Cycling Mayhem!

 

Training update:

1st training ride.  Thought it was supposed to be 9 miles.  Ended up being 27.5 MILES.  Rode in snow.  1/2 bolus for breakfast.  Reduced basal rate 30%.  Had lows the entire time.  Ate all my glucose and then some of 2 other riders glucose (oops).  Dexcom and pump were beeping like crazy.  Great lunch at Dinosaur Barbecue.  BGs went back up.  Crashed back down on ride back to Manhattan.  Ugh.  Need to learn.  My normal exercise protocols are different for cycling.

Eating other people's glucose supplies.

Eating other people’s glucose supplies.

2nd major training ride last Saturday.  Left home at 7:45am.  Crossed Manhattan.  Almost collided with a woman carrying about 30 mylar monkey balloons across the street.  Yep.  8am Monkey balloons.  Laughed a lot.  Met ride trainer at Intrepid.  Rode up West Side.  Met 2 other riders near George Washington Bridge.  A few terrifying moments.  Only girl in group.  5 of us total. Slowest rider (again).  Gorgeous day.  River Road was closed.  Rode 9W up Jersey.  Got yelled at A LOT for running red lights.  Was in my own zone…?  Started off with 60% basal rate reduction.  Switched to 70% reduction after about an hour and half. BG remained between 85 and 110 the ENTIRE time.  Thought we were turning around in Alpine NJ.  Saw sign for Alpine.  We kept going.  Stopped at the NJ/NY state border.  Rode back.  Stopped at bike shop/snack stop on Jersey side of GWB.  Had 2 GU Gels by the time of the bike shop break.  Switched to 80% reduction.  Left shop.  Last one out of parking lot.  My front tire clipped back tire of ride trainer.  Ride trainer didn’t even feel it and kept riding.  I dropped like a stone in the street.  A stone wrapped around a bike.  Audience: About 30 people having snacks outside bike shop.  Ugh.  Got home 1:30pm.  One more GU Gel on the way home.  No bolus for GUs. Highest BG? 117.  45 MILES door-to-door!  

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Gravel removed from leg.  FIRST fall is over!  Yay!!!  Still have my teeth!  Woo hoo!

The leg that didn't slide on gravel just banged the bike.  Ouch.

The leg that didn’t slide on gravel just banged the bike. Ouch.

My hand has been swollen since the very first ride.  Got this awesome Xray this week and its just a bad sprain between the thumb and index finger (I struggle with the brakes).  Brace and some physical therapy (you know during my free time while I fight for CGM coverage).  I ADORE this Xray as my Medic Alert is right there.  Safety First!

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7am train tomorrow to Westbury, Long Island.  I need a bike permit for the train.  Who knew?  Amazing.  Heard the route is hilly.  God help me.

Also a HUGE thank you for all the support on this journey.  I am getting closer to my goal to ride.  It’s inspiring to read the messages (cheer goes a LONG way).

Barely slept last night.  Challenging day.  MUST get some shut eye tonight.  Getting late.

Denial

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.

 

One 4/1

“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

Nod to Buckminster Fuller

Nod to Buckminster Fuller