Tag Archives: dsma

No Charge

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I am currently on vacation.  As any D knows, there’s a lot of planning that goes into packing D supplies… getting prescriptions filled, double checking all your gear, bringing back-ups to your back-ups.

Things have changed in my diabetes world in the past 2 years.  Well lots of things have changed but the one that explains this post is that I have rechargeable devices.  These devices combined with all the other rechargeable, non-diabetes devices that may eventually lead to my mental demise.

1 charger didn't come on vacation.

1 charger didn’t come on vacation.

My current cast of mental demise making characters involve the following items: Macbook (1 charger), Kindle (1 charger that charges from Macbook), IPhone 5 (1 charger that charges from Macbook), Mophie case (to give Iphone extra charge so I don’t run out of power) (1 charger), Dexcom (looks EXACTLY like charger for Mophie case but they don’t work interchangeably) (1 charger), Verio IQ (charger looks like the old, old blackberry charger, 1 charger).

So yes, I should have 6 chargers with me on this trip.  I have 5.  I am missing the Verio IQ charger.  I am with most of my family.  I have ransacked their bags.  There are a ton of chargers.  3 different types of cellphone chargers, 4 different laptop chargers, one iPod charger, an iPad charger, and a Kindle charger.  There is NOT one charger out of all these items that will fit my Verio IQ.  THIS is a problem.

I was in Manhattan when hurricane Sandy struck.  I had plenty of time to prepare.  I had my to-go bags.  My dog had a to-go bag.  I reinforced my windows.  I had a flashlight.  I saved water.  I watched the news and worried UNTIL my power went out.  I kept texting my sister (a newbie Manhattanite).  I wanted her to stay safely inside and be prepared.  Power gradually diminished on my phone.  By “gradually”, I mean really quickly.  I did all the things you do to conserve power on your phone… turned off apps, reduced the brightness, turned off wifi.  The next morning my phone had barely any power.  My home had NO power. I could not reach my sister.  I packed-up and headed north.  I found power at Avis on 43rd street. They let me charge my phone.  My sister was ok and not evacuated (her whole neighborhood lacked power too).

I didn’t get power back for over a week.  When I say I didn’t get power back, I mean my home, office and gym, all the places I would have gone to charge stuff.  I stuck it out 3 days in my home but the lack of running water and the creepiness of my neighborhood eventually got the best of me.  The dog and I sofa surfed for 4 days.  I was constantly turning off my phone because I was concerned, when I was below Manhattan’s power line, I needed to save it for an emergency.  Although batteries were at a premium, I watched people with powerstrip cords charging all their gear at ATM terminals.  I pretty much decided that week that this rechargeable stuff may be “better’ for the environment BUT it is super stressful to me.

Chase Bank ATM - Manhattan above 42nd street

Chase Bank ATM – Manhattan above 42nd street

I saw someone with a T-Slim pump last week in my endo’s office.  I saw the pump for maybe 2 seconds.  Seeing the T-Slim being used in real life was cool.  Diabetes technology is cool.  A rechargeable pump would give me a friggin’ heart attack.  Seriously my stomach just did that knotty, No-No thing just thinking about it.

I gotta stop writing this post now.  I’m on vacation and have to figure out how I’m going to charge my glucose meter.  Give me a damn battery please.

 

 

34th Diaversary on a Business Trip

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I’ve been struggling (read: procrastinating) about my 34th diaversary blog post. I’m in a different spot than I was a year ago. In putting this off, it’s hard not to focus on what seems like an incredible amount of flat-out craziness in the past 2 months. If you follow me on Twitter, you might have picked up on my health insurance woes (I mean it’s just nuts). Bronchitis and emotional turmoil/lack of sleep/ and not eating much didn’t do my BGs any favors. During the bronchitis that wouldn’t quit incident (come on lungs, enough already), I kept taking more and more insulin, pulling pump sites I had hoped were “bad”, and switching vials of insulin. I’d get those bg’s down to the low 200s but just couldn’t get them to budge any further. These issues were just the tip of the iceberg. In the interest of preserving other people’s privacy (and perhaps my own sanity), I will simply say I have endured and been surrounded by a heck of a lot of heartbreaking loss recently. When I really think about it, it’s overwhelming and completely surreal. Then, I think of my diaversary and I’m just like, yeah, whatever. I have bigger fish to fry.

Monday night I attended my very first JDRF NYC Board meeting. I only knew one other person there, it started late, I got there early and it was, well, a bit awkward on my part. I felt very “new” in an organization where I often feel “old”.

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Yes this was the view from the meeting. Yes, this is insane.

Fast forward to the dinner presentation. Tom Brobson spoke (if you don’t know who he is, he is the National Director of Research Investment Opportunities at JDRF). Yes, THAT Tom. Tom spoke and I was elated. I’ve watched Bob’s artificial pancreas videos before. As you may know, diabetes discoveries really do occur, another mouse is sometimes cured and I make the same comment for the upteenth time, “Oh to be Minnie Mouse”. Tom, in my view, is sort of like Mighty Mouse. He’s been IN these clinical trials. He has seen and been part of an experience that I don’t know.

As Tom spoke on Monday night, I felt a sense of levity. When he talked about not having to think (stress) about what he was eating (during his study out in the wild… AKA the real world), his enthusiasm was evident. It was intoxicating.

I read a lot about what some term “practical cures”. Hmpf. Let me get this straight, I could eat or not eat what I want and not think about bolusing, or splitting a bolus, or needing to bolus earlier or later or not at all or dropping after all this bolusing hours later? Are you frigging kidding me? I’d have to wear some devices and carry a smartphone? Oh that would be so tricky since that’s EXACTLY what I do now but I have to think about this stuff ALL the time. A steady stream of checking and reacting, reacting and checking.

Tom spoke about other technologies on the horizon. Other clinical trials funded by JDRF. I could go on for pages, Some I knew of and others were new to me, but here’s the part that was the happiest to me. When the presentation concluded (also note he fielded questions the ENTIRE time he spoke which was also awesome), I decided I wanted to hug him. Yeah that’s right. If this guy is the Mighty Mouse of clinical trials and the technologies I fantasize about, you sure as hell can bet I’m going to thank him and hug him like there’s no tomorrow (and take photos of course).

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Tom is awesome.

As is often the case in my hugging world, Tom seemed quite surprised and offered me his smart phone to take a photo while I held it (with the artificial app screen showing). What the heck, humble guy? I didn’t cry but I did tell him about how much I have loved watching his videos. How I send them out to the people who love and support me on this fight against T1D. That I show his videos to our Alecia’s Stem Cells supporters to show them WHAT they are funding. That I admire the trials he’s been in, by choice, that sounded awful. Trials hooked up to 2 IVs and being all bundled up so his veins wouldn’t collapse as he sat in a hospital bed. So yes, I hugged him and I hugged him hard!

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So here’s the scoop kids. Happy 34th diaversary to me. I still have hope. Pure and simple. I am still me. I have hope that technology will continue to better my future. I acknowledge that there is such a small percentage of people who are T1Ds in the world, that I need to push this agenda for a cure and better treatment options. I need to raise money and take part in grass root efforts and get other people to support these ideas. I’m still not giving up. I will continue find joy in life and I will fight like hell to keep living. I will also fight like mad for a better future for my fellow T1Ds.

Dexcom in the Elevator

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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?”.

Hmmmm?

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).

dEXCOM ELEVATOR

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.

“I’m diabetic”.

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.

Share and Don’t Share – Monday 5/13/1

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Last year I wrote my first, real Surfacefine blog post during Diabetes Blog Week 2012.  I am thrilled to be able to participate again this year as well.  For more information on the 4th Annual Diabetes Blog Week (and be prepared to read some really fantastic posts from a variety of perspectives, Check this out http://www.bittersweetdiabetes.com/2013/05/diabetes-blog-week.html :

D blog week

Here’s today’s topic:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

Wait a second!  Does the blog reading cut into our 15 minutes of seeing our medical team?  If so, I’ll just copy the bullet points I read off my phone during my appointments and make those questions into my next blog post!

Alright this is serious, so here goes: My Endo is a T1D.  She has been diabetic longer than I have (I was diagnosed in 1979).  She is married and has two kids.  I knew her long before all of that.  I’m pretty sure as a fellow T1D, there would be nothing shocking or even surprising about my blog (well actually that I crack jokes when I write but I don’t have time for that when I see her) Although I have joked in the past that meeting with my endo is like this:

http://www.youtube.com/watch?v=NeK5ZjtpO-M

I appreciate that my endo is a T1D too.  When I was kid and had been a T1D for a few years, my family switched pediatricians.  Yep, we switched to a pediatrician who was a T1D too (what’s up Dr. Selig?).  Guess what else?  My podriatrist is a T1D too.  Do you sense a theme here?

I don’t have anything huge that I would want my doctors to see or not see if they read my blog, BUT if the question were about my health insurance company, then yes, I have a strong opinion on this one:

Dear Health Insurance Company Who I Will Not Name Because As Much As I Fight You, I Also Fear You,

Do you remember last year when you sent me a letter about how I should be getting regular A1Cs and then explained what an HbA1c is?  Do you recall how the letter pointed out that I am missing items/tests for “good” diabetic care?  Do you also remember that I chose to ignore it instead of confront you on how insulting it was?  I did that because you scare the hell out of me.  You and I both know  I am on a private plan since although I work in a partnership, I am the only one who needs health insurance (as in: others have spousal health insurance or Medicare).  We also probably both know that I have found alternative plans over the years but what I would save in premiums would be spent covering deductibles, so here we are.

We started together for a few reasons, but the most important one was my opthomologist had switched plans and I had to scramble.  I hope to never know how low I would sink to keep seeing my opthomologist (his group treats a celebrity with diabetes. If that doesn’t matter to you, great.  It is a HUGE vote of confidence to me).  My primary care physician is also part of your plan and she’s got a great working relationship with my endo so that’s an added bonus.  You know who doesn’t participate with your plan?  My Endo!  Crazy right?  Especially because she DID participate with your plan, left her hospital, went into pharma sales, came back to another hospital about 30 blocks away and I am happily back under her care, but she isn’t one of your plan’s endos.

At one point I saw 3 endos in your plan.  1 is my current endo.  Another was a very young doctor who although “nice” she seemed to want to be my friend more than my doctor.  I stuck with her for awhile although I questioned her T1D experience.  She left for a pharma job too.  I even had an appointment with her replacement.  It became very clear that not only did I know more than he did, BUT that he couldn’t answer ANY of my questions.

So Insurance Company, I have given you the benefit of the doubt with that letter of yours about what I’m doing wrong with my diabetes care.  I pay out-of-pocket to my endo.  I am beyond lucky to be able to do that.  I get all blood work done a week before my appointments, with a prescription, at one of your labs.  I don’t get any labs at all done in her office like her other patients.  For all you know, I do not see an endocrinologist at all… EXCEPT you pay for my blood work at your labs.  You pay for my HbA1c and microalbumin tests.  The prescription for the tests and the results come from and go to that very doctor who is not part of your plan.   You can continue acting like I don’t see an endo.  You can pay for my Dexcom which had all the proper paperwork for medical necessity as did my pump.  You can keep covering my ACE Inhibitor under my prescription plan too.  You can keep seeing these prescriptions come through my endo’s office and you can remain clueless when I tell you I wave my right to have YOUR on staff nurse (with no specialty in diabetes) review my case to perhaps give me some pointers and recommendations.

Getting back to the question above, my dear health insurance company, you can raise my rate $100 a month EVERY year for 4 years running, and I will work harder to make more money too.  I don’t want you to ever see I have a blog.  I don’t want to be anything more that a code number to you.  I don’t want you to know about my challenges and victories as a diabetic.  I will fight you over billing errors, but I don’t want to ever be on your radar.  I will spend hours trying to figure out how to work with you and when or if that doesn’t pan out, I will spend those same hours working around you.  I’ll keep signing the checks, and take care of myself.  You keep making your “suggestions” so I’ll mock you in my blog.

xoxo,

Surfacefine or perhaps Diabetes Batman would be a little more secretive.

 

Inspired to Dream

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“If your actions inspire others to dream more, learn more, do more and become more, you are a leader.”
John Quincy Adams (1825-1829);

6th US President

I read this quote this morning and I thought about in terms of my own life.  I’m lucky to have so many people around me who inspire me (both in the real world and also the virtual one).

In times of distress, it’s reassuring to think of the people who truly inspire you.

Yep, I am a lucky girl

 

Wordy Wednesday – Missing A Cape

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Every diabetic (regardless of type) knows the importance of heart health.  At the risk of sounding harsh and/or critical, if you are diabetic and NOT concerned about your heart and circulatory system, then I hope the rock you are living under is warm and cozy.

Months ago, in the depths of winter, Cherise hosted a DSMA chat (diabetes social media advocacy chat)  about exercising during the cold winter months and how do we stay motivated.  I ended up in a conversation during the chat with some of my #DOC Dweeps (diabetic Twitter friends) about keeping each other motivated and that I would essentially take the role of “Drill Sargent”.  Our group has grown over the months and there are so many “@” names on the tweets that there is barely room for a message (140 characters is clearly not enough).  It is not particularly organized but the tweets are a great reminder to keep yourself moving and nice little pat on the back from your friends.

This morning it was POURING rain here in NYC.  I had plans to be at the gym before work.  I packed up my bags, put on my rain gear and sloshed through puddles on my way to the gym, quickly realizing that the rain was already IN my boots, soaking through every layer of my clothing and my umbrella was serving as little more than a lightning stick.  When I arrived at the gym, my fingerprint wouldn’t register at check-in because water was pouring out the cuffs of my raincoat sleeves.  It’s funny that I considered this a problem because about 1 second later I discovered a far greater problem, I’d worn my rain/snow boots and FORGOT my sneakers!

There was no chance to run home and get my sneakers, workout and make it to work on time, even if I skipped a shower (EWWWWW).  Some quick thinking and a bunch of questions later, a decision was made.  I believe strongly in commitments.  I believe in having goals.  I believe in ME (even if I don’t feel that confident all the time). My only regret is that I lacked a cape.  Enjoy this one folks!

Yes, my boots are BLUE.

Yes, my boots are BLUE.

 

Snorkeling Pump – Where The Pump Are You?

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Pump snorkelA few items about this photo:

  1. I actually remembered not to smile (breaks the seal on the face mask and it fills with water otherwise.  My eyes and nose were drowning in a few of the pics).
  2. My pump and I did well snorkeling although I was quite cold (wetsuit shirt was nice, wetsuit pants would have been nice as well).
  3. I travel with a back-up pump (which was back at the hotel).
  4. I had 2 syringes and a vial of insulin with me on the boat.
  5. I had lots of reasons for choosing my pump.  One of the main ones is so I can do stuff like this.  I don’t like leaving my pump behind, in this case, with strangers on a boat.  My pump is a thrill seeker.  He insisted on snorkeling.  Who was I to say no?
  6. Snorkeling (well swimming) drops my bg like nobody’s business (OK it’s none of your business but I stayed in the 130-80 range the whole time).  Temporary basal rates are effing awesome.
  7. Under bolusing (majorly) for lunch was unnecessary.  Lesson learned when I returned from second round of snorkeling.
  8. Having snorkeling dreams for days (well nights) after snorkeling is most excellent.
  9. My Dexcom did well in the Pacific ocean as well and picked up my bg as I approached the boat.  Not bad G4, not bad at all.
  10. I believe in tons of Ziplock baggies.
  11. Diabetes may slow me down a bit every once in a while.  It does NOT stop me.
  12. I may not be Aquaman but I may respond to Aqua-Robot-Lady.

Photo Week in Review 2/11/13

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review

From top left: There was a day this week that the Dexcom graph looked THAT nice.  100 seems like a pretty special number, worthy of Photo of the Week.

This is a pic of what a diabetes headache looks like.  At one point towards the end of that graph I was on a very crowded subway at rush hour.  I could feel something vibrating in my front pocket and something also vibrating on the back of my waistband.  My winter coat is long, zipped up,  and there was no room to move (plus I’m paranoid of losing my Dex on the subway).  When I got to my stop and had a chance to look, the Dexcom was alarming with a Double Arrow down at 137.  My pump on my back waistband was alarming because the low battery had turned to “your battery is DEAD”.  Yikes!  I drank an entire bottle of cranberry juice in line at the bodega and luckily had an extra lithium battery in my purse.  A very wicked headache indeed. A few hours later I was crashing again.  Ugh.

That baby carrot came out of the bag that way, last night (doggie snack time).  It seemed appropriate as it was Valentine’s Day.

When my Valentine’s Day plans got canceled, I decided it was time to be brave.  I did my first site insertion in my (sort of) back area.  It’s only taken me almost 13 years of pumping and a few months of considering this spot to finally just do it.  Truth be told, I don’t like it.  I’m wearing ridiculously low jeans today because the site placement is just in-the-way.  It annoyed me multiple times in the gym this morning. The site itself isn’t absorbing any better and in my opinion, the absorption seems better on my upper tummy.  Also, I highly dislike this photo.  I am as pale as Casper and definitely need to spend more time in the gym before my vacation!  Next back site, I think I’ll try lower, more at the top of my butt.

Happy Friday! xo

 

Diabetes Art Day 2013

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Thanks to Diabetes Art Day 2012, I expanded my designs for a OneTouch Ultra cast resin ring, to a series of used test strip rings and then OneTouch Ultra bangle bracelets.   In December I discovered my health insurance covered the Verio IQ meter (and those gorgeous gold and silver test strips have jewelry-potential written all over them plus the meter lights up in the dark).  I’ve now completed one necklace, cast using the plastic insert that held my Animas Ping pump securely in it’s shipping container (One man’s trash is another woman’s treasure right?).

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Some photos of my test strip designs were used by OneTouch on their Facebook page for their coverage of Diabetes Art Day 2012 which was pretty cool.  There were people who commented the designs were ugly (I agreed, diabetes can be a really ugly disease) and people who actually thought I was wasting “good” test strips even though I pointed out that they were MY USED strips.  We all know the cost of test strips is daunting and we are also well aware of the amount of trash that comes with diabetes.  BG testing supplies, pump supplies, Dexcom inserters, and the packaging for all these items.

My goal with the jewelry (aside from challenging myself as a designer) is complex.  I read Diabetes Forecast’s article on Anatomy of A Test Strip and was intrigued.  I see beauty in test strips as not only a life saving device but also beauty as a product of technology, engineering and industrial design (my undergrad degree is in Industrial design and I launched a jewelry design business in 2009).

Back to my test strip jewelry goals… I have worn many of the pieces (especially the bangle bracelets on Blue Fridays).  I often find them to be a segue to conversations on diabetes much like my “blinged” Dexcom sensor was on my arm this summer.  If wearing some of my test strip designs gives me a chance to explain and educate and even bond with someone about diabetes, then great, bring it on.

I wore my Angled OneTouch Ultra ring to a T1 meet-up at my local JDRF chapter.  A woman came into the meeting, sat next to me and recognized the ring.  It was the first time someone said, “You’re Surfacefine”.  It was totally weird for me but this was the same woman who had asked about a foot issue months prior on Twitter.  I knew she lived in NYC and recommended my podiatrist (who I LOVE) and who also happens to be a fellow T1D.  We clicked immediately at the meeting and I was thrilled we got to chat in “real life”.  Way to go jewelry!

postcard

As an artist, making one-of-a-kind jewelry pieces intrigues me.  The majority of my professional life involves working in mass production.  The combination of mass produced diabetes equipment (specifically all the disposable items that have a one-time use), made into one of a kind mold and a one of a kind layered resin design fascinates me.

Since my supplies are used, I am now collecting stuff like crazy (read: I’m a hoarder x10).  The finishing work on these pieces is time intensive (which I love).  I have 4 molds I am currently pouring and utilizing used pump supplies along with test strips.  My used diabetes supplies have become my jewels (please note I still like diamonds).

As very special shout to Lee Ann Thill who started Diabetes Art Day, The Diabetes Postcard Exchange and writes The Butter Compartment.  You can read more about Lee Ann and her latest projects at her About Me .