Relax. Don’t Do It.

I consider myself a cyclical sleeper.  That is I go through phases of sleeping like a normal person and hopefully getting balanced sleep and then phases of extremely interrupted sleep or just a pretty acute lack ‘o sleep.

2 weeks ago I was visiting my parents.  I have a truly beautiful and happy-go-lucky little nephew.  I am pretty sure my nephew would love to get to know my dog better.  My dog seems quite determined to bark like crazy every time my nephew makes a peep.  My otherwise awesome dog woke my nephew up once within hours of his being there.  My awesome dog is a jerk at my parent’s house.

pop tongue

My happy-go-lucky nephew’s crib is in the room next to where I sleep.  If you are not used to the Dexcom high or low beeps, they are fairly loud in a not so densely walled house.  I decided to switch from my overnight Dexcom audio to vibrate.  I even slept in PJ’s with a pocket so I would feel the alarm.  The Dexcom ended-up out of my pocket and under my ribs while I slept.  I had run earlier that day and the weather had been quite hot (anyone else see the low bg coming in this story?).  My vibrating ribs woke me up (If I’m ever in a band I will call it Vibrating Ribs).  Glucosticks to the rescue, back to sleep.  More vibrating, more Glucosticks, back to sleep.

This formula worked pretty well (not counting going low in my sleep twice… ahhhh running).  The vibration woke me up both times.  Great.  Dex rocks and no one else woke up.

So I got lackadaisical.  Who me?  Lazy?  No, say it isn’t so.  Careless?  Say What?

Yes, me.  I have probably put my Dex on audio overnight 2 times since visiting my parents.  Both times it was on days I did killer workouts.  Otherwise, it was a nice break to not hear the beeping at 171 when my HIGH beep starts at 170.  I have been sleeping with Dex on my pillow.  Sometimes Dex slides off and is under my arm, but I haven’t been running too low so yes, I thought all was well.

I spend a lot of time worrying that I will be another statistic of Dead In Bed Syndrome.  I worry that I will miss vital medical treatment because no one will know I’m unconscious in my bed.  I worry that if these scenarios happen on a weekend, my office won’t know to look for me until Monday and by then my body will stink and my dog will have possibly eaten my fingers (if you are squeamish, I absolutely should have warned you that I love shows like Criminal Minds and Dexter.  Oops.  Sorry.  Walk away from the blog now).  I got a Dexcom 7+ a year and half ago for EXACTLY these scenarios.  Every time I read of a case of Dead In Bed, I thank my lucky stars I have my Dex G4 and that on quite a few occasions Dex wakes me up, NOT my own body.  So why, WHY, would I relax about the audio on the Dexcom?  Why would I trust vibrate?  Because it worked before and therefore would absolutely do the trick again?

Diabetes dummy.  There is no relaxing.  I’m not a rookie.  I am however someone who’s been waking up with perfect bgs at 3am and finding myself unable to fall back asleep for hours.  Oh sleep, I need a good night’s sleep.  I didn’t turn off Dex, I just switched to vibrate.  That’s OK, right?

LOW bg

This morning I woke up and immediately felt the fuzz of being low.  I laid there feeling low.  My phone alarm would be going off in 5 minutes.  Oh I should hit snooze.  The alarm hadn’t gone off yet though.  There was no snooze to press.  Then what’s that noise?  Wait, I feel low, not like emergency low, but I-am-not-quite-right low.  Oh Dexcom.  Under my arm.  Dexcom.  Maybe I went low overnight.  No, I’m low right now.  65.  On the other side of me, in my bed, glucose tablets.  Grabbed them.  Ate 2.  Phone alarm went off.  Hit snooze.  Dexcom kept beeping.  66.

66 bg

Ate another glucose tablet.  Sat up in bed.  Fuzzy headache.  Looked at Dex.  Still too low.  Been low for awhile.  Scrolled back.  Horror.  I’d been low since shortly after 2am.  Took pics of Dexcom screen.  I should blog about this.  THIS is MY fault.  Sit up.  Dog is awake and burying head in pillow.  I am exhausted.  Head still hurts.  I am not shaky.  I don’t feel great.  Ask dog to make me coffee.  Nope.  He still won’t learn to do it.  He flat out ignores me.  Turn on TV.  Dexcom is buzzing.  It’s now under pillow.  Pillow keeps buzzing.  Still in 70s.  Check meter.  Yep, 70s.  Dog is back to sleep.  He’s not making me coffee.  Go make myself coffee.  Sit on bed.  Dex keeps beeping.  Under 90 pic (my low setting).  This is my fault.  Tweet pic of Dexcom.  Think back on my evening.  Didn’t each much.  Didn’t bolus much either.  Strolled 30 blocks after while I chatted with my Mom on the phone.  Was in 180s pre-bed.  Took conservative correction.  Hours later I dropped.  I never turned on the audio.  I know better.  No one would know I was dead or unconscious.  Drink coffee in shower.  Listen to Beyonce.  “I’m a Survivor”.  Rub-A-dub-dub.  No crying.  Things happen.  I am fine.  Get dressed.  I love this dress.  No one would have known I was dead.  Double arrow up on Dexcom.  Bg is too high now.  Take correction.  Walk out front door.  Eyes get misty in hallway.  Fight back tears in elevator.  I am tired.  I finally slept through the night.

THIS was my fault.

Turn Dexcom audio on.

 

Kicking It in NYC

ASC sign1Let’s face it, I’m really not sure there will be a cure for Type 1 Diabetes in my lifetime.  I do know though, I will absolutely be part of finding the cure for Type 1 Diabetes.  This dream, idea, vision of mine has grown with intensity as I’ve gotten older.  I’ve been a T1D for 34 years.  That’s a long time.

I became involved with JDRF, because of my parents.  JDRF was their calm in the storm after I was diagnosed in 1979.  JDRF was still in its infancy at the time, but now stands the largest charitable supporter of T1D research.  JDRF and the families my parents met, managed to give my family HOPE.  My parents passed this HOPE along to me.  At 6 years old, my parents showed me what it’s like to pour your self into a cause and to BELIEVE. (check out my Mom’s 4-letter word)

In 2001, I founded Alecia’s Stem Cells in New York City with a tremendous amount of help from my friends.  A lot of things have changed in my diabetes world since that time.  One thing that hasn’t changed though is that our team is still based on friends and family who are willing to sacrifice their time and money (and often lend their creativity). They too will BE part of the Cure.

asc dodgeAlecia’s Stem Cells has had teams walk in Queens, Manhattan/Brooklyn, Boston and Los Angeles.  Our team has raised OVER $200,000 towards JDRF’s mission to cure diabetes by funding crucial research!  This is incredible and this is because of YOU!  YOU too are part of the CURE.

 

This past November, I was asked to speak along with Michael Strahan at a JDRF NYC Fundraiser.  It was a fun event but most importantly, it gave me a chance to share my view.  I got to tell parents of T1D kids about my story.  How I’ve been diabetic for 34 years, about how I DO understand how they may be angry that there isn’t a cure yet, but how I am proof positive of how technology has changed and is advancing diabetes care and treatments.  I told them how I envy their children. I told them that the glucose monitors and insulin pumps I use along with their children simply didn’t exist when I was their child’s age.  I told how to check my glucose levels,I would pee in a cup and add some chemicals and that gave a glucose “range”.  THAT range that was flawed.  I showed off my Continuous Glucose monitor that I wore on my arm.  I explained how these technologies are not a cure BUT they are advances.  They are advances that come from critical research. Research is the key component of JDRF.

This June, I was honored to be voted to the Board of JDRF NYC.  At the same time, I also became the Coordinator of JDRF’s Adult Type 1 Group.  Both of these opportunities will hopefully enable me to take another step in my NEED to make a difference.  Government advocacy and peer-to-peer support?  Yes, sign me up.  There’s a third part to this news though.  I consider it my diabetes TRIFECTA.  I’ve started the process to participate in diabetes clinical trials.  Maybe Alecia’s Stem Cells should be Alecia’s Lab Rats?

So one last thought, I’m 40 years old now.  I think about how someday I won’t be here anymore, but hey, none of us will.  I wonder what my legacy will be.  I hope that my nephew and soon to be either niece or nephew live healthy and happy lives and have families of their own.  Maybe they will mention me as their creative aunt.  I HOPE they remember that I always followed my heart.  I REALLY HOPE they never have to worry about T1D in their own children.  I HOPE that someday they talk about how their aunt had a friend who told her one time that there are two types of people… victims, and ass-kickers and their Aunt Alecia was an ass-kicker and yes, she helped cure diabetes.

I am not willing to sit back and wait for change.  I will be part of it.  Be part of it with me. Grab your sneakers and walk with me.  Walk for the other 3 million people in the US who are also fighting T1D.  Walk for hope. WALK FOR MY HOPE.  Support our team. CHEER US ON!

You can join and/or support Alecia’s Stem Cells at: http://www2.jdrf.org/goto/AleciasStemCells

Xo,

Alecia the Ass-kicker

WALK 2012 - Brooklyn 1/2 way mark

Updates, Cussing and Such

Busy, busy, busy so a quick update (also I have another post after this one):

  • I never finished the post about my eye doctor appointment.  So here’s the short summary.  I am fine.  I took lots of pics at the office.  I was there for HOURS.  Is anyone losing sleep at night because I never wrote the down and deep about my eye doctor appoint?  No?  Okay, let’s move on and I’ll get info together for another time.
  • I read this earlier today:  “To strengthen the muscles of your heart, the best exercise is lifting someone else’s spirit whenever you can.” – Dodinsky.  Do Good, Feel Good.

    Brooklyn heart

    Found on Sunday in Brooklyn Heights

  • My ongoing issues with my pump sites going bad immediately after inserting and blood bath moments in my bathroom have remained but I have had 2 good sites in a row so that’s encouraging.  The discouraging part is my insurance won’t budge on my allotment of sites.  I went through 6 in a weekend.  I will be completely screwed towards the end of this 3 month prescription and forced to either leave in sites too long or switch back to shots.  No way Jose.  I’m an Inset kinda girl.  I like awesome packaging the doubles as the inserter.  I like pink and blue sites (I’m totally anti green though.  TOTALLY).  Today I was able to try out the Inset 30.  Things have changed since I used the equivalent version (Silhouettes) back in my MiniMed pumping days.  Although the needle still looks obnoxiously rude (like it’s going to spew curse words I’ve never even heard at me), there is now an inserter.  Yeah, I was nervous putting it in but not that pale, sweaty way that used to happen as my hands shook back in my manual insertion days.  It’s funny though that just looking at this new (well new to me) site took me right back to my first NYC apartment and pep talking myself as my hands shook trying to get those damn sites in.  So, I am currently wearing my old blue Inset (I can’t risk another blood bath at work.  Mint green pants and a white lace shirt SO does NOT go with my ruby red blood).  I also have my Dexcom on my tummy.  I am one hot stuff robot lady today.  Woo Wee. (I can’t show the Dexcom because  I’m keeping SurfaceFine PG… well for today). 

    2 sites.  1 tummy.

    2 sites. 1 tummy.

  • I have finally finished my JDRF Walk letter.  I wrote an earlier version that I tried out on a few people last week.  It had one of 2 reactions.  It either made people cry, like really cry and hug me or TOTAL radio silence.  Like no email, text, IM silence.  Oh well.  My new letter is a bit long but it touches on what I think is important.  Once I clean it up a bit, I’ll post it here. 
  • I need to stop cussing so much.  I’m not sure if this is diabetes related or not.  F*ck Diabetes?  Yeah, totally diabetes related.  Oh and PG is over now.

Diabetes Thoughts and Notes

  • I love this idea from Chris over at A Consequence of Hypoglycemia Seriously, how could you not like this idea? #DBlogCheck ! Do this. It’s a great Do Good, Feel Good to start off the week!

2Dexcom

  • I am back in business (see previous post). My broken slidy door Dexcom needs to be sent back ASAP, but for the weekend, I was monitored by 2 glorious blue G4s. It was perfect timing for #BlueFridays (and some pretty nice pre-lunch BGs from Friday too).
Training starts when?

Training starts when?

  • JDRF is involved in the Disney Marathon (and 1/2 marathon, 5K and 10K). It’s actually called the Disney Princess Marathon. I’m not going to hide it. This intrigues me (heck, I’ve already got the ears right? A friend recently got them for me and my name is even embroidered on the back. Oo-la-la). I would have to get rid of the shooting pain that keeps happening in my left knee when I run. I’d also need to actually train. Going to Disney World to run a 5K would be funny. Going to Disney World to run a 5K AND raise money for JDRF? Sounds kind of awesome (and still funny).
  • I’m a big fan of Katy’s over BigFoot Child Have Diabetes. As someone who did not go to the FFL conference, I enjoyed her recap of all the events and activities (she also cracks me up).
  • Am I the only one who thinks this looks like some sort of vampire call signal? I watch too much True Blood I guess.Vampire Call Signal
  • Are you going to be in NYC on Sunday, September 29th? Want a GORGEOUS view of NYC from the Brooklyn Bridge? How about getting a little exercise? Come join Alecia’s Stem Cells! Our goal is simple, to assist JDRF in it’s mission: to find a CURE for diabetes and its complications through the support of RESEARCH! If you’d like more information on ASC, we’re on Facebook too.
  • Also, if your looking for some in real life D bonding, JDRF NYC hosts a New York Metro Region group for adults living with or new to type 1 diabetes (T1D). The meetings are monthly at the NYC office “to greet and chat with one another in a safe and supportive environment”. Last week we had fun presentations from John at ShugaTrak and Caitlin at TypeTanks and then some of us went out afterward. If you’d like more info, please check-out the JDRF Metro NYC T1D Adult Group page.
  • And finally I am off to my diabetes eye specialist. I was supposed to go in May. Life got in the way of my remembering to make that appointment. My doctor’s office treats a D celebrity. My doctor has done amazing things for my peepers. I have tons of reasons not to be scared. I’m scared.

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Don’t Bite Me (Keeping it PG)

Got to the gym early this morning.  Not nearly as early as I had hoped, but I made it.  My overnight Dexcom graph was awesome.  The basal rate changes I made a few weeks are working (well the overnight part at least), amazingly! My Dexcom numbers turned to “???” during my workout.  No biggie, short workout and the sensor (disappointingly) was ready to be changed.

Made it home to shower and a wee bit tight on time (Late for work?  Who me???).  I kept my Dexcom sensor on, hoping it would spring back to life while I scrub-a-dub-dubbed. Scrub-a-dub-Nope.

I inserted a new Dexcom site on my lower abdomen. OUCH-to-the-MOTHER-CHUCKING-OUCH!  I took the brain (ok transmitter) out of my former site/sensor but for some reason I just couldn’t get that damn brain to click into the new, why-are-you-biting-me sensor.  Was I LOW?  I’d been in range at the gym before the “???” started.  Hmmmm.  The sensor site still hurt, the brain just wouldn’t snap in.  I COULD get the brain (ok transmitter) to click back into the sensor that was now dangling from the edge of my bathroom sink (so everything seemed to still be working, right?).  The site still hurt, less like a “mother-chucker” and more like a “what-the-H-E-double-hockey-sticks”.  As I kept trying to line-up the brain, I noticed something.  RED.  I took a photo to get a better view (ahhh technology).  Yep, blood coming through the sensor.  The theme song of The Beverly Hill Billies started playing in my mind.  You know the scene in the intro when Jed shoots the ground and oil starts slowly bubbling to the surface?  Yep, that was happening with my Dexcom site.  Damn I was really going to be late for work.

Ouch!

Ouch!

I replaced the Dexcom site, cleaned myself up, decided on a hair style I refer to as No-hair-style, and rushed to work.

If you know me, you know how very much I love my Dexcom.  One might even say I am IN-LOVE with my Dex.  So here’s the silver lining part of this story.  I called Dexcom.  I finally got a human.  I actually have no proof she was human but my gut instinct says, yes, human.  I told her the story.  I didn’t have any of the packaging information.  I have to send Dexcom the information when I get home.  They are replacing the sensor.  Yippie Skippy.

While I waited on the phone for the human, I remembered something.  That slidy door on my G4 receiver doesn’t close.  It hasn’t lost it’s sliding ability, but it gets caught on the plastic body that seems a wee bit cracked (What the heck am I talking about?  Check the photo below).  So after I went over the whole sensor-bit-into-me story, and agreed with the human lady that yes, I agree and believe I’ll have a nice bruise too, I told her about the chipped plastic no-slidy door issue.  It took maybe a minute.  My replacement sensor and my replacement receiver will arrive next week.

Dexcom chip

Dexcom chip

So maybe the pain, wasted sensor, late for work, bruise, waiting for a human was sorta worth it.  I should have called weeks ago about the receiver but kept forgetting (read: procrastinating).  Silverish lining?  Yes please, I’ll take it.

 

 

******** UPDATE********: That human lady from Dexcom was right…I’ve got a bit of a bruise.  Also I received an email confirmation that my replacement sensor and new, non-chipped receiver have been shipped as well.  All good.  Tough as nails.

New Dex sensor and my previous bleeder bruise.

New Dex sensor and my previous bleeder bruise.

 

 

 

*******2nd UPDATE********  I guess that chip broke off at some point.  The slidy door made a run for it.  Amazing timing by me!

Dex door

 

Dexcom in the Elevator

What a morning.

Early Gym intensive? Check.

Dog leaving me 3 “traps” and my stepping in 1 as i stepped out of the shower?  Check.

A LOT of cursing at said dog? Check.

By the time I got into the elevator to go to work, I was saying, “Good Morning” through gritted teeth.  A full elevator.  I was frantically trying to pull down my dress which was caught on my overflowing laundry bag while still telling my dog he was in BIG trouble.  I was completely unaware that the older gentleman to my side was addressing me. I was more concerned with getting Bad Dog on his leash and my dirty laundry not falling around my feet.

The gentleman asked again, “Does that work with your cellphone?”.

Hmmmm?

My Dexcom sensor was right in his line of vision.  It’s at the beginning of week 2 and kind of a bedazzled mess (hey I take pride in my bedazzled Dexcom designs and this sensor has lost a few rhinestones along the way.  I know this because 2 came off in my second shower this morning… you know, the one AFTER I stepped in the dog trap).

dEXCOM ELEVATOR

I now had the attention of the other 2 people in the elevator as well.  I explained to the man that it’s a Continuous Glucose Monitor. Seeing the blank look on his face, I quickly added, it tells me my “blood sugar”.  Still blank.

“I’m diabetic”.

He quickly said he was sorry.  And that he didn’t mean to offend me.

We were out the door by this point and I was attempting to explain to him not to be sorry, but I was already losing the laundry bag, Bad Dog was attempting to pee on the front step (!!) and I was fairly certain my favorite, cozy summer dress was pulled-up and flashing my knickers to most of my street.

I kept thinking about it.  Was he sorry that I’m diabetic?  Dude, me too!  Well most of the time, me too.  No, he was sorry he asked about my cellphone that is inserted into my arm. Like he displayed bad manners or something.  I’m in a sleeveless dress.  I’ve got a weird looking sensor in my arm.  It’s decorated with multi-colored, multi-sized rhinestones.  I’m fairly certain this screams, “Ask me what’s on my arm”.  Or it screams, “I’m a girl who likes pink and bling and making stuff”.

I look forward to seeing my neighbor again.  I look forward to explaining to him a wee bit more about my Dexcom and how it’s a great way for me to talk about diabetes technology and why that’s important.  I then plan to speak into my arm and pretend I’m taking a call to my Mom.

Wordless Wednesday The Back Story

It’s been a challenging couple of weeks. My steady stream of shirty BGs have proven that bronchitis and diabetes are a horrendous combination. My health has started to improve in the last 3 days. These pics are from yesterday. That 125 made me want to cry with joy. That line looks divine. Scrolling back, you see the real story. It isn’t pretty, it certainly didn’t feel good, but it’s part of my diabetes story. Keep trying, keep trying.

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Photo Week in Review

D 12813

From Top Left: Another pump site, another bruise.  This was earlier in the week but I had a site change this morning and once again… another site, another bruise.  This is starting to become my norm.  Site worked great though.  At least the bruises are small and this isn’t bikini weather!

Blood glucose check where an old pricked spot bleeds along with the new one.  there’s a cartoonish like quality to that, as if I will drink a glass of water and my (bruised) pump sites will look like a sprinkler.

New diabetes themed-used-Verio IQ-test strip jewelry.  The reaction this from the non-D crowd has been kind of awesome.  love hearing what people “think” the material is.  My account (T2) took a minute and guessed it correctly.

I woke-up on Thursday to this view.  Remote control, Glucolift (Wildberry is my fave) container (empty), Dexcom G4 reciever, Froggie, and my pooch (with creeptastic looking eyes in this pic).  A strange Wednesday night snuggle-fest indeed.

 

Do Good, Feel Good

Do Good, Feel Good is a phrase I say a lot.  I probably tweet it even more often.  It’s one of those phrases that just sticks in my head and plays over and over (kind of like The Cranberries’ Zombie or recently Kris Kross’ Jump.  I’m sorry if you now have these songs sticking in your brain too).  I digress.  Oops.  Yes, Do Good, Feel Good.

When I researched getting a CGM, specifically my Dexcom 7+, I started reading diabetes blogs in a mildly obsessive way.  That was my introduction to Kim from Texting My Pancreas.  Her blog led me to other wonderful diabetes blogs.  When I decided to bite the bullet (well in this case, let my boyfriend attempt to insert the Dexcom into the back of my arm), we watched her video twice possibly without blinking.  When I put the Dexcom in my arm the first time solo (I’ll admit it, I was scared), I watched that video two more times (this is the part where I must mention she has better gravity where she lives).  Anyway, Kim was a big help to me and I frequently refer to her in my diabetes mentoring program when questions about CGMs arise.

Kim started an “event” for the month of December called Give All The Things (you really should click that to see what I’m talking about).  I was immediately more smitten with her than I already was.   I won second place at the very beginning of the month of giveaways.  I won a small plush pancreas.  Oh you don’t know what a plush pancreas is?  Well you can see it here.  It made me laugh but it got me thinking about Kim’s pay-it-forward idea, an idea I try to incorporate into my own life.  I contacted Kim and told her a little about my jewelry design business and it’s connection to my fundraising walk teams, Alecia’s Stem Cells.  I offered to give her a pair of earrings for her giveaway.  Although it is not totally diabetes related, the jewelry IS made by a T1D (me) and 10% of the proceeds go to JDRF.  Kim wrote the sweetest note back.  It put a big goofy grin on my face.

Today Kim is giving away the earrings at Texting My Pancreas.  I saw the tweet about it this morning.  I immediately smiled.  What started as an overwhelming day still is overwhelming, but her post lightened me. Twice I have checked the comments (which is how you enter her contests) and both times I smiled more and “may” have had some extra moisture escape my eyes (must be allergies, I certainly am not crying again, right?).

If you have some time, check out the comments of some of her other Give All The Things posts.  It will immediately remind you how fortunate you are to be part of the DOC.

Do Good, Feel Good.  Thanks Kim.