Save The Date . . . .

It’s hard to believe that tomorrow is already the first day of April.  (Especially since I’m looking out my window right  now to see flakes wafting down and the ground covered in white . . . . again . . .  even though all our snow had finally melted.  I’m not happy with this turn of events.  But I digress . . . )  Anyway, it’s true.  Spring is here (or so they tell me) and April starts tomorrow.  Which means that Diabetes Blog Week is coming up FAST! 

I’ve gotten a few emails asking when Diabetes Blog Week will be held, so here is your official Save The Date.  The 5th Annual (OMG, five??) Diabetes Blog Week will be held May 12th - 18th.  Sign ups will start the week before, Monday, May 5th.  (Olé!!)  As in the past, the blog topics for the week will also be posted that day.

As each year goes by, coming up with fresh topics becomes more challenging.  So last year, I put out a call for topic suggestions.  I loved that because 1) you guys have much better ideas than I do and 2) I’ve always wanted DBlog Week to be by the DOC as well as for the DOC, so having the DOC help come up with topics seems like a perfect fit.  So, I'm asking for your help again.  What should we blog about this year?  Please email your suggestions to me at DBlogWeek@bittersweetdiabetes.com.

I’m hoping with your help we can make our 5th Diabetes Blog Week the biggest and bestest and funnest (and most grammatically inaccurate) one yet!!  (Just kidding . . .  I promise . . .  no more made up words.)

Good Luck with That . . . .

During our final dinner at JDRF Government Day last week Jeffery Brewer gave a speech that quickly brought tears to my eyes.  Parts of it have continued to run through my mind all week.  I know I don’t have this down word for word, but I wanted to share the gist what he said.

Imagine your doctor diagnoses you with chronic illness.  He tells you “We have this medicine that you must take.  However, if you take too much it could be fatal.  On the other hand, taking too  little can, over time, lead to some very serious complications.  Also the amount you should take depends on what you are eating.  Your dose is also effected by factors such as stress, how much sleep you got, if you are getting sick, and the amount of physical activity you’ve done.  Further  more, you can eat the same things at the same times with the same amount of activity and take the same dose two days in a row, and the results can be completely different.  So . . . . good luck with that.”

If you are or care for a person with diabetes, you know that this is our life.  But I find I don’t really stop and think about it all that often.  When I go back and reread that paragraph I just typed, it sounds completely preposterous.  And yet, this is our lives with diabetes.  This is how hard we work every day, and how uncertain and fragile our management really is.  I’m not sure we give ourselves enough credit for all we do to stay healthy.  So today, I want to give you a huge pat on the back and tell you that YOU ROCK!

#JDRFGovDay Highs and Lows

I always struggle to write up event recaps because I'm just not good at them.  I tend to draw a blank on what words to use other than “it was so awesome, you had to be there to understand”.  Great, huh?  So this time I’ll try the old bulleted list to attempt to describe my four days at JDRF Advocacy Government Day, where I joined about 150 other Advocacy Team Chairs and advocates from JDRF chapters around the country to bring our message to Capital Hill. 

• HIGH:  Meeting with Senator Murphy and health staff from the offices of our Connecticut representatives to thank them for their continued support and to urge them to help ensure the Special Diabetes Program is renewed.  We explained how critical the $150 million dollars provided by the SDP to the NIH is for diabetes research.LOW:  A longer than expected walk to our very first meeting of the day, which brought on one of the lowest lows I’ve had in a very long time.  It left me feeling like I had been run over by a truck for the rest of the day.  But I did what any of us would do - sucked it up and powered through.  PWDs are STRONG!!  (Well, okay, I whined a lot too.  Maybe I'm not that strong.)
  

• HIGH:  Walking into Congressman Courtney’s office and having his wonderful Health Aide not only recognize me on sight, but notice that  my hair was different and compliment me on it!  (The pictures don’t show it well, but I dyed it red last week.)  Knowing she remembers me and our previous meetings means we can jump right in with less background information and more important details each time we meet.LOW:  During our meeting my CGM alarm went off a billion times due the a major rebound from my earlier 28.  (BEEP BEEP BEEP HIGH PREDICTED!!!  BEEP BEEP BEEP RISE RATE!!  BEEP BEEP BEEP HIGH!!!  BEEP BEEP BEEP OMG YOU ARE SO HIGH!!!)
  HIGH: Having a real example of life with diabetes to show the aide.

• HIGH: During the final dinner we saw a cool new “something” that is hopefully headed for human clinical trials this year.LOW:  It’s proprietary so I can’t show you or tell you anything more about it.  But trust me, it has very awesome potential!!

• HIGH: Finally banishing some of my shyness and heading to the bar with great new friends.
  Left to Right: Marcus, Jonathan, Lisa, Deb and Ann.
  LOW:  Major sleep deprivation.  (Totally worth it though!!)

• HIGH:  Reconnecting with old friends, some of which I met IRL for the first time. Clockwise from top:  Meghann; Kathy; Jeanne and Flat Robby; Beth; and Mellissa and JuicyMama.
  LOW:  Saying good-bye to them all when it was time to head home.

• HIGH:  Knowing that I’m doing something to help make life better for everyone with Type 1 diabetes.HIGH: Letting you know how important it is for you to use your voice too!  Please sign up and become an advocate - it’s quick, easy and painless!  You’ll get a few action alerts through out the year with easy detailed instructions to email or call your representative and let them know how important diabetes funding is.  Please please please add your voice to our ranks here.
  LOW: This time there isn't one. Everybody wins!!

A Beautiful(?) Day in the Neighborhood . . . .

About an hour ago I was on the phone with Pete when suddenly we got disconnected.  My t.v. and internet were down too, so I assumed it was a cable provider outage due to sun spots.  (I know, sounds crazy but it’s a real thing.  I used to work for a cable company and I swear it’s true!!)  I decided to go dry my hair but the blow dryer wouldn’t work.  Crap, it wasn’t a cable outage, it was a power outage!

I saw my neighbor outside so I went (into the 20 degree weather with my hair in a wet towel) to ask if he’d lost power too.  He had, and another neighbor came out to say he had just reported the outage. 

Photo Credit

And then the first neighbor said “Hey, I have another question for you.  You have diabetes, right?  My wife has diabetes too and she brought all her diabetes levels down with okra.”

Me: “Good for her.  But she had Type 2, which means her body doesn’t properly use the insulin she makes.  (An oversimplification, I know, but I was trying to start somewhere.)  I have Type 1, which means I don’t make any insulin at all.”

Neighbor:  “Type 1, Type 2, it doesn’t matter.  Do you know what okra is?”

Me:  “Yes.  I like it fried.  Although that isn’t very healthy.”

Neighbor:  “Well, she brought all her diabetes levels down with okra.  Just chop it up and put it in water for eight hours and then drink it.”

Me:  “I'm glad for her, but I don’t think okra will work for me.  I have Type 1, my body doesn't make any insulin.”

Neighbor:  “It doesn’t matter.  She has friends with diabetes and she turned them on to the okra.  A few of them have that pump thing, so that means their diabetes is really bad.  And the okra brought all of their diabetes levels down too.  You just have to drink it twice a day.”

I know he doesn’t know a lot about diabetes.  And I know he’s one of those people who always thinks he knows everything, on every subject.  So today, as I stood out there freezing, I decided it wasn’t worth the advocacy effort to attempt any more explanations.  And just then, the second neighbor yelled from his house the the power was back.  I thanked the first neighbor and told him I'd look into the okra thing (yes, I flat out lied) and came back inside.

I feel bad that I didn’t do a better job of explaining to him.  I feel scared for him and his wife, because I don’t think they really understand diabetes.  And I’m disappointed in myself that I didn’t try harder.  But some days, I just don’t have it in me.

A Kernel of Truth

I really think that the things that are most upsetting have a small kernel of truth to them.  So while I’m sure my opinion will be wildly unpopular and set me up for a blizzard of hatred, I have to say I think Miss Manners was a teeny bit right.

Blood is kind of gross.  It’s not normal to puncture my finger and bleed in public.  Does that mean I’ll stop doing it?  No, it doesn’t.  Unfortunately it is what I need to do to take care of myself.  But does that mean it isn’t valid for people to feel uncomfortable at the sight of blood?  Nope.

Don't get me wrong, I certainly won’t go to the restroom to check my blood sugar.  But I can be more “surreptitious” or discreet with my blood, especial while dining or in close confines.  Not because I think it means I should be ashamed of my chronic illness.  But because I think it’s right to be considerate of those around me, just as I would hope they’d be considerate of me.

I’m not angry at Miss Manners.  I’m angry at diabetes for desensitizing me to my own public bloodletting.

Blue Friday - Pump Style!!

If you’re a Medtronic pumper you might be interested to know they have added a new accessory - a line of silicone pump skins.  As a member of a new MiniMed Ambassador program that’s in the works I received a coupon for a free silicone skin.  Of course, I chose blue so  my pump can participate in Blue Fridays!


I really love my purple pump, but it’s fun to have the option to dress it up in blue every Friday.  Unfortunately the skins aren’t meant to offer any extra protection to clumsy cyborgs like me who have to work really hard not to drop my robot organs - but they sure are fun!

** My Medtronic disclosure can be found here. **

Breakfast Hates Me . . . .

Lately I’m seeing a huge post-breakfast spike every day.


I can eat foods that never spiked me before, and still I spike.  I can pre-bolus earlier than I ever have before, and I still spike.  I can eat less than I usually do, and still I spike.  It’s getting really aggravating.  So I’m looking for your best breakfast tips!  What do you eat for breakfast?  What is your breakfast bolus strategy?  Have your breakfast blood sugars suddenly changed for no obvious reason, and what did you do to fix it?  Help!!

Flowers and Chocolates and Insulin . . . .

Valentine’s Day is coming up quick.  I’m definitely a hopeless romantic so I’ve always loved Valentine’s Day, even when I was single.  Pete and I usually celebrate with flowers (for me) and chocolates (for both of us) and a fun dinner out.

I really love flowers - my grandparents were florists and flowers make my day.  But honestly, I don’t really NEED flowers.  And as much as I consider chocolate a basic food group, neither Pete nor I really NEED chocolate.  The best part of our dinner out is just sitting down together and spending time with each other.  But what if that wasn’t possible? 

What if Pete and I couldn’t spend time together because I was no longer here?  What if I died because I couldn’t get the insulin that I, as a Type 1 diabetic, needed to stay alive?  It’s almost impossible for me to imagine.  Over the years I’ve had to fight to get the number of test strips I need, and to get a CGM, and a very long time ago I had to fight to get syringes covered by my insurance.  But I never, ever, in 34+ years with diabetes, had to fight to get insulin.  It’s probably something I just take for granted, those little vials of life in my refrigerator.  And that makes me very lucky.

This year I’m giving back to those who aren’t as lucky.  I have my husband and I have insulin . . . . there isn’t much else I need to feel loved.  So Pete and I are putting our Valentine’s money where it is needed - the Spare A Rose campaign. 


For every $5 Pete and I donate, or for the cost of each rose or a few chocolates, we are providing one months worth of insulin for a child who would otherwise probably die.  I can’t think of a better way to spread the love.  And I urge you to join me and #sparearose or two and save a life right now.

http://SpareARose.org
www.SpareARose.org/give