My favorite NYC street artist. #hektad
My very colorful bike.
My favorite NYC street artist. #hektad
My very colorful bike.
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.
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.
In 36 Days I will be attempting to ride 100 Miles in Burlington, Vermont.
In 36 Days, I WILL ride 100 Miles on my bike in Burlington, Vermont.
Today is my diaversary. Diagnosed with T1D 36 years ago today.
I figured out this mathematical magic this morning… 36 more days til Ride and and 36 years of T1D on the same day. That’s gotta count for something right?
Here’s the newest bit of “flair” in my fundraising plans.
Ok, you knew I was going to figure-out a way to decorate this bike right? I used to bedazzle Dexcom arm sensors. All these warnings about creating drag on the bike… I’m already the slowest one folks. If I’m going to be the caboose, I’ll be a brightly colored, glittered one for sure!
Here’s my social media fundraising idea (scheme) for today:
YOU are going on The JDRF Ride! Say WHAT?!?! For everyone who has donated to MY riding 100 Miles on 7/25, YOUR name (or message) is going ON the bike! Come with me! This bike is all about inspiration, funding vital research, and a LOT of Alecia flair. Where’s the glitter paint? #gettingcrafty #36 #diaversarydream
-> ****MY Dream**** <- (So close to beating the 2001- first year Alecia’s Stem Cells total).
I have had a bit of a heavy heart lately. When I think about this diaversary stuff, I have uncharacteristically lacked feelings on it. I haven’t been upset per se, but I have lacked enthusiasm. My friend posted this photo today. This certainly turned my mood around. Note: I definitely do NOT like chocolate mint Cliff bars.
Also if anyone has a bike helmet covered in LED lights and rhinestones, let’s talk.
It is Diabetes Blog Week. Karen at Bitter Sweet Diabetes wrote (in 2012?), “If you don’t have a blog but have thought about starting one, now is the perfect time”, so I did (which was my first post). For more information on Diabetes Blog Week please check this out. And thanks Karen for putting this all together.
Here’s today’s topic:
In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)
There are a few positive aspects of my life with diabetes… friends I’ve made and the incredible people I’ve met because of T1D would be at the top of the list, but currently, right this very second, I can only answer this by sharing a little more of my on-going JDRF Ride cycling progress.
I can cross “NEVER EVER wearing and entire outfit made of Spandex while walking through, and waiting in Penn Station” off my list of things I would never ever do. Yep, nailed that one.
I have also learned you need a Bike Permit to take a bike on the Long Island Rail Road (life is full of surprises). The permit is $5 and doesn’t expire. It looks like a train ticket. I’m sure I’ll never lose that one. Yep. Lost.
Long Island is shockingly hilly. An early morning in those hills is far chillier than one would expect. Getting lost is not the fun adventure you would like to believe it will be.
70% basal rate reduction worked pretty well but I should have started it a bit earlier. I had a GU because the Dexcom arrow was starting to drop, I stayed steady the rest of the ride. Woot.
A week later, I learned the following: trying to cross the street during the 5 Boro NYC Ride (when you are NOT in the ride but ARE on your bike) is damn near impossible.
Next, I learned that repeatedly bouncing off the railing of the “OMG-why-the-heck-is-this-SO-narrow” ramp up to the George Washington Bridge is similar to being a ball in a pinball machine. It is quickly becoming my signature move. Watch out people. No really, watch-out.
Are you ready for the big part??… I rode 60 miles in one ride!! Holy smokes! The hills were challenging, I went through a LOT of water, and my bgs ran a smidge high until about the 30 mile mark, but I rode 60 MILES. Nyack, New York is so beautiful. Just amazing. If someone told me that someday I would ride a bike from the lower half of Manhattan, up and over the George Washington Bridge, up through New Jersey, back over the New York state line, under the Tapanzee Bridge and up to Nyack, New York, I would have laughed so hard I would have peed my pants. I might be the slowest and the sweatiest, but I did it. I still need to improve my pacing (it is currently not so hot) and keep increasing my endurance (also still weak). And in even stranger news, I happened to have a meeting right over the Tapanzee Bridge 4 days later and pointed out where I had been on my ride. They asked where I started. When I answered with, “My apartment”, no one could believe it (I include myself in “no one”). It was SO far away!!!
And here’s the deal. I have thought about doing a JDRF Ride in the past. After almost 2 years of the back and forth of getting into one of the Artificial Pancreas clinical trials, I publicly stated (at a conference) that I would do the Ride if I got into the trial. I received the email that I was officially a candidate while still at the conference. I was/am a chatterbox. I told everyone about being on the candidate list. There was no way I was getting out of this Ride!
So here I am 2 and a half months from a 100 mile ride in Vermont (OMG x1000). I think of the many T1D athletes who I admire. My childhood hero, NHL great Bobby Clarke, Olympic swimmer Gary Hall, Jr, and professional snowboarder Sean Busby. I admire them in a way I simply couldn’t imagine before now (and believe me, I already admired them tremendously). I never thought someone with T1D couldn’t do a ridiculous amount of cycling, BUT I certainly didn’t think that I would ever be inspired enough to try (you read the part about all the Spandex right?). And now, I am inspired… and I continue to try.
Our Medical Director has determined that the request is: Denied – Not Medical Necessary.
After consideration of all available information, our Medical Director has determined that the requested procedure will not be covered for the following reason(s): Based on health plan criteria for diabetes care, your request for continuous blood sugar monitor and supplies is denied. This is because we did not receive the needed information from your doctor. You have diabetes and take insulin. We need to review your medical records showing your present diabetic condition and medical history. We do not know if your blood sugar cannot be controlled despite multiple insulin injections during the day. We do not know if you use up to three insulin injections per day. We do not know if you check your blood sugar level at least four times per day. We do not know your blood sugar levels. We do not know results of your blood sugar test called hemoglobin A1C. The medical equipment company supplying these items and your doctor were asked to send in this information to us.
We have provided a detailed explanation of the Member’s appeal rights below. A Member has the right…..
YEAH, this actually happened along with 9 more pages of incredibly specific instructions of how to appeal this decision. There is a one time appeal. Yes ONE. There is a possible option/request by your doctor for a peer-to-peer review (doctor from insurance company and your endocrinologist chat but it isn’t scheduled for a specific time. HUH? Needless to say it sounds like an option based on luck just to get the call) and there is a petition for an external review appeal. Does this all sound daunting? Yes it is. I received the letter above the night after my first JDRF cycling training ride which I believed would be 9 miles. Nope. 27.5 miles. It also snowed! But back to DENIAL.
I have been using Dexcom CGMs for what I believe to be 4 years now. CGMs have improved my quality of life tremendously and allowed for some incredible fine tuning of BGs, exercise adjustments, and timing of insulin dosages. As someone who has had hypoglycemic unawareness (first training ride, even with all my aggressive basal reductions I was treating lows (some in the 50s) the entire time. I didn’t feel them. I was shivering and cold and cycling and huffing and puffing and hoping to not get hit by cars or crashing), and a CGM has been a welcome addition to my T1D upkeep. Changing health insurance has been a bit roller coaster-y, BUT when I received a call that my Dex was out of warranty, then having the whole system replaced in January (under new insurance) and then upgrading to the Dex Share bluetooth receiver, I thought any fear I had about approval was for naught. Yep and then I got a crushing Denial letter.
Based on the information above, one might assume my doctor never sent in the proper medical paperwork… I thought that too. Me = LIVID. Nope. One might also think the insurance company lost it or was just being a bunch of bullies. Nope. One MIGHT think the Dexcom 3rd party supplier completely F-ed up the paperwork and then lied and lied about it and then people kept getting reassigned my case (huh?) and someone, by the grace of God, may have “slipped” that they (3rd party) never submitted my doctor’s paperwork even though I had visual proof they had indeed received all my medical notes on time. Yes, then you “may” be right. What a mess and what an exorbitant use of my time.
At my absolute wit’s end (which says a lot because I’m pretty damn witty sometimes), I just put my head in my hands and wondered how the hell I was going to fix this, and that I just wanted a break from this Monday through Friday daily morning fight (did I mention this has been going on for weeks now?). My sketchbook slipped off the mound of paperwork on my desk and I saw something I wrote on the 2nd to last page.
“Fight For What You Love”.
I don’t know when or why I wrote that in a work sketchbook (weirdo) but there it was and my Dexcom was buzzing in my lap and I remembered something. Something else I wrote. Something I loved writing. Something that made me smirk. I wrote this in 2012 about LOVE. Please read that link for this to all (well sort of) make sense. I’ll wait.
And that was it. Fight For What You LOVE. So I continue to fight. I’ve consulted with an attorney, I reached out to my T1D network, my insurance network, my CGM network, my insurance company, I called every party involved in this fiasco. I wasn’t DENIED because it wasn’t considered medically necessary. My denial (at this point) is a paperwork snafu. ONE appeal. And I FIGHT because I have to and I fight BECAUSE. I. LOVE.
As this continues to ebb and flow and there has been more hope in the last 2 weeks (but I never truly lost hope), I have thought about something everyday. What do other people do? What do people do who have a job where they don’t have phone access? A job where they can’t make calls during all these company’s involved business hours? What do people do who don’t have a network to reach out to. I’m not the first person to fight a denial letter. What about people who are denied an insulin pump? Or are told they are not covered for the amount of BG test strips they use daily? What do they all do? How many people hit the give-up point? What do they do? I remember many years ago being approved for only 6 BG test strips a day even though my prescription was for 8 per day.
I’m curious about other people’s denial stories and what resources you/they used.
More about my saga later. Boxing gloves back on.
“Never forget that you are one of a kind. Never forget that if there weren’t any need for you in all your uniqueness to be on this earth, you wouldn’t be here in the first place. And never forget, no matter how overwhelming life’s challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person.”
—R. Buckminster Fuller (1895-1983)
Architect, Engineer, Inventor
This was going to be my Wordless Wednesday post but it’s D Blog Check day (thanks Chris) so I’m jumping ahead. I learned to ski when I was 8 years old. My college boyfriend got really into snowboarding and we ran around with a snowboarding crowd in the winters during my early 20s (I made a brief switch to snowboarding, broke my coccyx bone, and decided I would remain a skier). In my early 30s, I skied inconsistently at best. As far as I can tell, the last time I’d skied was 2008 and I broke my foot in 2009 (unrelated to skiing, tripping in high heels getting in a cab and rushing to the airport… and then wearing high heel platform boots for 2 days before I got an x-ray… woof). Although I’d talked about skiing again, I haven’t made it happen until this winter.
For the rest of this story, you need to know the following… no matter what my weight, I have a butt. You know that strange photo of Kim Kardashian where she is balancing a glass of champagne on her derriere? You know, the photo that was supposed to break the internet? If not, you may be too highbrow to be reading this blog (or you don’t have interwebs or live under a rock). I’m fairly certain I could do that Kardashian maneuver AND also balance my pump, Dexcom receiver, my cellphone and a couple bottles of insulin simultaneously on my butt. Yep, baby got back.
So, “back” to skiing and a big butt. I have new ski pants this year that are snug in the waist. Great. They also swish a lot when I walk so I could never sneak attack anyone. On Sunday I skied. I clipped my pump to the back of my pants, with the pump itself on the inside of my waistband. It seemed firm between Smartwool long undies and my new, loud swishing pants. I skied my heart out. I am shocked I got right back into skiing in the past month as though I’d never left and maybe, as I’m in better shape than I think I was 7 years ago, I kinda killed it.
As the day progressed, I felt my pump pop off my pants twice as I got off the gondola. I blame my butt. I sat down, the pump got pushed upwards by my Kardashian-esque booty. When I stood to get off the gondola, my pump had been pushed above the waistband. Once, it slid down the back of my pants. Once I felt it loose inside my jacket against my back. Not cool, but my jacket unzips from the bottom so poles stuck in snow, mittens off, glove liners off, pump re-clipped, velcro on pants tightened, layers adjusted, coat re-zipped, glove liners on, mittens on, poles around wrists. Whew. Ski.
Second to the last run of the day, I was flying (well as fast as I could go before my rental skis started shaking because I technically needed high performance skis and believe me, I LOVE typing that. one more time, I needed the performance package). As I soared down the mountain singing in my head and strategically shifting my weight and the edges of the skis, I saw something in my shadow. Something sticking out of the side of my jacket. Oh, just my lift ticket. Ummmm no, the lift tickets don’t clip onto a zipper anymore. The lift ticket is now a keycard you put in your pocket and they scan you with a zapper in the lift lines (this fascinated me as once scanned, the zapper operator would say your name and chit chat. Lovely). As soon as I realized that strange shadow waving in the breeze was not my lift ticket, I started hitting the breaks. We’re not talking hockey stop, I hit the breaks in a pie wedge, like a beginner, and the shadow whacked me in the back of the leg. I scooted to the side. I stopped. I tried and missed grabbing whatever was in the shadow with my pouffy mittens. I had already tossed my poles to the ground. I tossed the mittens there too. I reached again and grabbed my swinging pump. Whew. I just stood there thinking that this was NOT the ideal situation. I then smiled. I’m fine. I caught it. This wasn’t a calamity. I snapped a photo because based on my maturity, I started giggling to myself that my shadow could be the source of many a dirty joke. Diabetes is so effing annoying sometimes, but I was absolutely fine. A little freaked out, but fine. I was better than fine, I was skiing my heart out.
So I skied down the rest of the way and thought about what I’d do. If I’d lost my pump, that would be a horrendously expensive problem, but I could have taken the gondola down to the lodge as I had insulin and emergency syringes in my purse which I’d put in a locker. If I’d never found my pump, I had a back-up old Ping in my purse too. I have a photo of my pump settings on my phone. Inconvenient and expensive for sure, but I’d live and that’s the thing…
I recently had a conversation about the concept that you can never go back. I’m not sure I believe that. After all these years, I returned to a sport I once loved as a child. Oh sure I hated the cold, and carrying all that gear, but the art of skiing was always me in my zone. My Dad would say he could hear me humming and singing as I skied past him as a kid. I was always making up my own songs with the theme of “You can do it” (I was a creative, cuckoo little kid). What if instead of not being able to go back, you take all that stuff you learned, stuff that’s supposedly behind you, you smush it into a ball and you toss it ahead of you?
I think it’s true of diabetes too. You learn all this stuff, you screw up, you learn, you try again, and you don’t leave it behind. You use it all to lead you. You can let it beat you down and God knows I understand diabetes fear, but its also your motivation. Sometimes your pump needs to smack you in the ass to make you slow down and then, you pull on your mittens and race ahead.
In a matter of hours, our T-shirt sale/fundraising extravaganza will come to an end (and the shirts will GO TO PRINT). The ONE to NONE shirt sale ends TONIGHT at midnight CST. I had hoped we’d sell 40 shirts (needed to sell 24 to go to print) and Pres-To-The-Effing-O (PRESTO) I just heard we are up to 46. Wow! Not bad!
Proceeds go to JDRF, rocking graphic T goes to YOU (or you could give it as a gift, right? Or buy a whole bunch, and give as LOTS of gifts).
I’m too tired right now to end this post in a witty, or snarky or even sassy way (although I’d like to, so I’m open to suggestions), however earlier today I explained the rationale behind a KISS work/design project (Keep It Simple, Stupid). I then used a photo from over the weekend when I happened to meet Paul Stanley in a restaurant (he of KISS fame) to drive my point home. I laughed myself silly and even cheered for myself which is just full-on weird. My wit is now long gone for the day (possibly week), so if you would like a T-shirt, just get on it, because you are running out of time (mere hours).
Rock and Roll all night? Yep, tired.
Last week I took the Curse jar to the bank. The jar itself is stupidly heavy (I did not buy the jar nor write the label) which led me to believe there would be more dinero in there than there actually was…BUT, Office Cuss Jar donated $43.55 to our Alecia’s Stem Cells Walk Team! F yeah!
And on that note, THIS is my current favorite (and yes I just put a quarter in for posting this…. seemed like the right thing to do).
A few items:
1. Recently someone told me how they find it easier to manage diabetes without working out. Exercise makes their BGs bounce around. I agree with the bouncing. I get it. Where I disagree though (and I can only speak for myself), is exercise makes your body and mind stronger. Exercise keeps your blood pumping and I LOVE, love, LOVE that I have a strong pulse in my extremities. Exercise is a good stress reliever (even if I stress about my blood glucose levels while I exercise). And the most important part for me (currently), is there are days when I feel like I have zero control in oh so very many areas of my life (sometimes read: ALL AREAS). Exercise is O N E area where I have some say… making the time, making exercise goals, achieving a goal. My “mantra” (thanks Stacey for reminding me) is Do Good, Feel Good. I think when it comes to exercise, this applies to one’s own body too:
Do Good For Yourself, Feel Good About Yourself.
Now when it comes to the BG bouncing, I get it. Saturday is my JDRF Jamaica, Queens bike ride. I believe I am getting a loaner bike. Yep, 20 miles in an area I have never been on a loaner bike (I hope it’s not a beach cruiser… I’ve heard they are not ideal… ha). Tonight I rode again at the gym. I played around with the screen and ended up with some sort of video of a path in a Northern “pocket” of California (pocket was their video screen word, not mine). The video kept changing. It may have made me nauseous. I believe the videos are for running because the path turned to sand on the beach right up against crashing waves. Biking in the sand? That “may” be out of my reach. Then I became the smirking girl on the bike. Could be worse. I am far from riding in the woods on paths of roots and dirt as learned when I wanted to hit the breaks before the log going across a creek… yikes.
The photos below are what happens when you take pics from a moving vehicle…. oh, wait, I was on stationary bike. You are viewing paths (and a log I had to dodge) and a Dexcom screen. What you can barely see is the Dexcom down angle arrow and a BG of 128.
I had reduced my basal by 40% for 30 minutes which started 10 minutes pre-workout. I thought it was a HUGE success when I finally stopped dropping at 82 YAY!
I made dinner, and after bolusing and eating, I started dropping again. Bummer. And then treating a low after I JUST had eaten was less than ideal, BUT every workout isn’t like this and hopefully Saturday will be a smoother ride. Get it? Ride? Bikes?
2. I love seeing and hearing so much publicity around Miss Idaho. Rock on Sierra and #showmeyourpump Out of all the mainstream press I’ve seen though, this article from Bustle is my fave (EXCEPT the part that describes an insulin pump as “an aid that controls her diabetes”… oh how I wish that was true…. but more on THAT on THURSDAY). Would “Helps” Control, make it better?
3. I’ve gotten a lot of information about this whole putting your Dexcom on the Cloud stuff (cool pics ). I haven’t looked much into it for 2 reasons: 1. Time is a little tight right now and 2. There is no one in my life who would want/need/be aided by seeing my Dexcom readings in real time. I will say though, I can see how this is immensely helpful to parents of T1D kiddos and like Kerri said, her husband and Mom can check on her when she or they are away. At some point, I will look into this further (although I suspect/expect this to be COMPLETELY over my head since I can’t even delete emails off an iPhone… they just keep coming back). Having my Dexcom readings on my wrist or phone would be cool. There is a fascinating Facebook group for this technology CGM in the Cloud . Cool right?
4. I caught this earlier tonight (post bike ride lows). Dating and Diabetes. I have spent a solid year avoiding this topic. I feel my stories could be discouraging and I want to encourage, not discourage… and then I feel incredibly torn on the entire topic, my feelings and my experiences. Sigh. Briley at InDpendence tackled it a bit tonight. I truly applaud her bravery.
5. I had a #5 item but for the life of me, I can’t remember what it was #OldAndTired