Tag Archives: community

And then it got really cranky!

I had my regular diabetes check-up this week. The last 7+ months have been a constant battle, trying to figure out why my A1Cs have been so bad. I have been on Victoza for about a year now; it never stopped making me sick, and it obviously did not do the trick. Apparently my beta cells finally decided to take a leave of absence, and what once was a cranky pancreas, is now a full-on angry one. I wonder if I should change the name of the blog… again. J/K

My doctor decided it was time for me to try basal insulin if I was open to it. I told her I have never been afraid of insulin; in fact I think insulin therapy is a wonderful thing (you go, Dr. Banting!). Of course there was the feeling of failure… but no, I did not fail. I had a friend remind me that diabetes is a progressive disease, and this was bound to happen. I guess my pancreas gave me a good 15 years of overtime.

My butter compartment is now occupied by Lantus pens (which made me think of Lee Ann), and I will start this new phase of treatment this weekend. The doctor will decide about meal time insulin as we go. I have been pestering people with all kinds of questions (Thank you, Matt, for all your patience), and I have also been afraid because let’s face it, we are talking about insulin here. But I don’t have to be specific about that.  And all those questions, all those fears, made me realize I had to come back to the only group of people who completely understand what it is like to live with diabetes. Starting insulin for me is like having to relearn everything.

I realized that I was right… the DOC has kept me in check in one way or another, and I need the community from which I have learned so much. At some point I felt withdrawn and probably overwhelmed, so I left. But after seeing my doctor and having so many questions, I realized I needed the support. And I also need that daily reminder that when dealing with a chronic disease, it is better to turn to those who live with it as well. :-)

Taking the High Road

Wouldn’t you know it… there are instructions for this: Take a deep breath. In for five, out for five. Close your eyes to get the full effect. Repeat if necessary until you feel like you’re back into control. Then smile. Look the person directly in the eye and give them a knowing smile. Usually, people find this disarming and want to smile back. Sometimes, this is all it takes.

When it comes to health conditions and each individual’s experience, there will always be someone who doesn’t agree with me. And lately I’ve found myself trying hard not to say something, especially about people with type 2 diabetes. Somehow we’ve been deemed the fat and lazy who deserved to get diabetes; the media doesn’t help and opinion are so divided, I really don’t know right from wrong anymore. I know my personal history, I know I probably could’ve delayed the onset of my diabetes, but the magic cocktail was there for me to develop it. Whether I deserve it or not… that’s another story.

One of the things I struggle the most as diabetes advocate is trying to make other people in the community understand that because I have type 2 it doesn’t mean I have no awareness about other types of diabetes. The constant bashing of type 2s makes me really sad sometimes, and I wish other people wouldn’t be so quick to judge and condemn. Things have gotten to the point that it’s bad that we’re all called diabetics. But that’s a rant for another day. What I’m trying to say is, that in the middle of this struggle, I decide to take the high road and keep on doing what I’m doing: caring, helping, educating.

Sometimes it’s better to smile and keep silent.

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.

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.