I feel like I’m in a perpetual state of conflict over the perception of my life with type 1 diabetes.
Because I choose to not hide my diabetes, I found myself at a party with my Dexcom sensor fully visible on my arm, talking to a friend’s husband. He was asking me the questions that I’m used to answering. The ones I get on a regular basis from family, friends, acquaintances and strangers. The questions were about what my equipment does, what I can and can’t eat, etc.
Then came the familiar one, “So as long as you do what you’re supposed to, it’s not a big deal. Right?”Continue reading →
This week is Diabetes Blog Week, which is slightly unfortunate because I have a crazy week this week. If you don’t know what Diabetes Blog Week is, click here to find out.
Today’s prompt is about changing the world and the areas of advocacy about which we’re most passionate. This post (and probably all DBlog Weeks posts) are tough for me to really write about because I’m struggling with DBlog burnout and I’ve become pretty disenchanted with the DOC as of late.
When it comes to changing the world, I’m not even going to try. If I focus on trying to change the entire world or trying to change anything in society as a whole, I will be stuck here turning my wheels forever and getting nowhere. What I want to do, and have tried to do through this blog and daily interactions, is:
Help one person have a better understanding of diabetes
Help one person who is struggling with diabetes feel less alone
Once I’ve helped one person, then I can move onto the next. I’m not a world leader, I don’t have a podium or even a huge blog following. I’m a person who works with people… which means my advocacy is here.
I’m at a loss for new words to explain these ideas, but I feel like I’ve explained them before. Here’s what I mean:
Why I blog about diabetes. This posts explains at least a little about why I put a very personal health issue out on the internet for others.
Just wear the dress. Posts like this, are my way of trying to help others with diabetes feel more comfortable in their own skin, even if that skin has sensors and sites stuck in it. I tweeted about an awkward question from a child over the weekend about my pod (she thought it was a form of birth control!) and a company that makes wraps, sleeves and other covers replied to it telling me to check them out. I’d rather answer awkward questions and help that kid grow up with a better understanding of diabetes than try to cover up my robot parts any day. Sometimes people stare, sometimes people ask questions, those are opportunities to help that one person understand diabetes a little bit better.
My Plus One is a story of Diabetes In the Wild and meeting another PWD at an event that wasn’t particularly friendly to people with nonfunctional pancreases. He helped me feel less alone and I think I helped him feel less alone too.
Why I Participate In Research sheds some light on the reasons I let scientists study my blood and read my medical records and why I answer survey after survey. I’m not able to fund a cure and I certainly don’t have the skills to identify or create one… but I do have the screwed up immune system that those people need access to in order to unlock the mysteries of Type 1 and hopefully cure it, even if it isn’t in my life time.
I don’t want to change the world. I want to help people.
If you want to make a difference in the world, start with the people around you. Some of the advocacy efforts I’m most proud of took place in one-on-one interactions with people.
If you’ve read my About page, you know that ProbablyRachel was started when I received the advice in college: Write every day.
ProbablyRachel has grown and changed over the past few years (along with me), but at the end of the day, this little corner of the world is my hobby and I love to write, read, share and be inspired by the blogosphere.
That’s the “in-a-nutshell” answer to the question that Katie posed for her link up at He Calls Me Grace.
I decided to dig a little deeper though and finish an abandoned post on why I bother to blog about having diabetes. If you’re curious, read on…
I participate in scientific research on type 1 diabetes. So far, the studies I’ve been involved in haven’t required me to do much more than fill out surveys and agree to share my regular test results with scientists, but I’m waiting for the consent form in the mail that will allow researchers to call me up and take my blood. There was of course the question of, “Why should I do something uncomfortable in the name of science?”
I don’t participate in studies to be compensated as being a research subject is not a lucrative job no matter what you see on TV (but the one-time free parking at the hospital was welcome!).
I hope that in those studies that I can’t be a part of, whether due to my age, physical location or other factors, there are others who want to contribute to research.It’s my hope that by letting the people who know more about science and medicine than I do take a peek into what my crazy broken body does and doesn’t do will help them put together the puzzle that is type 1 diabetes. I’ve found that several studies aren’t interested in me however, because I’m not a “typical” case. My story doesn’t fit the patterns they’re tracking.
Maybe by analyzing my blood and survey answers patient care can be improved.
Maybe by participating in science, I can participate in finding a cure.
I do what I can and appreciate those who do more.
I can’t cry for better treatment or a cure without being willing to be involved. So I’m involved.
Don’t forget that I’m giving away a Premier Bundle of Level Food goodies! You should enter.
First a little housekeeping… if you didn’t check out the awesome blogs in yesterday’s post, you totally should. They’re called the Best of ‘Betes Blogs for a reason! You can start nominating for November now! (Well technically you could start four days ago.)
A lucky reader has been selected for my NatureBox giveaway! Check your email for a message from me to see if you won! If you didn’t win, don’t sweat it! You can still use the code SNACKTIME for half off your first box and I’m giving away something cool next week sometime.
I was contacted by the American Recall Center and asked to share one thing that I want people to know about living with diabetes.
Everyone with diabetes has a different story, different treatment and there is no one-size fits all approach to diabetes treatment. Even with just Type 1, there are different types of insulin, some people use injections, some people use pumps and even then our meters, pumps and other equipment vary. We have different targets and have different insulin needs. For example, at breakfast I need 1 unit of insulin for every 9 grams of carbs that I eat (which is different from lunch, which is different from dinner for me) and another blogger with type 1 needs 1 unit of insulin for every 20 grams of carbs she eats.
So back to my contribution… I couldn’t pick just one thing and I couldn’t narrow it down to one sentence, so I gave them several thoughts and let them do the editing based on their other input. They made an excellent selection by using: Continue reading →