Tag Archives: DBlogweek

Diabetes Blog Week – Ride On

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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.

Freaky Friday- Give Me A Break

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Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

I’m Feisty and it’s Friday.  I have thought quite a bit this question throughout the week.  In my mind, I have answered this many different ways but always come to the same conclusion, no, I would not switch T1D with another chronic disease and I’m annoyed with myself for thinking about this as much as I have.

In the past 5 years of my life, among my close friends, I have witnessed the following: a friend diagnosed, fight and BEAT the shirt out of breast cancer; a beloved friend diagnosed with cancer and three weeks later watching him take his last breath on this earth; a friend diagnosed with MS; a friend’s constant battle with debilitating depression; a friend responding VERY favorably to a Lupus treatment.  In a phrase that was often part of my Catholic upbringing, “We all have our own cross to bear”.  I believe this is true, so no, I’m not entertaining the idea of switching.

The EXACT spot I thought of SurfaceFine is across the street past the double parked van. Please notice my favorite building in the top left corner.

The EXACT spot I thought of SurfaceFine is across the street past the double parked van. Please notice my favorite building in the top left corner.

It’s been a year since I started Surfacefine.  Rarely does anyone question the name (you know, the 6 people who read it).  The name came from a moment when I was considering participating in Diabetes Blog Week (again, way to go Karen).  I woke up early to go to the gym.  I had an appointment to workout with a trainer so there was not an option to cancel.  My bg was in the high 200’s when I woke up.  For all intensive purposes we’ll just say it was 300.  I had an hour before I had to leave for my appointment.  Correction bolus taken plus a little additional rage bolus for good measure.  No ketones.  I practically drowned in my attempts to hydrate and flush my system.  As I walked to the gym, I checked my Dexcom at every intersection.  The arrow continued to angle downward.  I know it’s counteractive to workout that far out of range.  I also know I had to pay that trainer if I canceled.  I saw my neighbor on a street corner.  She  made a comment about my going to the gym and “good for you”.  As I race walked my way along, I couldn’t help but think of my attire.  There I was in my new sneakers, dressed in spandex, moisture-wicking gym clothes, hair in a messy ponytail looking the part of the committed health nut.  No one who saw me knew there was a bedazzled Dexcom sensor in my arm under my jacket, a Dexcom receiver vibrating that my blood glucose level was too high in my pocket, an insulin pump connected to my abdomen with it’s clip pulling down my pants, that I was thinking how I had put a temporary basal rate reduction into my pump soon because the exercise would drop me too much.  If I canceled, the outside world would never know it wasn’t because I was a lazy bum who over slept, the world would never “see” that my bg was too high that morning.  A morning smile to people I met or recognized on the street.  Rosy cheeks from the uphill hike through my neighborhood.  A heart pumping sugary blood through my veins while my organs worked double duty trying to flush it out my system while my body absorbed the extra jolt of insulin pouring through me.

Yes, on the surface, I’m fine.

 

 

Memories AKA My BIG Announcement – Wednesday 5/15

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I am writing these #DBlogWeek entries out of order (shocking, I know) and managed to completely miss yesterday (Tuesday’s) post.  I’ll get to it.

If you’re interested in learning more about Diabetes Blog Week, go here.  If you are interested on reading other diabetes blogger’s entries on the topic below, check THIS OUT (believe me, this will introduce you to some really great people in the #DOC and keep you very busy).

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. you or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

I’ve been mulling this question over for days.  I tend to be a look-at-the-bright-side-of-life thinker.  I thought about some of my BIG diabetes moments and how I simply don’t remember them and what a good thing THAT is.  Like when I was a little girl and had a severe hypo (unconscious and seizing) in my parent’s bathroom.  Glucagon given, the ambulance didn’t show up in time, a local police lieutenant friend of my Dad’s arrived and transported me to the hospital, sirens blazing, while I practically cut my Dad’s index finger to the bone.  My jaw had locked on my Dad’s finger as he was trying to keep me from choking to death.  Nah, that’s not the kind of stuff that defines my life.  That’s not my memory anyway.  It is a horrific memory for my parents.

The guy who almost lost a finger:

Reading is fun

What about the time in 5th grade when a school assembly was changed?  Being on Regular insulin as short acting insulin didn’t encourage schedule flexibility (but at the time, that’s as far as technology had gone).  I played the violin (terribly I might add) and orchestra practice was also changed because of the assembly change and well, you can see where this is going.  My morning snack was thrown off, I don’t recall lunch, and apparently in one of my classes, I stood up, declared I loved one of my classmates, and dropped to the floor.  My teacher tried shoving juice and food down my throat, although I was unconscious.  THAT was a bad idea.  I don’t remember any of this.  I remember the assembly and waking up the next day in the hospital and puking like crazy.  To this day, I have no idea who I declared I loved in my 5th grade class.  My Dad must have scared the sh-t out of my classmates too because no one ever told me, they never brought up what had happened, and they sent me cards.  Nope, this is not my diabetes memory, this is just a sad and scary blur.

I want this to be a good memory blog post.  A REALLY good memory.  My memory is from YESTERDAY.  Yep, less than 24 hours ago.  I hadn’t planned to mention this until everything was finalized but let’s face it, THIS keeps drowning out all my other diabetes success and failure stories in my own mind.  If you know me or have ever read my blog or seen my tweets, you know how diligently I have worked over the years with JDRF.  I am incredibly proud of my JDRF Friends and Family Team, Alecia’s Stem Cells.  I am amazed by all the places we’ve walked (NYC, Boston, LA).  I am in awe of all the people who tirelessly support our team and me.  I am grateful to my parent’s for getting involved in JDRF when I was diagnosed in 1979.

I was fortunate to attend a JDRF Research Update last month presented by the president of JDRF, Jeffrey Brewer.  I loved hearing about where the money is going, the technologies and research.  I found it energizing.  The timing couldn’t have been better as a month prior, it had been mentioned to me that I was a possible candidate for my local JDRF branch’s BOARD.  Say what?!

Jeffrey said something that has been swirling around in my head for weeks (well actually he said a lot of somethings like when he spoke about micro occlusions in pump sites that go undetected by the pump which makes PERFECT sense to me).  He talked about how the next generation of insulin pumps combined with CGM technologies are available in EVERY OTHER FIRST WORLD COUNTRY BUT OURS (oh yeah, I live in the US).  He also spoke a bit about the FDA, lobbyist, and JDRF’s involvement.  In my mind, these are the things I want to be involved in.  As much as I truly enjoy my roll as a diabetes mentor and spreading diabetes education, I believe there is a next step for me.  I want to be part of the change I wish to see in the world.

So yesterday I had lunch with the head of the nominating committee at my local JDRF.  We had a lot in common and I didn’t hold back my opinions on my local chapter’s direction and off the cuff ideas for increasing involvement and community awareness.  I am, by nature, a do-er.  I am a planner.  I love having goals.  I’m also pretty nerdy and creative.

This morning I received all the forms I need to fill-out and the invitation to the meeting where my new role as a Board member will be announced in June.  I cried when I called my parents yesterday to tell them.  There have been a few instances in my life where I truly felt I had a calling to do something.  This happens to be one of those moments in my life and it happens to be my diabetes memory.

 

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.

 

D-Blog Week Day 3- One Thing I Could Do Better

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Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Oy vey. This morning I came up with at least 6 different answers to this question (had I worked-out longer this AM I am sure I could have easily doubled or tripled that number).  Hmmmm.  Just one thing?  The first one that comes to mind is combining my almost 33 years diabetes knowledge with the information I’ve learned from 4+ months with my beloved Dexcom.  The most obvious one for me is, “HEY if you’re going to eat like the winning hippo in a game of Hungry Hippo, bolus earlier!” 

My first few weeks with my buddy Dex (Dexcom is the name for more formal occasions) taught me that my BG shoots up right after a meal (often) and returns to my target range later.  At first, I felt compelled to correct those post meal highs.  Dex beeping at me that I was too high was like a flashback to my high school Spanish class and Senora Bogan constantly yelling at me to “SILENCIO POR FAVOR!!!”.  Correcting those Dex beeps would lead me to crash later and then eat glucose tablets like they were M &Ms (what can I say, M&Ms are quite tasty).

So after the first few weeks I kinda, sorta started to chill-out about the corrections (I fought myself NOT to do a correction) but knew that wasn’t the answer.  My blood shouldn’t skyrocket in order to comeback to normal range.  I had to face it, I must bolus sooner and as much as I hate admitting it, I need to combo bolus sometimes too.  This boils down to organization and a little more planning on my part.  Ugh.  I’ve admitted it and now I have to do it. Gracias!