Blue Friday- Tweet Tweet

This Dex has definitely seen better days and this morning was more unstuck then stuck to me.  Tomorrow will be a fresh start with a new sensor but for today, I give you my version of Blue Friday.  My co-worker just informed me today’s design is her favorite, so far.  Obviously this only encourages me to top my own Dex decorating ways.

Happy Friday. xo

Robots for my Robot Parts

Please note: I’ve never met a sequin or piece of glitter I didn’t like.

You MAY have noticed, I have gotten VERY into decorating my Dexcom.  When it’s starting to look fuzzy around the edges, I go into fancify mode (yeah I made that up).  IV300 works best on top of the stickers (keeps ’em on) and I need it anyway to help my Dex last a few more days.

Yep, that’s right.  Pink ruffle dress and oh, wait, what’s that there?  Looks like a Dexcom site.  But there’s something on it.  A little glittery?  A little shiny?

So yep, here are some robots, you know, to go with my robot parts (of course). I am only responding to the name Mrs. Roboto today (or until it’s time for some new decorations).

I have entirely too much fun with this.

Egg And Toast Please

This morning I stopped by my office building’s cafe to grab some breakfast, my standard, multigrain toast and a hard-boiled egg.  Today I am wearing a black sleeveless dress and amazingly, (see pic from yesterday’s post), my fauna decorated Dexcom still looks perky after a shower (shocking, I figured it would dissolve). The Dex in my arm doesn’t seem to ever blend-in but the contrast today seems more significant.

The woman behind me in line asked, “What’s that on your arm?”.

Me: “Oh I’m diabetic and it’s a continuous glucose monitor so it shows me blood sugar trends” (pointed at Dex receiver on top of my phone on counter).

Lady: “Oh my friend has diabetes but he has a…. ummm…” (pointing to her hip).

Me: “Oh an insulin pump.” I grab my pump thru my dress, attached to underwear so she can see the boxy shape on my hip.

Lady: (looking confused). “Oh his pump takes care of everything, he doesn’t need anything like that” (pointing to my arm).

Me: “Yes, the thing in my arm gives me glucose readings.  It helps me make decisions with the pump and alerts me if my glucose is too high or too low.  It’s a new technology that’s been really helpful for me.”

Lady: “The only problem he has with the pump is if we go to the theater and it goes off going through security, but otherwise it takes care of EVERYTHING.”

I’ve decided I MUST find this theater loving man with a pump that takes care of EVERYTHING.

This week has been filled with incredible BG frustration (and yes I am still taking +10% to +20% temp basal & multiple corrections per day with mild success).  I got in the elevator and felt angry.  In my moment of anger and frustration, I thought how much I would like to smack the man with his pump that takes care of everything.  He has done a disservice to me and many others like me, letting this woman roam the earth thinking that his pump is a cure and its biggest frustration is that it sets off a metal detector sometimes, you know, at the theater.

Are you free?

Below is the email I finally finished (I usually have this letter ready to go in June so I am terribly behind this year) to get my friends and family to sign-up for the 2 walks I will be participating in on behalf of JDRF.  I’ve organized/led Alecia’s Stem Cells since 2001.  We have walked every year, rain or shine, since then in NYC, across the magnificent Brooklyn Bridge. In order to keep people involved and interested, I have made it my mission to constantly change things up.

I did 2 walks in two cities in 24 hours 2 years ago (Boston & NYC). I’ve hosted give-aways, walk kick-off parties and post walk parties.  I’ve worn pirate props along with 30 of my friends while walking 3 miles.  I’ve made videos.  I’ve sat in the dark at Battery Park waiting to do TV interviews at 5:30am about why I walk.  If you haven’t guessed it, this is an event near and dear to my heart and this year I will have the largest turn-out of my immediate family we have ever had.  My parents, both brothers and their wives, my sister and hopefully my new niece or nephew are all registered to walk with me.

I’m posting this note to invite you, the DOC, to come join me.  Its a great day for a great cause and I would be thrilled to have us walk together!

As you may know (OK seriously, who doesn’t know?), I have lived with type 1 diabetes (T1D) since I was 6 years old. I have managed to stay alive thanks to insulin but insulin is far from a cure. I am committed to JDRF, the leading global organization focused on T1D research.  JDRF raises funds that power the global movement to cure, treat and prevent type 1 diabetes (T1D).  The goal of JDRF is to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating and preventing T1D.

In the past year, I’ve embraced some new technologies and have become further involved in diabetes advocacy.  I suspected I was having inconsistent low blood sugars in my sleep. I was not experiencing the symptoms of low blood sugar until I was already in the “danger zone” (hypoglycemic unawareness) which terrified me since there are too many of stories of people who hit that “danger level” and simply never wake up.  I now wear another device along with my insulin pump.  It’s called a Dexcom sensor and is inserted into my tummy or my arm (I prefer the arm since my insulin pump is on my stomach).  The Dexcom sensor gives continuous blood glucose readings to a receiver which is always with me and helps me make smaller and faster changes on my insulin pump.  The cool part about the Dexcom is that it gives me trends with my glucose levels although I still have to check my blood with fingersticks throughout the day.  Most importantly though, an alarm sounds if my blood gets too low (and I feel so MUCH safer at night).

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I also completed training to become a JDRF mentor.  The experience was eye-opening especially about issues currently facing many diabetics and their families.  Listening to stories of bullying and depression that often walk hand-in-hand with any chronic and degenerative disease was heartbreaking.  After a truly horrific experience involving an insulin pump emergency on an airplane, I realized that MY story and experiences with managing this disease could help other people, especially parents of diabetic children. Through a series of coincidences or simply fate, I started writing and advocating in the process of trying to give back.  I realized I was getting something out of this too… encouragement not only from my fellow diabetics but from other people who heard and read my story.  I had no idea how much that encouragement would relieve my own sense of stress (and that I’d learn some new diabetes tips in the process).

Amazing advancements are happening all around us and to keep this momentum alive, I am asking you to walk with me!

This year’s Walk takes place in New York City on September 30, 2012, AND we will also be walking in Los Angeles on November 11, 2012.  I’m writing to ask for your support. Now more than ever, you can make a real difference in my life and the lives of all people with type 1 diabetes. Please either join my team, Alecia’s Stem Cells, as a walker, fundraiser or support me with a donation. It’s simple, fast and fun AND we will of course go out and watch football afterward!  Please visit my personal page to get started.



Thank you for your support!

xo Alecia


My Diabetic Perks

Ok the title is a stretch.  Like a HUGE stretch.  I wrote the list below as I struggled with the JDRF walk letter I STILL have not written (11 years organizing a walk team and this is the furthest behind I have ever been).  There are a bunch of other things for this list but for now, this will do.

My Recent Diabetic Perks:

  1. I am not scared of hospitals.  Nope, not me.  When a friend or family member is ill or hospitalized, any fear I have, I can shake it off.  I’ve been in scary hospital situations myself.  I know what a helpless feeling it is.  I will move mountains to alleviate that fear for someone else.  I’m like a candy-striper gone a little rogue.  I know the power of being pleasant at a hospital.  Saying, “thank you” works wonders.
  2. I appreciate my life, greatly.  I know just how incredibly fortunate I am.  Insulin was discovered only 90 years ago (crazy right? Check out Breakthough).  Many huge insulin refinements have happened within my own life time (also my college application essay was about how I’m a drug addict… an Insulin Junky… I got into a bunch of colleges.  Maybe it was a good point?).
  3. I know how to read all sorts of medical tests without any medical training.  Yes, that’s right.  One example, I have had enough lasering within my eyes, and reviewed enough photos of my eye interior, to have established an intimate relationship with my peepers.  My doctors even give me interior eye photos to take home with me. Eye pics?  Yep, cool.
  4. I (almost) always have snacks with me (if we ignore that whole Gettin’ Low incident).  I’m the friend when you need a sugar-rush.  My refrigerator is 3 deep in juice boxes. You need juice, I’m your lady.  I even keep a juice box next to my bed. If you are interested in developing cavities, stop by. Today’s purse assortment includes glucose tabs and Starburst.
  5. I auditioned for a TV commercial.  Yep.  I auditioned for a commercial for the manufacturer of my insulin pump.  They only wanted “pumpers” who used their product.  I LOVE my pump and it sounded like an adventure.  The whole thing was a complete disaster, I couldn’t remember the lines, and I got a case of the giggles so bad I am pretty sure I almost peed my pants.  They gave me a zillion tries.  The lines were ridiculous and the complete opposite of how I would ever naturally speak but it provided us with hours of laughter and teasing.  M was there, you can ask him.  I never would have had the opportunity and the fun story to tell, if I weren’t diabetic.
  6. I am good at sucking-up and then fighting with health insurance companies. I will pour on the charm, and when/if that doesn’t work, yes, I will fight.  I will fight and fight. Don’t get me wrong, I play fair, but don’t deny me my rights because I will pull out ninja moves you didn’t even know existed.
  7. I exercise.  I may slack off a bit in the gym from time to time but I have an incentive to work-out.  I have to.  I need to keep my diabetic heart working.  A working heart is a loving heart and after all the fighting (see #6), I need to keep the ticker ticking.
  8. I know the carb count in tons of foods other people will never know.  I like a lot of weird foods.  My current new fave is Lebanese food.  There’s a dish that’s brussel sprouts, grapes, fig jam, walnuts, and mint yogurt.  I’m working on the carb count on that one.  It’s heaven.  Heaven needs a carb count.
  9. I have overcome my fear of peeing my pants.  I was very ill on a flight (That story does still turn my stomach).  The cannula (tube that goes under my skin) was bent and I got sicker and sicker.  I threw-up more than anyone ever should and when I did eventually pee my pants, I wasn’t even upset.  Big deal.  Babies pee their pants all the time (granted they are wearing diapers and not a knit dress, but hey I had bigger problems).
  10. I hesitantly wrote a blog because I realized there are diabetics (especially parents of diabetics) who might learn a thing or two from my experiences.  Diabetes gave me something to talk about.  What I didn’t quite realize was how nice/encouraging/ stress relieving it would be to expand my diabetes friend circle.
  11. Recently I responded to a message I saw on twitter,  It was a request to help a little girl with an insulin pump who found out she had to get glasses.  She was worried she would be bullied or “not pretty”. Over 50 diabetics responded in a matter of hours and some amazing T1D women made a video of all of us in glasses and with insulin pumps.  Regrettably I MAY have overdone my dance moves.  The video has been viewed on YouTube a lot (yikes) but its heartwarming to know that I belong to a group a people who would all jump to boost the confidence of one of their own.
  12. Diabetes has made me smarter.  I was bright enough to notice signs I was having dangerously low blood sugars at night.  I went to my doctor and told her I wanted a Dexcom (continuous glucose meter).  I now know how to take a barbaric looking device, attach it to the back of my arm, and inject a piece of metal under my skin, hook it to a computer chip and get the inserter off me with a bra strap over a doorknob.  Diabetes has clearly brought out my inner McGyver!