Stars Align in the Advocacy Sky

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Martin and I met early last week. We spent a day on Capitol Hill meeting with various representative offices as part of Diabetes Patient Advocacy Coalition DPAC, addressing issues/legislation pertaining to diabetes.

Between meetings, we talked about the clinical trial I’ve been in and devices I’m using.
Martin has lived with T1D for 66 years which is by all accounts, especially Senator Markey’s office, quite amazing, especially considering how crude treatments were when he was diagnosed.

In one of our meetings, Martin spoke about having been one of the clinical trial participants of laser treatments for diabetic retinopathy in the 1970s (‘74). I felt a lump in my throat.

I spent many years feeling ashamed of my own diabetes complications (I didn’t do a “good enough” job). I was just starting my career in design, a visual field, in the wonder of New York City. The diagnosis was terrifying. A brilliant doctor gave me 2 treatment options. I chose a new technique involving very aggressive laser therapy. Many rounds and a few years later, my eyes stabilized.

Now, I get to give research updates and motivational talks for JDRF and I am asked to speak at medical schools about T1D. In this roll, I show photos of the inside of my eye. I explain the laser scars and how my eyes compensate. I encourage (beg) people to get involved in clinical trials, and how I do them for ONE specific reason. I do them to pay-it-forward. I say how I will never get to meet the people who tested retinopathy laser treatments. Some of the first participants went blind immediately. I NEVER say what I was once told, that I would never meet these “testers” because they had died already.

On Tuesday, I learned my talks will have to change a bit. Not only did I meet one of the trial participants whose actions have given me the gift of sight, but I finally got to say, “thank you”. I tried to explain this to New Friend Martin, but I couldn’t get the words out, so outside a Senator’s office, we stood there hugging and crying.

On World Diabetes Day and everyday, Martin, I thank you, again and again, I thank you. 

Bonding outside Elizabeth Warren’s office. Martin was the true star of my day.

40th Birthday Party

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40 years ago, my parents were told to take me to the ER and get my blood taken. I was 6 yrs old. It took 2 nurses and a questionable doctor 3 tries to get a vein. They held me down, I cried. My Dad took me to McDonalds for pancakes (with syrup, ugh) afterwards. 

That afternoon, my parents were on the phone, my Dad walked out the front door and sat on a rock (yes we had a rock garden, weird) and for the first time ever, I saw my Dad put his head in his hands and cry. The next day, with my little suitcase and teddy bear, my parents took me to Hannehman Hospital in Philadelphia. I learned the word “diabetes” and that I would have to take shots. In my 6 year old brain I thought the shots were like the blood draw the previous day and doctors would hold me down. For two weeks, I went to arts and crafts, practiced giving injections to an orange and slept in a room full of children with various ailments. I remember the boy in the bed next to me, Raul, who had a heart condition. His Mom cried a lot. There was a girl across from me who had been severely burned in an accident. The thing that scared me the most though, was that I wouldn’t get to go to school. I was very eager to start 1st grade but now, something was wrong with me, I was sick and I thought I was going to be sent away. 

My parents and relatives visited me everyday. At night, my parents would call on the pay phone to say goodnight. My Dad would tell me I needed to be brave for the other kids. I would try not to cry, I would cover my face, begging my parents to please bring me home. 

Type 1 Diabetes treatments and research have elongated my life expectancy. Although there are a litany of items I hate about T1D, I believe some of the best parts of me are based on the idea that I live on borrowed time. 

Outliving peers who’ve been on the same path makes for some incredibly hard feelings. Testing technology that stands to improve people’s lives is awesome yet extremely troublesome when one looks at the lack of access so many of us face. Diabetes is a tricky disease with no easy cure… yet. 

I haven’t fooled myself into thinking riding a bike will cure T1D, but certainly funds raised from walking and riding has directly impacted the fact that I am here. The eyesight i need to ride is proof of the technological progress and amazing doctors, in my lifetime. 

I’m the co-coach of my JDRF ride team this year. You’d be hard pressed to find anyone (including me) who thinks I’m a “good” coach. I’m not the technical person. Not even close. I care most about safety and that people enjoy the ride (in that order, safety FIRST). And I as I begin what marks my diabetes’ 40th birthday, I plan to live (and celebrate) with just as much vigor, determination and wild ambition as I guess I’ve always had but it’s tempered these days with a growing sadness for the increasing number of people who aren’t here with me. 

My role in the diabetes space has evolved over time and I’ve worn a lot of hats, jerseys, and a hospital bracelet with my first name misspelled, but one thing has never changed, and that’s my belief that we can help make a difference. 

Thank you for cheering me, and all of those affected with T1D, onward. 

http://www2.jdrf.org/goto/Alecia

38 is GREAT!

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On June 19th I will have lived with Type One Diabetes for 19,988,640 minutes (38 years).  During that time, I have dealt with a lot of pricks (interpret that as you will… see photo on the link… cheeky, I know) but I can’t even tell you how many pricks because portable glucose testing didn’t even exist when I was diagnosed.  I have seen technologies and treatments progress throughout my lifetime and have remained healthy enough to participate in clinical trials of devices (hopefully) on the horizon.   

My outlook is and always has been, that I live on borrowed time.  This thought process has brought unmeasurable beauty into my life, daily, but also costs me dearly. Endless monitoring, adjusting, stress, expense, worry, the hoops I jump through trying to maintain balance, and the pain of watching the people who love me worrying about me.

So I am again training to ride 100 Miles to raise awareness and funding to obliterate Type 1 Diabetes, but I need YOUR help.  I have a ton of other things I want to do, create, design and experience..

Let’s create a better future for the 1.25 million people with T1D.  Let’s ensure that technological and medical break-thru’s continue. Let’s continue the advocacy work my parent’s instilled in me as a little girl, because this is my responsibility to make the most of my borrowed time.  Let’s get excited that beta cell encapsulation and smart insulins are currently in human trials.  Let’s help JDRF continue funding clinical and life saving research.  

I’m going to keep pedaling.  

With all my heart and broken pancreas, I thank you.  The route is hilly this year, and I may need a push. xo

#38isGr8!

Click here to give an online PUSH! 

Not Too Late #NDAM

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I posted this on my personal social media earlier today but I realized being so focused on other issues, I have not embraced National Diabetes Awareness Month and it is time:

A year ago, someone I admired and respected personally and professionally, handed me the biggest insult of my adult life, and it was tied to the fact that I have T1D, an autoimmune disease. I gritted my teeth and a few weeks later rode 104 miles in the Tucson desert to help cure T1D. I heard from that person yesterday. I still respect and admire them but far less than I did years ago. Then last night, I saw this photo of myself. My face says it all, I could not have been prouder or more excited to speak at the NIH this summer. 

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And it got me thinking, if at 6 years old, my body had the superhuman strength to annihilate its own beta cells, can you even begin to imagine what I’m capable of now? Happy feisty wishes to you all for National Diabetes Awareness Month. #NDAM

Costume Included.

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This is the thank you note I sent to the many, many people who generously supported my Amelia Island JDRF Ride.  What a journey.  700 Riders.  154 with T1D. 3 Million dollars raised!  

WE DID IT!  Saturday’s 104 mile JDRF cycling goal is in the books, but there’s a behind-the-scenes story too.  

The weekend’s adventure started on the flight.  I was on a plane with a bunch of fellow JDRF cyclists but was startled to hear someone saying my name and grabbing my arm, only to find one of my teammates and the only other one who’s had T1D as long as I have, with a crashing and dangerously low blood glucose level.  Things got a bit frantic but we pulled together, got him quick carbs and we all worked together.

My fundraising theme this year was Type ONEder Woman and my bike was covered in the names of all my amazing donors, Wonder Woman stickers, glitter and stars.  What you may not have known, was last winter I had the honor to address 700 people on behalf of JDRF in New England.  I shared my experience in clinical trials to improve the treatments of T1D AND I shared my JDRF Ride story (from Burlington to Tucson).  I met so many amazing people that day, but one truly stood out, a little girl named Emma and her Mom.  Emma was decorated with Wonder Woman facepaint (her favorite) and we talked about our mutual Wonder Woman love (who doesn’t love Wonder Woman?).  Her father is even a fellow JDRF cyclist! Throughout the training season, I donned a Wonder Woman sports bra peaking out of my ride jersey.  Slowly a theme evolved, Type ONEder Woman and this little girl and her family, constantly liking my training photos, fundraising pushes and cheering me onward.

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When I arrived at the hotel, I was handed a Wonder Woman gift bag filled with Wonder Woman goodies (the tiara fit perfectly) and the most adorable card, again cheering me on (Thanks Emma’s family). In a matter of hours, I managed to drop a vial of Novolog insulin in our hotel room (sorry Paige, insulin smells disgusting) and then to my complete HORROR, at dinner, my insulin pump DIED (what?!?!?)! I was so fortunate to discover I had a backup pump and supplies in my luggage, but I was reminded of two things: Bad things happen in threes (friend emergency on flight, wasted insulin, pump death) AND the incredible power of teamwork.  In all of these scenarios, my teammates offered to help and share all THEIR own supplies.  And that’s exactly how ride day went.

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Photo credit: Ian Joyce

For the first time in my ride experience, the NYC team stayed together, and we worked as a team.  We rode the same speed to keep ourselves all together.  We laughed at the same ride hilarity.  We helped one another out.  We were truly a team.  Since the route had multiple distance options and looped back to the hotel, we were able to say goodbye to our friends who rode shorter routes and they were able to cheer us on as the last group made the extra 25 miles to get us to the 104 mile mark. Whew!

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At the 76 mile mark, I had shooting pain in my frozen shoulder (they should call it stabbing pain shoulder, not frozen) and my right hand was constantly going numb.  I had the opportunity to call it day.  I looked down at my bike, and the first name I saw was Emma’s, so I hopped back on my bike (I didn’t hop, it was more like a careful climb), stuck with my team and kept pedaling.  From mile 101 to 102, I had a rather cathartic moment, I was looking at Emma’s name and then the names of my nieces and nephews and then my sister Paige, who was right there, pedalling along with me.  I kept thinking about Emma, and what my life was like growing up with T1D. It sounds dramatic (who me?) but it was like watching a montage of my life, like a scene in a movie.  My childhood was directed by the advice given to my parents at my diagnosis, I was a child FIRST and a diabetic second.  I did everything, played every sport, never missed out, but I remember quite vividly when I was the only girl in my class not invited to a birthday party because the birthday girl’s mother told her I was going to die (nope, still standing), or being on a date with a guy who freaked out that I had an insulin pump because I was “sick” and had “fooled him” into thinking I was healthy (ah the old bait and switch of perfection, oy), or the hours I have spent arguing with health insurance companies about the tools I need to take care of myself.  And the rest of that mile I focused on the fact that I was on a historic bike ride for JDRF, my T1D buddies, and myself as this ride raised  an epic 3 million dollars to ensure a better future for everyone with T1D.

At mile 103, we lined up as a team, and waited to cross the finish line ALL TOGETHER.  In that moment of waiting, I saw my friend’s name, the one with the emergency on the plane. He’s got two adorable kids (who were at the ride), a fantastic wife (who rode) and he’s an accomplished cyclist (unlike my scattered cycling skills) and we are in the 37 years with T1D club, together.  As I then told my ride mates, we are so lucky because so many people will never know what it feels like to accomplish a goal in an endurance sport and even luckier, because so many of the people with T1D prior to us, never got to see this point in life.  I am grateful but I’m on a mission to change the future of this disease.

And then I got to do something I have dreamed of for the past 2 years, I crossed the finish line, side-by-side, with my biggest fan, my sister Paige.

 

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Needless to say, no beer has ever tasted as good as the ones waiting for us when got off our bikes!

I thank you with all my heart and busted pancreas for supporting me and inspiring my dream.

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Now, let’s celebrate! xo Alecia (AKA Type ONEder Woman… yes, the tiara has gone to my head)

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Type 1-der Woman!

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Next month I will pedal 100 miles in Amelia Island FL to help eradicate T1D. I can keep talking about the importance of better treatments, treatments like the Artificial Pancreas which I have helped test. I can tell you about the absolute necessity to advocate for Medicare to include CGM coverage. I can tell you about insurance companies removing the choice from T1Ds to choose their type of insulin pump (and why that’s wrong). I can give you a bevy of reasons to help in this crusade to fundraise and advocate, BUT I already have.


Last year, my bike “Piñata Bike” was brightly covered in the names of all my donors. When I didn’t finish in Burlington and kept training in secret for Tucson, THOSE names were my greatest motivation to never quit. Those names traveled with me across the country and were my focus on every ride, when I thought my legs would quit.
Thanks to some inspiration from JDRF UK and a very special little T1D who loves Wonder Woman, today I launch this year’s final fundraising push. …
TYPE 1-der WOMAN!

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You don’t have to pedal 100 miles, but you can be right there with me on my ride (no literally, my bike). All donors names will be back on the bike this year a la Wonder Woman cuff style (think glittery stars). Any donation $100 and above will get a special Wonder Woman gold sticker with their name.


Insulin pump tubing = Rope of Truth? You betcha!

ww-tandem
http://www2.jdrf.org/goto/alecia


Keeping the FUN in Fundraising!

Looking for Pirates in Pittsburgh

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Quick note for the weekend:

Happen to be in Pittsburgh?  I am honored and so darn excited to attend and speak at JDRF Western PA’s Type One Nation Summit on Saturday August 27th. The schedule for the day is phenomenal (see link) and… is being held at the Pittsburgh Zoo and Aquarium!!! Lions and tigers and Polar bears, OH MY!

www.typeonenationsummit.eventbrite.com

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Pic “borrowed” from TripAdvisor and no they aren’t letting me speak from the shark tank….yet. Let’s learn about T1D AND go to the Zoo!

Thanks JDRF and Allegheny Health Network.

Making Faces

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The countdown is on!

I have been a participant in the US Senseonics 90 day implantable continuous glucose monitor clinical trial since March.  7 days left.  Here’s the info and latest announcement via DiaTribe .

I’m also back on the bike – ish.  My self led training rides have been more like meandering training tours (oh look! Grafitti…) and in the 20-25 mile range only, but I’ve got time (denial).  The Coney Island Art Walls are almost done!

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Last weekend I sprayed myself with SPF 30 but as I’ve been having trouble keeping the Senseonics sticker and transmitter in place (especially when I exercise), I was cautious to dab sunblock near my robot arm but not spray or slather.  That was unfortunate.  This interesting tan-fail has happened twice now.  The result looked like this post-shower.  So sexy, no YOU stop it!

burn sensomics)

And this 4 days later:

3 days later sense burn

7 days left!  After they remove the implant I will have stitches.  Since I suspect I will have this cool and awesome tan line for a while longer, I have been thinking about how I will rock my new look.  This is the design I have chosen:

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Like those wheatpaste girls from Gold Loxe say “Just Right”

Just right bike.

 

 

 

 

Diabetes Blog Week – LOVE

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I started this blog/space, to connect and share within the diabetes community.  The switch from thinking about writing a blog to actually doing it (years ago), came from a prompt I read from Karen Graffeo at Bitter Sweet about participating in Diabetes Blog Week.  I don’t write many posts on this blog recently and I don’t spend as much time within the DOC as I once did, but that doesn’t delineate how much I value this sense of community, the connections I’ve made, and that this blog led me to expand my own role as an advocate.  The connections I have made with others has become a vital part of my own wellbeing both physically and mentally.  I have gathered knowledge and most importantly, I have made amazing friends through the diabetes online community (DOC) that are now part of my In Real Life (IRL) world and that is priceless to me.

Today is the first day of this year’s Blog Week and here is the topic:

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

I do not like the photo below.  My arm looks the diameter of my thigh (it is not, yet), the wrinkles in my face seem accentuated, and there appears to be a baby’s foot growing out of my wrist. I do not like this photo, but I do LOVE this photo.  This is friendship, admiration and joy.

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This is my friend Karen.  Karen was on my radar years ago because I read her comments in DOC twitter chats and I also read her blog.  She’s a fellow T1D, lives in the same city that I do and when I was trying to learn about T1D and pregnancy, she was someone who I knew had experience.

We met in real life through JDRF at a group event. Participants included DOC-ers from 3 JDRF chapters who decided to get together for dinner beforehand.  Karen freaked out during our initial conversation. She knew of me through the JDRF NYC Walk (walk team).  I freaked out too (just far less visibly and audibly) when I realized this was the woman whose blog I’d been reading and following around the internet.

We became friends.  My friendship with Karen came with “accessories”… her husband and now 2 kids (please note: “accessories” is sarcasm folks.  Her husband gave me a pep talk one time that I will always carry in my heart). They are all my friends and I love them dearly.  Diabetes brought us together, specifically the DOC, and as much as I hate diabetes, I love my friend.  LOVE.

We may talk about things far beyond diabetes, we may laugh so hard we can’t speak to each other, and my life is richer because this family is in it, but I am aware that I would probably not know them if it weren’t for diabetes, so why am I here… today, rushing to type this post?  After an incredibly frustrating and annoying high BG and a messy pump site change in my office’s bathroom, Karen popped into my mind and that we need to make plans soon.  I text her a much shorter version of what I wrote above and explained that as frustrated as I may be, that diabetes sucks and she doesn’t (that’s always a nice text message, “you don’t suck”).  Diabetes gave me my friend.  My hope being here today as part of Blog Week, is that it’s a reminder of just how vital and wonderful these DOC friendships are and all it takes is ONE connection (I have many in my squad so please, no one be offended because these friendships are my wellness team).

A few weeks ago I went on a bike ride, I text Karen who happened to be right near my destination and subsequently had a cheer squad yelling my name (imagine Smurf voices) as the kiddos ran to my bike.  It was just awesome and although I did some more formal diabetes advocacy this morning, my buddies are what I celebrate in this blog post today.

HOffmanderson cheer squad