#DBlogWeek Changing the World

I love science. LOVE. Love. love. SCIENCE.

And I have diabetes... (because my busted pancreas told me so)

So naturally my favorite advocacy effort focuses on research funding. I volunteer for JDRF at as many of their outreach events as I can. I'm not a great fundraiser - I'd rather tell you about all the interesting advancements and explain all that I know about beta cell encapsulation, insulin pump algorithms, and the latest and greatest and not quite out in the world yet (but in a few decades?) glucose responsive insulin. I'm not an expert but I am a doctoral student in the biomedical field so I hear tidbits here and there. I understand more of the science than your average bear. 

Even though I've been kind of crummy at it lately, I also love the sense of community that we build with each other and with the world at large. Twitter's my go to for connecting with the diabetes online community and unfortunately I've let it go a little silent (along with this blog). BUT I do try. My favorite days are when someone asks "why are you stabbing yourself?", "should you be eating that?", or "is that a beeper?". Guerilla advocacy -- answer their questions and teach them a tidbit or two about diabetes. Almost everyone knows someone with diabetes at this point, and yet there's such a lack of knowledge and serious judgement out there. So I'm educating the world one person at a time.

Before the Return of the Shell

Since I've been on an insulin pump for several years now, I have been lucky enough to see some of the diabetes technology devlop. All in all, I think (because my memory is too fuzzy to really remember) I've had at least 3 different Medtronic Minimed (MM) pumps. The latest and greatest 530g just came out as the successor to the Revel. I never got to experience the Revel first hand but one of the improved features was predicted alerts for the continuous glucose monitoring (CGM). I'm going straight from the MM Paradigm to the MM 530g, who's updated features included the linked CGM that allowed you to see your bloodsugar on the screen of your pump. If I'm wrong about this, I'm sure someone out in the DOC interwebs (because we're usually brighter than the average bears) will correct me. The funny thing about this whole experience is that while the Paradigm had the CGM ability, I only used it a handful of times before being so frustrated that I nearly pretended it never existed in the first place (which is saying quite a bit for someone who has the patience of an educator).

Regular readers will know that I've grown very attached to my Decom CGM that I lovingly call Eggy. I switched from MM to Dexcom two years ago because of that silly shell shaped transmitter. The transmitter would never stay put even with the assistance of every type of tape under the sun (that I could get my hands on at the time). The sensors were also crazy innacurate, and I could never get the calibration to work with my insane college schedule (really, who is stable for two hours when there are hormones and caffiene raging through you?). I held out for 4 months before deciding not to order another 3 month supply.

One of the other major things that bothered me was that the transmitter need to be recharged for EIGHT hours once a week. Add on the two hour calibration for every new sensor and replacing a sensor every three days. There goes 12 hours of glucose monitoring for your week.

In my mind, I expected that Minimed would change this as the technology improved, because this continuous monitoring thing was too new still. Or at least realize that they should send people two transmitters for the investment. That kind of logic is entirely false apparently. Even with a newer sensor that is FDA approved for SIX days of wear (the Enlite), you still lose eight hours of calibrating (ten if you add the two hours of calibration). This is all extremely perplexing when you add in the benefits of CGM plus low glucose suspend. If I chose those ten hours to be overnight while I'm sleeping, there goes the necessity of that feature. If I chose those ten hours to be during the day, I lose the ability to track my meal bolusing. I know that we're still miles away from "true" continuous monotoring but losing eight hours to charging the shell shaped transmitter seems asinine especially when compared to Dexcom system. All you lose is two hours a week for new sensor calibration if your efficent. Switching over has been a hard sell, my friends. But for aomeone who's struggling with perpetual hypoglycemia, I couldn't say no to a system with low glucose suspend and the timing for an upgrade just worked out.

I'm being adventurous and faithful to a company that  has served me for over a decade. I'm also trying to keep an open mind. Maybe it won't be as bad as last time. My CGM training is tomorrow afternoon so hopefully I can throw in a new sensor before bed. I will try the dual Dexcom and Enlite for a little while since I've got the mother load of Dexcom sensors left...

If you have any specific questions about the system, let me know in the comments!

Please Sir (or Madam)

So many stories to share so little time. Instead of sharing any one of the many wacky diabetes (and non-diabetes) related misadventures I've encountered recently, I wanted to mention an important initiative of the Diabetes Online Community (and therefore something important to me!):

The idea is simple. Spare just one rose from the dozen you were planning on buying for Valentine's Day. Take whatever you would have spent (a dime, a dollar, a dozen dollars) on that one rose and donate it to the International Diabetes Foundation's Life for a Child Program.

Spare a little for a cause that can turn a dollar into so much more.

You hear similar slogans often and wonder how does just one dollar change someone's life. A bottle of juice at my local gas station or grocery store costs more than just one dollar. A single test strip for the a very popular brand of glucose meters (including the one I use) cost more than just one dollar. This isn't a story about what we can't do.

What just one dollar can do is expanded when you think of places not so fortunate as where I live. And when you pool all those dollars from all the fortunate people. I'm asking for insulin, glucose monitoring supplies, and doctors appointments for someone like me. Someone who wasn't fortunate enough to live in a place with access to medical care and supplies. Someone who is dying (faster than the rest of us) because they can't get access to the same resources that I take for granted on a daily basis. Being a diabetic is expensive in America. Being a diabetic is a death sentence across the globe.

Let's help stop that! Let's give a little to do a lot. Let's give someone a shot (literally and figuratively)!

 http://bit.ly/SpareRoseSaveChild

"This Valentine’s Day, we can both show our affection for loved ones at home and give a little help to those we have some much in common with around the world. It is a simple, caring, but life-changing message." - Kerri Sparling, Kelly Close, Jeff Hitchcock, Bennet Dunlap, Adam Brown, & Manny Hernandez

To read what everyone else is saying about "Spare a Rose, Save a Child", check out http://diabetesadvocates.org/c/spare-a-rose-save-a-child/ or #sparearose!

Gotta Read Them ALL!

Prompt #1: It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love! Let’s all find a new friend today!

For diabetes based blogs and websites, I have a relatively short list that I follow on a regular basis. The rest of the random storytellers I find are the direct result of Twitter mentions with interesting hooks. I'm sure there are a handful or so that "everyone" reads because of their popularity, writing style, or particular topic (everyone has a theme whether they know it or not). Instead of scouring the internet or my friends' list for cool ones, I'm just going to highlight some blogs that are lingering in my RSS reading list that I haven't heard lots of people tweeting about. My really abbreviated and wayyy out of date side list has more. And because I'm lazy, bullet points and short descriptions follow (IN RANDOM ORDER)!

• Nerdy April's Space Adventures
  There are many struggles for a brainy woman (read: aerospace engineer) to win her right to float above us in the next big frontier. Space is definitely not the last adventure that diabetes will tag along on. I'm rooting her on and reading along. She's also getting married soon (to an engineer!), which is always something fun to hear about!
• The Sweet Life @ Blast Magazine
  So I had seen tweets by this chickabee wandering around before when I was still a lurker in the DOC. I knew then what I knew as soon as I met her. She rocks. The socks. OFF EVERYTHING. We have a lot of random stuff in common beyond our dysfunctional pancrei. We're both young, brilliant, enthusiastic, addicted to sitting in our cars rocking out to the radio, and to be brief: awesome. Also, she's a great writer and activist (especially for DHF). Read her. NOW!
• Sugar Rollercoaster
  Unlike most blogs out there that have just one person or upwards of ten people writing the stories, this blog just has two girls. They both have very important stories to share about being young-adults living with diabetes. (Side note: I don't know when I'll stop thinking of myself as a young-adult). A lot of their stories are personal tales of the day to day mental challenges with D (and trust me, from personal experience, they are just as innumerable as everything else). Plus, they live across the pond which definitely gives me a new perspective.
• Alternate Interior
  What can I say about Mr. Bosh other than he is a funny (and pun-ny) man from New Mexico. He's a little bit geek (see his d-app and profession). He's a little bit eccentric. He's totally fun. There are some people out there that just feel right when you talk to them. He falls into that category. He doesn't necessarily blog a lot but if you aren't following him on Twitter, you're seriously missing out on some awesome banter.
• Living Vertical
  Steve and Stef Richert are inspiring people. A friend put us in touch. He's the first diabetic rock climber to come across my radar, and a part of me wishes I could be him when I "grow up." Steve is a great story teller and a great photographer too. He and his wife travelling across North America climbing every single day for a year. They have some great stories about strength, finesse, and fear: things that are ever present in both rock climbing and living daily with diabetes.

HOPE for a Cure Day

March 1st was Hope for a Cure for Diabetes Day. That's a mouthful to type to label just one day. Here's my hand.

For more shots of people hoping, check out the Facebook page!

Focus on the Forward (Not the Backward)

I can't start a post about the future without touching upon the past.

This past year, I've made real connections with more diabetics (type whatever) than I ever have before. I've gone from being relatively alone (minus those silly voices in my head) on this tireless journey with my friend, diabetes (I'm thinking she's gonna have to be nicknamed Bete soon) to trying to remember who is in which time zone. I met more and more new friends with diabetes that have inspired and supported me. Just rattling off names and numbers (like a good engineer?) wouldn't describe the type of connection and hope that each person has given me through a few simple moments. I was also very lucky to get my hands on my (relatively) unbreakable Eggy who has helped me bring me a little more control. I've been blessed on all these accounts.

So the one diabetes-related thing I'm looking forward to for 2012 is building more of those relationships. Meeting more people I can lean and more people who can lean on me. Getting out into the real world a little more. Teaching one more person that people with diabetes can do whatever we set our minds to despite a paperweight for a pancreas. Showing one more person that we all have our moments of weakness and struggle. The diabetes community is vast and diverse. Sometimes it is really difficult to believe that there are so many of us doing so many amazing things. And sometimes that amazing thing is just saying hello.

Now that I'm here and now that I've found you, I can't imagine going back. Back to fighting this on my own. Back to fighting this silently. Back to fighting this just for me.

This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/january-dsma-blog-carnival/.

So much to write about...

SO LITTLE TIME.

I feel like I barely have breathing room at the moment. I was a little disappointed that I haven't been able to fill you in on all the interesting, exciting, and frustrating things going on at the moment.

I've almost survived a whole semester of doctoral work. All I have left:

• 18 Days
• 3 Papers
• 2 Exams
• 1 Presentation (not in peaaaaaaaar treeeee!)
• Many many sleepless nights...

DMeetUps:

• Babs (@babssoup) & Her Husband (@kssoup)
  Easily one of the cutest couples ever. We went out to the Macaroni Grill and it was awesome because we played with crayons on the table cloth. And Lobster Ravioli. I made them my Chocolate Chip Cheesecake Cookies. Babs and I talked for hours about... well... everything. It was fantastic.
• Cherise (@diabetic_iz_me)
  Someone who's impacted so much change wanted to meet little old me? And she had a special request for some pumpkin pie (and she got a WHOLE lot more baked loving in sugar cookie madness). I loved listening to her ideas and drive to reach as many diabetics out there as possible. Tons of fun on our brief breakfast encounter.
• Steven and Stephanie of LivingVertical (@LivingVertical) [Okay not quite but it's coming!]
  I'm in awe of these two, because they managed to figure out how to do what they love ALL the time, instead of just as a hobby. They're overcoming diabetes one rock at a time across the US everyday of 2012. They went climbing this weekend in Boston with my awesome friend, Fatima (@shahzadii). Let's just say they were on my mind and here's the photographic proof that I was on theirs!

Diabetes Adventures (in brief):

• Switched Infusion Sets from the Silhoutte to the Mio!
  - Love that I can tell the tubing where to come out from. Makes alternate sites a little less complicated
  - Had a few fights with the built-in inserter, but I think we're on better terms now
  - Not totally comfortable with removing the needle by pulling on a giant plastic hub
  - Day 3 seems to be a little on the less effective side. Play around with that later.

• I tried putting my Dexcom in on my hip (didn't go so well)
  - Thought moving my Dex to somewhere else would be easier than using alternate site for infusion sets
  - Good logic, poor execution
  - May not have worked cause I was in such a hurry (welcome to the whirlwind that is my life)
  
  
• Terrifying experience at the Pharmacy
  - Called in for Test Strips and Novolog
  - Test strips needed a new prescription but they'd call the doc
  - Arrive at pharmacy to find JUST test strips waiting for me
  - Apparently the last pharmacy (in NH) had billed the insurance for 3 months for a 1 month supply
  - Insurance wasn't going to cover more right now
  - Pharmacy in NH said they'd just give me the difference when I came there
  - Wasn't planning on making that 5 hour journey for another... 4 weeks.
  - The AWESOME Pharmacist just gave me 3 vials to tide me over and said to deal with the other people when I get back to NH.
  
  
• Won a free class at Type 1 University
  - I called in on DSMA live and correctly answered the following question:
  What are the names of the two hormones lacking in Type 1 Diabetes?
  - The answer is Insulin (which I think all of us know by now) and Amylin (which acts on stomach nerves to slow down the rate of digestion and aid glycemic control)
  - There are too many awesome classes for me to choose from so I'm picking my top 3 and letting you guys do the rest (just leave your vote in the comments!)
  *Blood Glucose Control During Sport & Exercise
  *Strike the Spike: After-Meal Glucose Control
  *Weight Loss for Insulin Users
  - Live Classes seem to all be in January so we'll see which class has the most votes in 2 weeks

Thanks for your help as always and for reading all my ramblings.

Big Blue Test

This is simple. Climb. Jump. Walk. Dance. Just move. NOW!



Diabetes or not, you can help donate medical supplies to people in need across the United States and the Globe. For more information (AND TO PARTICPATE), check out www.bigbluetest.org!

Monkey Wrenches

Life has a funny way of putting obstacles in front of you in order to see how high you can jump. This week is not particularly pleasant for me because of a Cell Biology exam I have on Thursday followed by a poster presentation with a fellow graduate student on Friday. This is kind of the norm of graduate school so I can't say that I'm terribly surprised, but I am a little disappointed to not be more out and about advocating for the American Diabetes Month. I've had to give up my facebook and Twitter feeds for a few days and it's kinda killing me (Yes, I'm one of those poorpeople who's addicted to social media...). I still read a few here and there but doing my best to stay focus is sooo difficult even when I'm in the "zone".

In the moments in between studying and programming and sleeping and sometimes eating, I've managed to at least participate and get the word out about a few really awesome Diabetes Awareness activities everyone with diabetes (and without) should know about. For instance...

• The BIG blue Test! or the big BLUE test! or the big blue TEST! (see what I did there?)
  I was in NYC helping out while they were shooting this awesome chick. (yea I'm hiding somewhere in those group shots). You don't have to have diabetes to participate. You just have to move. What's the reward? IMPROVING YOUR HEALTH! and SAVING LIVES! In the good old US of A and across the globe. All you have to do is exercise for 15 minutes. No silly signing up either! Check it out at www.bigbluetest.org
• Blue Fridays! With awesome giveaways! Even doable on rainy days! Bonus points if you wear blue everyday?! (okay, no more rhyming. I promise)
  Every Friday in November, wear a little or a lot of blue to raise awareness! In your hair, on your nails, with your friends...T-shirts, socks, and bathrobes will do too! Check out the Facebook page here! and follow #bluefriday on Twitter!
• Team Type 1's Run Across America
  If there were ever a group of people I'd follow off a cliff, it would probably these 10 (or 11) guys. Phil Southerland (the CEO) is a great guy, and he's a constant reminder that diabetes doesn't hold any of us down from surpassing our dreams. This group of diabetic athletes is running from coast to coast, and they are estimated to land in NYC on November 14th!
• Blood Sugar Testing Flash Mob in Times Square
  I'm gonna try my darnedest to make it out to Times Square for a Blood Sugar Testing Flash Mob in Times Square on noon on Sunday, Novemeber 13th in front of the Kodak screen. If you can't make it, help out this fantastic young man by sending a picture of you and your friend Diabetes to kodak@aerva.com to be there in spirit!
• World Diabetes Day Postcard Exchange
  Art is always therapeutic, but in this case, it's doubly so because I get to reach out to someone. I was assigned an awesome PWD (or their family, friends, and awesome associates). I get make some art for them. And then I'll get one. Let's hope it's something that doesn't turn out like those finger paints when I was three...
• World Diabetes Day
  Blue Monuments. Diabetes Awareness Events. Reach Out and Hug A Diabetic Events... I may be trapped in class all day, but I'll do something awesome for it all on my own if I have to!

Alright. I have another story to share but it's going to have to wait. Wish me luck on my test.

The Diabetes Online Community

So I've written about this before here, but for you guys who don't know:

I was a "bad" / somewhat "non-compliant" diabetic for many, many years. When I was diagnosed, I was 9 years old and at that age, everyone looked at me and though I was pretty smart and responsible. I had a fantastic Pediatric Endocrinologist for a while that kept me motivated enough to stay in line. But between her moving to another town and me starting high school, things started deteriorating slowly. I was never a fan of checking my blood sugar (really, who is ever?) and while I took my insulin, it was usually after the fact.

Fast forward through high school, undergraduate college, and my first year of a masters. I had only been in the hospital for one hypoglycemic event in my junior/senior year of high school (where I majorly miscalculated the number of carbs I ate at a party but I was at home so my mom found me, injected me with glucagon, and called the paramedics). Even though I tested occasionally and took insulin through my pump, I wasn't REALLY taking care of myself. Everyone assumed my that my intelligence and responsibility from school stuff translated to my health but that was far from the truth. A friend had come across and article somewhere that featured a prominent DOC blogger (sixuntilme.com). I slowly started devouring her blog posts as far back as I could manage. And then I found another (textingmypancreas.com). And another. So on and so forth.

Reading all their posts made me think, "Hey. If they can do this, why can't I?" Yes, we live different lifestyles. Yes, we have different goals for the future. Yes, diabetes is different for every person. But in the end, there's a lot about living with Diabetes that is the same. Vigilance (lots and lots of blood sugar testing). Healthy Eating (and correct carb counting...). Exercise (running, climbing, playing, working, etc). Regardless of what can be different, finding the Diabetes Online Community has been inspiring. My HbA1c has gone down and become more consistent. I'm testing more often. I'm eating healthier. I'm exercising more.

All of the members are unique but we all have something in common. There's someone to support each and every person. We all have a story to share and we all make a difference to someone else. Whether it's a hello, a smile, or a good joke, every letter typed matters. Sometimes it leads to actual changes in our medical treatment (which pump/continuous monitors/glucometers, better infusion sites, doctors) but it always leads to changes in our outlooks (attitudes, & perspectives) on this crazy life with D.

This post was written as part of the JDRF Juvenation Blog Carnival for National Diabetes Month! For more information, check out their post here or Juvenation.org!

No D Day!

So today is the day. The No D Day. No Diabetes talk. Not on Twitter, Facebook, Google+, or where ever else you love to talk online about your best friend for life, Diabetes. To see some awesome stories, go here and check out George, the guy who came up with this fantastic idea.

(For a little bit, I thought No D Day was supposed to be a little like Fight Club. The first rule of No D Day is that we don't talk about Diabetes. We don't say the word. It's really about finding out more about who a person is without Diabetes. But the thought made me laugh.)

So I anyone who has been reading about me already knows about my love for Rock Climbing (thus the blog name) and Ultimate Frisbee (the 10 or so discs on my wall shouldn't tip you off at all). You know I'm a giant science lover (but one who has social skills and can rock a dress), which is apparent from my 6 years of higher education for Biomedical Engineering with many more ahead of me. So what else don't you know?

I love to bake. Not cook. Because while I can whip up some delicious stuff with herbs and spices, my stomach really loves the satisfaction of good cookie or fresh pie crusts.

Apple Heart Pie!

Turtle Cheesecake

Pumpkin Pie from Real Pumpkins!

(Why don't I have pictures of my cookies? They all get eaten up too fast...)

Other cool things about me? While I don't sing nearly as much and as awesomely as Zooey Deschanel on the New Girl (if you're not watching it, you have to see the pilot!), I sing along to anything whether or not I know the words. I'll sing loudly and softly. In bed. In the shower. Especially in my car. I used to sing in the choir from grades 1 to 10, and then science took over my life (all those AP Classes saved me some time in undergrad). I'm thinking of joining some sort of casual singing group (in all my extra free time...). Also, despite not celebrating Christmas, I absolutely love Christmas carols. Once when I was in high school, I actually got to sing at Carnegie Hall with the NJ Children's choir. That was an incredible experience.

Other random tidbits?

I don't own a TV. If I did and I had cable, I might never get out from in front of it (happens with Netflix/Hulu sometimes).

I'm really lazy with certain chores. One time, I actually bought myself something to wear for 2/3 more days from Walmart because I had avoided doing laundry for 3-4 weeks.

I love filing my schedule to the brim. Back to back appointments 24/7 if I could. I like being busy, and I've learned to stop complaining about it. I can't handle the restlessness of having nothing to do. I've only recently started being more prompt for things. Otherwise, I'd always be running between 5 and 15 minutes late.

Diabetes Wonder

I have gone from feeling like a diabetes burnout super-freak to feeling like the diabetic wonder-child.

Today, I visited a Certified Diabetes Educator in...3 or 4 years. My mom and I had an awesome relationship with my last CDE. When I outgrew the peds clinic and my parents moved to NH, I transferred to Dr. Awful and hadn't seen a CDE since. What that meant is that some of those awesome Diabetes skills I had acquired over the years (aka knowing what to do in emergencies, how to rotate my sites, tips and tricks) had gotten a little rusty over the years. For instance, my pump broke and I tried giving a shot into my arm muscles instead of arm fat. If you're really that curious, remember that I highly recommend AGAINST it.

Anyways, I had a few discussion points I was interested in: Alternate sites because my stomach is starting to look like Swiss Cheese; Adjustments to my Insulin to Carb Ratio: More tips for dual wave bolusing cause what I've tried so far hasn't quite worked.

All in all her answers while mostly textbook were all laced with the same theme: You're an empowered, smart, and motivated Diabetes patient aka wonder-child. She raved about how good everything looked and how I should stick to what I'm doing with some slight modifications here and there.

Now all in all, I haven't been anywhere near a good diabetic patient in years. What changed? I got a Dexcom and started reading more about awesome diabetics online. Actually, truth be told, the reading was probably what motivated me to switch to the Dex. Point is that behind every "good" diabetic is a lot of people: Doctors, Family, Friends. Ultimately, having someone who knows what it's like living with this crazy condition day after day really gives you a kick in the pants. It makes you aspire to be better and remember that you're human. So, thank you DOC for motivating me to take better care of myself.