Monthly Archives: August 2013

Relax. Don’t Do It.

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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.

 

Guest Post – Sara at The Voices Council

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Today I have a something/someone special to share.  It’s a guest post from my friend Sara who was one of the first people I met and felt I could really talk to when I made the switch from MDI to an insulin pump in 2000 (we also happened to have the same doctors).  I can’t possibly explain how fortunate I felt to have her as a friend then and all these years later, for her friendship now (hey, when she got her Dexcom she was willing to to bedazzle it).  Sara’s friendship has been a true resource for me and made me realize how important it is to have peer support.  She moved to AZ many years ago, but I usually get to see her twice a year when she’s in NYC on work trips.  She is a friend I probably never would have met if it weren’t for T1D.  So yes diabetes, I will give you 1 point for that one.  Here’s her post  (Also that is a pic of us below, post pumpkin pancakes.  Clearly pumpkin pancakes are exhausting hence the squinty eyes):

 

Annual/Bi-annual NYC brunch (pumpkin pancakes)
Hi, my name is Sara and I have had type 1 diabetes since I was a little kid and for the last 39 years, 3 months, 16 days and….6 hours,  I have been waiting….eagerly, sometimes not so patiently, but always hopefully, for my cure. For the day when I can travel without getting groped by the TSA, and when I can eat, without doing MATH.   For the day I stop poking holes in my body and I stop worrying about needing dialysis or going blind or wondering if my brothers kids will get this cruddy disease.

 

I had the honor of being selected to participate in the first JDRF T1D Voices Council. These 16 people are meant to reflect the needs of people with type one diabetes.  Most of the Council members have T1D, but there are a couple of family members. Most of us are normal people, but some are medical professionals. We are mostly American, but we have some Europeans who bring their unique perspective to the group. We range in age from a college freshman to a grandparent, but what links us is our commitment to finding a cure for Type One diabetes, and our vested interest in JDRF.  We are all active with our local chapters, whether as participants in the Annual Walk, and some of us are on our local Board of Directors. We don’t make any funding decisions; we are simply here to speak as the voice of our peers, to make sure our concerns (and I mean the universal “our,” not just our 16 voices) are being addressed, and to offer some perspective from the front, as it were.  We have been assured that our opinions are highly valued by the organization, including CEO Jeffrey Brewer and the International Board of Directors.

 

706295_10151144150427441_492451226_o
Our first meeting was held last December in conjunction with the research meeting. We all met for the first time in person (we had set up a Facebook page and were stalking each other madly), along with with our leaders, Bill Parsons, from the International Board of Directors and father of a T1D son, and Dr. Richard Insel, JDRF’s chief scientific officer.  Our discussion focus was “complications”and specifically, which complications, if any, should JDRF be concerned with in terms of research.  As you can imagine, our opinions were fiercely personal; colored by our experiences. For me, the focus should be on eyes, absolutely. Others were more concerned with nighttime lows (the parents in the group seemed to speak loudest on this, less of a concern for me, thanks to my CGM), but we discussed and ranked them. The discussion at times was heated, to say the least, and a couple of us were unable to “rank” which complications were more deserving of funding than others.  By the end, however, I think our consensus was that we wanted JDRF to stay focused on a cure and improving our lives, and leave the research on complications to other organizations.  One complication the T1D VC discussed, which wasn’t on the original list, were the psychological aspects of living with this disease, which I think came as a bit of a surprise to the powers that be.

 

Two weeks ago, the T1DVC attended the annual conference in Washington DC, and we were forewarned that our topic was going to be the Psycho-Social aspects of T1D, which arose partially from a recent study on these issues, and our timely discussion back in December. However, let me start by saying for the first time in 39-odd years, I finally really felt some HOPE….sure, we all say we are full of HOPE every year when we try to raise money for the Walk…my donors need to hear that I haven’t given up on JDRF. Frankly, that “just around the corner” nonsense has been playing rather thin.  But now, oh, NOW!  I am so full of ever-lovin’, say Hallelujah, pass the hat HOPE, I can’t stop bouncing, dare I admit to smiling, (and then crying) every time I talk about it.

 

Little Sara

Little Sara

Not much has changed since the research meeting in terms of what JDRF is pushing through the pipeline (as they like to phrase it), but what HAS changed is the marketing and presentation of this research. For eons, I have had issue with the way JDRF marketed us! I was just sick of the ads full of cute children surrounding Mary Tyler Moore, as she begged for a cure. Don’t get me wrong, I LOVE Mary Tyler Moore, but she is not of this generation, and while Nick Jonas and Halle Berry ARE, we can’t seem to get them to speak out as loudly as, say Christina Applegate and Sheryl Crow do for breast cancer.

 

Anyway, enough whiny rant. The point is, if you haven’t seen the new marketing campaign,  stop reading now and go watch the BELIEVE video (which got a standing ovation and reduced me to tears) and the VISION video (which also got thunderous applause and reduced me to tears), and then watch the research videos on Encapsulated Beta Cells and the Artificial Pancreas Project and Smart Insulin and the WALK video or watch the Plan for the Future one. If you aren’t moved by these, then you probably aren’t really T1D!

 

So then we had our T1DVC discussion on the psycho-social aspects of diabetes, and we each defined our vision of a “cure.” Some of us are pretty strict and a cure means, “life as it was BEFORE diabetes,” while others are a little more lenient, and would accept a STEP towards a cure, such as encapsulated beta cells, or even an artifical pancreas system that integrated insulin, symlin AND glucagon. Most of agreed we didn’t want to trade T1D for anti rejection drugs and a pancreas transplant.

 

What I am MOST excited about is those Encapsulated Beta Cells.   I won’t go into all the technology behind it cuz you can google Viacyte and read one company’s plan for yourself, but I SAW it. Jeffrey Brewer stood up there and held up a prototype of this amazing device in his hand. It looks like a tea bag, but this packet will allow us to live completely boring lives, for up to 24 months…which, as Jeff said, isn’t exactly a CURE, but it IS a darn good thing. And it will be in clinical trials next year!

 

And don’t you think, for one SECOND, that just because they are working on all these technological advances, they’ve forgotten about a CURE.  The Voices Council cornered Dr. Insel at breakfast and grilled him on research updates that our own doctors don’t know about. His eyes gleamed as he talked about the things that are coming down the pike…the potential for a vaccine, and regenerating damaged beta cells, and gene therapy. It is all THERE….and we just can’t lose hope!

 

And basically, it’s that hope that gets us out of bed every morning. It’s why we ask our friends and families to donate to the walk, isn’t it?  We all still hope for our cure and we need JDRF to continue this research until we have a world without Type One Diabetes.  JDRF is now making it clear that they are no longer a mom and pop organization, but a world leader committed to removing T1D from this earth and until then, it is their mission  to lessen our burden, lessen our struggle, lessen our pain and fear, and lessen that of our loved ones.

And they won’t stop,  until they turn Type One into Type None

So, now go sign up to be a part of Alecia’s Stem Cells, or come be part of my Team Type None in Tucson, and let’s NOT give up our hope!

Sara (LINK TO MY VIDEO)

meandaliens

Lucky 12

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LUCKY 12I pass by this patch of sidewalk almost everyday.  I noticed it again as I rushed home from the gym this morning.

12

12 is my favorite number.  12 is my “lucky” number.  Alecia’s Stem Cells was founded 12 years ago.  2012 wasn’t quite what I thought it would be.  There’s gotta a be a BIGGER 12 out there.  Please, please let there be a bigger 12 out there.

I received some horrible news from a friend over the weekend.  My Dad hugged me and I just started sobbing.  I believe that is very much a Dad/daughter thing.  Hug from Dad = tears from me.  Life has thrown me a slew of challenges, all in a row lately.  My Dad kept whispering in my ear, “It doesn’t make sense right now, but there is a plan for you.  Just remember, there is a plan for you.  It’s just a different path.”  There was some God stuff thrown in there too but that’s between me and Dad and well, God.

I was with the friend with the horrible news last evening (that is a terrible description by the way).  There were some tears.  We discussed many things.  She’s always supported my diabetes and JDRF projects.  I told her about the JDRF Walk Kick-Off/ Research Update I’d attended on Wednesday night.  I told her about JDRF’s encapsulation program (or at least what I understood of it) and all the things I learned last week.  I told her about how I felt inspired, a renewed sense of hope, again.  I told her about my friend who’s part of JDRF’s Voices Council and how she recently shared with me that she too felt inspired.  At the end of our meal, I think I’d not only given her a pep talk, but I’d also given myself one.  She kept telling me how much I inspire her.  Talking with her really helped inspire me too.  Sometimes, I think the energy you give off, really does come back to you.  I got the most positive e-mail from her first thing this morning.  It felt like a hug.

12

LUCKY 12.

I’ve gotta a lot of work to do.

Join me.  Join our team.  Get involved.

Oh, and if you don’t like me or think I’m a jerk or I talk too much, just donate to this guy.

The fundraising all goes to the same place although we seem to be in some sort of competition.  This is the photo he put on Facebook last night.  Yes, that is me.  No, that is not my quote.  If this quote raises funding for research, then yes, that is EXACTLY what I said EXCEPT, I definitely didn’t call anyone Mr. Strahan*.

Ben H

 

And if you’d like more info on Alecia’s Stem Cells, want to spy on how we’re doing, want to join our team, want to sponsor one of our walkers, want to donate, please go here AND read the post below this one for more ASC info. XO

* Team Hoffmanderson is an awesome team and I am extremely happy to call them friends.  I mean, they might not even be friends, but I’m happy to call them that.

 

Kicking It in NYC

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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

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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.