would get rid of my diabetes if I just lost all this darn weight. But you probably don’t know that I do have a very significant hormonal imbalance. After 10 years I finally was informed of a possible cause for my condition. Not that I didn’t know my hormones are the crankiest on earth, but the fertility doctor added PCOS to the equation. And I think the PCOS is as old as I am… completely ignored and untreated and here I’ve been thinking why I just feel crazy. But I digress… what I’m saying is that sometimes it’s not that easy. I’m not saying it may be not that easy for me (my major problem is my difficulty to gather the will power to do what’s right), but I don’t like generalizations. And when type 1’s hate on type 2’s, that is just not right.

I realize that part of problem may be just in my head. And I know no one else judges me the way I judge myself, so most of the things I believe people think are only in my head. But I wanted to write about this and see if I get some input. I spend a lot of time advocating for ALL types of diabetes and I don’t think anyone would appreciate if one day I decided I’m just going to care about type 2.

 

Double D

Diabetes + Depression. It’s a constant, double struggle. You need motivation to get your life and health in order, and there’s this extra weight on your shoulders pulling you down. Been there, done that… still deal with it every single day because my depression seems to be as chronic as my diabetes. It makes things harder in every sense with the lack of energy, the low self-esteem that comes with it and the feeling that it doesn’t matter what I do things will never get better. So why bother?

Sometimes I wonder if I’m just lazy with my diabetes, but then I figure I’m not the only one who wakes up some days wishing it’s all gone so I don’t have to work on it because it’s darn annoying. I look at myself in the mirror and I see (I know!) I have to do so much better than this and stop using excuses. But for me, it’s not only about food choices, exercise and taking my medication… I struggle very hard to keep my sanity as well. I know that if I forget to take my happy pills everything else will fall apart. Then it becomes a vicious cycle: my diabetes and my weight issues make me depressed, and my depression takes away my motivation. It’s so much fun… NOT!

During the Roche Social Media Summit I had the chance to listen to Dr. William Polonsky from the Diabetes Behavioral Institute. He basically said we need to take a vacation from diabetes from time to time and do it smartly. I wrote some about it in my previous post. At the end of the session people started sharing personal stories and I was afraid to talk. First because I’m stupidly conscious about my accent, and second because I avoid public speaking like the plague, especially when it’s about feelings and personal trials and tribulations. But then I gathered some courage and I told everyone in that room how I feel: Sometimes I think I’m not worth it. Sometimes I think it wouldn’t  be a big loss if I wasn’t around. I heard all kinds of “What are you talking about? I’d miss you! You’re wonderful!” — I technically know all that, but my depression speaks too loud sometimes.

After I was approached by several people to thank me for saying what they feel but are never able to express, I felt like some of that weight was lifted off my shoulders. I’ve always know I’m not the only one dealing with depression and diabetes. But knowing that I can openly talk about it and ask for help and support certainly makes things easier. Especially when I can related to those who have to fight the diabetes dude every day.

I know that my health will greatly improve when I start making the right choices, not just for a day but for a life. But in order to achieve that I need my mental checkout from time to time. And happy pills it is.