Memories AKA My BIG Announcement – Wednesday 5/15

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

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.