NO Change

Changes – Thursday 5/14 
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

I read 2 of the posts this morning for the “Changes” theme while I waited at my retina specialist’s office.  I had an early appointment.  It was a gorgeous morning.  I was ready.  My referral however, was not.  I have some new doctors since I had to change insurance coverage.  When I worked with the insurance broker, there was ONE non negotiable for my medical team.  I keep my eye doctor.  No matter what, I keep my retina specialist.

When I was in my mid twenties I took a job in New York City.  Maybe a year into the job, I was sitting at my office drafting table with a drawing on a piece of graph paper.  I had an itch and rubbed my eye while looking at my drawing.  Absolute and complete horror hit me.  The graph paper turned wavy like that fisheye tool in Photoshop.  I uncovered my eye and looked again.  The graph paper looked fine.  I covered my eye with my hand.  The graph paper was wavy.  I moved my head.  The wavy lines moved.  If there is a stronger word than horrified, than I was that word. I had changed to New York doctors but I’d never changed retina specialists since I’d moved.  No way.  I saw the same retina doctor every year from the time I was a little girl and he was considered one of the best in Philadelphia.  Its all a blur now (ahhh bad joke), but I went to my parent’s and saw my doctor.  Yes, non proliferative retinopathy.  I had laser treatments.  I was scared out of my damn mind.  This kept up for maybe another year.  I had to switch to a New York doctor.  My Philly doctor was a big shot.  He recommended a doctor group in New York.  Only a few doctors in the group took my insurance.  The Philly doctor immediately named one of them as the guy I needed to see (see? Oh man, I swear I’m not doing this on purpose).  He told me he was young.  I didn’t want young.  I wanted seasoned.  Philly Dr said this NY Dr just spoke at a retina conference and the head of the NY group was the doctor for a D celebrity.  Ok.  I’d give it a try.

I saw the NY Dr in the late 90s.  Yes he seemed young.  He told me I needed more laser.  This scared me more.  I didn’t know this doctor.  He wasn’t the doctor who’d treated me for years.  Then he told me I had 2 options.  One was the current laser treatment protocol. The other was much more aggressive treatment.  Something new.  I am not doing justice to this story since my brain can’t remember all the technical aspects, but it involved using the laser to cauterize the bleeding vessels AND then to also treat other areas preemptively.  If other places were going to bleed, to make it so those places would be further away from my center of vision.  It made sense to me (sort of) and it involved a lot more laser than I’d previously had.  I could get worse before it got better.  I went for it.  I’ve lost count of how many times he treated me.  Sometimes a little laser, sometimes a lot.  Both eyes were involved.  He was so nice and enthusiastic and we’d talk design and he made it all seem so positive.  I would be there for hours and hours waiting.  Sometimes I cried afterward.  And then there was a time I didn’t need any laser.  And another time and another time.  That last time was over 10 years ago (I think 13).

So I was the patient today without a referral.  It took me forever to get someone at my new primary doctor’s office to answer the phone.  I was apologizing to everyone in the damn office, as I knew I was screwing up the doctor’s schedule (apparently I really wasn’t but I felt like I was).  Letters and numbers projected on a mirror, reading test, the wavy graph. I made lots of jokes.  Waiting.  Eye scans.  The room for the tracking laser tomography.  I walked in and called it “fancy”  the technician shot me a look (it couldn’t be less fancy of a room).  As she set everything up, I called it “exciting”.  Then an “adventure”.  She said, “well that’s one view of it”.  So I explained it to her.  If I consider this an adventure, that the equipment looks “fancy” and this is so freaking exciting, then its a positive set-up.  Everything is less scary when it’s an adventure.  She sat back and said, “Ok, let’s get you back on your fancy adventure”.

 

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There were some hiccups when I got to see my doctor.  They couldn’t get the scans to upload but when one of the technicians said, “There’s something wrong”, my stomach sank to my toe. (I thought they meant with my peepers, not uploading the scans).  My doctor showed me how great my eyes are.  How beautifully the laser from long ago worked. I saw the layers of my eyes and heard how thrilled he is with the results.  Then he said it,

“NO CHANGE”.  

He told me how he thinks all my exercise continues to help my eyes.  Then like everyone I now talk to, we spoke about cycling.  Seriously I have nothing else to talk about anymore really.  He is going on a cycling trip in Italy.  His kids are no longer kids.  And I walked out, dilated pupils like a cartoon character, and orange sunglasses I got for free at Food Bank event, I decided to walk the 30 blocks back to work.  I put on my music and George Michael’s Freedom ’90 song.  I know, I’m so old it’s ridiculous.  I kept the song on repeat the entire walk.  I was all smiles thinking about the theme of DBlogWeek being CHANGE today.  If you know nothing about the song I type of, read this: George Michael’s Freedom ’90.  It’s interesting, about his changing.  I walked with swagger.  I smiled at every damn person.  No Change!

I walked in the door of my office and took my iTunes off repeat.  Next up, Iggy Azalea’s ‘Fancy”.  My fancy, exciting, adventure to the eye doctor.  They won’t all be winners.  I don’t expect them to be and there will be many more bumps in the road.  But today, was a No Change.

Cleaning? Phewy.

Clean it Out – Wednesday 5/13 
Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

Hey, I didn’t keep it “in” yesterday.  I let it out.  I thought a few times after I hit “post’, that if I’m talking about my conflicting feelings that I have too much information out there, I was willingly increasing that “out there-ness” with yesterday’s post.  Any second guessing myself thoughts were erased last night.  I was on my way home when I checked my email. Every note about the post yesterday made me cry.  The notes were beautiful, some heart breaking but all so touching and relatable.  Dammit these eyes are all misty just typing this.

As for things you need to physically toss… oh where do I start?  About a month or so ago I ended up with a sinus infection that knocked me on my derriere for 3 full days.  I wondered if I was actually dying and do people die from sinus/bronchial infections.  I don’t have an answer to that, since I couldn’t keep my head up long enough to do research.  As I slowly lost my mind being trapped in my apartment and peaking around for the grim reaper (and misplacing the TV remote and watching 4 episodes of Keeping Up With The Kardashians… who i learned are tought to keep up with for sure), I started going through my diabetes cabinet.  Please note, this sounds like I’m organized.  Smoke and mirrors my friends (dry ice anyone?).  I have a diabetes cabinet and then Dexcom boxes on shelves, back-up syringes in a closet, old pump supplies on other shelves… you get the picture right?  Oh and I almost forgot there is a secret hiding spot in the wall under my bed.  I refer to that as “the Well”.  I dropped a pair of tweezers in there once and never saw them again.  Scary.

So I started going through the diabetes stuff.  If asked, I would have guessed there were supplies that were expired and probably the earliest date was 2011.  Nope. 2005.  Yes, I have pump supplies that have discolored.  You know why?  Because they are over 10 years old!!!! EXPIRED 10 years ago so I have probably had them for 12 years and they belong to an old pump I would need a training class to ever use again.  Now, you can make a solid argument that I am just messy and that’s the whole pathetic story.  That argument is indeed solid.  Although the demise of my sinuses got me to go through ALL the stuff, I kept some of it.  What?!?!  Hoarder?  Maybe (probably), but when I think of things like the week there was NO electricity in my neighborhood during Superstorm Sandy, or the denial letter for my Dexcom from the insurance company (still not worked out but things seem to be going in my favor), I worry that someday, the most recent “expired” supplies will be useful.  If nothing else, I could form an escape rope out of all the pump tubing right?  I mean I’d need to learn some speed knitting but it could happen, no?

Yep I kept supplies that expired in 2013 (2005-2012 bit the dust). Hopefully I will never have to use the 2013 or 2014 supplies, but there is a weird sense in comfort knowing that they are there, and that’s ok by me.  Maybe I’ll turn them into an art project the next time I’m home sick, because seriously, cleaning is/was the worst.

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Painful Secrets?

Day 2 of Diabetes Blog Week #Dblogweek:

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.

Keep it to Yourself 
Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  

I started writing my response to these questions, about my dating life and thought maybe 10x that I should go with this from a different angle or just not at all, but I work best with a stream of consciousness approach and heavy doses of unedited “winging it” so here goes.  I was in a serious relationship when I started this blog years ago and my then partner was referenced in my early posts, often.  I have not tackled dating here for a multitude of reasons, and diabetes is not the reason I didn’t find “the one” (please note that there is an eye roll that goes with typing that, “the one”), but diabetes has played a role in my relationships, to varying degrees, along with many other non-D aspects of life.

There is something specific to dating that has occurred with me in recent months.  If you have followed me on twitter, or you know me, you might know I participated in an Artificial Pancreas trial back in November.  It was pretty incredible.  Since that time, I wrote about my experiences for JDRF, A Sweet Life, have spoken at various JDRF Type One Summits, spoken on behalf of Mount Sinai hospital, did interviews with some diabetes publications, ended up on the local news and witnessed a newspaper interview I did, get picked-up internationally.  Wow.  Sounds braggy right?  I agreed to all these things for the reason that I want people to understand and learn about T1D.  I want to help further the cause and if my body and my time enabled Artificial Pancreas research to progress, then I can use my mouth and my brain to explain both my experience and also why I believe research and diabetes research funding are so damn important.  I could go on and on, but that’s not the point of today’s post.

What I considered but didn’t really fathom, was Google.  I don’t hide the fact that I’m T1D (or PWD, but I never remember to use that terminology).  I have been google-able for a long time.  As far as T1D goes, my JDRF Walk team has had fundraising stuff all over the damn interwebs for years.  There is no hiding and that’s not my desire anyway.  The press over the AP trial though, I didn’t/don’t control.  An article that says I’m haunted by T1D (Seriously? I want ghosts if that’s true.  I want ghosts that can go do stuff for me… pick up dry cleaning, walk the dog, give me a massage and go scare my obnoxiously loud neighbors, etc).  According to a reporter, I haven’t had a good night’s sleep in 35 years (I was diagnosed in 1979.  I must look like a zombie!).  I am a horrendous sleeper but not just because a Dexcom has beeped at me periodically over the past few years.  I live in Manhattan.  It’s effing loud here, people. Or my favorite, that I’ve “suffered” with T1D since I was a child.  Yeah it hasn’t been a walk in the park, but the word “suffered’ is drop-kick worthy to me. You get the point.  Sometimes the facts were corrected in online press, but printed press is, well… printed.  And now when it comes to dating, and even in some recent business situations, people actually Google me.  Instead of explaining to someone new that I’m T1D and what that entails, the internet gives them a slew of information, not necessarily spun how I would introduce it and sometimes not quite accurate.

Can I have Space Ghost?  Chiseled jaw and funny? Check.

Can I have Space Ghost? Chiseled jaw and funny? Check.

I have to admit though it isn’t all bad news for dating.  I went out with someone a while ago who I had to keep rescheduling our get togethers (yep, I’m good like that).  At one point, in a casual conversation, he text me that he had Googled me.  Oy.  He made comments about my career success and some photos (hey thanks), but he never mentioned T1D.  I knew he knew.  So I waited, until I actually wasn’t rescheduling dates and while we were out, he seemed to bring it up -ish, you know, Google and I helped him out.  We discussed T1D.  He clearly did some homework (huge plus in my book) and finally asked where I put my pump.  I pointed between my boobs (I rarely wear my pump there but the dress I was wearing had no other good spot).  Nothing like an ice breaker where you have actually encouraged a guy to stare at your chest.  And then it happened, I know this sounds like a Romantic Comedy, but as soon as I pointed to my chest, I went over my target blood glucose (ps I’m on an Animas Vibe and the screen was facing outward) and my pump beeped and then lit up!  Right through the dress, a blue light. Yep so I had a guy staring at my boobs and then my chest beeped and lit up like I’d swallowed a strobe light.  After explaining, “no I did not do that by pointing at my chest”, it was good for some laughs and then I’m sorry to say, unlike a romantic comedy, he wasn’t “the one” either, but the two other times we went out, I was truly amazed at how he showed-up clearly having done more and more T1D research and we have actually stayed friends since.

There have been some, what I consider, bee sting moments too (well more like a wasp).  In a way, I am relieved I can weed out the “possibles” from the “toss to the curbs”, thanks to some AP press, but let’s face it, those bee sting “Oh Wait,  You’re Sick?  I can’t handle sick!”  moments happened both in my 20s and 30s.  They were rare, but yes, they happened and nothing has ever been as shocking as a 3rd date I went on in my late 20s where the guy went nuts on me in a restaurant about how I misrepresented myself and he doesn’t deal with sick people.  It was awful, he had had a few drinks, got louder, wouldn’t shut-up and I left in tears.  The end of that story though is I’d been set up with him by a friend and a year later she told me he had testicular cancer.  I wouldn’t wish that on anyone, even a boy who made me cry, but maybe he has a different perspective on “sick people” now.

So there you have it.  This is one of a few things I don’t talk about online and for the record, I would do another AP trial again in a heartbeat.  I would do all the press in the world and write as many stories about it as I could as I believe so strongly in research.  The clinical trial experience is like nothing else I’ve ever done and it opened my mind and my heart to the people who are trying to bring this technology to all of us haunted by T1D (sorry I couldn’t resist).  I might get a Casper cut-out on my bike for the JDRF Burlington ride.

And as for the question of why this is important to keep to myself, I just realized it isn’t, is it?

Print

Diabetes Blog Week – Ride On

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.

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Beautiful home, streets lined with potholes, and Oyster Bay way down and in the background.

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.

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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!!!

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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.

Tried to stop Fred Flinstone style but with my elbow instead of feet.

Tried to stop Fred Flinstone style but with my elbow instead of feet.

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

Repeat

Today’s post (below) is a repeat.  The reason?  I will be back for a repeat performance of this very post, later this afternoon.  After last year’s lesson in attire, I am wearing pants today.  I managed to try on all the pants in my closet this morning which are now scattered throughout my home (read: on the floor).  Also I will be getting an earlier start (I still despise being late).  I also strategically placed my pump site higher up on my waist today but my Dexcom is on my left hip.  I do not plan on dropping my drawers to show it off…. I don’t “plan” on it.  No seriously, no drawers dropping.  Keep your knickers in your pants lady.

To all the JDRF advocates who were in Washington DC earlier this week.  I salute you.  I just want to hug and thank you all.  If you have an extra 2 minutes today (NOTE: you do have an extra 2 minutes) PLEASE click this link. It will cost you 2 minutes of your time.  This SDP (Special Diabetes Program) funding is CRUCIAL for ongoing clinical trials.  GO!

Advocacy With A Rhyme

A few weeks ago I was asked to do a Q&A with 2nd year medical students at (it rhymes with) Mt. My-Oh-My (medical hospital and school). Yesterday was the day.  I was given very little information other than this was part of the teaching program and my doctor needed info about my T1D diagnosis (June 19, 1979).  I was also told to be prepared that the students may ask some “weird” questions.  Weird you say?  Hell to the yes, count me in!

I ended up being 10 minutes late  to the meeting spot with my doctor.  I full-on ran from the subway to the hospital (I despise being late).  Taking the subway during the conclusion of the St. Patrick’s Day parade was a lesson in madness.  Out of breath, my doctor also a bit frazzled, I was led into the auditorium.  My guess is there were about 300 students. There was another doctor presenting an older woman (dare I say elderly?).  I had missed much of her presentation but as I made it to my seat, I caught that she is a fellow T1D and her doctor was giving different facts about her and asking the students what tests should or should have been performed under specific circumstances.  After sprinting to the hospital and my heart pounding in my ears, I found it a bit jarring that Cutie Oldie T1D was asked to go into detail about when she had a UTI while on vacation a few years ago.  Holy Shirt, things got graphic FAST.  Cutie Oldie T1D spoke about getting a stent in her kidney for 3 weeks and how much it hurt to pee…. (get ready to gag or skip the next few words)… and she was peeing…puss.  BLECH.  Why did I agree to this AND what the hell was MY doctor about to say about ME?!?!?  I frantically searched my brain for gross medical stuff I might have to talk about… oh this was NOT good.

My turn.  I sat in a desk chair in front of the 300 students.  My doctor struggled to find her PowerPoint presentation.  I hooked up the mic to my sweater dress.  No turning back now.  A sea of students.  I was the last part of the presentation.  Lots of yawning faces staring at me.

I looked back at the screen.  There was the paragraph I’d written about my diagnosis.  My symptoms, local hospital where I went for blood test, my pediatrician telling my parents to take me to “the best” and sending me to Hahnemann hospital in Philadelphia.  My doctor got into some specifics about the diagnosis that were not part of my story but relatively universal in many diagnosis stories.  Then, “Does anyone have any questions?”.  Ummmm that’s it?  2 questions about my diagnosis.  Yeah, I was 6.  I explained I’m about to turn 41 and I am too old to remember all the specifics but I was able to tell them some of my memories and then I was off and running.

I’m a talker.  I had the floor (well chair).  I started answering stuff no one was asking.  My doctor threw in some questions and explained things like Regular insulin and NPH.  Before I took my seat, I had heard the doctor who was running this program tell my doctor to take her time presenting because we were ahead of schedule.  Too bad you let me hear that lady, because I will fill up this whole time slot…. and boy did I.

My doctor showed an image of some of the insulin pumps on the market.  I pointed out the one I have and then it happened.  My doctor asked if I would be comfortable showing the students my insulin pump.  Ummmm. I said how I probably should have worn something different.  My doctor then noticed why I said that.  I was in black boots, black tights and a grey/green sweater dress.  Pump squished to my thigh IN my tights.  She said something about how she should have mentioned that to me earlier and I thought,  “To hell with this”.  I stood-up, turned to the side and saw a woman shaking her head “No”.   Too late.  As the words came out of my mouth I just couldn’t stop them…

“You guys ready for this presentation to get REAL racy?” and there I was with my sweater dress hiked up on my left hip while I traced the outline of my Dexcom on my thigh and my pump right next it.  I showed how I could move my pump around because my tights were holding it in place but that the Dexcom was fixed in place.  I talked and talked, looking damn flashy but knowing, this was a true chance to educate and I had EVERYONE’s attention.

I told them about how much I’d agonized for 3 years about getting a pump.  How, like so many other T1D’s, I wish I’d done it a lot sooner but that my advice to them, if they ended up in endocrinology, was not to force a pump on anyone.  Plant the seed, water it, show it some sun and then see what happens.  I needed to want a pump on my own.  I had to deal with my own issues of being attached to something, and my own issues of self consciousness, and meeting other people using technologies (especially Dexcom).  On and on I went.  I told them about how important it is for me, the patient, to work with my doctors like a team.

My doctor told them about the benefits of insulin pumps and different types of boluses. How a square wave bolus works and and I explained to them my enemy… pizza.

And then the questions… Someone asked about the psychological impact of wearing a pump.  Alleluia!  So I explained how I’ve had a pump for 14 years and how amazed and hopeful I am when I deal with kids, many times they are not diabetic and how they will tell me there is a kid on their (insert sport) team who has a pump too.  He/she is diabetic.  That’s it.  They NEVER, EVER see it as a big deal.  That it’s the parents of that kid who are more likely to see it as a big deal…. so-and-so’s kid is diabetic and HAS TO BE ON A PUMP.  I told them my belief that these generations beneath me, live in a different, much more open minded world and they (the doctors) can help foster that.

I told them how it is hard dating and being in relationships.  I can control how I present information and why I have an insulin pump but I have zero control over someone’s reaction to it and that can be hurtful no matter what age you are.  How I have no control over the internet and when you Google diabetes it isn’t a pretty picture.  How I look like the picture of health most of the time.  I am in the best shape of my life right now, but people think my being diabetic could/will mean I will go blind, have all my limbs amputated and will die when my body can no longer handle dialysis.

More questions and more screens of the Dexcom.  I explained how the Dexcom is a Godsend for me.  That I live with a dog who is useless in giving me glucagon or getting me carbs.  That I don’t always feel myself go low in my sleep and sometimes I manage to sleep through the Dexcom and how I feel “lucky” when ‘i see the graph the next day.  I poured it all out and how freaking scary being alone and treating a low can be.  My doctor explained the Dexcom arrows and I gave them my real world reactions to those arrows and how they are my very personal warning system.

I told them how I hate admitting it, but that I worry every single day about what this disease is doing to my body.  I workout like crazy because it makes me feel good, it reduces stress, and it is keeping my heart and circulation going BUT it is a battle to keep glucose levels in my target range with exercise.  I told them how frustrating this can be and how quickly the workout “high” fades when battling a dropping or rising blood glucose level.  I explained that there is a ton of trial, error, doctorly pointers and glucose tabs that dissolve in the wash in my gym pant pockets.

I ran out of time.  There was applause.  My voice felt scratchy.   Student thanked me as I walked from the stage.  Before I left I thanked them for listening and to please become GOOD doctors.  I was smirking.  I couldn’t hide it.  I took that presentation in a different direction and I flooded them with stories and information.  I shared my passion.

My doctor walked me out and informed me that 3 people in the class are T1Ds and another 2 students have siblings who are T1Ds.  She thanked me for getting a discussion started.  I’m not sure about the discussion part (it was the end of the day on St Patrick’s Day) but I did feel like I did my thing.

Advocacy.  Go.

A 6 Point Update!

How fantastic is this?

“I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

—Edward Everett Hale (1822-1909)
American Author

LOVE it.

1.  In other news, I’m trying something new this week.  It was just a post shower whim Monday morning.  I think my tummy needs a break and in order to keep my friend laughing who thinks I’m butt obsessed, I put my pump site on my derriere.  It was at the top of my badonkadunk on the left side.  It felt a little weird at first, but worked GREAT.  Yesterday I wore jeans and it did make me a little nervous that I had to be “aware” of where it was before I peed, But for Monday- Wednesday, I didn’t feel a damn thing (Day One was the best though… wore vegan leather patched leggings.  Vegan leather pants are such an awesome marketing ploy… seriously brilliant.  No pleather here… “vegan leather”.  Brilliant).  Day One I wore a blouse that covered my bum, but this is what it looked like (red circle shows the site and the cord).  I thought it would stick out more, but it was a VERY pleasant surprise and did I mention how GREAT that site worked?  Fantastic!  Old dog, new tricks.

buttpump copy

2.  I received a new Dexcom receiver last week with the Share stuff.  Yay bluetooth!  When I was in the AP trial a few months ago, the Dexcom receiver was put into a sleeve that enabled it to have bluetooth (whole AP system works off Bluetooth).  I am thrilled the Dexcom receiver now has bluetooth as this seems like one more bridge crossed in getting to Artificial Pancreas land right?  Sunday I was on a rather crowded train and carrying way too much stuff (and this guy),

That white spot on his nose is my fave

That white spot on his nose is my fave

and the novelty of seeing my Dexcom info on my phone (which was easy for me to grab from my pocket) was rather convenient.

This was from today, not on the train.  Dog, bags, and people everywhere was a bit much!

This was from today, not on the train. Dog, bags, and people everywhere was a bit much!

3.  With that said, I did upgrade to the Animas Vibe pump 3 months ago (3 ish?).  Now, that I’m used to it, I again wonder why I bother reading reviews.  YDMV is just so darn TRUE (YOUR DIABETES MAY VARY).  This is the screen that is a game changer for me (thanks Karen H for teaching me how to set this):

IOB screen)

 

Great BG right now (Nice moment).  The part I am LOVING though is that IOB.  Wow.   THIS. IS. AWESOME.  I hit one button on this pump and BOOM, I see my BG and Insulin On Board.  Wow.

4.  I now have my second butt pump site.  I have no idea why I was squeamish about trying this.  I am currently wearing tights and took a photo to show how much this does NOT stand out.  I then realized the photo is way too risque.  Apparently I now know my limit on “putting it all out there”.  My Dexcom is on my left upper thigh/hip, pump site on left top of butt cheek and my pump is in my tights right below the Dexcom sensor.  It has worked well today and I am in a dress that is very fitted.  It amazes me that I ever worried about wearing all this equipment.  All good in the hood.  No biggie.  Yay tights.

5.  Today I officially kicked-off my JDRF Burlington Ride page.  It’s been up for a little while but today is my birthday and I want my birthday to be something productive, something positive and if I am nailed down for this biking madness…. errrr, I mean “adventure”, let’s do this right!  Birthday?  Ehhh.  Fundraising KICK OFF DAY?  Hell yes!  I have been shocked by the success today and I feel even MORE motivated to embrace this adventure (still mildly terrified though).  Bike research is going well.  Bike test ride is Sunday.  Crashing would suck (and I don’t mean BG, I mean actually crashing into a car).  Want more info?  Want to see how we’re doing?  Curious about the Ride program? Click HERE!  Do Good, Feel Good.

6.  Whew.  Last thing.  There’s a Type One Nation Summit in Long Island NY this Saturday.  The last speakers of the day are attempting this tag team style.  They are talking about their Artificial Pancreas trial experience.  Yep, Brian and I will both be there, and yes, we are speaking together.  This could be…. interesting…? The line-up of break out session and speakers is truly remarkable and I am so honored to attend.  Want more info?  Right HERE .  Originally I planned on doing a comparison like I did with Britney Spears (but the Long Island version which would either involve… Billy Joel or Lindsay Lohan).  I didn’t get to that and my friend who did all the previous photo work is in Italy so use your imagination!

 

 

 

A Wednesday That’s Really A Tuesday and a Kardashian Booty

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.

Purple Mountains Majesty!

Purple Mountains Majesty!

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.

skipump

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.