Thursday, September 30, 2010

Oven Mitts

During the summer, we do a lot of cooking on the grill.  Okay, by “we” I mean Pete.  I don’t actually step near the grill.  Although I do prep the food so that makes it a “we” effort, right?  I usually wrap our vegetables in foil packets in an attempt to have Pete cook our entire dinner outside on the grill during those sweltering days of summer.  When we try to unwrap them, hot off the grill, Pete always complains about the foil burning his fingers.  I usually call him a wimp and unwrap them with my bare hands.

The other day, we went to Starbucks.  I grabbed a seat to check my blood sugar while Pete ordered our coffees.  As he brought them over, he said they were so hot they were burning him and went off to get us those thermal sleeve thingies.  Call me pig-headed, but I had to see how hot the paper coffee cup really was.  And it wasn’t hot at all.  Wimp!!


Cue the guilt-music.  Now re-read the paragraph above.  Especially the line about checking my blood sugar.  You see, I test between 8 and 12 times every day.  I’ve realized that the scar tissue I’ve developed on my poor over-pricked fingers are my permanent little oven-mitts.  And the perhaps my husband isn't such a wimp after all.  Sorry, Sweetpea!

Tuesday, September 28, 2010

What 44 in the Grocery Store Looks Like . . .

It isn’t uncommon for me to go low when I grocery shop.  Usually I'm okay.  Yesterday?  Not so much.  Yesterday I could barely fight back the tears that wanted to burst forth.  I did fight the tears, but not the urge to load my cart with the junk food in the picture.  And that completely humiliates me.

I really hate grocery shopping.

Friday, September 24, 2010

Breaking out of the D-OC Bubble . . .

I love the D-OC Bubble.  I love our happy place where I can say “I’m so high” and nobody thinks I'm a stoner.  I love using short-hand d-lingo like CGM and SWAG and knowing I don’t need to explain what the heck I’m talking about.

But it is also great to break out of the D-OC Bubble and meet health activists who are advocating for other conditions.  So I was very excited to make my way back up to Boston last week for the second WEGO Health Activist Meet-up.


I blogged about the first one back in April, and the format of last week’s meet-up was the same.  We introduced ourselves with three Twitter #hashtags.  This time mine were #owneroftheworldscutestcat #totallyobsesssedwithknittingandyarn and #OMGthatgirlisSOlongwinded.  (But yes, I dropped the #shy #hashtag!)  We had time to mingle and I got to chat with some of the people I met in April and meet some new activists who attended.  I met activists for allergies, cancer, addiction recovery, stress resources and more.  But I wasn’t completely outside of the D-OC Bubble, because Jeff was also in attendance!  It was awesome to finally get to meet him in person - even if he did “scold” me about the racket my meter made during one of the discussions.


Once again, it was difficult to pick a break-out session because all three sounded so valuable.  In the end I chose “Using Multimedia as a Health Activist”, fabulously presented by Carissa.  I came away with some great tips and ideas from Carissa and the other activists who attended the session.  One important tip was to remember to capture photos / videos / audio / etc. to spark and enhance topics you post about.  I put that tip to good use right away as I snapped a (sorry so blurry) picture of Paul and Jeff presenting wrap-ups of two of the sessions.


Apparently the cheese covered flat-bread snacks also inspired me because I snapped a picture of those too.  Yum!


To be honest, I had fought a long string of lows since the night before, followed by a high that left me feeling cruddy upon my arrival in Boston that afternoon.  So I was particularly thrilled to see a 111 on my meter and feel free to indulge in a slice of the flat-bread.

I'm very fortunate to live close enough to Boston to attend these WEGO events.  I learn so much from the people I meet and leave feeling inspired and ready to do more!  The D-OC Bubble is a great place to be.  But don’t forget to interact and share with health activists from other fields as well.  Our conditions may be very different but so many of our concerns, needs and goals are very similar.  I firmly believe we can all learn so much from each other.

** You can read more about the meet-up on the WEGO Health Blog.

Thursday, September 23, 2010

It’s Complicated . . .

I’ve had diabetes for a long time.  I often say I feel lucky and proud to have come this far without any complications.  Or sometimes I say with almost no complications.  Because I’m not really sure how to classify myself.

For the most part, everything is fine.  Everything except my eyes.  A couple of years ago, for the first time ever, my eye doctor found a tiny bleed.  Six months later, it was gone but a new one had appeared in the other eye.  Every six months I go in for another dilation exam.  Every six months, the last tiny bleed has cleared up but a new tiny bleed is found.

My latest six month exam happened a few days ago.  This time the tiny bleed from six months ago has remained.  It’s way off in the peripheral and so small that Dr. C had to look very very hard to find it.  No other bleeds have cropped up.  Dr. C said this is amazing for someone who has been diabetic as long as I have.  She also thinks it may be time to go back to annual dilation exams instead of bi-annual.  We’ll do one more exam in six months, but if things continue to not-progress I won’t have to come back for a year.

Happy news indeed.  But now where do I stand in complication status?  I have small leaks in the vessels of my eyes.  Extremely small leaks that are not affecting my vision at all.  So how do I classify myself?  As far as I’m concerned, I do not have retinopathy.  I still think of myself as being complication free.  But is that actually true?  Or at this stage of the game, does it even matter if one tiny bleed is considered a complication or not?

Tuesday, September 21, 2010

Highlights of a conference . . . .

Two Saturdays ago, Pete and I got up really really early (or wicked early, as they say in Rhode Island) and drove up to Providence for the Taking Control of Your Diabetes conference.  I’ve tried over and over again to figure out how to put the experience into words.  I’ve drafted and redrafted post after post.  But I just can’t get it right.  Luckily, Stacey and Kerri both wrote great and timely posts about the day so you should probably start by checking those out.  As for me?  I think it’s time to resort to a bullet list of the people and things that stand out the most . . .
  • Dr. Steve Edelman and Dr. William Polonsky:  They both presented during the morning sessions.  They also co-moderated the afternoon break-out session I chose.  They have a delightful was of getting their point across while making you laugh and keeping you thoroughly entertained.
  • The lunchtime address:  Urban Miyares, a Vietnam vet whose courage and positive outlook are completely indescribable, simply blew us away.
  • Charlie Kimball:  His closing address drove home (at over 100 MPH, hahaha) the point that diabetes doesn’t have to keep us for doing anything in life.  We were also lucky enough to have lunch with him.  Pete especially enjoyed the video on Charlie's phone of his crash from few weeks earlier.  (What is it with boys and crashes?  Trust me, the video was cringe-inducing!!)
    Charlie Kimball
  • Diabetes Celebrities: This was the term the TCOYD photographer came up with for the picture below, and she was spot on!  I was thrilled to meet Kelly Close, of diaTribe and Close Concerns.  And I was equally thrilled to catch up with my celebrity-friends Kerri and Bernard.
    Celebs Kelly Kerri Bernard
  • D-OC Pals:  Sessions and stars are great, but spending time with some of my favorite D-OC members is even better.  We got to hang with our friends Kerri, Stacey, Tina, Bernard and Val.  And I finally got to meet Ashley and her dad, and Faye and her husband.  That alone made the 16 hour day worth it!!
So this is pretty lame for a recap, right?  But basically, if a TCOYD conference comes to your area, I say GO!!  Go for the incredible sessions and speeches.  Go for the information and potential swag in the expo hall.  And by all means, go for the experience of spending a day surrounded by others who live with diabetes each and every day too.  I hear they’ll be hitting Albany, NY in 2011 . . . . and I’m already planning to go!

Wednesday, September 15, 2010

What you THINK you see . . .

This week is Invisible Chronic Illness Awareness Week.  Those in the know might be able to spot a diabetic at 50 paces when they spy an insulin pump or a CGM sensor or see a finger stick happening.  But for the most part, those things are easily overlooked (or sometimes consciously hidden) and diabetes is a pretty invisible illness.  And sometimes I wonder what people THINK they see when they look at me . . . .

You might see a girl who is just hanging out alone in her car.  It must seem kind of odd that I’m just listening to the radio with no apparent place to go.  In reality, I’m quite frustrated because I need to get my groceries home and into the refrigerator, but can’t drive until my low blood sugar comes up.

I might be at the diner for breakfast and you hear me ordering eggs with a grimace on my face as my husband orders pancakes. You probably are a bit judgmental, wondering why I don’t just order the pancakes if I want them so bad. But I can’t order them, because my current blood sugar is too high to even think about ordering any carbohydrates - especially a minefield like pancakes.

You might see me at my laptop, playing stupid games on my computer.  You probably think I have way too much time on my hands.  Actually, I have urgent emails to answer and some blog posts I need to write, but another low blood sugar has my mind so fuzzy that I can't work on those right now.

Perhaps you’ve seen me at a speech or performance (or worse yet, a funeral) and glared at me when my beeper or Smartphone went off.  I’m sure you thought it was rude that I didn’t switch them to silent out of respect.  Believe me, I was very embarrassed that my pump beeped at the worst moment possible and that I needed to test my blood sugar.

Remember, all illnesses are not visible.  What you think you are seeing is often not the case.  And a little bit of compassion can go a long long way.

Thursday, September 9, 2010

Higher isn’t always bad . . .

For as long as I can remember, I’ve been working and working (and working) to get my A1C lower.  Lower has always been the goal.  Higher was always bad.

Until this week.  On Tuesday I had my endo appointment.

The waiting room at my endo's office - as part of the Waiting with Diabetes project.

I always hold my breath as we go over my lab results.  I’m worried for my liver and kidneys.  But most of all, I’m worried about what that A1C number will be.  Of course, the A1C is always at the end of the report - thanks a lot, lab-report-guys.

So, we went though each and every item on the lab report.  What the recommended range for each item is and where my numbers fall.  (Yes, my endo take the time to explain each item.  Love him!!)  Everything was in the AWESOME range (my words, not my endo’s, but whatever).  Then we got to the A1C.  And it has gone up . . . . just by .3 . . . but still up.  And higher is always bad, right?

Well, not always.  This time both my endo and I were actually happy to see a rise in my A1C.  For the past six months, my A1C has been 5.9.  A great number, yes, but a number that was the result of way too many scary-lows.  With my new Revel pump and the predictive alerts for the CGM, I’m catching more lows before they hit the scary-low range.  (No, not all, but more . . . )  So we were both thrilled that my A1C has risen to 6.2.

I've spent so many years, decades even, struggling for a lower A1C.  Celebrating a higher one feels crazy.  But then again, I never said I wasn’t crazy!!

Wednesday, September 1, 2010

Diabetes = Human Voodoo Doll

Here is my contribution to Diabetes Art Day.  If you click the picture, you can read some notes about the supplies I used to create my voodoo self portrait.