Category Archives: Diabetes Notes

Diabetes Thoughts and Notes

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  • I love this idea from Chris over at A Consequence of Hypoglycemia Seriously, how could you not like this idea? #DBlogCheck ! Do this. It’s a great Do Good, Feel Good to start off the week!

2Dexcom

  • I am back in business (see previous post). My broken slidy door Dexcom needs to be sent back ASAP, but for the weekend, I was monitored by 2 glorious blue G4s. It was perfect timing for #BlueFridays (and some pretty nice pre-lunch BGs from Friday too).
Training starts when?

Training starts when?

  • JDRF is involved in the Disney Marathon (and 1/2 marathon, 5K and 10K). It’s actually called the Disney Princess Marathon. I’m not going to hide it. This intrigues me (heck, I’ve already got the ears right? A friend recently got them for me and my name is even embroidered on the back. Oo-la-la). I would have to get rid of the shooting pain that keeps happening in my left knee when I run. I’d also need to actually train. Going to Disney World to run a 5K would be funny. Going to Disney World to run a 5K AND raise money for JDRF? Sounds kind of awesome (and still funny).
  • I’m a big fan of Katy’s over BigFoot Child Have Diabetes. As someone who did not go to the FFL conference, I enjoyed her recap of all the events and activities (she also cracks me up).
  • Am I the only one who thinks this looks like some sort of vampire call signal? I watch too much True Blood I guess.Vampire Call Signal
  • Are you going to be in NYC on Sunday, September 29th? Want a GORGEOUS view of NYC from the Brooklyn Bridge? How about getting a little exercise? Come join Alecia’s Stem Cells! Our goal is simple, to assist JDRF in it’s mission: to find a CURE for diabetes and its complications through the support of RESEARCH! If you’d like more information on ASC, we’re on Facebook too.
  • Also, if your looking for some in real life D bonding, JDRF NYC hosts a New York Metro Region group for adults living with or new to type 1 diabetes (T1D). The meetings are monthly at the NYC office “to greet and chat with one another in a safe and supportive environment”. Last week we had fun presentations from John at ShugaTrak and Caitlin at TypeTanks and then some of us went out afterward. If you’d like more info, please check-out the JDRF Metro NYC T1D Adult Group page.
  • And finally I am off to my diabetes eye specialist. I was supposed to go in May. Life got in the way of my remembering to make that appointment. My doctor’s office treats a D celebrity. My doctor has done amazing things for my peepers. I have tons of reasons not to be scared. I’m scared.

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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.

 

 

Peace

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I read this yesterday and again this morning. Since the author is unknown, I may claim I wrote it. A little food for thought.

“Peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart.” -unknown

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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.

What’s coming?

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A week from tomorrow is my 34th Diaversary.  I need to organize my thoughts for my diaversary post as I really liked the one I wrote last year.  I’ve been through a lot in the past few months (well especially last few weeks) and I’m a little concerned what the tone of diaversary post may be.  I’m incredibly bummed that I will be away on a business trip on my diaversary and so doing something nice for myself (i.e. dinner with family or friends) is not going to happen.  Maybe I can postpone celebrating 6/19?  No, I’m alive.  That’s worth celebrating even if it’s running on a hotel treadmill.

As you may know, I’ve written 2 posts recently involving my rain boots.  Last night, I got caught in a down pour and decided to jump in every puddle I saw along the way.  Boots, a dress, a raincoat and a horrible dome shaped umbrella.  I toned the jumping down in the really dirty puddles, and around people who would get splashed but at one point I gave up on the umbrella, closed it up and just kept going.  It felt good.  I was soaked.

Early this morning, I saw this quote:

Life isn’t about waiting for the storm to pass.  Its about learning to dance in the rain.

Right after that, my Dexcom was beeping that I was over 180.  I’ve been running too high a lot recently. A few basal tweaks, a ton of exercise and nothing seems to be budging much.  I looked at Dex, but I couldn’t get the screen to change.  It was frozen on HIGH over 180.  I got a little worried, figured how to shut it down but then I couldn’t get it back on!  Trying and waiting, waiting and trying.

Then this:

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Dexcom- you may have been talking about yourself and that you’re back in action but I’m choosing to believe you were talking about me.  System Check.  Passed.  Next time, I hope to see: System Check.  Awesome.

I have a lot to do before then.  And with that, I’m off to the doctor.

XO

In 20 Years

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I recently read that the quote below can NOT be verified as a quote from Mark Twain.  I don’t much care who said it, I just like it.

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”

Mark Twain (1835-1910);


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.

 

Relearn, Repeat

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Today at work, I had a snack around 11:30 am… Pretzel Chips, buffalo flavored (I worked-out before work so don’t judge, and hey, I was hungry).  When Dex beeped at 12:30 pm, displaying it’s non-subtle demand for blood (that blood drop graphic is intense), I saw that Dex showed a bg of 87 and an angle down arrow (Uht-oh), I quickly checked my blood on the meter.  This is what I saw:

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What the heck?  My right hand “looked” clean.  I re-checked, but washed a fingertip on my left hand.  Note the time:

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So, my lesson of the day is this: There is a reason you’re supposed to clean off your fingertip before a blood test.  Also, Buffalo Pretzel Chips may look orangey BUT even if you can’t see it, there may some buffalo goodness sticking to you.  That sounds creepy.  Sorry.  You get the point.  Almost 34 years as a T1D.  Relearned hand-washing today.