Tag: blogging

Just write

It’s a long story (that’s what happens when you haven’t posted in eleven and a half months), but I was on a 36 hour round trip adventure with my mom to Southern California and back and we needed something to listen to on the drive when we got sick of Christmas carols. I suppose I should mention that this was about a month ago. I typically listen to podcasts on long drives, but most of them are serialized (unintentional Serial pun) so it wouldn’t really be fair to my mom to make her listen.

Instead, I downloaded the audio version of an autobiography that actually happened to be almost exactly the length of our four hour drive. At one point, the author was talking about advice she received about writing when she was feeling stuck. One of the most important tips was just to put in time every day and write. No editing, no researching, no social media, just time sitting in front of the computer writing.

I turned to my mom as the book was wrapping up and said, “she makes me want to start writing again.”

I stopped because I thought didn’t have time, but there are always a few minutes a day to write a few thoughts down. I stopped because I thought didn’t have anything to say, but anyone who knows me in person knows that can’t be true. I stopped writing because there are a lot of aspects of my life that aren’t appropriate to share about online, but there must still be moments of wonderful that are worth sharing.

More than anything else, I’ve realized how dangerous it is to think that my voice doesn’t matter.

So, I’m going to start writing again.

Diabetes Awareness Month – Photo a Day – Support

I had a bunch of different ideas to communicate support for today’s Diabetes Awareness Month photo prompt. Blogging isn’t the only way to find support in the diabetes online community, but the 221 blogs in my reader suggest that there are a few of us who enjoy and appreciate it.

dmpad - day 9 - support

At seven years old

Did you know that a typical seven year old can tell time? This includes knowing the different months of the year.

I guess that means by the time a blog is seven years old, the author should be able to remember the date of her blogiversary? (It was the beginning of June)

Other characterisitics of a seven year old:

Understanding the different between right and wrong and engaging in discussions about it.

wrong and right
Clearly I know the difference between right and wrong.

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A strong desire to be perfect and to be self-critical as a result.

nohitter
Dots away from a no hitter. Sooo close to perfect.

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Strong emotional responses and a tendency to complain.

I’m starting to crack. Cut a check. A splinter in California. Step Therapy.
(looks like they might be right about this one)

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The ability to reason and make correct decisions to solve complex problems.

The process of picking a potential pancreas.

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Understands more about his or her place in the world.

My way of saying thanks.

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Pays attention to friendship and teamwork.

You Are Beautiful! 17,605(!) views and counting this video!!

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My diabetes is almost 10 and a half years old. My blog is now seven years old. They are both still pretty young but I can say that I’ve definitely learned a lot watching them grow up so far.

Diabetes Blog Week Day 1 – Dear Doc

This week begins Diabetes Blog Week – the time in which the diabetes blogging community unites behind a series of topics to provide education, entertainment, and support for ourselves and others. The topics and list of participants are hosted at Bittersweet Diabetes.

Today’s topic (by Melissa) –
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Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

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I’ve had seven endocrinologists in my ten years with diabetes. Some of them I have only seen for one appointment and some I have seen for years. This letter is a collective approach to all of them.

waiting for the doctorDear Doc –

Thank you for seeing me this early in the morning. I’m not a morning person and I’d schedule the appointment for later in the day if I thought there was any chance I could see you without having to wait in the waiting room for over an hour.

I know that you see patient after patient with the same condition and it probably feels like you are repeating yourself over and over to people who aren’t even listening. I can promise you that I am listening. I can also promise you that when you walk into the exam room quoting research studies and diabetes statistics without finding out anything about me first, the rest of the appointment will not go well and I will not trust that you have my best interests in mind.

We both live with diabetes every day. Since endocrinology is not a highly compensated field, I know you must care about what you do. But for me, it’s personal. I know it takes extra time and concentration, but please treat me as an individual and get to know me (or at least read my chart on your way in the door) so that we can work together to find the best treatment for me.

I’ve only been doing this a comparatively short  amount of time and that means that there are disagreements that we have never had to have – for that I am very thankful. We’ve never had the fight about logging. That’s good because I’m not going to do it. I choose technology that does the work for me, because we both know nobody wants to deal with any extra steps. I expect you to embrace this technology and help me review the reports I’ve downloaded at home or the ones we can download together in your office.

Speaking of technology, I would love to be able to email your office and receive a reply. I know you are worried about HIPPA violations, but there has to be a way we can maintain privacy and still communicate between appointments. Speaking of communication, I’ll back off on the email issue if you agree to get a phone system that actually works.

Most days I feel like I’ve got this whole diabetes thing under control, but some days I don’t. Thank you for being there for me to help me problem solve and get back on track. I know I have told you that I am a diabetes advocate and that I write a diabetes blog. You don’t seem very interested, but don’t worry, I’m not offended. I just wanted to remind you that sometimes that community of people who I connect with online (and more often now in person too) help keep me on track too.

Signed,

Your favorite patient

P.S. I’ve lost two of you so far to maternity leave (and once for twins), so if you could stop doing that I would really appreciate it.

Diabetes Blog Week

Rumor has it

Rumor has it… that Scott from Rolling in the D is hosting Best of the ‘Betes Blogs this month.

I love finding out about new blogs each month and reading the great stuff that people in our community share. It’s like
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There’s a fire starting in my heart
Reaching a fever pitch, it’s bringing me out the dark
Finally I can see you crystal clear…

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In case this is the first you are hearing of the Best of the ‘Betes Blogs or in case you forgot, there are several different categories in which you can nominate posts.

#bestbetesblogsBest Use of Humor
Best Vlog
Best Recipe
Best Use of Photography
Best Advocacy
Best Reference to a D-Celebrity
Best Story of a D Meet-up
Best non-D Related Post
Best Post by a Type 1
Best Post by a Type 2
Best Post by a Type Awesome
Best Post by a LADA/ Type 1.5/ Not otherwise specified
Best story of a D-mistake
Best Motivational Post
Best Diabetes Art Category

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All of these words whispered in my ear,
Tell a story that I cannot bear to hear.
Just ’cause I said it, it don’t mean that I meant it,
People say crazy things.
Just ’cause I said it, don’t mean that I meant it,
Just ’cause you heard it…

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As you read blogs during the month, take note of any posts that you think are a perfect example of one of the categories listed above (please no self-nominations). Email bestbetesblogs@gmail.com or send a DM to the Best of the ‘Betes Blogs twitter account (@bestbetesblogs) with your nominations.

The “Best of” are only as good as the people who nominate. There are those who nominate every month and I am very thankful for those people. But there are so many more people in the diabetes community who we haven’t heard from. And that hurts a little.
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Never mind, I’ll find someone like you
I wish nothing but the best for you, too
Don’t forget me, I begged, I remember you said
Sometimes it lasts in love, but sometimes it hurts instead

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Nominations end this month on Friday August 31st at midnight. Due to the Labor Day holiday, Scott will post the results on his blog on Tuesday, September 4th. I am excited to see the results.
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I can’t help feeling
We could have had it all
Rolling in the deep
You had my heart inside of your hand
And you played it, to the beat

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I mean, really? You expected me to write this post WITHOUT sampling Adele?

What will they see?

“People were going to look. They were going to stare. I had to decide what they were going to see.”

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The moment that had the biggest impact on me during the recent Roche Social Media Summit did not come from someone with diabetes. It came from someone without a blog. It came from someone who has tweeted a total of 11 times in a year and a half.

Josh Bleill was serving his country as a Marine in Iraq when he was severely injured by a roadside bomb. The bomb caused a variety of injuries including the traumatic amputation of both of his legs. He spent the next two years in the hospital recovering from the physical and mental injuries.

As you can imagine, while Bleill was in the hospital he had many visitors. Doctors, nurses, social workers, physical therapists, politicians, celebrities, friends, and family all came to visit him. In his words, it was only another amputee “that inspired him to take his first step.”

Bleill spoke to us of the power of connecting with someone else sharing the same experiences.
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“Although I would never wish it on someone else, it was nice to have someone else there who understood. He doesn’t have the same story I have. But he was dealing with the same thing I was dealing with.”

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I found the diabetes community in stages. It was the message boards first when I googled some odd symptoms that I was experiencing. I noticed links to blogs in some of the signatures, which led me to the blogging community.

I had already started my own blog to stay in touch with family who lived across the country. As I read stories from other people living with diabetes, I began to hear my story too. They were sharing the same joys and struggles that I was experiencing, and their writing helped encourage me to find my voice too.

Suddenly I didn’t feel so alone. I had a community of people I could turn to for advice when I had questions, for a joke when I was feeling annoyed, for encouragement when I was feeling depressed, and for support when I was not sure how to continue living the life that I wanted to live with diabetes.
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“I wake every morning & my legs are still gone. But giving back is therapeutic.”

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The diabetes online community has changed since I found it. There are a variety of things that can be cited as reasons, but that is not what is important here. The community started because people needed to share their stories, because people needed to find support.

Before Bleill came to speak with the group at the summit, he searched the web for diabetes blogs. In this internet generation, he did the same thing that many people newly diagnosed with diabetes will do. They will find our community. It is up to all of us to define what they see.

Will they see a community of people willing to share the real stories of living with diabetes? Will they see a community of people who encourage each other through successes and support each other through challenges? Will they see a community of people who invite new members into the group and celebrate the diversity of voices that we all bring to this shared experience?
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“It’s not about telling MY story. It’s talking about when the bomb went off and the world went black. Everyone has that story.”

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Roche Social Media Summit Disclosure: Roche Diagnostics paid for transportation, meals and my hotel room during the summit. Participants were given a welcome bag with a few sample items and a few well-timed low treatments. I was not paid to attend or write about the summit.

You can read more about my disclosure policy here.

I am not an expert

I am not an expert in maintaining an appropriate A1c. Now mine is really good and I can tell people how I personally achieve that number, but I can’t guarantee the same steps would produce the same results for them. My target is my target. I wouldn’t aim for the same goal as a growing child. Or if I didn’t have a primarily desk job. Or if I was chasing around little kids that I was responsible for each day.

I am not an expert in diabetes devices. I wear a “tubed” pump and a (currently) non-integrated CGM. I picked those devices specifically for my lifestyle. They work for me. I appreciate that other devices work best for the lifestyles of other people. I couldn’t even tell you the first thing about how to manage diabetes with insulin pens since I have never used one.

I am not an expert in CGM technology. I have been wearing a CGM every day since September 2010. I like having all that data. I like knowing what my blood sugar is doing before I begin a presentation. I understand how all that information could cause overload and burnout for some people with diabetes and I understand why they might want to take a break.

I am not an expert in bolusing for meals. I pre-bolus most days 20-25 minutes before breakfast because I end up over 250 everyday otherwise. I eat fast food whenever I feel like it. I have the dual wave and/or combo wave boluses mastered for my favorite foods. However when I was at In N Out with some friends with diabetes in March, I proved that my combo bolus is not “your” combo bolus. Half the group ended up too high after the meal and the other half was too low.

I am not an expert in blogging. As of today, I have been writing on this blog for six years and sixteen days. I have written 769 posts. There have been months when I wrote every day that month. There have been a few months when I didn’t write anything at all. I have much respect for people who can write every day. I am not sure I have that much to say.

I am also not an expert in blog topics. I have written about the daily challenges of living with diabetes and sometimes even how it affects my view of politics, religion, books, products, friends, cats, and everything in between. I don’t write about the FDA because I don’t understand it. I don’t write about being a child with diabetes or raising a child with diabetes because I have no idea about either of those topics. Everything I write is my own opinion. I speak for myself and no one else.

I am not an expert in Twitter. At some point today I tweeted my 18,100th tweet. That is roughly 2.5 million characters. I still have no idea what I am doing and I know I miss some great tweets every day.

I am not an expert in diabetes. I have a college degree. I graduated with high honors. Heck, I even have a master’s degree. Neither one of my degrees have anything to do with diabetes.

The title of this post is a lie. There is one thing in which I AM an expert. There is one thing I know more about than any other person.

I am an expert in my experience in living my life with diabetes.

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