Sunday, 9 February, 2014

Disappointed

The internet can be a vicious place. And today, I feel so disappointed to see that creeping into the Diabetes Online Community.

This community is precious to me. Sacred even. This community has saved me time and time again. Carried me when I couldn’t stand on my own. So the way some are responding to Miss Manners is breaking my heart.

Here is the original column. And here are posts by Kari and Sara that I agree with wholeheartedly. A reader asked Miss Manners a question, and she responded with her OPINION, as one does in a column like that. I am shocked at the response by some online to the opinion of one person. Miss Manners thinks it would be more polite to check one’s blood sugar in an airplane restroom rather than at one’s seat. Do I agree with her? No. Was I angry when I first read her response? Yes.

Here’s the thing. It’s ok to be angry. Totally and completely ok. But to attack this little old lady is such a vicious manner for sharing her opinion? Not ok. Not at all.

Where is the compassion, empathy, and understanding that made me fall in love with the Diabetes Online Community? This is a tremendous opportunity to educate, that is being lost in words of hate and defensiveness.  I’ve shared a lot of opinions on this blog. A lot. And I would be crushed if something I wrote was attacked in the way Miss Manners has been attacked.

It’s her opinion. And she has every right to hold and share that opinion. It doesn’t mean we have to agree with her. I certainly don’t. I check my blood sugar in my seat when I fly, and I plan to continue doing so. Hell, I’ve done a complete set and site change in an airport terminal in full view of others. Do some people think it’s rude and gross? Probably. And they have the right to think that. Just as I have the right to disagree with them.

And like Sara said, the comments on Miss Manners’ column by regular readers heavily disagree with her. Most people don’t seem to have any problem with people with diabetes testing in their seats. That is so encouraging! I love that. To me, that response is way more important than the opinion of one woman.

Miss Manners has her opinion. This post is mine. And you don’t have to agree with either of us.

Thursday, 9 January, 2014

Golden

I have more to share about the Medtronic Diabetes Advocates Forum, but today, there’s something else on my mind.

Sara was kind enough to pack this in her suitcase and bring it to me. Remember when I did the JDRF Las Vegas Walk to Cure Diabetes back in November? And I harassed people with requests for donations?

It paid off. I got the Golden Sneaker Award! This award is given to anyone who raises at least $1,000 for the Walk to Cure Diabetes. My official total was $1,070! Which completely blew me away.

This is the first time I’ve actively participated in a JDRF walk since I was a teenager. And I’ve never even come close to raising this much money before. So this silly little sneaker means a lot to me. It means even more to share it with a friend.

And I couldn’t have done it without you. Thank you. Seriously, thank you. For putting up with my donation requests. For donating. For spreading the word about the walk. I didn’t do this. WE did this.

Thank you.


Together

My brain has been swirling since I returned from California. Trying to figure out what to say about the Medtronic Diabetes Advocates Forum has been difficult. There’s so much I want to say, I’m having trouble deciding where to start.

Kim, Meri, Sara, Kerri, Christel, Catherine, Jacquie, Chris, and Heather have all already written about it. Stop now and go read their posts. REALLY. Go do it. I love what they had to say. And if I repeat something they said, I apologize. It’s unintentional.

There was so much information presented and discussed, and so many fabulous ideas tossed around that it’s impossible for me to recap everything. I was too busy listening and trying to absorb it all to take decent notes. What I do what to tell you is what I’ve been thinking about. What I carried home in my heart after the forum was over.

This was my second time attending Medtronic DAF. The last one was almost two years ago now. This year, it was sponsored by both Medtronic and Bayer. (Disclosure time: Medtronic and Bayer paid for my flights, hotel, transportation, and food. But not my thoughts. Those are mine. Full disclosure policy here).

Like Kim said in her post, I went into the last event feeling quite intimidated. And nervous. I had never participated in anything like it before. I wasn’t even sure I belonged there. What did I really have to offer? But I learned a lot, and had a great experience.

This time around, I went in a different person. I’ve grown and changed a lot in the last two years. I’m not the same person I used to be. I’ve found my voice. Not that I have all the answers, but I’ve learned some things. That my voice matters. What advocacy looks like to me.  I was ready to learn, question, and discuss.

Like I said earlier, I can’t even begin to recap everything that happened. There was a lot. But what I keep thinking about is Saturday afternoon. Dr. Francine Kaufman is freaking amazing. I love her. Her talk is what I remember most from the event in 2012. And it’s what I remember most from this year as well. There is so much that needs to be done to care for people with diabetes around the world. As I sat there listening to her talk about her trips and the work she does with Medtronic Philanthropy and the International Diabetes Federation, I felt overwhelmed. There is so much need in the world. Where do we even start? The tears stung at my eyes as I looked a slide with a picture of a two year old girl with Type 1 Diabetes. Dr. Kaufman told us, “This child died.”

I’ve been thinking a lot about this. And here’s what I’ve learned: we pick a need, and start there. That’s what Dr. Kaufman does. She’s not trying to save everyone in the whole world. She found a need and dove in. Her work has made a difference in the lives of children with diabetes in Haiti. Has improved the outcomes for thousands of people with diabetes in Kazakhstan. And there’s work starting in China too.

We can’t save every person with diabetes in the entire world. But we do have the power to enact change. The brainstorming session we had following Dr. Kaufman’s talk was nothing short of magical. There are big plans for Spare A Rose, Save A Child this year. An action plan that roomful of people worked to create. It’s going to be BIG this year. That’s what we can do. Support Life For A Child and raise funds to get insulin and supplies to children with diabetes in need.

That’s what I brought home with me from Medtronic DAF. I left feeling inspired and empowered. Yes, there is a lot of need out there for people with diabetes. But we can do something. I cannot wait to see when happens when the entire Diabetes Online Community comes together.

We are ALL advocates in our own way. Imagine what we can do together.


Break Out the Art Supplies

I love art. As a teacher, I understand how important it is for kids to have access to art supplies and be able to freely express themselves. It’s something we as adults tend to forget.

Lee Ann is one of my favorite people. And she’s passionate about using art to help people with diabetes and their loved ones. This coming Monday, February 3rd is Diabetes Art Day.

Won’t you please join us? Create something to share. As I tell my students, there is no wrong way to make art. All art is beautiful. Think you can’t create something beautiful? That’s a lie. You can. And someone will love it. Not only does creative expression help you feel better, but sharing your art might help someone else.

And this year, Lee Ann is conducting research on visual expression and people with diabetes. Help her out by completing a survey both before and after #DArtDay.More information here.

Create, share, and see what others have made. We’re all in this together. Might as well have some fun and break out the art supplies!


Phantom Pump Sites

There’s a lot of things about living with diabetes that can makes us feel alone. Some are big, and some are little. But if there’s one thing the Diabetes Online Community has taught me, it’s that we are never rarely the only one to experience something.

I was pondering a little thing earlier today. Last week, I had a set on the side of my butt. At least once a day, that spot starts to itch and/or hurt a bit, and I think “Yikes, that set is annoying!” Only to then realize there’s no set there. Nor does the skin appear red or irritated at all. Seems like it’s all in my head. Phantom set pain, maybe?

It’s happened to me before too. I sat there, wondering if I was the only one who ever had this problem. So I decided to take to Twitter.

Monday, 12 August, 2013

BINGO!

Why do I get so excited when they match?

 

 

Makes me want to jump up and shout “BINGO!” or something.  At least if I like the number.

Sunday, 14 July, 2013

Buzz, Buzz, Buzz, Buzzing

My eyes snap open out of a deep sleep.  My Dexcom is buzz, buzz, buzz, buzzing away.  It rattles in the glass coaster on my nightstand, which thankfully makes it louder.

I know the instant my eyes open that I’m low.  A quick finger stick confirms this.

A juice box and granola bar later, I’m on the way up.  But I double check before going back to sleep.

Today, I am especially thankful for my cgm.  Who knows if I would have woken up otherwise?

I hate lows during the night.
Tuesday, 9 July, 2013

So, Kids?

Subtitle of this post: No, I am NOT pregnant.

“So, when are you guys going to start having kids?”

Josh and I get this question ALL THE TIME!  I hate that question.  Personally, I think it’s rude, insensitive, and none of your damn business.  But we’re at the age where a lot of friends/coworkers/acquaintances are having kids.  So people ask.

Our usual answer?  Not anytime soon.

We’re not willing to say we won’t ever have kids, but that’s definitely not what’s right for us right now.  Maybe we’ll change our minds in a few years.  Maybe we won’t.  Time will tell.  Good grief, I’m not THAT old yet.

The only good thing about people asking this question?  An opportunity to educate, whether I want to or not.  If the people asking know I have Type 1, they often assume that means I can’t have kids.  So the question turns into a chance to set the record straight.

Diabetes has absolutely NOTHING to do with my lack of desire for a child.  I really just don’t want any kids right now.  That’s it, I promise.

I know way too many fantastic, amazing women with diabetes who have children to be afraid.  So many beautiful children and beautiful mommies.  Healthy kids and healthy pregnancies.  Women with diabetes can most definitely have kids.

Jacquie, Holly, Karen, Renza, Amy, Bethany,  Kerri,  Emma,  Kim,  Cherise,  Jennifer, Sarah, Jenn,  Melissa,  Gina,  Christel,  Jennifer,  Shannon,  Lisa.  And those are just the ladies I could think of off the top of my head!  There are many, many more.

So if we decide we are ready for kids, I’ll know that I can do it.  Thanks to all the amazing women who have.

But for now, I’m good being an observer.

Sunday, 12 May, 2013

A Huge Gift

“Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)”

“MEMORY! ALL ALONE IN THE MOONLIGHT….”

Am I the only one singing?  Yes?  Ok, I’ll stop then.

There are a lot of memories I have that involve diabetes.  But all of them pale in comparison to a huge gift diabetes has given me.

Friends.  These friends I met only because they all have diabetes.  Nothing this disease throws at me will ever compare to this.

*I know not all these pics are mine. If I owe you a photo credit, please let me know!*

Robots

So my church will be having vacation bible school soon.  And they are collecting supplies.  Like you do.

Boxes are being collected for the kids to make robots.

Some lucky kid will make a really kick ass robot with my sensor and set boxes.  This makes me happy.

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