Sara’s Research Retreat

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!
alecia for blog

No Charge

I am currently on vacation.  As any D knows, there’s a lot of planning that goes into packing D supplies… getting prescriptions filled, double checking all your gear, bringing back-ups to your back-ups.

Things have changed in my diabetes world in the past 2 years.  Well lots of things have changed but the one that explains this post is that I have rechargeable devices.  These devices combined with all the other rechargeable, non-diabetes devices that may eventually lead to my mental demise.

1 charger didn't come on vacation.

1 charger didn’t come on vacation.

My current cast of mental demise making characters involve the following items: Macbook (1 charger), Kindle (1 charger that charges from Macbook), IPhone 5 (1 charger that charges from Macbook), Mophie case (to give Iphone extra charge so I don’t run out of power) (1 charger), Dexcom (looks EXACTLY like charger for Mophie case but they don’t work interchangeably) (1 charger), Verio IQ (charger looks like the old, old blackberry charger, 1 charger).

So yes, I should have 6 chargers with me on this trip.  I have 5.  I am missing the Verio IQ charger.  I am with most of my family.  I have ransacked their bags.  There are a ton of chargers.  3 different types of cellphone chargers, 4 different laptop chargers, one iPod charger, an iPad charger, and a Kindle charger.  There is NOT one charger out of all these items that will fit my Verio IQ.  THIS is a problem.

I was in Manhattan when hurricane Sandy struck.  I had plenty of time to prepare.  I had my to-go bags.  My dog had a to-go bag.  I reinforced my windows.  I had a flashlight.  I saved water.  I watched the news and worried UNTIL my power went out.  I kept texting my sister (a newbie Manhattanite).  I wanted her to stay safely inside and be prepared.  Power gradually diminished on my phone.  By “gradually”, I mean really quickly.  I did all the things you do to conserve power on your phone… turned off apps, reduced the brightness, turned off wifi.  The next morning my phone had barely any power.  My home had NO power. I could not reach my sister.  I packed-up and headed north.  I found power at Avis on 43rd street. They let me charge my phone.  My sister was ok and not evacuated (her whole neighborhood lacked power too).

I didn’t get power back for over a week.  When I say I didn’t get power back, I mean my home, office and gym, all the places I would have gone to charge stuff.  I stuck it out 3 days in my home but the lack of running water and the creepiness of my neighborhood eventually got the best of me.  The dog and I sofa surfed for 4 days.  I was constantly turning off my phone because I was concerned, when I was below Manhattan’s power line, I needed to save it for an emergency.  Although batteries were at a premium, I watched people with powerstrip cords charging all their gear at ATM terminals.  I pretty much decided that week that this rechargeable stuff may be “better’ for the environment BUT it is super stressful to me.

Chase Bank ATM - Manhattan above 42nd street

Chase Bank ATM – Manhattan above 42nd street

I saw someone with a T-Slim pump last week in my endo’s office.  I saw the pump for maybe 2 seconds.  Seeing the T-Slim being used in real life was cool.  Diabetes technology is cool.  A rechargeable pump would give me a friggin’ heart attack.  Seriously my stomach just did that knotty, No-No thing just thinking about it.

I gotta stop writing this post now.  I’m on vacation and have to figure out how I’m going to charge my glucose meter.  Give me a damn battery please.



34th Diaversary on a Business Trip

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”.


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).


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!


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.

Wordless Wednesday Dress-ups

Dazzled insulin

Let’s face it shall we?  My purse is an incredible place.  A lost & found, a glucose tablet cave, a world of gum wrappers, or just the Land Of The Lost?  Yesterday I pulled out a bottle of insulin to do a site change.  It felt odd.  That’s because it felt bumpy.  I don’t know what’s going on in that purse but things are getting freaky or maybe just fancy?

Hey Insulin, if you’re having a party in there, rock out with your bad self and thanks for keeping me alive, you sexy Diva, you.  xo

I’d Rather Not Think About It

I’d like to preface this post by explaining I have lots of exciting, super-duper exciting things to post about, but those will have to wait for now.  This past weekend was a big one, but there was a big bump in the road (yes I just typed “pump” and stared wondering why it was the wrong word. Diabetes much?).

Friday, I ate lunch.  A few hours later, I puked like crazy & could not have been colder (not as bad as Pukefest 2012). The doctor on-call for my doctor sent me to the ER.

At the ER, a nurse took me into Triage quickly. Dexcom said bg was 277.  Hospital meter said 324.  I had been running between 77 to 126 all day even while puking.  Dehydration was kicking my butt.  After getting my vitals, I explained to the nurse everything that had and was currently happening to me, I concluded by saying I needed to take a correction.  She told me not to.  Actually she said she could not advise me to take a correction.  Ummmm what?!?  She said I needed to wait for a doctor.  Ummmm more what?!? This is the same woman who, when I showed her my pump and Dexcom, asked if they control each other.  I explained it isn’t a closed-looped system.  That did not help my cause.  She asked if my blood sugar is normally that high.  I politely explained my current HbA1c is a 6.4 so NO my BG is NOT NORMALLY 324!  I was told again NOT to take any additional insulin, was handed a puke bucket and sent to the waiting room.  I immediately took a mini correction.

30 minutes went by and I felt less nauseous (believe me there was nothing left in my system).  I started to feel desert-like thirst though.  Time did that thing it does, you know, ticking by. I took another mini correction.  BGs eventually in upper 200s and staying steady.  No one had checked on me.  They’d told me NOT to take a correction until I saw a doctor, they knew my most recent BG had been 324, and they LEFT ME!   I sipped diet ginger-ale I’d brought in my bag.  Baby sips.  I seethed.

I finished my drink.  I waited.  I needed a hand (well an arm) to get to the reception desk.  The woman who checked me in (not triage) explained there were people with more serious emergencies and that would delay my seeing a doctor.  Fair enough.  I told her I needed to take more insulin and explained I’m diabetic, on a pump, on CGM, blah blah then I stopped because I didn’t think I was connecting with her.  I apologized (not sure why), and asked if she was a nurse.  She was less than pleased but since she hadn’t been responding I wondered if my T1D/puking chatter was clicking.  Yes, she was indeed a nurse.  She said my vitals were good.  She told me I was looking at a 3 hour wait.  Ummmm what?!?  I needed fluids.  Give me the IV and I’ll figure it out myself out.  3 hours?!?  3 MORE HOURS?!?  So I explained, for the record, I was taking a necessary correction.  She told me not to.  I told her she was too late.  She said they didn’t want me to crash.  I said that wouldn’t happen.  I got feisty in my I-am-wearing-pajamas-with-multiple-sweatshirts-and-why-are-my-legs-wobbling-so-damn-much way.  I told her I’d been diabetic for 33 years and “they” could not expect a T1D to sit for 3+ hours with a high blood sugar and do NOTHING about it.  I *may* have even tossed out the word insane.  She explained they needed me to NOT take a correction so the doctor could see what was going on with me.  I could feel the heat in my neck.  I stayed calm (well calm-ish).

Then she said it, “They need to make sure you aren’t going into DKA.”

In my mind I may have punched her.  In my mind I also shook my head in disbelief like a cartoon character.  In my mind I stopped shaking my cartoon head and punched her again.  I leaned across the desk and slowly explained that if you tell a diabetic who’s blood sugar is in the 300s and escalating, NOT take a correction bolus while they continue to dehydrate, you will have bigger problems than possible food poisoning.  She argued back about not crashing.  I was about to crash her.  I tried to sound strong but I’m pretty sure my voice shook as I informed her that without a correction, there was no doubt they would be treating me for DKA.

We waited and waited.  No one EVER checked on me.  No additional BG checks.  My BG hovered between 185 and 194.  I’d take that.  Exhaustion was kicking in.  4 hours after I’d checked-in, I was taken into treatment.  A gurney in a hallway with another patient at my feet and another patient at my head.  A doctor arrived.  He was familiar with my story.  He may have been Doogie Howser.  I told him about the correction debacle(s).  I informed him of my present BG.  He told me that he felt T1Ds on a pump know more about their diabetes than they do so I should continue just doing my thing.

arm-IV-768x1024 copy


I got an IV like a harpoon.

Yeah I got pics.

I was there FOREVER.  Anti nausea stuff and fluids perked me up.  The head doctor visited.  I got sassy as is my way, and we all smiled.  I told him the correction debacle.  He repeated what Doogie had told me, that I know more than they do about my diabetes, keep treating myself and they will treat the rest of me.


I continued checking my own BGs.  I saw some crazy stuff go wheeling by.  I got silly.  I was sent home at 3am.


Not a Quitter

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.


Blue Friday- Tweet Tweet

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

Happy Friday. xo

Diabetes Notes… Part 1

Some diabetes thoughts:

1. Putting a Dexcom sensor in my arm, solo, is definitely doable.  Having gravity work to my advantage to release inserter… maybe not so much.  I watched the amazing Kim from and she is so smooth (and bravery/awe inspiring).  Her Arm Dexcom Insertion video is awesome, but for some reason she has better gravity (the gravity in NYC may be broken, but I have not confirmed this).  I get the site inserted (woo hoo) but can’t get the inserter OFF MY DAMN ARM.  Mild panic then ensues (and hopping). I consider going downstairs, asking my doorman to pull the inserter off while I squeeze the sensor sides.  I then wonder which doorman is on duty.  I’m convinced it’ll be the same doorman who told me he was going to faint the time I tripped and came home with a bloody knee. THAT makes me laugh.  Yes, I’m sick in the head.  Doorman horrified and passed out while I greet my neighbors with that barbaric inserter protruding out of my tricep.

Here’s what I’ve realized…having a bra on the bathroom door knob is key.  I use it as a sling shot to release the inserter while I frantically squeeze the sensor.  This manuever may make me either McGuyver or a genius, or someone who needs to straighten up.

2. Speaking of straightening up, if you need to do some Spring cleaning (well in my case it’s more like Summer-Fall-Winter-Spring cleaning), donating your gently worn clothing to a charity, will make you feel good.  Donating to a store that supports diabetes research will make you feel EVEN better (it’s also extremely motivating).  NYers, check-out Cure Thrift Shop. Cool right?

3. Making jokes with fellow DOC friends on Twitter about Dexcom adhesion battles, really will lighten your mood.  It also MAY turn a hassle… into an art project!

Floral Sparkle Dexcom? Yep!


My Mom’s 4-Letter Word

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.