Making Faces

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!

IMG_1314 (1)

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:

Senseomics face

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

Just right bike.

 

 

 

 

Diabetes Blog Week – LOVE

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.

karen and alecia hug

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

 

 

 

Art and Helicopters

I was 13 minutes late for plans last evening (I just need a helicopter.  I live a few blocks from a helipad.  I would also like Inspector Gadget spring bounce shoes.  I would not use both at the same time though, jump out of the helicopter, turn on spring shoes, bounce back too far and be decapitated by helicopter blades. No bueno.)

13 minutes late and as I tripped, but did not fall, in the street I looked up and saw this:

insulin train

I haven’t seen a Appleton Pictures piece in a while, and my heart skipped a beat.

A fun evening and as I headed home, lo (I was not low at the time) and behold:

appleton chelsea

Like a diabetes Batman symbol.

#diabetesawareness

Advocacy TODAY.  ‪#‎JDRFGovDay‬

Today is a big day.

More than 170 JDRF Advocates are currently (today and tomorrow) meeting with Members of Congress in Washington DC to support the ‘Medicare CGM Access Act’ (H.R.1427 and S. 804).  To deprive seniors of CGM technology can have devastating results and is financially costly. Medicare does not consider CGMs to be ‘medical’ necessity. Over 95% of health insurers DO cover CGMs.

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Thirty-seven Members of the Senate and 184 Members of the House of Representatives are currently signed-on in support of bipartisan legislation to provide Medicare coverage of CGMs for people with diabetes. This legislation isn’t just for our seniors however – it will in fact benefit everyone – by helping to pave the way for reimbursement of next-generation artificial pancreas technologies when made available.

Make a difference today:

  • Email your Senators. This form asks your Senators to co-sponsor S. 804, the ‘Medicare CGM Access Act.’
  • Email your Representative. A form that asks your Representative to co-sponsor H.R. 1427, an identical House companion bill.

EVERYONE who has ever been touched by T1D can help advocate.  If you have done this before, PLEASE do it again.

And I beg you to share this information with others.

Reach out, take action, create a better future.

Buddy and fellow T1D advocate Brandon Denson. http://www.diabetesforecast.org/2013/jul/brandon-denson-pro-football-player.html?referrer=https://www.google.com/

Buddy and fellow T1D advocate Brandon Denson.

 

 

Again and Again (really)?

The great health insurance debacle continues.

I received a letter 2 days ago dated 12/16 (last day of open enrollment for coverage starting 1/1), that my health insurance application was rejected due to the form being “old”.  Yep.  I had questioned the insurance broker in reference to the date on the application and if there was a newer one (there was a discrepancy in one of the plan codes although not mine).  It’s a long story involving many emails and phone calls but I was assured by the broker that the MY plan name and number were the same so the application would still be processed.  Nope.  After cry-panicking, sending an angry email on Saturday night, followed by more crying, I had to pull myself together for a FaceTime call with one of my nephews.

My nephew started by asking me, “What’s happening?” so I scaled it back but explained that I was in a bit of a mess with health insurance and how crazy things were.  He repeated back to me “crazy”.  Indeed, crazy. I spoke of how the options I had were not even close to what I wanted and all were worse than my current coverage but now another wrench was thrown into the mix.  He said something I didn’t quite understand, mentioned Lightning McQueen and talked about things that are “great”.  I told him the situation is tricky and he kept saying “tricky” back to me.  He then said my name, followed by “Rocky run”, put his hands above his head and started running in circles.  Next he dropped to the floor and did his version of Rocky Balboa push-ups (looked more like an impression of a seal).  Did I mention my nephew is 2 years old?  And it made me laugh and then think.  I have the privilege from time to time to speak to people about the evolution of T1D care and technologies, about progress and research, and the most important part… advocacy, I have spoken about the JDRF Ride program and why it is so very dear to me. I get to talk and talk and even tie things into some of my own personal philosophies and parallels with Rocky Balboa.  Eye of the Tiger, baby.

Freedom Fog

Freedom fog all around

My nephew’s advice was solid.  This insurance mess is a mess for sure, but I need to keep fighting.  This was another round, not the full fight.  It’s like athletic training.  You keep going and when you hit obstacles, you use your mind and experience to figure out multiple solutions.

I moved on to Plan B yesterday when I’d exhausted everything I could do in this debacle (it was Sunday), I took advantage of this Miami-esque weather we’re having in the North East, put air in the Pinata bike tires, dressed in a costume of Spandex and started pedaling.  I worked on Plan E (I already had a rough outline of C and D before I reached the West Side.  There were so many tourists near the WTC memorial and most walking in the bike lane.  “ON YOUR RIGHT,” was unsuccessful with most people who were not speaking English and I may have sounded like the teacher from Peanuts, “Wha-waaa-whhhha-WAAAAHH” so I decided to take side streets back across the city.  What a gift.  I saw beautiful graffiti from some of my favorite street artists, cleared my head a bit, smiled.

Wonder woman

Pinata Bike on a mission

Mr Robot Pinata

Hello Mr Robot

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LOVE

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Wheatpaste girl

This morning I started my follow-up calls to my health insurance broker after a night of emails and networking my D plan.  My “kill them with kindness rule” had to be shelved for a bit.  Emails unanswered, voicemail messages unreturned, cell phone calls and texts done (repeatedly).  Couldn’t get my hands on a carrier pigeon (damn those birds are fast). I called the broker company’s main number and then kept dialing extensions of everyone else in that department.  Oops.  I’m sorry I dialed the wrong extension, I haven’t been able to get through, can you transfer me, I don’t mind waiting, thanks so much for your help.  I finished signing all the appropriate forms a few minutes later.  Will this situation resolve itself in enough time?  I don’t know.  Plan C is so close now I could lick it.

Patient advocacy starts with us.  Always.  Now stick your hands in the air and Rocky Run.

xo

I’ve Been Here Before, Right? (for the USA)

In the past 2+ years I have had to change health insurance plans (and carriers), 3 times.  The process is simply mind boggling.  New doctors, new procedures, new pharmacies, new bills, moving mountains to make things “work”.  Many people are going through the same thing right now (Health Republic Insurance of New York went out of business recently and although not my insurer, it certainly contributes to the madness with open enrollment ending in 4 days and less options for individual coverage plans in my state).  This process is nothing short of torturous, as trying to find specifics on both On and Off Market plans is a game of “How many questions can you ask and how few answers can you get?”.

My situation is complicated (isn’t everyone’s?) but as I have read through contracts on the coverages (these prescription drug tiers… where are all the other meds?), any decision I make involves risk. The premiums are less ($) than what I was previously paying BUT the coverage is MUCH less (“coinsurance” is not a nice word).  The feelings of “Which decision is the least bad” combined with “OMFG how much is this REALLY going to cost me?” and my new favorite, “What do you mean the insulin I’ve been on for years and have had good results isn’t covered… AT ALL anymore” (<- that’s really happening. Novolog.  See photo).  I will figure it out.  There will be more 4am bolting awake nights (well mornings), and there will be tears but, as I have learned, you just do (and use your brain and maybe kick some shins along the way).

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So, I’m sharing this fiasco (OK, story), because there is a link that is INCREDIBLY valuable and even if you are one happy yellow smiley face sticker with all things health insurance related (oh how I envy you and wonder if you’ll marry me… I have little to offer in return… I seriously can not think of anything except free wifi, a ridiculous amount of gold glitter and I *may* dance and rap in the shower… yikes…?), I hope you will bookmark this link.  It is a post from Christel at The Perfect D (and updated recently).  Need Help With US Diabetes Supplies and Medications? UPDATED! 

Look at ALL that information.  Thanks Christel for allowing me to share this and more importably THANK YOU for doing all this work for all of us!

Information is power.  Go be powerful. xo

 

Freedom.

Life is such an amazing roller coaster ride.  While this year has presented me with some crushing heartbreak (not to mention some really ridiculously tough times on the bike) there have also been many moments of tremendous hope, faith and the peace that I believe can only be gained by knowing you did your absolute best.  My best includes being an advocate, sharing my experience, being a connector of people and ideas, and being willing and open to learn.

I have been in two Artificial Pancreas clinical trials through Mount Sinai Hospital in NYC.  Two different sets of algorithms from two different universities.  I was recently asked to lend my story to an ongoing advertising campaign which Mount Sinai has been running since this summer.  I received no compensation for the ad and certainly didn’t get any sort of preferential treatment trying to schedule doctor’s appointments this week.  I still pay my endocrinologist out-of-pocket and move mountains to figure out my insurance coverage and the cheapest way to get my HA1c.

Here’s what I did get:

The chance to spread accurate information about the Artificial Pancreas Project (in the center of the New York Times magazine this past Sunday).  I was given right of refusal and the ability to make changes to the copy throughout the process of the ad’s creation.  If 1 person sees that ad, calls and makes an overdue doctor’s appointment, then I’m happy I did it.  If it encourages 1 person’s curiosity regarding our current diabetes technologies which we have fought so hard to obtain, then I’m glad.  If this helps convey my own sense of hope, then awesome.

I believe we all have chances to advocate.

Opportunities come in all sorts of odd and surprising forms.

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Continue the Discussion

A quick note:

I saw an excellent play last night (thanks to 2 JDRF friends who told me I “had to” see it) which was part of the NYC Fringe Festival.  “Type What Now” was written, produced and performed by Jessie Bear.  Incredibly thought provoking and what I hope remains an ongoing discussion regarding perceptions of Type 1 and Type 2 diabetes.  On an even broader scale, the show tackles issues of body image and has appeal far beyond the diabetes community.  After laughing and crying throughout the performance, I was thrilled to hear it is a Fringe Fave (apparently the short run has been very popular) and an additional show has been added for this Sunday at noon (8/30).  If you are in the NYC vicinity here are the details:

Fringe Fave – Type What Now 

If you do not have the opportunity to see the show but are interested in a review, I think this pretty much nails it (From Theater is Easy).  Interesting right?:

Theasy Review of Type What Now

I agree with that review wholeheartedly.  Good conversation and challenging one’s own perceptions… LOVE it.

 

 

 

 

 

 

No Casper in this Story

Like most people with diabetes, I often find myself disgusted, upset and shaking my head over diabetes publicity, often.  The Crossfit CEO debacle sadness me on so many levels.  When people don’t seem to think the Medicare CGM coverage (lack there of) doesn’t involve them, I can’t fathom how they don’t think it affects ALL of us.  Believe me, it does.  I have about 10 other things I could add to this list off the top of my head, but I won’t.

I was in an Artificial Pancreas Clinical trial.  No news there.  I was asked to share my experience with EverydayHealth.com along with the doctor who oversaw the trial (who is my endocrinologist).  I’ve written about this before.  Yesterday, the story I filmed with Everyday Health posted (is that the word? “posted”?).  Sure my first name is completely botched.  Mangled.  It is far more exotic than my name actually sounds so I’m embracing it.  The pensive look to the Hudson river makes me giggle.  Very deep in thought.  But the thing is, it is stories like this, stories that help explain diabetes and where things are going that give ME hope.  I am glad to see the incredible minds from UVA and Mount Sinai getting credit.  I love that this is positive.  I love that this EXPLAINS and educates.  I love that I can send this to people who have donated to JDRF and explain that a JDRF grant made this clinical trial possible.  I love that TypeZero technologies exists.  I love that there is a video on the internet where I pretty much admit to wanting to be a klepto.

Here you go:

Diabetes?  Now there’s An App for that. 

So take THAT, negativity.

Thank you to all the people who devote their time and energy to getting this technology closer to reality.

What a week!  Hello Blue Moon!

Buenos dias, mi amigos!

 

So what happened?

The following is a combination of what I posted on my personal FB page after I returned from the Burlington Ride and also what I sent as an email to the incredible people who’s names are on my bike and donated to the ride.  I’ve also added a few more details.  This isn’t easy, folks.

This past weekend was the BIG day, the culmination of all the months training, advocating, and fundraising.  I was ready, excited and a little scared to ride 100 miles with 238 other cyclists in Burlington, Vermont, all of whom were there to support and further the fight against T1D. 
So what happened?During my training rides, I often had the song “Eye of The Tiger” stuck in my head when things got tough.  Never by choice, it would just pop into my head.  Many people don’t realize though, in the movie Rocky, Rocky Balboa did NOT win in his fight against Apollo.  He lost, but the “win” for him was that he went the distance.  I did NOT finish the distance in Burlington this weekend, at least not in the way I thought I would.  I didn’t even come close to my mental image of victory.  After all the training, it was absolutely crushing to realize I was getting my butt kicked by T1D, AT the actual Ride to CURE T1D.I had the perfect storm of diabetes fails brewing as I got my feet clipped into my pedals Saturday morning.  At the dinner the night before Ride day, my buddy Brian did an fantastic presentation that managed to tie together The Ride program, his childhood with T1D, 19th Century Whaling (yep) and our AP Trial experience.  As he had us all laughing and I finished my well carb counted dinner, I realized I was going low.  WHAT?  I’d been running on the higher side for days.  Nothing had been working and then AFTER I’d finished the meal, that was when I was going low? Are you kidding me?  The details are simply annoying, but I had a very stubborn low.  Like would-not-go-away, lingering jerk low.  Too much food in this belly does not end well.  Needless to say I got up super early Ride morning to try to rehydrate as much as I could.  I didn’t feel great but I would be DAMNED if I wasn’t riding.  I started distance ride routine.  Reduce basal by 50% one hour before I start pedaling, bolus for 50% of breakfast.

Adrenaline kicked in, I was going up and needed to pedal.  When we finally got going, (we started on an uphill) I was ready for my BG to balance out.  The hill would help.  Nope.  I knew I was in trouble before I reached the first rest stop.  I was checking my Dexcom, and not where I wanted to be at all, but was convinced I could fix the situation.  Regrettably, I could not.  I can not put into words how completely and utterly crushing it was to accept I wasn’t going to jump out of the ambulance, hop on my bike, and catch-up to my teammates.

Sounds awful right?  Yet my 3 days in Burlington were absolutely magical.  Mike Clark, the National Ride coach told us the weekend would be life changing.  He was right.  NOTHING went as I’d planned on Ride day, nothing, but my unimaginable day was filled with incredible inspiration and love from my fellow cyclists, the team that runs the JDRF Ride program, the wonderful coaches, the families of the cyclists, people who are not connected to T1D but decided to join Ride (I LOVE those people so damn much), the medical staff who takes care of the riders (they know me VERY well), and the awesomeness known as “the Bike Room”.

Things didn’t get back to normal for me physically for the rest of the day despite everyone’s best efforts (I rode wearing 2 pump sites.  One turned out to be a fail, and I ended up taking shots throughout the day too).  I made enough progress to get the green light to meet my sister a mile from the end of the course, so we could cross the finish line together.  When I finally returned to the hotel, despite keeping my chin up almost the entire day, the enormity of not obtaining my goal hit me like a ton of bricks.  How could I possibly have clocked more miles on my very FIRST training ride in March when I didn’t even know how to switch gears, then I did on the BIG day, 3 months later?

At the banquet Saturday night, I could not have been more shocked as I listened to Mike describe this year’s Spirit Award winner, and although completely confused, I looked at my sister nodding and realized he was talking about me.  I was the girl people had followed through her training highs and lows, I was the girl with a bike decorated with all her donor’s names, I was the girl who kept riding her bike in the bike room, unwilling to leave because I wanted to learn more.  All of the ride coaches unanimously voted me for the award.  What felt like defeat, turned into triumph.  Honored seems like such a small word to describe how I felt then, and feel now.

One of my cycling buddies wrote the following on Facebook after I explained what happened,

“Just to add a bit more perspective for those who weren’t there…it’s not like Alecia just couldn’t finish the 100 because of T1D. She had severe T1D complications that involved getting paramedics called to administer an IV and so on. And, against medical advice, Alecia went on to the break points along the route to cheer on her friends to help us finish the ride. When I saw her at the 70 mile point with a big gauze covered hand I had this image of her yanking the IV out and running back to join us. The Crankees (NY JDRF team) could not be more lucky to have such a teammate. The reason we fight this fight is because T1D can be an extremely serious, life threatening condition and even in the face of just that *on* ride day Alecia fought on and won–the spirit award and the admiration of over 300 people in the room last night.”
There are more rounds for me, and everyone with T1D in this fight, and a century ride to be completed in my NEAR future.  For right now, I am embraced by the incredible love of my family and that includes my JDRF Ride family.

Over $900,000 was raised by JDRF Burlington Riders this weekend to fight T1D.  Thank you for your love and generosity.  On Tuesday I went to my lunch time spin class.  I’m back in the saddle (well spin is actually a lot of out-of-the-saddle).  I think I need a little “me” time this week, but life is to be lived and I remain a fighter.

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