Tuesday, July 31, 2012

Sentimental

My insulin pump lives a hard life.

It gets dropped, bounced, bonked, yanked, bumped, and knocked around quite a bit.  What would you expect for something that lives 24/7 on super uncoordinated me?

Thank goodness for warrantees, since I seem to go through a pump every year or two.  In fourteen years of pumping, I've only had a few pumps all out die on me.  Mostly they develop small cracks, at which point Medtronic has told me to call and get them replaced.

Last week I noticed two small cracks on my pump, up near the battery cap.  And since the pump can't function without proper battery connection, I didn't want to mess around.  It was still working fine, and I wanted to keep it that way.

Cracks right where the battery cap meets the pump.

Guess it's that time again.  Call Medtronic customer service, attempt to explain the size and location of the crack over the phone, answer a few more questions, and a replacement pump is on the way.

I called on Sunday evening, so the replacement pump arrived Tuesday morning.

New pump! Shiny! 

 Time to put all my settings in the new pump.  Then we're up and running!

Matching pumps! Minus the scratches and cracks.

And then the old pump goes back to Medtronic.  This one made it through a year and a half of loyal service.  I get a bit sentimental when it comes to my diabetes technology.


So thanks, pump, for giving me my insulin and keeping me alive for the last year and a half.  We've had a good run.  Goodbye old friend.




Wednesday, July 25, 2012

BEAUTIFUL!

There are a lot of reasons I LOVE the Diabetes Online Community.  This is one of them.

A little over 24 hours ago, a friend posted that her T1D daughter needed to get glasses.  And that she was worried about not being pretty with her glasses and insulin pump.

Sara, Kim, and I decided we needed to tell her the truth.  That she's BEAUTIFUL!!!!!

I've had diabetes for almost 19 years, and got glasses about six months after diagnosis.  I got my first pump in 1998.  And I haven't gone a day without my accessories since.



There are lots of people who rock both dysfunctional pancreai and glasses.  So we asked them for help!  In less than 24 hours, we had enough pictures and videos of people for Sara to make a video out of them!



The fact that so many people jumped right in, to help someone they don't even know, makes my heart sing.  I love the DOC.  Thanks team.

We're all beautiful.



A Difficult Decision


If you follow me on twitter, you may have noticed that my pictures of my CGM graphs look a little different lately.

I've been using Medtronic's Continuous Glucose Monitoring for about a year and a half.  And it's been a godsend.  I still have diabetes and days that don't go so well, but having a CGM has transformed the way I care for myself.


But after all this time on the Medtronic system, I've recently switched to Dexcom.  But it's not a switch I'm thrilled about making.  And a switch that I hope is only temporary.  Let me explain.

The current Medtronic sensor, the Sof-sensor, hurts.  Insertion hurts a whole hell of a lot.  As my friend Martin says, that needle is an effing harpoon.



And that's why I switched.  Bottom line.  I just couldn't do it anymore.  I know this makes me sound like a whiny baby, but it's the truth.  I just can't handle that giant needle anymore.  The Dexcom hurts a lot less to insert.  It's not painless by any means, but certainly way better.

I did a trial for about 10 days of the Dexcom system before I decided to get it.  And for several of those days, I also wore the Medtronic sensor, which gave me some time to compare the two.  There are definitely pros and cons to each system.  So here we go.

Medtronic


Pros:
  • Insulin pump/CGM integrated (one device)
  • Access to calibration history.  You can go in and see all calibrations going back several days.  Includes both the time of calibration and the bg number entered.
  • Ability to scroll back and see previous CGM readings up to 24 hours ago.
  • Has predictive alerts.  Meaning that I can set the pump to alert me when it predicts I'll go low or high within a certain amount of time.  For example, I can set it to alert me 15 minutes before the CGM thinks I'll be low.
  • Can set varying high and low thresholds.  My high threshold was set at 180 during the day, and 200 overnight.
  • Access to sensor alert history allows you to see all previous alarms and alerts.
  • The alarm snooze settings are easy to customize.  My low alarm snooze was 20 minutes, and my high alarm was set at the max, three hours.
  • You can cycle thru all graphs with up arrow over and over.  It goes from 3 to 6 to 12 to 24 and back to 3 again, all using the up arrow.  You don't have to scroll back down again.
  • Sensor/transmitter combo is lower profile.  I don't catch it on stuff like I do the Dexcom sensor/transmitter.
  • CGM settings are overall more customizable.


Cons:
  • HUGE insertion needle!  Ouch!
  • Three day sensor (though I always wore it six. Shhh!).
  • Complicated insertion.  Can be challenging to hit the correct angle, tends to bleed a lot, and did I mention it HURTS??!!?
  • Only supposed to calibrate when blood sugar is stable, otherwise it throws things off.
  • Have to wait for sensor to "wet" after insertion before connecting transmitter.  This can take anywhere from 15 minutes to a couple hours.

Dexcom


Pros:
  • Insertion not very painful and significantly easier.
  • No wetting time for sensor.  You can immediately hook up the transmitter.
  • Seven day sensor.  I've made it to almost two weeks (again, not medial advice.  Sensor is only FDA approved for seven days).
  • Dexcom automatically pulls the number off the graph when you calibrate, so you start from there.  Medtronic starts at 90 every time.
  • Sensor and transmitter adhesive is much more secure without additional tape.  The Medtronic sensor flops around unless you tape it down. 
  • Easy to see CGM graph when you have your pump in your bra.  I don't have to reach down my dress as often.
  • Keeps up better when blood sugar is either skyrocketing or plummeting very quickly.


Cons:
  • Having to carry around the receiver is ANNOYING!  I'm gonna lose that thing, I just know it.
  • Hovering around the high or low threshold?  The Dexcom is going to alarm EVERY SINGLE TIME you cross the line, instead of alarming once and then not again until the snooze is over.  Medtronic won't repeat the alarm until the snooze period ends.  So no matter how many times I go over/under 180, that high alarm will only go off once every three hours.  Much less annoying.
  • You have no access to data on the device itself.  Now, I've not downloaded data and looked at anything on the computer, but I miss having all that info at my fingertips.  Previous CGM readings, calibration and alert history, when the next calibration is due, and the age of the sensor. The Dexcom receiver doesn't give me any of this information.
  • No predictive alerts.
  • When you restart the sensor, you have to wait the initial two hours again for any data.  With Medtronic CGM, there's data immediately after you restart.

Clearly, there are advantages and disadvantages to both systems.  One thing that isn't really different is the overall accuracy.  I don't find the Dexcom to be more accurate than the Medtronic.  Usually it does keep up with wild swings a bit better, but not always.



So for now, I'm using the Dexcom.  And trying not to leave the receiver anywhere.  But like I said, I'm hoping this is just a temporary switch.  Because this isn't what I really want.

What do I want?  Short of an artificial pancreas, I want the Medtronic Enlite sensor.  I had the good fortune to see one in action at the Medtronic Diabetes Advocates Forum back in March.  Words cannot describe how badly I want this.  Insertion looks so much less painful.  And the sensor is 90 degrees--no more funny angles.  And it's a six day sensor.  And more accurate.  I could go on and on...

The Enlite is what I'm waiting for.  And unless it doesn't deliver as promised, I plan on switching back to Medtronic as soon as it's FDA approved and available in the US.  Hopefully my MiniLink transmitter will last a while longer so I won't have to pay for a new one.

Overall, in my opinion, the Medtronic system is superior to the Dexcom system.  Now I know that Dexcom has their next generation sensor and receiver in the FDA channels right now too.  And I don't know much about either.

I am a firm believer that people use whatever diabetes technology works best for them.  Just because I like the Medtronic system better doesn't mean I think that everyone needs to use it.  Use whatever works best for you.  Your diabetes (and diabetes technology) may vary.

But what I want is to go back to my integrated Medtronic system, with the Enlite sensor.  So dear FDA, please hurry.  Thanks.


Please remember that I am not a doctor, and everything here are my own thoughts and opinions, and are not intended as medical advice.  Thanks!



Thursday, July 19, 2012

You Remember Me?

"Hi, you may not remember me," the woman said.  But I'm good with faces.

"Yes, I remember you!"  I said.

"How's your mom?"  she asked.

"Good,"  I reply, smiling.  "I can't believe you recognize me after all this time!"

"Of course I recognize you!" she says, smiling back.

my meter in elementary school.
photo credit: Mario on TuDiabetes
And who was this woman that I ran into?  My elementary school nurse!  Whom I haven't seen since I graduated sixth grade.  Which was (without getting too exact) more than 15 years ago.

Unfortunately, I was working, so we didn't get to talk very much.  Just a couple minutes of simple catching up.  What I was doing.  The school she's working at now.  That sort of thing.


I still can't believe that she recognized me.  But the more I've thought about it, the more I realize just how much time I spent in her office.  I was diagnosed right before the start of 4th grade.  Like weeks before.  And Mrs. H was my nurse for 4th, 5th, and 6th grade.

At my elementary school, I was one of two students with Type 1 Diabetes.  And "back in the day," we kept all our stuff in the nurse's office.  I didn't keep a meter on me or in the classroom.  I would walk to the nurse's office to check my blood sugar.  Every day.  And take my lunchtime injection.  Every day.

And Mrs. H was there.  Every day.

I wish I remembered more about her.  I wish I could rattle off some great anecdote about how she helped me, or some silly diabetes related thing I did.  But I can't.

Looking back now though, I can appreciate what she did for me.  And why she'd remember me.

Thanks Mrs. H, for taking care of me.  I may not remember much of it, but I remember that you were awesome.





Friday, July 13, 2012

You Can Do This Project: The Booth

I spent Friday afternoon and most of the day Saturday at the You Can Do This Project booth in the exhibit hall at Friends for Life.  It was an incredible experience.


Photo courtesy of You Can Do This Project


"Hi, have you heard about the You Can Do This Project?" way my typical approach when someone walked up to the table.  The bracelets and stickers were popular.

Usually, the answer was no, they'd never heard of it.

"It's on online video project (or movement, as Kim says) for people affected by diabetes.  We have over 100 videos made by people with diabetes or those who love them.  It's a place for people to share their journey with diabetes and offer hope.  To be a light in someone else's darkness."

People's response?  For the most part, it was something like this: "Wow!  That's great!"

It was so encouraging and amazing telling people about the project.  The response was overwhelmingly positive.  Like Kim said, I knew I was doing exactly what I was supposed to be doing.  It's an incredible feeling, and for me, it reinforced how much a project like this is needed.

Some people agreed to make videos on the spot.  But that can be quite intimidating.  So we encouraged people to write a message on a white board and participate in Words of Hope.


Isn't that AWESOME!!!! I LOVE it!

Bottom line- volunteering at the YCDT booth was truly an honor, and I can't wait to volunteer again at TCOYD in Des Moines in September.  I truly believe that this project changes lives.

There's another story from the booth that I HAVE to share.  As you hopefully know, Meri and her wonderful family won a trip to FFL.  It was such a thrill to meet Meri and Ryan and the boys.  Silly me didn't even get a pic with Meri.

But when I was working at the booth, up wandered L, Meri's youngest.  I was talking to him, encouraging him to take a bracelet and a sticker, when he gasps and points, "Hey, that's my mom!"

Yep.  Right behind me was Meri's lovely face on a poster.  Kim had screenshots from a few videos on posters displayed at the booth.  L was excited to see his mom's face on one.

"She's famous!" L exclaimed, and I had to laugh.  Yes, she is.  Famous for being honest and sharing her story to help others.  That's what the project is all about.

Thank you Kim for creating the project.  And thanks to all of you for making videos.  I wouldn't have been able to tell people there were over 100 videos without all of you making them.  Thanks for sharing your story and supporting YCDT.  I can't wait to see what the future holds!


Disclaimer: I should probably disclose that I'm a member of the You Can Do This Project Advisory Team, which is a tremendous honor.  I love this project!



Thursday, July 12, 2012

Where's Mine?



Me: Mom, look at my awesome You Can Do This Project bracelet!  We handed them out at the booth.

Mom: Where's mine?

Me: Right here, of course.


My mom rocks.






Wednesday, July 11, 2012

Felt Like Home

I've had some time to think about it, and I'm still not sure what I want to say about Friends for Life.  I'm having a lot of trouble coming up with the words.  Sara, Kim, Brian, Kerri, Martin, KarenMeri, and Kate have written some fantastic posts about the week.

It's not often that I am speechless.  But when it comes to spending a week surrounded by people with diabetes and their loved ones, words are hard to come by.

How do I describe how it feels?

To catch the first glimpse of friends you haven't seen in an entire year.

To go out to eat, and almost everyone at the table is checking their blood sugar and bolusing.  Not just you.

To spend two days in the exhibit hall, telling people about the You Can Do This Project.  And to see all the people running around with YCDT stickers and bracelets.

To sit in a session after breakfast, listening to all the CGM high alarms go off.  Because mornings are rough for all PWDs.  Not just you.

To have carb counts listed for all the food.

To hear something beep, and everyone reaches into their pocket or purse, because no one has any idea whom it might be.

To meet people you know in the DOC in real life for the first time.  It's indescribable.  You already know each other from twitter/blogs/podcasts.  Seems like it would be awkward, but it isn't.

To stand in the hotel lobby, and see all the green bracelets.  In a place where living with diabetes is normal.  Where loving someone with diabetes is normal.  Where it is impossible to feel like you're the only one.

To spend time with some of your best friends in the entire world.  Who happen to have diabetes too.

Photo credit: Kerri

Meri said it best.  She said FFL was a family reunion.  Which it is.  Everyone there either lives with diabetes or loves someone who does.  And spending time with those people is a magical thing.


The Diabetes Online Community is so important to me.  You guys are more than friends.  You're family.  And last week, it felt like home.






Disclaimer:  Josh and I paid for all expenses involved in attending Friends For Life ourselves, including plane tickets, registration, hotel, and food.  I was not asked to blog about the event, and all opinions are my own.





Monday, July 9, 2012

Keeping the Bracelets On

I'm so not ready to go back to the real world.

Children With Diabetes Friends for Life Conference 2012 was AMAZING!!!  There are a lot of things I want to tell you about.  But I need to gather my thoughts and catch up on some sleep first.

It was so wonderful to see some of my best friends, and make some new ones.  It's always so incredible when you meet people from D blogs or twitter in person, because you already know them.  It's a feeling that's hard to describe.  And I got to meet some incredible people this week.  And spend time with great friends.

Volunteering at the You Can Do This Project booth in the exhibit hall was a very powerful experience. Since it's Kim's project, I want her to tell you about it all first.  But I would call it a rousing success.  

That's all my exhausted brain can come up with right now.  And I leave you with this shot of my bracelets.  Neither of which I am ready to take off.

Is it July 8th, 2013 yet?