Tag Archives: JDRF

OUCH!

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I have a pretty high tolerance for pain (that doesn’t mean I won’t complain incessantly when something hurts). I’ve been taking shots a long time (and they were WAY bigger when i was a kid), inserting pump sites and Dexcom sensors for oodles of years. Why then, is today the day that my left ring finger tip hurts so effing much from a finger stick? It’s almost comical in the realm of physical pain that typing is killing my damn finger and I keep wincing in pain… like a VERY angry splinter.

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Such a teeny red spot/ bruise. Sometimes it really is the little things that sting the most.

A bruised finger has me thinking about how ready I am for the next level of technology and ultimately, someday, I hope, a cure.  I think about how I speed packed this morning to get out of town for a few days.  Picking out what to wear today not based on weather or comfort, but what will keep my pump most accessible going through security at the airport and how I should have moisturized my legs as I may have to drop my pants to show of my thigh Dexcom site but at least I’m wearing my lucky heart undies.

I write this post to bring up a point near and dear to my heart (oh and to complain a bit)… This week has been National Volunteer Week (tomorrow is the last OFFICIAL day).

GO. DO. SOMETHING.

No really, go. Volunteer to help JDRF. Local chapters are always looking for people to help out. It’s not about donating/raising money (although that is indeed important). Encourage a non D to volunteer with you.  Believe me, it’s not always easy, but try it.  Spread the word.  Do good, feel good.  Figure out your talents and volunteer them. Give your time, your ideas, your heart and most importantly, your passion.

It is time. GO!

PS If you are looking for something to do…Alecia’s Stem Cells is ALWAYS looking for walkers, sponsors, social media pushers, friends, competitors, cheerleaders, huggers…. more info about ASC in the next few weeks.

Hammer Time

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Today’s post was supposed to be about an diabetes incident/ talking-to-a-stranger moment I had on the subway last week.  However, I read the following quote from Eleanor Roosevelt this morning and thought, “Oh My God, THAT’s IT.”  I will probably read this a thousand more time this week. To diabetes and beyond… Thanks Eleanor Roosevelt and this is why if I could have dinner with any famous person, dead or alive, she is STILL my #1.

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

– Eleanor Roosevelt

Powerful words.

Now, in other news, I haven’t been to a Spin class in years but I will be participating in the JDRF event this Saturday (March 8th).  In NYC?  Looking for some exercise?  Want to try a David Barton class without becoming a member? Want to support JDRF?  Want to join me?  Want to push me back-up onto my bike when I keel over but my feet are still tied to the pedals?

http://www2.jdrf.org/site/TR/TeamJDRF/Chapter-NewYorkCity4456?pg=entry&fr_id=3629

Facing Fear.

STOP.  Hammer time.

Sara’s Research Retreat

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My friend Sara guest blogged here back in August.  She is part of JDRF’s T1D Voices Council and also my dear friend.  Last week, she sent me an email about my blogging break, and attached a speech she wrote to present to the Board at her Tucson JDRF Chapter.  She thought her presentation might work for a guest blog post and I’m thrilled she wants to guest blog yet again.  So here it is and thanks Sara.
How Far Has Research Come, and Where Else Can it Go?
allenmonograph“First, a little history lesson, if you will indulge me. Diabetes has been around a LONG time, first notated by Hippocrates, and on through the ages. A brief history of the disease is included in this monograph published in 1918.  At different times, the ailment was thought to be a problem with the kidneys or the liver, or the blood, or the psyche. Proper diagnosis of diabetes became possible in the 1600s when Thomas Willis noted that the “urine is wonderfully sweet, as if imbued with honey or sugar,” as if he was describing a fine wine!  The doctors and scientists were determined to find out what caused the fatal dis-function of the body, and endeavored to find better, more effective ways to treat it.  
 
In the late 1700s, one treatment called for confinement to the house, preferably to one room, with the utmost possible quiet and avoidance of exercise. THAT I could live with. The diet however, called for milk and lime water, bread and butter, blood pudding, game and other rancid OLD meats and lots of fat. The skin was to be greased daily with hog’s lard, and flannel [GAH] was to be worn.  Another called for the drinking of melted beef fat mixed with hot oil, and regular bleedings….In the mid 1800s, they threw out the rancid meat treatments in exchange for alcohol, (which works for me). Milk was forbidden, careful mastication was encouraged, and finally bleeding and opium treatments were condemned. About 150 years ago, improved techniques of research determined that it was the pancreas that was the offending organ, and with not-yet-invented-laser-like focus they began to study it, often in tandem with more and more rigid dietary restrictions. in 1911, a Dr. Hodgson advocated eating a raw egg with a few ounces of olive oil several times a day, and that’s it.  
 
All that to say, thank GOD, I was diagnosed in April of 1974, when I could treat my diabetes with THIS insulinsyringeThough i must say this 30 unit syringe with its super fine needle is a lot more palatable than the 100 unit syringe with the pool cue sized needle I first used. 
 
But had I been diagnosed a mere 60 years earlier in 1914, my parents would have been told that I had an almost 100% fatal disease, Like my great aunt Gigi, who was diagnosed in 1918, I may not have lived long enough to see the next christmas.  If the high sugars didn’t do me in, i most likely would have died of starvation. For, as the monograph outlines in great detail, until 1922 and the discovery of insulin, the only way to stave off death was literally to starve the patient.  As Dr. Allen wrote, “Expectations of an actual cure, in the sense of a restoration of the normal power of food assimilation will be disappointed under any dietetic treatment, and the need of some more potent therapy than diet is a keen stimulus to research.”
 
I think you get the point that research has never stopped on this disease. And that brings me to the point of this talk. I just got back from the annual Research Retreat held by the JDRF in New York, and never has Research been more important AND more productive. The first part of the meeting was the T1D Voices Council of which I am a member, along with 15 other voices from around the world, other T1Ds, medical professionals including our own Dr. Insel’s brother, several parents and even a grandmother. We reviewed some of the budget considerations of JDRF, and without going into the specific details and the way the funding is split up into different buckets, I can assure you that it DOES go to research that will lead to a Cure. We also discussed some issues JDRF faces with clinical trials and what the role of the individual is in terms of developing these. There are several places on line, including the JDRF web site, Medivizor and the National Institute of Health where you can go to enroll and be alerted when a trial comes up in your area…though there are not that many in Tucson. 
 
Lastly, we thought it would be a GREAT idea if JDRF took the opportunity of the 100 year anniversary of insulin in 2022, to develop  some clever, exciting marketing campaign. We felt it would great awareness and advocacy tool and hopefully, they can really put some effort into it.
 
It was then on the Research retreat where we got to sit in on the talks given by various researchers, the most interesting to me was that of Viacyte, a bio tech company in San Diego. We head from their lead researcher about this credit card sized thingie that will be implanted in the back and will ultimately offer 24 months of diabetes-free living. While JDRF is waiting for the clinical trials to go forward (Phase I and II begin next year, by the way), they are working with another company to develop the capsule materials. The encapsulated islet cells die without insulin so this other company has developed this material that is actually being incorporated into the body  – I wish I had that slide, but you could SEE blood vessels growing in and around it…bringing blood to the islet cells
 
And it is partnerships like this that were the focus of another talk by Pure Tech – this is basically a Venture Capital Firm that, in partnership with JDRF have created T1D Innovations which “will accelerate the development of innovative T1D therapies and enhance our ability of turning Type One into Type None.  Basically, T1D Innovations will create and fund companies to translate discoveries into products, helping them cross the well-known biomedical “valley of death” – which is the notorious gap that often prevents promising biomedical discoveries from being developed and reaching patients.  T1D Innovations will develop new companies around promising scientific research, providing the infrastructure and resources that are necessary to advance the research to/and through clinical development  and finally to the T1D community. 
 
We also heard from a guy at Pfizer who talked about another collaboration between Pharma, academic science and JDRF. The upshot of that was that if, after all the study and research, Pfizer doesn’t want to invest to bring it to market,  it reverts back to JDRF’s or the academic instuitutions control to find another way to bring it to the market, so some big pharmaceutical company is not going to discover our cure and then decide it isn’t WORTH the investment!
 
There is considerable research being done on restoring and rejuvenating islet cells which may someday lead to a vaccine that everyone gets, like the measles or polio vaccine. This would prevent the body from developing the disease in the first place, but in the nearer term, that very research will be used hand in hand with the encapsulation research.
 
Yes, the focus is definitely still on ending this disease. Some of the work being funded on islet and beta cell treatments, antibody treatments, smart insulin and especially the artificial pancreas, all point to exponential Improvements in treatments, eventual reversals and some day, the prevention of the disease world wide. 
 
The official line from JDRF is that “The path forward from Type One to Type None is a continuum of therapies that leads to a cure. As our research programs and therapies move through the pipeline, new treatments will progressively remove the daily burden, side effects, and complications.”
 
German Pathologist, Bernhard Naunyn, said, “the therapy of diabetes has been well founded by painstaking labor, highly fruitful in all directions; we may be proud of that which has been achieved and yielded here…….”  he wrote that in 1906, and I think it is still true.
 
We WILL turn Type One into Type None and on my and Errin and Brody and Aidan and Alecia and Nathanael’s behalf, not to mention everyone else, thank you for your support and belief in this organization!
Sara
alecia for blog

Giving the Shirt Off My Back (Well You Can Buy It)

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You know the NYC JDRF Walk is coming up (September 29th) and you also may know this is the 12th Year for Alecia’s Stem Cells (NYC) Friends and Family Team.  I’ve walked a lot of walks and I certainly keep talking a lot of talks.  If you’ve done the Walk, you know it gets maybe, just maybe, a we bit redundant over the years.  I am always trying to put a new spin on it. Boston team and NYC team in ONE weekend?  Check.  Design your own Alecia’s Stem Cells iron-on shirt party?  Been there, done that too (it took FOR-EV-ER).  Pirate shirts with me in a pirate beard (Keeping the ARRRR in JDRF?) and pirate sword fights over the Brooklyn Bridge?  Yep and arrrrr.

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So how do we spin it this year?  Ah my friends, this is the Until-A-Cure is found question.  I have been considering challenging my buddy Ben from Team Hoffmanderson to a Break-Off.  A Break-Off you say?  Oh yes indeed, I do say.  I would do my best breakdancing moves (I have 1 move, well sort-of 1) with Ben over the Brooklyn Bridge to raise money.  Does anyone want to even see that? Nah probably not.  Bikers would be yelling at us, kids would be tripping over us, we would give diabetes a bad name (Ha!  Like diabetes has a “good name”.  Funny stuff there).  So while I agonize over gimmicks, let me tell you a fundraising plan that IS happening… RIGHT NOW!

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Over the years, we’ve had some awesome and diverse Alecia’s Stem Cells shirts.  I’ve had a slew of friends take a stab at this (no needles were actually involved).  It’s been fun/crazy/ totally stressful getting designs ready, finding printers and making the Walk deadline.  I buy the registered team member’s shirts, but it gets tricky having a set number of walkers so far in advance.  This year, our shirts were a collaborative effort (Thanks so very much Deb) and then I had the same idea I seem to have every year … oh wouldn’t it be great if we could sell some shirts?  I saw a tweet from Tina over at Stick With It Sugar where she was selling her Walk Team’s shirts through a crowd sourcing printer.  It’s a long story, like a really long story, but I had such a great call with Tina, realized we needed to use a different printer if this was even going to be an option, looked up a Forbes article where the founder of the company Tina used named his competition (to all business owners, never acknowledge the competition in an article).  I called the competition the day before a holiday weekend, had a totally surreal conversation with the Principle.  He knows my work and is a fan of my former boss.  He also understood my Do Good, Feel Good philosophy AND they could do the job AND they wanted to help!!!

FRONT OF SHIRT_2013

So here’s the skinny.  I LOVE NY.  I HATE diabetes (See what I did there diabetes, I didn’t even give you capital letters, di-a-betes).  The back of our shirts have a tag line thought-up while looking over notes I took at a JDRF Walk Kick-Off/Research Update:

New Technologies, New Treatments, New York.

BACK OF SHIRT_2013

So, we are in the shirt selling business folks, But ONLY until 9/12 (SOON people, so very soon).  The shirts are great quality (Canvas and Belle who supply T shirts for Nordstrom which I wouldn’t know since we don’t have a Nordstrom in my city…. yet) and come in Mens, Ladies and even Youth sizes (this is a first for us).  Not only are the shirts cool, rad, awesome, fly, tight, sick ( <- that one annoys me), BUT the proceeds are going to JDRF!  Yep, our team fundraising efforts have a NEW spin… Team shirt sales!!!

So check ’em out and most importantly, PLEASE forward the shirt link to anyone you think might like one (or two) too!  Thanks y’all.

http://inktothepeople.com/private-marketplace/ink-detail/11041

 

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.

 

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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

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

Diabetes Thoughts and Notes

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  • 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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Week in Review – 4/1/13

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wir4113

Clockwise from top left: Imagine my surprise when I received a thank you gift from Excedrin in the mail!  I was a little confused about the part that thanks me for my “patience”. Was there an Excedrine shortage or something?  Maybe it’s thanks for being patient during a migraine for the Excedrin to kick-in (like I have any other choice)?  Any way you look at it, it’s nice to get free stuff.  If any diabetes device or pharmaceutical companies are listening, I like free, surprise, thank you gifts.

I’ve had 2 days and 3 nights of too many low bgs.  Last night I had the actual LOW reading on my Dexcom.  It was scary, it was there for a really long time, and even when I started to come up, it was snail-pace slow.  I joked yesterday that Glucolift tablets are becoming a food group in my world.  The real joke is… I’m not joking.

Happy Blue Friday!  New blue shirt, blue Dexcom and sort-of bluish glasses.

What do you think that last photo is from?  Awful finger prick?  A girl who’s using a very blunt lancet?  Nope, got my finger tip caught between and anvil and a rubber mallet the other night.  It really does look like a D injury though doesn’t it? Gotcha!

Happy Friday!

 

We Walked Some More…

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Dodger StadiumI’m a bit late on this post but it’s been one hell of a Diabetes Awareness Month for this lady!  This post is the follow-up from my JDRF New York City Walk for a Cure post.  Our team, Alecia’s Stem Cells, expanded again this year.  On November 11th, I walked with our first EVER Alecia’s Stem Cells Los Angeles team at Dodgers Stadium (and the crowd goes wild….. Rrrraaahhhh).  It was wonderful to have a 2nd team again this year filled with friends and family. I was amazed by the team spirit exemplified by my cousin, his wife (my wonderful friend), her sister, and her sister’s boyfriend.  They sent walk donation letters out as a group.  When I received one, of course, I cried.  Their letter talked about me and used parts of my own NYC letter, but then it included a story about the beloved uncle of my cousin-in-law and her sister, who had died of complications of diabetes.

Our little newbie team managed to beat our LA team goal and raised $2,210.  I was, and remain, amazed.  Our NYC team had just raised $21,631.62 and I was 100% sure I had asked anyone and everyone to donate already by the time the LA Walk was on the horizon. If you doubt the power of social media, I offer you this, friends posted a zillion NYC walk team photos on Facebook right away.  It was an incredibly exciting day for me and I think that comes across in the photos posted.  As the LA Walk approached, I posted something about how great Walking in NYC was and if anyone felt they missed out, there was still time to help out our LA walk team.  Within minutes, two Facebook friends I barely know donated!  Right before I left for LA, I posted that we were $50 away from our team goal.  3 people who had already donated to the NYC walk all donated AGAIN to help us reach our goal.  I’m teary just typing this!  AMAZING (not the teary part, since I’m a crier, but how many people cheered us on and supported our team’s efforts).

LA Walk Day was incredible.  Gorgeous weather, a new venue and fun stories.  The walk route circles Dodger Stadium twice (but different paths both times) and THEN, the last lap is around the infield!  There were tons of diabetes vendors to visit and lots of swag.  I got samples of LEVEL Glucose Gel (the mandarin was super duper sweet tasting but very effective as I learned on the last lap when Dexcom beeped bg 87 and an arrow down) and Quick Sticks (which are freaking awesome – said me, the girl who’s never had a pixie stick ever).  I also got chatty with an Animas rep and begged for the Vibe (oh I know, I know, it hasn’t been submitted to the FDA yet, but a girl can dream and ask the same question over and over, and yes, over).

About 8 years ago, I went to some sort of JDRF NY luncheon.  It may have been a walk kick-off lunch but I’m really not sure.  I sat next to the only other person who seemed my age at the table, and she was a fellow T1D.  We became friends and she walked many moons ago with Alecia’s Stem Cells NYC.  At least 6+ years ago she moved back to Los Angeles, got married and had two kids.  All these years we’ve stayed in touch via Facebook and right before the LA walked she signed up for our team along with her family.  It was so great to reconnect with an old D friend and meet her adorable family.

The Set-Up & Reconnecting with an old friend

I also tweeted asking if anyone in the DOC was going to the LA Walk.  Although our team did the Big Blue Test, I never managed to meet-up with Mike Lawson (boo hoo) BUT, Diane from Type 1 Trip said they had a team and described their Team Julia shirts.  I found them in the infield.  I’m fairly certain I may have come across as a stalker, but I asked a ton of people in pink shirts who Diane was and although we were both busy with our teams, we had a few minutes to chat and I believe that was the first time I introduced myself as “Alecia, ummm Surfacefine on twitter”.  We had a big hug moment and my team was off and running (well walking).

Fighting Diabetes

As I’ve posted before and will say here again, Walk Day is like a weird holiday for me.  Its a day full of hope, promise and an incredible amount of love!  It is a day near and dear to me. I can’t thank my friends, family and fellow walkers enough for their amazing generosity and supporting the ongoing efforts of JDRF.

 

 

Not a Quitter

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Shortly after I got moving this morning, THIS started:

Sensor change

When I checked my Dex post shower I was quite surprised that my bedazzling was not only still intact, BUT my Dex is hardly frayed around the edges (it has indeed been a whole week).

Dexcom Sparkle

In one week I haven’t used any IV3000 to keep Dex stuck to me (shocking) and a bunch of rhinestone stickers have survived my workouts, longer than should be acceptable showers, and the various outfit changes I seem to make on a daily basis.

So what has changed?  Nothing that I can think of EXCEPT the rhinestones are a new decoration!  If they are helping keep Dex in place, then guess what folks?  I am going to remain one heck of a bedazzled, glittery, pretty pony.