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.
The countdown is on!
I have been a participant in the US Senseonics 90 day implantable continuous glucose monitor clinical trial since March. 7 days left. Here’s the info and latest announcement via DiaTribe .
I’m also back on the bike – ish. My self led training rides have been more like meandering training tours (oh look! Grafitti…) and in the 20-25 mile range only, but I’ve got time (denial). The Coney Island Art Walls are almost done!
Last weekend I sprayed myself with SPF 30 but as I’ve been having trouble keeping the Senseonics sticker and transmitter in place (especially when I exercise), I was cautious to dab sunblock near my robot arm but not spray or slather. That was unfortunate. This interesting tan-fail has happened twice now. The result looked like this post-shower. So sexy, no YOU stop it!
And this 4 days later:
7 days left! After they remove the implant I will have stitches. Since I suspect I will have this cool and awesome tan line for a while longer, I have been thinking about how I will rock my new look. This is the design I have chosen:
Like those wheatpaste girls from Gold Loxe say “Just Right”
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.
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!
Gravel removed from leg. FIRST fall is over! Yay!!! Still have my teeth! Woo hoo!
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!
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.
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.
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
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.
I’ve been meaning to post this for weeks.
The BGs are truly rubbish, but do you see the profile of the face too?
Or am I crazy?
Or just crazier?
What a morning.
Early Gym intensive? Check.
Dog leaving me 3 “traps” and my stepping in 1 as i stepped out of the shower? Check.
A LOT of cursing at said dog? Check.
By the time I got into the elevator to go to work, I was saying, “Good Morning” through gritted teeth. A full elevator. I was frantically trying to pull down my dress which was caught on my overflowing laundry bag while still telling my dog he was in BIG trouble. I was completely unaware that the older gentleman to my side was addressing me. I was more concerned with getting Bad Dog on his leash and my dirty laundry not falling around my feet.
The gentleman asked again, “Does that work with your cellphone?”.
My Dexcom sensor was right in his line of vision. It’s at the beginning of week 2 and kind of a bedazzled mess (hey I take pride in my bedazzled Dexcom designs and this sensor has lost a few rhinestones along the way. I know this because 2 came off in my second shower this morning… you know, the one AFTER I stepped in the dog trap).
I now had the attention of the other 2 people in the elevator as well. I explained to the man that it’s a Continuous Glucose Monitor. Seeing the blank look on his face, I quickly added, it tells me my “blood sugar”. Still blank.
He quickly said he was sorry. And that he didn’t mean to offend me.
We were out the door by this point and I was attempting to explain to him not to be sorry, but I was already losing the laundry bag, Bad Dog was attempting to pee on the front step (!!) and I was fairly certain my favorite, cozy summer dress was pulled-up and flashing my knickers to most of my street.
I kept thinking about it. Was he sorry that I’m diabetic? Dude, me too! Well most of the time, me too. No, he was sorry he asked about my cellphone that is inserted into my arm. Like he displayed bad manners or something. I’m in a sleeveless dress. I’ve got a weird looking sensor in my arm. It’s decorated with multi-colored, multi-sized rhinestones. I’m fairly certain this screams, “Ask me what’s on my arm”. Or it screams, “I’m a girl who likes pink and bling and making stuff”.
I look forward to seeing my neighbor again. I look forward to explaining to him a wee bit more about my Dexcom and how it’s a great way for me to talk about diabetes technology and why that’s important. I then plan to speak into my arm and pretend I’m taking a call to my Mom.
Do Good, Feel Good is a phrase I say a lot. I probably tweet it even more often. It’s one of those phrases that just sticks in my head and plays over and over (kind of like The Cranberries’ Zombie or recently Kris Kross’ Jump. I’m sorry if you now have these songs sticking in your brain too). I digress. Oops. Yes, Do Good, Feel Good.
When I researched getting a CGM, specifically my Dexcom 7+, I started reading diabetes blogs in a mildly obsessive way. That was my introduction to Kim from Texting My Pancreas. Her blog led me to other wonderful diabetes blogs. When I decided to bite the bullet (well in this case, let my boyfriend attempt to insert the Dexcom into the back of my arm), we watched her video twice possibly without blinking. When I put the Dexcom in my arm the first time solo (I’ll admit it, I was scared), I watched that video two more times (this is the part where I must mention she has better gravity where she lives). Anyway, Kim was a big help to me and I frequently refer to her in my diabetes mentoring program when questions about CGMs arise.
Kim started an “event” for the month of December called Give All The Things (you really should click that to see what I’m talking about). I was immediately more smitten with her than I already was. I won second place at the very beginning of the month of giveaways. I won a small plush pancreas. Oh you don’t know what a plush pancreas is? Well you can see it here. It made me laugh but it got me thinking about Kim’s pay-it-forward idea, an idea I try to incorporate into my own life. I contacted Kim and told her a little about my jewelry design business and it’s connection to my fundraising walk teams, Alecia’s Stem Cells. I offered to give her a pair of earrings for her giveaway. Although it is not totally diabetes related, the jewelry IS made by a T1D (me) and 10% of the proceeds go to JDRF. Kim wrote the sweetest note back. It put a big goofy grin on my face.
Today Kim is giving away the earrings at Texting My Pancreas. I saw the tweet about it this morning. I immediately smiled. What started as an overwhelming day still is overwhelming, but her post lightened me. Twice I have checked the comments (which is how you enter her contests) and both times I smiled more and “may” have had some extra moisture escape my eyes (must be allergies, I certainly am not crying again, right?).
If you have some time, check out the comments of some of her other Give All The Things posts. It will immediately remind you how fortunate you are to be part of the DOC.
Do Good, Feel Good. Thanks Kim.