Photos seem to be more my speed than posting on a blog right now.
Photos seem to be more my speed than posting on a blog right now.
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.
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.
I have another post over at A Sweet Life today. I wish I’d done a better job editing but it was a bit (totally and completely) rushed. I am still in the Artificial Pancreas clinical trial and there continues to be lots more information to share. The more people who know about this program, the better. The more people willing to participate, the better. And the more people who get involved in fundraising for crucial research, the better. My experience is proof of a JDRF grant at work and testament to the incredible and honorable dedication of teams at both Mt. Sinai New York City and the University of Virginia.
2 other things:
1. This is my DiAs screen from last night. The loop is CLOSED in this photo and I am supposed to be asleep (and a cool view of the Empire State Building):
2. I was briefly reunited with my dog today. He smells less than superb and I don’t care:
I, along with 4 other people affected by T1D from the JDRF NYC chapter, met with representatives from Senator Chuck Schumer’s office 2 weeks ago (yes I did almost autocorrect his name to “Chick Schumer” recently, caught it in time, and then laughed so had alone in an elevator that i partially slid down the wall). We were there to discuss S. 2689 (Medicare coverage of Continuous Glucose Monitors). I left hopeful and with finger’s crossed.
On Thursday night while in route to Artificial Pancreas stuff (Wow, yes, wow), I received an email that Senator Schumer will co-sponsor the bill. We need this to happen folks. Many people (and I’m sorry to say fellow T1Ds) don’t see how important this is. Let me reiterate why this is important to support this and help fight, even if you are nowhere near 65 years old and think this doesn’t affect you.
1. If you support the Artificial Pancreas Program, a CGM is an integral part of this program. Let me spell it out: to Close he Loop, you need a CGM. If Medicare does not support and cover CGMs, whatever the device is that becomes the Artificial Pancreas will have THAT much tougher of a time to get in OUR hands. CGM coverage by Medicare is a hurdle we can knock out of the way to get us closer to the availability of the Artificial Pancreas.
2. Health insurance companies look to Medicare. If Medicare does NOT cover CGMs, it makes CGMs “appear” unnecessary. My CGM is a savior to me. If yours a savior to you? A savior to someone you love? A savior to someone you mildly like? Then go HERE and support THIS.
Now here is the BIG part… TALK this up! Post it on Twitter, FaceBook, Instagram and whatever other social Media things people use these days. Reach out to people BEYOND the diabetes community! REACH OUT.
Did you go to High School? Reach out to your High school alumni. Do you have siblings? Get them to sign. Friend of friends? Yeah, grab them too. This doesn’t cost money. it just takes a few minutes.
Next up… Artificial Pancreas stuff. The photo is pretty ridiculous (why are we in a magnifying glass? Well it’s appropriate that I’m laughing, no?) but here’s the skinny from Brian and me over at JDRF’s Type One Nation.
Thanks for reading. Spread the word.
A few items of note:
1. Health insurance stuff is taking up a tremendous amount of my time and is downright upsetting (re-applying to have an insulin pump? & No CGM coverage?). After an exorbitant amount of BS, I finally am working with a health insurance broker. After the 16th phone call and 14th email to my current insurance company asking about the durable medical equipment of the new plans, I was emailed a list of approved diabetes durable medical equipment suppliers. I Googled every single one on the list. They do not carry insulin pumps, pump supplies, Dexcoms or Dexcom supplies. You know what they do carry under “diabetes supplies”? Glucose meters, prosethetic legs, and impotence devices… ummmm WTF?). So yeah, I went to a health insurance broker. When she told me yesterday that this process would be easier if I either had a dependant or a spouse, I didn’t even want to kill her (shocking since under other circumstances, those words would sting like crazy). By this, she meant that due to how my business is set up and living in the state and city that I do, having someone else to put on the plan would be a benefit for me and give me more options. I’m running out of time to get this sorted out. Health insurance being a constant stressor in my life is getting old.
2. On the other side of insurance woes, is beauty. True, all encompassing, can’t-get-enough, I-can-smell-it-in-my-sleep, beauty. Beauty that is soothing, and seems magical. I experienced this kind of beauty on Sunday when I hiked through Muir Woods in San Francisco. Realizing you are just a speck, with a limited timeline and are only here for a blip is humbling and also beautiful. You know what else is beautiful? Hearing a rustling on a hillside and a few seconds later having a buck jump right into the trail a few feet away from your face (ok that was beautiful and heart-pounding-out-of-my-chest scary). We are just so small.
3. I didn’t see this right away, but yes, a moss/Redwood trunk heart. Also, the clover leaves are all hearts too. I’d love to go back and take in all the smells again (but I’d wear warmer clothing and a hat). It smelled like Autumn leaves, moss, wood, damp air and adventure (adventure smells awesome).
4. I am blogging about my Artificial Pancreas experience at A Sweet Life (and some stuff for JDRF that I think comes out tomorrow). I’m a little behind (a lot) and need to catch-up ASAP. Tomorrow I go back on the clinical trial’s insulin pump. Today I started both trial Dexcoms. I currently look like this (well it’s freezing here so I am also wearing a HUGE sweater that looks like a tent). It’s all sweatpants and leggings for me these days. Cozy rules. Totally sexy:
Foot is healing and Dexcom site is switched.
Left thigh doesn’t hurt at all but I am curious as to why the blood pooled around the edge of the sensor (yep, that’s a skort in the pic… I like to rock a skort regardless of the teasing I seem to keep catch about it) . Anyone? I don’t know why I’m so curious about this, but after all the blood upon insertion, I expected a big bloody bruise under the sensor, not around it…. Anyone?
So what’s next? In a dramatic moment (read: insane), my sister and I signed up for JDRF Ride. No, not one of the BIG Rides, but a local one…. well Jamaica….ummmmm Jamaica, Queens… which seems far away (right now) since I still haven’t figured out how we are getting there. You know what else I haven’t figured out? Bikes! We don’t have bikes! We *may* have a connection to borrowing bikes thanks to JDRF. Great! There is a 10 mile version to which I said, “pish-posh”. I regret my pish-posh attitude now. I will be riding 20 miles. I had no idea how far that was. My training so far has been 2 Citibike rides.
That is the Brooklyn Bridge in the background, which is part of the route of NYC’s JDRF One Walk. This is also the view over my Citibike handlebars and my big huge purse strapped to the front. My training looks wimpy. My training IS wimpy.
After eating way too much unhealthy food over the 4th, yesterday I went to the gym. Granted I have some sort of upper respiratory thing I’m fighting through, BUT I did a 1/2 hour on the elliptical and then switched to a stationary bike. I was good and sweaty and coughing and figured maybe I rode 10 miles. I looked down. Nope. 2.16 miles. Holy Smokes this going to be ugly. How many spin classes can I go to in 3 weeks? Eek. Remember when I did that CYC (spinning madness) class for JDRF? My sister and friend loved it so much that they still take the classes! I hope my sister doesn’t mind me riding on the handlebars of her bike.
Here’s the route (terrifying YET exhilarating and then a little “OMG” and then “those stops look fantastic”):
Next up: I leave Wednesday for Washington DC for the JDRF One Walk Conference: Road to Success. I’m excited and super curious.
And finally, in the next few weeks I hope to have some updates on the AP trials which are to begin HERE in NYC. Not holding my breath for my own guinea pig involvement and not getting over enthusiastic (so I keep telling myself).
Keep advocating folks.
Endo appointment yesterday. Didn’t have high hopes (high, ha) as I have been running way TOO high lately, especially overnight. A1c is a higher than it has been in 3 years. Disappointing but not surprising (up .3 BUT that takes me to the next whole number and that I seriously dislike). Also gained a chunk of weight. More than I thought, but not upsetting as I missed having a butt. Baby Got Back can’t be my favorite song without some junk in the trunk right?
Adjusted some basal rates with my doctor as the last adjustments did zilch.
New basals worked way TOO well overnight. Ooof. This morning’s headache plus allergies was like being b*tched slapped by my pump and then a bag of freshly cut grass… over and over again.
Also, I found a whole bunch of hearts this morning. And TONS the last few days. Timing. Found: hearts . I still have a lot to add. I find myself walking routes where I know I will see hearts that I’ve already met. If nothing else, it’s a good breathing exercise. See a heart, take a HUGE deep breath.
According to FitBit, I’m averaging just shy of 40 miles a week. How the H-E-double-hockey-sticks is that possible?!? Amazing. That’s all walking! Cray.
There appears to be another shot (shots, ha) at my getting into an artificial pancreas trial. I don’t want to think too much about it and set myself up for disappointment but the idea of this old body being used for diabetes progress is deliriously exciting. Stop thinking about it. Easier to say than do.
My 35th diaversary is approaching next month. My feelings on this are a tangled web. I should write about that, as maybe I’m not the only one? 35 years of this fear and giving myself incessant mental pep talks is a really long time.
In other news, my eye is FINALLY healing (and an allergy puff ball).
This past Saturday, I said goodbye to two of the very biggest Alecia’s Stem Cells supporters. They were with me from the very beginning of founding ASC. Saturday would have been their 60th wedding anniversary. Now they are back together. Also, being on a moving dock with ashes is a possible recipe for disaster. Life is short. Never lose sight of the wonderful experiences you’ve had along the way. The people who believe in you… hug them, love them, appreciate them. Sappy-McSappster moment.
A few other random thoughts and observations: 50 Cent should stick to rap, I need to try pump sites in my lower back, Maya Angelou was one hell of a woman, and I may have seen Apollo Creed at a train station in Jersey on memorial day.
Yesterday. Day off from gym. No overnight basal reduction needed (or so I thought). Exciting dinner of avocado and PopCorners (OMG they are so good). Glass of wine. Went to bed. Fought Dexcom beeping lows from 12:30am onward. Slept in normal spot… inside of bed (against wall). On outside of bed: Ipad, cellphone, Dexcom, dog, dog’s BFF toy Froggie, entire jar of Glucolift tablets. Ate periodic tabs. Hugged dog. Dog annoyed. BG would come back up, but still too low.
Dragged this morning. Shower. Coffee. Subway. Therapy. Latte. Dexcom beeping. Too high. Correction + bolus. Bought flowers for office. Subway. Office. Shared piece of toast with office mate. Bolus. More coffee. Bg too high. mini Correction. Work. Make jokes. Realize no one likes rap Friday. More working. BG still to high. Must be patient. Busy. Go to check Dexcom. Straight arrow down. Candy. Keep working. More beeping. Double arrow down. Use last (very old) Quick Stick. Wait. Sad that Quick Stick is gone. Put quarters in JDRF jar for all the F-bombs I dropped. $1.50 total.
And then ***PRESTO*** …..
Not the ideal BUT there’s gotta be some entertainment value in this right?
Real quick…. Don’t have much time for blogging these days so here are a few food-for-thought-esque items:
1. I “followed” a woman around CVS to get a photo of her dog. I thought the dog looked like Charo when I saw it on the street. Yes, I then turned around and chased them through a store. Cuchi, cuchi. I love this dog (the dog’s real name is Blanche).
2. Someone once gave me the advice of taking a photo of your pump’s basal settings. This is REALLY good advice. When things go wrong, this is REALLY important stuff. Do it. Now. I will wait. Go. Trust me.
3. I saw this sign last night on the subway.
When the gal sitting in front of the sign got out at Grand Central Station, I took the fastest photo ever (everyone was walking into me at the same time… human bumper cars). I have issues with this sign. I DO want a healthier NYC. I also have a huge desire to eradicate the belief that I had too much sugar as a kid and developed T1D. I also would like it noted I never had orange soda. This will be it’s own blog post someday (the sign, not some lack of orange soda). Which leads me to a post I think is effing brilliant (and if you missed this, do yourself a favor & absorb this one) from over at Sweetly Voiced. If you are still reading my gibberish and skipped over the link in the last sentence, go back and click on it. Worth it.
4. This is what my Dexcom looked like this morning.
Pretty sweet. My Low alarm is set at 90. 90 and steady is awesome. You know what’s not so awesome? The alarm going off over and over at a 90 bg when you just want a few more minutes of sleep. The alternative is to be 90 and dropping and not feeling it and never waking up again, so I guess that pesky alarm will just have to remain. Ahhh 90… you torture me with your goodness.
5. This morning I saw this on a subway sign:
Look closely at the “L”. there’s a heart! The L train is the LOVE train? Say what? Good stuff people.
6. I read this earlier today after all the 90 bg alarming business. I’m sure there’s a way to tie this into diabetes stuff but I’ll leave that one up to you (I gotta go). I think it’s terrific. Happy Wednesday.
“I began to realize how important it was to be an enthusiast in life. He taught me that if you are interested in something, no matter what it is, go at it at full speed ahead. Embrace it with both arms, hug it, love it and above all become passionate about it. Lukewarm is no good. Hot is no good either. White hot and passionate is the only thing to be.”
Roald Dahl (1916-1990); British novelist