Tag Archives: juvenile diabetes

Don’t Fall For Pretty

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If you are going to bed, and see this:

 

Note the time. Started treating 5 minutes before this photo.

Note the time.  Started treating 5 minutes before this photo.

DO NOT TREAT WITH THIS:

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Why?

Because apparently my NEW emergency juice is low calorie which means = LOW CARBOHYDRATE.

And then THIS will happen:

NOTE the time.

NOTE the time.

At almost 11:35 pm, after BGs hovering between 49 and 54 for a FULL 30 minutes and feeling my heart racing, tears welling in my eyes over and over as my brain short circuited, (but oddly not sweating), panic creeping further and further into my body, I looked at the Gatorade label.  5 grams of carb per serving.  Like drinking air.

Who knew Gatorade made such a low carb drink?  As a non-Gatorade drinker, I picked the WRONG emergency juice to have at home, but the purple had looked so pretty.

Learn from my mistakes people.

 

 

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

34th Diaversary on a Business Trip

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I’ve been struggling (read: procrastinating) about my 34th diaversary blog post. I’m in a different spot than I was a year ago. In putting this off, it’s hard not to focus on what seems like an incredible amount of flat-out craziness in the past 2 months. If you follow me on Twitter, you might have picked up on my health insurance woes (I mean it’s just nuts). Bronchitis and emotional turmoil/lack of sleep/ and not eating much didn’t do my BGs any favors. During the bronchitis that wouldn’t quit incident (come on lungs, enough already), I kept taking more and more insulin, pulling pump sites I had hoped were “bad”, and switching vials of insulin. I’d get those bg’s down to the low 200s but just couldn’t get them to budge any further. These issues were just the tip of the iceberg. In the interest of preserving other people’s privacy (and perhaps my own sanity), I will simply say I have endured and been surrounded by a heck of a lot of heartbreaking loss recently. When I really think about it, it’s overwhelming and completely surreal. Then, I think of my diaversary and I’m just like, yeah, whatever. I have bigger fish to fry.

Monday night I attended my very first JDRF NYC Board meeting. I only knew one other person there, it started late, I got there early and it was, well, a bit awkward on my part. I felt very “new” in an organization where I often feel “old”.

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Yes this was the view from the meeting. Yes, this is insane.

Fast forward to the dinner presentation. Tom Brobson spoke (if you don’t know who he is, he is the National Director of Research Investment Opportunities at JDRF). Yes, THAT Tom. Tom spoke and I was elated. I’ve watched Bob’s artificial pancreas videos before. As you may know, diabetes discoveries really do occur, another mouse is sometimes cured and I make the same comment for the upteenth time, “Oh to be Minnie Mouse”. Tom, in my view, is sort of like Mighty Mouse. He’s been IN these clinical trials. He has seen and been part of an experience that I don’t know.

As Tom spoke on Monday night, I felt a sense of levity. When he talked about not having to think (stress) about what he was eating (during his study out in the wild… AKA the real world), his enthusiasm was evident. It was intoxicating.

I read a lot about what some term “practical cures”. Hmpf. Let me get this straight, I could eat or not eat what I want and not think about bolusing, or splitting a bolus, or needing to bolus earlier or later or not at all or dropping after all this bolusing hours later? Are you frigging kidding me? I’d have to wear some devices and carry a smartphone? Oh that would be so tricky since that’s EXACTLY what I do now but I have to think about this stuff ALL the time. A steady stream of checking and reacting, reacting and checking.

Tom spoke about other technologies on the horizon. Other clinical trials funded by JDRF. I could go on for pages, Some I knew of and others were new to me, but here’s the part that was the happiest to me. When the presentation concluded (also note he fielded questions the ENTIRE time he spoke which was also awesome), I decided I wanted to hug him. Yeah that’s right. If this guy is the Mighty Mouse of clinical trials and the technologies I fantasize about, you sure as hell can bet I’m going to thank him and hug him like there’s no tomorrow (and take photos of course).

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Tom is awesome.

As is often the case in my hugging world, Tom seemed quite surprised and offered me his smart phone to take a photo while I held it (with the artificial app screen showing). What the heck, humble guy? I didn’t cry but I did tell him about how much I have loved watching his videos. How I send them out to the people who love and support me on this fight against T1D. That I show his videos to our Alecia’s Stem Cells supporters to show them WHAT they are funding. That I admire the trials he’s been in, by choice, that sounded awful. Trials hooked up to 2 IVs and being all bundled up so his veins wouldn’t collapse as he sat in a hospital bed. So yes, I hugged him and I hugged him hard!

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So here’s the scoop kids. Happy 34th diaversary to me. I still have hope. Pure and simple. I am still me. I have hope that technology will continue to better my future. I acknowledge that there is such a small percentage of people who are T1Ds in the world, that I need to push this agenda for a cure and better treatment options. I need to raise money and take part in grass root efforts and get other people to support these ideas. I’m still not giving up. I will continue find joy in life and I will fight like hell to keep living. I will also fight like mad for a better future for my fellow T1Ds.

My Mom’s 4-Letter Word

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I’ve been active in JDRF (especially the JDRF Walk-For-A-Cure events) for much of my life.  I have two  Alecia’s Stem Cells teams walking this year (New York City on September 30th and Los Angeles on November 11).  Every year, I write a letter, asking (sometimes begging) my friends and family to participate.  There are years where writing the letter comes easily, while other years I agonize over it.  I try to have the letter ready to go on my diaversary (June 19th) but this year I did a diaversary blog post instead.  So yes, I’m a little behind my own schedule.  It got me thinking though, why JDRF?  I have recently shared my D-blog with my family and decided to ask my Mom, about why my parents got involved specifically in JDRF. Although I was a bossy 6 year old when I was diagnosed, I  wasn’t calling the shots (Get it? Diabetes pun? Shots? Ha) so here’s my Mom, filling in the blanks:

Seriously? My Mom is gorgeous, inside and out.    This was me pre- D.

 

When asked why did we get involved in JDRF?  The answer came easily.

Alecia, our firstborn child was diagnosed with diabetes at the age of six.  That day, June 19, was a shockingly sad time in our lives.  To say we were blindsided, is exactly how we felt.  This was a child who was the picture of health, extremely bright, adorable, always cheerful and up for anything.  Everything we had ever heard about this disease came running through our minds and we were devastated.  Fear of the unknown was stifling!

Our endocrinologist, Dr. Robert Kaye, was most encouraging.  He gave us the best advice which became our mantra – “Alecia is a child, who happens to have diabetes, not a diabetic who is a child.”  That was the beginning of our journey, becoming immersed in the education of the vast world of living with diabetes.  Dr. Kay suggested we become acquainted with JDRF.  Through our association with them, we quickly realized we were not alone.  JDRF became our lifeline to meet others with small children, to learn from those families who had been down this road and most importantly, we learned fact from fiction about this disease.

We attended lectures, participated in telethons, had Alecia appear in public service announcements and I became a member of JDRF’s board – ultimately running the Philadelphia Zoo walk.  We were always hoping with the funds raised through JDRF that a cure was in the wings to be realized by our precious little girl and all the others afflicted with this life altering disease.

As years passed our daughter grew up, and we did everything possible to ensure her a normal life, participating in various activities like other kids her age.  After college, she moved to NYC and became involved in the NYC Chapter of JDRF and has cultivated a team each year for the annual walk in which her family and friends all participate.  The involvement with JDRF has shifted to her as an adult.

Our memories of working along side Lee Ducat and her leadership of an all embracing foundation (JDF) now JDRF, still remain a source of inspiration. Lee fostered a community to welcome, educate, and most importantly diminish the fear factor for families.  JDRF introduced us to other families who shared the same ultimate goal to help our kid’s lives be relatively normal until the day they discover the four letter word – CURE.

D-Blog Week Day 3- One Thing I Could Do Better

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Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Oy vey. This morning I came up with at least 6 different answers to this question (had I worked-out longer this AM I am sure I could have easily doubled or tripled that number).  Hmmmm.  Just one thing?  The first one that comes to mind is combining my almost 33 years diabetes knowledge with the information I’ve learned from 4+ months with my beloved Dexcom.  The most obvious one for me is, “HEY if you’re going to eat like the winning hippo in a game of Hungry Hippo, bolus earlier!” 

My first few weeks with my buddy Dex (Dexcom is the name for more formal occasions) taught me that my BG shoots up right after a meal (often) and returns to my target range later.  At first, I felt compelled to correct those post meal highs.  Dex beeping at me that I was too high was like a flashback to my high school Spanish class and Senora Bogan constantly yelling at me to “SILENCIO POR FAVOR!!!”.  Correcting those Dex beeps would lead me to crash later and then eat glucose tablets like they were M &Ms (what can I say, M&Ms are quite tasty).

So after the first few weeks I kinda, sorta started to chill-out about the corrections (I fought myself NOT to do a correction) but knew that wasn’t the answer.  My blood shouldn’t skyrocket in order to comeback to normal range.  I had to face it, I must bolus sooner and as much as I hate admitting it, I need to combo bolus sometimes too.  This boils down to organization and a little more planning on my part.  Ugh.  I’ve admitted it and now I have to do it. Gracias!

A Start

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In the past few months, I have started reading diabetes blogs with an interest and regularity that I never had before.  There are a few reasons for this but the biggest one is I had an interest in obtaining a CGM since I suspected I was having issues with hypoglycemic unawareness and simply put, i was scared.  Blogs became my real world research.  I was approved by my insurance for a Dexcom in December of 2011. I didn’t know anyone, personally, using this technology and suddenly I found myself mildly dependant on T1D blogs.  Other than an hour long training session, EVERYTHING I learned about my Dex, I learned from the world of diabetes tweets and blogs.

The only times I have considered starting a blog were in relation to my career which is NOT in the field of healthcare or diabetes.  Writing a diabetes blog didn’t occur to me nor did it remotely appeal to me.  But then, something changed.  Not all at once, but little things started happening.  My boyfriend gained more diabetes education, especially about the Dexcom through reading blogs, I trained to be a mentor on behalf of JDRF and realized I am old T1D (dx 1979), I was contacted by someone in my professional life with a Dexcom question…. Someone who knew I was diabetic by something I posted on twitter, not by anything I ever told them directly.  A man stopped me on the beach an hour after my boyfriend put a Dexcom sensor in my arm for the first time.  The man was with his 8 year old son who was on an insulin pump too.  When I told him I was approaching my 33rd anniversary with diabetes, he kept telling me how “cool” that was and then apologizing with tears in his eyes and hugging his son.  He told me how encouraging it was to hear and of course tears then streamed from my eyes too. I thought about what a vast sea of fantastic diabetes blogs I had discovered in a few months and that dissuaded me from pursuing any vague notion of blogging.  Nope, I don’t need to blog.  I didn’t think I had anything new to say on the topic.

April 23, 2012 was the day when diabetes managed to scare me silly (although I didn’t realize it at the time) and a few people told me I should write down what happened (more on that later).  Then the turning point.  I saw a post about Diabetes Blog Week and Karen Graffeo of http://www.bittersweetdiabetes.com wrote, “If you don’t have a blog but have thought about starting one, now is the perfect time”.  So I guess, now is my perfect time.