Thankful but still Needing Better . . . .

This month the DCAF blog carnival revisits a very important subject - the accuracy of our test strips.  We imagine we are speaking at a Diabetes Technology Society meeting and are asked what our comment would be on meter accuracy at the Diabetes Technology Society meeting?

This isn’t a question I take lightly and I’ve put a lot of thought into my answer.  I think it would be important to start by expressing my thankfulness that diabetes technology has progressed greatly since I was diagnosed.  I remember well the days of urine testing instead of blood sugar testing, and of one insulin injection per day followed by a strict exchange diet.  It was tough, and things today are better than they were in 1979.

That said, better than 34 years ago is not always good enough.  Insulin today has improved and is more powerful, but that also makes it more dangerous.  I need to know exactly what my blood sugar is because proper dosing of my insulin depends on it. And improper dosing means hypoglycemia or hyperglycemia - both of which are dangerous and can bring deadly consequences.  Today's test strips often give errors, sometimes more than the 20% accuracy standard allowed.  Even an incorrect result within 20% can screw up my dosing, and over 20% can really muck things up.

I'm glad our technologies are better than they were more than 3 decades ago.  However, diabetes is still really hard.  Yes, it’s hard in different ways than it was in the late ‘70s but it is still really hard.  We still need better.  Our lives depend on it.

This post is my October entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/09/october-dsma-blog-carnival-3/

Wordless Wednesday - Renovation

Good bye portable dishwasher and cheap cabinets!!

 I spent the last two days packing up my entire kitchen in preparation for the big kitchen renovation, which starts today!  I’m stressed and busy, but mostly I’m very excited!  We’ll see how diabetes management goes during this very out of the ordinary (for my life, anyway) experience.

Yay for TSA

This morning when I got up it was still pitch black and the sun wouldn't wake for a couple of hours. Pete and I waded through barely moving traffic and he dropped me off at the airport with just enough time to catch my flight. (More about where I am and why as soon as I get the go-ahead to share the project.)

No sun, but plenty of traffic.

As if the barely crawling traffic wasn't enough to stress me out, I approached the TSA bins at the security line and could see a full body scanner ahead. *sigh* When I got to the front of the line I politely informed the TSA agent that I was wearing a medical device that can't go through the full body scanner and I'd like to request a pat-down. I was waiting for the response I've always gotten in the past -assurance that it's fine to go through the scanner and that others with insulin pumps do it all the time. I've even been told once that "the pump companies just say the full body scanners can cause damage because they want to be able to void the warranty". I always politely stick to my guns and continue to request the pat-down, and eventually they comply.

I'm thrilled to say this experience was different. I was immediately shown to the waiting area where someone met me for the pat-down. No resistance, no arguing, no trouble at all. It felt much like I would expect the experience to go if I had contacted TSA Cares before my trip. (I didn't do so because the website said to call 72 hours before your flight and this was a very last minute trip.) My pat-down was thorough but respectful, and after a quick swab of my hands I was on my way.

Had my experience been less than stellar, I certainly would have blogged about it. So since it was wonderful I felt a responsibly to write about it too. Thank you to the TSA Agents at JFK this morning for making my security experience go smoothly and just as I hoped it would.

Wordless Wednesday - Not Quite . . . .

I’m pretty sure this 295 isn’t what quite what my endo had in mind when we discussed reigning in those frequent lows . . . .

Delicate Balance . . . . .

Friday morning I headed to my endo appointment.  I have a really great endo, but I’m still a bundle of nerves as my appointment approaches.  What if I’m not doing as well as I think I am?  What if something comes back floopy in my labs?  Even though my appointments have been going great for a while now, I find myself always waiting for the day I get a really bad surprise.  And I’ve decided I’m okay with the nerves, because it means I still care.  And caring about diabetes is a big part of the battle.

I love the bright open waiting room at my endo’s office.

So there I was, weight and blood pressure taken (both are higher than I’d like) and pump information uploaded.  Paperwork for a new 530G with Enlite filled out.  A new script for my blood pressure medication electronically sent.  We turned to my labs results and pump reports.  Liver and kidney tests are perfect.  Cholesterol is excellent.  Vitamin D is finally in a good range.  And then . . . . . my A1C . . . ..  hmmmmmm.  We take a look at the blood sugar graphs from the pump and CGM.  Hmmmmmmm.  Mostly good.  We discuss some of the big spikes and both agree that they don’t warrant any basal changes - just some tighter carb counting and acknowledgement that hormones throw my overnight numbers out of whack for a few days every month.  We agree that those highs aren’t too much of a problem.  The real concern during this appointment is the lows.  Lots of lows, especially between 2 a.m. and 4 a.m.

This all leads to a sentence I never ever though I’d type.  My A1C is too low.  Sounds impossible, right?  Sounds like a fantasy.  It’s not.  After decades of beating myself up for having a high A1C, of working so hard to bring it down and feeling like I always failed, I now have to worry because it’s too low.  And it feels like just as big a failure as my too high A1Cs.  It means I spend way too much time with hypoglycemic blood sugars.  It means my health is at risk - perhaps not from the complications I was threatened with during those years of highs, but with the fact that lows can stress my body, specifically my heart.

So here I go again.  Instead of working to bring down the highs, I need to focus on avoiding lows.  I’ll be honest - it’s completely frustrating.  It feels like no matter how hard I try, it’s never enough.  I’m chasing a delicate balance I’m not sure I can ever achieve.  I still care and I’ll still work hard, but my goodness it is exhausting.

Wordless Wednesday - That Time Again . . .

Getting ready for Friday’s endo appointment.

Walk the Walk, Talk the Talk . . . .

It’s that time of year again when my Facebook feed fills up with people raising money for their JDRF Walks.  My chapter had its walk on Sunday and I love to see so many come together to raise funds and promote diabetes awareness.  It’s a good thing to walk the walk.

As the Advocacy Team Chair for my chapter, I was also there to talk the talk . . . . about advocacy.  And to urge everyone to talk the talk to our legislators.  This is another important way to raise much needed funds for diabetes research.


What was I talking about at the Advocacy table?  Well . . . . .

• Did you know that for every dollar JDRF donates to research, the federal government donates more than $3?
• The more advocates speak up to their representatives about issues like research funding, the more likely we are to succeed when they come up in Congress.
• Congress must renew the Special Diabetes Program to ensure federal funding continues each year (currently $150 million annually).

**  talking points provided by the JDRF Grassroots team.

I want to thank everyone who has walked their JDRF walk this year.  And those who have supported a walk participant.  And now I want to urge you all to talk the Advocacy talk as well!  Sign up as a JDRF Advocate and let our government know how important diabetes research funding is.  Given the economic crisis happening right now, it’s more important than ever to speak up!

A Little Bit Low . . . .

Every so often I take a short CGM break.  Sometimes it’s because they’re leaving behind welts and I need some time to heal.  Once in a while I mess up my supply order timing and run out of sensors.  Occasionally I just need a break from the beeping and arrows and information overload.  None of these things happen very often and usually I pull an old sensor and insert a new one right away.  But the nice thing about these breaks is that they remind me just how grateful I am to have a CGM in my life.  Because it’s on these breaks that this happens . . . . .



Pete and I were at Barnes & Noble buying a book for a course I’m taking when that familiar fuzzy feeling started.  “Sweetheart, I think I might be a little bit low.”  We found a chair and I tested, and sure enough I was more than “a little bit low”  It’s scary how low my blood sugar has to drop before I feel a hint of a symptom.  It’s a not at all subtle reminder that CGM breaks aren’t the best idea for me.