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 At some point I felt withdrawn and probably overwhelmed, so I left.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. 🙂
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.
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.
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.
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.
I want to thank Amy, Mike and Allison at Diabetes Mine for giving me a chance to be a guest post writer today. I’m proud to be a diabetes advocate, but mostly grateful for having found passion and purpose helping others to cope with what life brings.