Isn't That What Nick Jonas Has?

This past weekend, I flew out to the east coast to visit some good friends for a few days.  I had a wonderful time, which made it really hard to go back to work today.  I feel so fortunate to have one friend, especially, who I stayed with while I was there.  She just gets me, in so many ways, and it's great to have that kind of support and understanding. 

Being so immersed in both own life with T1, and the diabetes community-at-large, I sometimes forget that "the rest of the world" isn't in on lingo I use, or the schedule I keep.  The people in my inner circle are pretty knowledgable about what goes into my diabetes care.  I guess, because of this, I forget that anyone else I might encounter could know little (or nothing) about type 1 diabetes - or any kind of diabetes, for that matter.  I do my best to educate as I go.

Here's a rundown of things I encountered during my travel and vacation:

Flying stresses me out.  Okay, maybe this isn't news - I have always been apprehensive about flying.  Not the actual being-on-a-plane, holy-cow-this-is-really-high-up stuff, but the parts where I wonder, "Did I bring enough glucose test strips?", or "How much of a hassle is it going to be getting through the TSA checkpoint this time?", or better yet, "What if my insulin pump, or any other piece of equipment, decides to fail while I'm away from home?".  What this means is that I carry a lot of stuff with me when I fly.  As my husband noticed, my carry-on bag is 90% diabetic supplies, and I'm lucky to get a book and a jacket stuffed in there with them.  There are so many things that could go wrong, and I have to plan for every single one of them.  For example, my checked baggage could be lost - which explains why I carry all of my supplies with me.  This trip, I completely filled two gallon-size plastic bags, plus a smaller cosmetic bag.  Here's what I brought:

• a box of alcohol swabs (quantity 100)
• 250 test strips (much more than for 5 days - what if my return flight got cancelled, and I was stuck there an extra day?)
• a glucagon kit (what if I went low during my sleep, and my friend couldn't get me to wake up to drink juice or eat glucose tabs?  This is an emergency-only option, but you never know when emergencies will happen.  And, you can sure bet that they'll happen at the time you're least prepared for them.)
• IV Prep antiseptic wipes for insulin pump infusion sites, and CGM sites (brought twice as many as I thought I'd use)
• two boxes each of two types of insulin pens (what if my insulin pump died?  It's happened to me before!)
• one box of insulin pen needles (quantity 100 - so, about twice as much as I thought I'd use, if the pump broke on my first day there)
• two vials of Humalog insulin (what I use in my insulin pump, to refill it every two-ish days)
• 7 insulin pump infusion sets (which is also twice as many as I'd normally use.  But - what if I accidentally pull out my site?  What if I do it more than once?  What if my sites clog up more quickly than I'm used to?)
• 7 insulin pump cartridges (see above.)
• a jug of glucose tabs
• my glucose meter
• extra lancets for finger sticks

All of these items, according to the TSA, need to have prescription labels in tact.  Some will tell you that you also need a doctor's note explaining why you need to have all of these things with you, but I've never had to show one.  (This always seemed absurd to me.  Who is going to carry around such expensive medical supplies unnecessarily?)  So, for some, I cut off the label from the box and stuck it loose in the bag.

Sometimes, the TSA is cool.  At the airport in Omaha, I had a generally good experience going through security.  I took all of my healthcare stuff out and asked for it to be hand-checked.  (Some things, like a glucose meter and test strips, are sensitive to x-ray, so it's best to have them not go through the scanner.  I tend to pack everything together, so I just have it all hand-checked - which I figure is safer, anyway.)  Took off my shoes, waited my turn, and went through the scanner.  BEEEEP!  Back up.  Let's see, what do I have on me?  Usually insulin pumps hadn't set off the alarm at airports for me before, but I went ahead and told the guy about it.  He had me wait for a female TSA agent, who was a friendly lady not much older than I am.  She had to do the full body check with a wand, and also pat down some parts to be sure.  She kept apologizing, and was very cool about the whole thing.  She found my insulin pump, and the CGM sensor on my abdomen, and asked me several questions about them.  I was glad I had an opportunity to educate!  After a couple of minutes, we were done, my supplies were checked, and I was on my way.  Piece of cake!

Sometimes, the TSA doesn't know what a piece of cake is.  The experience I had in Hartford couldn't have been more different.  As I pointed to my plastic bags and asked for a hand-check, the lady behind the conveyor belt told me "Those don't need to be hand-checked."  Um, excuse me?  I again made my request.  Her rebuttal:  "My boyfriend is diabetic, and all of his stuff goes through the scanner."  Me:  "Well, mine can't.  Some of the things in there are sensitive to x-rays."  Her:  "Which things?  His go through just fine."  Me:  "The test strips, and..."  Her:  "No, those don't need to be pulled out."  This is where I just about lost it.  I spoke as slowly and clearly as I could, enunciating every syllable, hopefully without sounding outright derogatory.  "I would really feel more comfortable if they got hand-checked."  So, what she did was pull out only the test strips (as she didn't let me finish my sentence to include "...and my glucose meter.") and shoved the rest of it through the x-ray.  And now?  My meter screen has two permanent lines going across the screen, that weren't there before.  At least I didn't have to get wanded again - in fact, I didn't even set off their alarm going through the scanner.

Being associated with a Jonas Brother is okay.  Some of my friend's friends were gathered on Friday night at her house.  I hadn't met these people before, and it appeared my friend hadn't said anything about my faulty pancreas - which is totally fine.  So, when I kept fiddling with my pump and CGM receiver, I had some noticing glances.  I mentioned I had type 1 diabetes, and the room lit up.  "Is that where you can't eat salt, or sugar?" was the most surprising one to me - I thought that understanding was pretty commonplace.  My favorite comment was, "Isn't that what that Jonas Brother has?"  I think I actually shrieked.  "YES!!!  That's exactly what I have!"  I was so grateful, that in that moment, at least one person knew exactly what I was talking about.  I feel grateful that Nick has been spreading awareness of the condition we share, so that at least there was one less time in my life that I'll have to explain exactly what type of diabetic I am.

Vacation stress = much less insulin.  I had always thought that stress made my glucose levels rise, because of the hormones that get released during stress and anxiety.  As it turns out, at least for stress related to travel, my numbers drop.  I had to set a temporary basal rate of -50% of my normal rates for pretty much the entire day, on both days I flew.  And I had great numbers after that.  I couldn't believe it!

An insulin pump clipped to your swimsuit really isn't a big deal.  Here I was, all paranoid about wearing it clipped to my suit, and really - no one noticed.  I kept looking around, but I never caught anyone staring.  (If I were a more narcassistic woman, I might have been bothered by this.  As things were, I was just fine with it.)  The pump stayed in the shade most of the day, and it all worked out just fine, being attached to me the whole day.

In short, it was a great trip, and was exactly what I needed.  Even though T1 can make travelling even more stressful than it already is, it's worth it - and can be done without much trouble.  :)

I Guess This Is What My High School Math Teacher Was Talking About.

As a diabetic, and especially as a T1, my life is ruled by math - but really, just numbers in general. Keeping track of everything (glucose readings, insulin doses, food consumed, exercise, stress, etc.) was extremely overwhelming before I had an insulin pump and CGM to help record and remind me of some of my numbers.  I am also lucky, in that the "math" part of my health care can usually be done by my insulin pump.  However, in those rare moments that a pump malfunctions, I need to know the equations necessary to keep my insulin doses in check. 

In the diabetes world, numbers are often viewed as a gauge of how well you've been taking care of yourself – except, are they? Here’s a look at the D-numbers that make an appearance in my daily life.

1. 15 to 25 – the amount of blood tests (pricking my finger) I do each day
2. 13 – the number of different basal rates* I have throughout the day
3. 1:5 – my insulin to carbohydrate ratio at lunch time (there are different ratios for other times of day)
4. 15 – the minimum amount of minutes I need to wait between taking insulin for food, and actually getting to eat it
5. 1:20 over 100 – the correction factor I use when figuring out how much insulin to take for a high glucose reading
6. $732.56 - the amount of money Walgreens says my insurance saved me - on ONE MONTH'S worth of test strips
7. 5 - the frequency, in minutes, that my CGM (continuous glucose monitor) checks my blood sugar
8. 140 – my 30-day blood glucose average, according to my glucose meter
9. 7.1 – my last A1C result

Some of these numbers have a lot going on in the background. Take number 5, for example – my correction factor. If I do a blood test and see 225, that’s definitely out of range (which, for me, I consider 80 – 120). But, I have to think about why I might be at that number – did I count the carbs exactly right in the food I ate? When WAS the last time I ate? Was I higher than this previously, and I’m actually mid-drop? Is my insulin pump actually delivering insulin, or did the cannula get clogged? Am I feeling especially stressed? All of these factors could have played a part.

Then, there’s the last item on the list – my A1C result from April. (The full name for the test is a Hemoglobin A1C test, which is a indication of your average blood glucose levels over the past 3-ish months. The recommended range is 4 – 7.  To put this in perspective, a 6 correlates to an average BG number of about 122.) I have been working very, very hard to bring my A1C down. Previous to this last test, I had pretty consistently come in at the 8 – 9 range. 7.1 was huge for me.

However, I can’t help but feel that A1C testing, in general, is flawed. So much rides on this one number. For most, it feels like a report card for “how well” you’ve done managing your diabetes, and is the benchmark for most of the medical community. Bad A1C?  You must not be working hard enough!

To some extent, this can be true - but not for every case, and not for every person.  An A1C result is only an average. This means that someone who consistently had a BG of 122, which mild or no fluctuation, has the same A1C result as someone who pings between 50 and 200 all the time – and the fluctuations are dangerous. 

The logical side of myself knows that the numbers are meant as tools to help – not as a measurement of whether I am a "good diabetic" or "bad diabetic". But, I often can’t bring myself to get past the feeling that they are just that - grades.  I want the numbers to reflect how hard I’m working, and they just don’t always do that. Some days feel like I’m fighting a war I can’t ever win. But, I just have to learn from the experience, and come out swinging - ready for the next battle.

*For those who are unfamiliar, a basal rate (not to be confused with "basil" - which would be much more delicious than insulin) is the rate of a continuous supply of insulin, provided by an insulin pump.  Different activities and times of day require different amounts of insulin, in order to maintain steady blood glucose levels.  What kinds of things can affect your blood glucose level?  That's for another day, and another post.  :)

Lost Opportunity.

The CWS game we tried to go to today was postponed because of rain for over 4 hours.  (We gave up around the 3 hour mark.)  But, walking around outside the stadium, I made a discovery.  As we were waiting to cross the street with the hordes of other people, I saw a guy behind us, with a familiar device attached to his belt clip, tubing all crazy and not tucked in.  An Animas Ping!  And it was silver, just like mine! 

As excited as I was to see this, and as much as I wanted to go over to him and shriek, "You're wearing an insulin pump!  So am I!  I have the same exact one!  See?!", I didn't.  For one, it would have been awkward, as I would have had to reach up my shirt to retrieve my pump, which was clipped to my bra.  Second, there was a small crowd between us - and third, we just then got the signal that we could cross the street.  I can't help but feel remorseful about this.  In addition, I probably spent the next 30 minutes scanning the crowd to see if I could find this guy again.  I wanted to know - did he have T1 or T2?  (I recently found out some T2's use them as well - so I can no longer assume pump = T1!)  Did he also use a CGM?  How long had he been using a pump?  I had so many questions. 

It's not often (actually, pretty much has never happened) that I randomly run into another of "my kind".  I know a few other T1's in real life, but none of them live within an hour of me.  It would have been nice to, even for a few minutes, be able to chat with someone face-to-face who walks in my shoes.  Next time.  Next time.

Half-Marathon: Check.

Last month, I attempted (and completed!) my first Half-Marathon.  I had never done anything like that before, and have never historically been a fan of running.  A few years ago, I forced myself to try it again, and it wasn't so bad.  A friend of mine (non-diabetic) does this Half-Marathon each year, so I decided to give it a go with her.  While the race itself was fun, my diabetes didn't agree.  I was able to finish, but was very slow (this may also be attributed to my less-than-stellar dedication to training).  Here's my marathon story:

I woke up at 5:00, and although my numbers had been good while I slept, I shot up to 175 for no reason as soon as I woke up (according to the CGM). I did a blood test to verify, and yes, that was right. I took one unit of Humalog, which brought me down to 125, almost literally right away. This kind of speedy drop is not normal for me.

I got ready, and my brother was here at 6:00 for us to go downtown to the start line, with my husband. (My brother, who is not T1 - and a phenomenal athlete - also ran. My husband met up with me in between aide stations to refill Clif Gels, give me some additional water, and whatever else I might have needed. As another runner said during the race, "He just earned Husband of the Year".) I ate a Snickers Marathon Nutrition bar on the car ride, with no bolus taken for it. I should also mention I turned down my basal to "OFF" at 6:00 am, and didn't turn it back on until after the race was over.

We lined up around 6:40, and my CGM said 83. Then, a few minutes later, 72. Really? I hadn't bolused for the bar I ate, and that was 22g of carb! This is where I panicked a bit. I ended up eating two Clif Shot gels - also about 25g of carb each - before the start. By the time we got to the starting line around 7:15, I was shooting back up, and was 157. I thought, "Awesome! Don't know what happened there, but at least I'm back up where I want to be, now."

Fast forward to mile 2 - I notice I'm over 200. Okay, not panicking yet. I "peaked", or so I thought, around 280 and then it showed that I was coming back down pretty quickly. Again, as a precaution, I ate another gel. This may be where my biggest mistake was, because I didn't drop too much more after that. In fact, I did most of the race over 300, and a good chunk of it "HIGH", which means I was over 400. I started taking a unit here and there after mile 8, not wanting to overdo it and drop too quickly.

By the 12th mile, I was back down to the 300's, so I was probably about 325 when I finished. Who knows how high I really got - but I tested before and after the race, and the CGM was accurate both of those times - so I have to believe those numbers are true. I felt pretty throw-upy feeling around mile 10, and I'm not sure if that was hyperglycemia-related, or not - but I slowed down, and the feeling subsided. I drank half a cup of gatorade around mile 5, and stuck to water after that.

It feels so good to know I was able to finish. I was very slow, and didn't run as much of it as I walked, but I finished, darn it - and that was the point. Finish, no passing out or throwing up. Check, check and check!  I am usually very diligent about keeping my numbers in check, but for this race I wanted to focus on finishing - whatever that meant, diabetes-wise.  I tried to not let the sight of such high numbers bum me out and just focused on moving forward.

I feel like I did learn a lot for next year.  If I'm able to, I'd love to do this race each year, with a new goal - cut time, run more of it, have better numbers during the race, etc.  Let's be clear:  T1 does not hold me back from anything I want to do.  It merely takes a little more effort and work to get there.

I Love Bullet Points.

It's Friday, my belly is full of delicious Mexican food, and I have too many thoughts to put into one cohesive post.  So, I'm doing a list of thoughts.

• I really need to figure out how to bolus for Mexican food.  I looooove Mexican food, which is a by-product of my love of cheese.  I had rice, beans, tortilla chips, and the tortilla around my burrito - so, a lot of carbs, right?  I guessed it was 80g total, did the math, then went to the Combo Bolus screen and gave the Okay! for a 4-hour, 60/40 split bolus.  I was about 130 (but coming down) before we started eating.  Fast forward to half an hour after leaving the restaraunt:  I'm 71 and dropping - cancel the rest of the extended bolus, drink some sugary stuff.  Now I'm 227.  *shakes fist*
• Almost lost the CGM receiver yesterday.  (By the way, my receiver is named Jim.  He just is.)  I went out for a walk with it in my pocket, and when I returned to work, Jim wasn't there.  Turns out he was laying face down on some mulch, 3 blocks away from my building.  He was wearing his gray "jacket", so he blended in pretty well.  Is my pocket really that bad of a place to hang out that he had to jump ship? 
• There is something about little girls (like, toddler-age) wearing flip-flops that just gets me every time.  I instinctively go "Awwww!".  I can't help it.  Also, I'm seeing pregnant ladies everywhere.  Is there such a thing as Baby Season?  Because I think we're in the thick of it.
• I am going to be on the beach in 8 days, and I cannot wait.  I'm still trying to decide what my insulin strategy will be that day - do I wear the pump clipped onto my swim suit?  Do I disconnect and keep it in the cooler, bolusing a few units every once in a while? 
• I get to go to a couple of College World Series games this weekend.  I think that I'm equally as excited about the sun I'll get while sitting there, as I am about watching the games.

Anywho, that's what's in my head right now.  :)

Sugar Stalking.

A typical definition of stalking includes "a series of actions that puts a person in fear for their safety".  In my case, my series of actions - up to 22 finger sticks per day, and an almost compulsive need to check my CGM screen - have quite the opposite goal. 

In January of this year, I got my Dexcom continuous glucose monitor.  It comprises one of my two "robot parts" (the other being my Animas Ping insulin pump), and I love it.  I've learned so much about how different foods affect me, which has helped me to more efficiently use my insulin pump, as well.  I can know what my numbers are doing while I'm exercising, and catch lows that I might not otherwise feel before things get crazy.  And, even though I hate the loud BEEEP!  BEEEP!  BEEEP! when I'm trying to sleep in the middle of the night, I appreciate that someone - even a robot - is looking out for me when I fall dangerously low.

The flipside of all of these wonderful things is, I've become a little crazy.  Okay - a lot crazy.  Obsessive is a more accurate term.  Being able to know where I am at all times, and then learning that the CGM isn't always reading accurately, has caused me to more than triple the amount of finger sticks I used to do.  I'm a person who is all about the details, and I want to know.  I need to know!  I'm trying to bring down my A1C, and I can honestly say I've never been so motivated in my adult life to gain tighter control of my numbers.  It's scary, frustrating, and exciting all at the same time.  My last A1C, which was in April, was a 7.1... and my goal for July is 6.5.  We'll see!

What Are You Doing?

*in the voice of a movie trailer announcer*

In a world...  where medical devices can pass for cell phones...

Of all the things I don't like about being diabetic, there are a few that I can be thankful for. 

1. That I wasn't born before the 1920's, when insulin was discovered.
2. That I have the best available technology to use to manage my disease, and a supportive medical team who I actually look forward to seeing every 6 to 8 weeks.
3. That I have relatively no complications, after 24 years.

I'd like to also add to that list:  the option of discretion.  All diabetics are different - some proudly flaunt their insulin pumps and glucose monitors.  Some simply don't care if others see their devices or not.  For me, it's always been a struggle.  It's not that I don't want others to know I'm diabetic - it's just that I don't want it to be one of the first things they notice about me.  I like the idea that, of all the things in my life that I can't control, who knows about my diabetes can be one of those things.  We're lucky, in a way - there are so many other illnesses out there in which, because of its change to one's appearance, you do not have a choice in who will know.

This isn't to say that I go out of my way to hide it.  I tend to wear my insulin pump under my clothing somewhere, or in a pocket, as opposed to clipped to my waistband, like others might.  My Dexcom receiver (a continuous glucose monitor "remote") is usually in my purse, a pocket, or just in my hand as I'm walking around work.  But the meter-remote for my insulin pump?  I will whip that out anywhere.

In fact, my meter-remote has more than once been mistaken for something it is not.  "Oh, did you get a new cell phone?"  Or, "What kind of phone is that?"  My favorite came from my husband's grandma.  We were sitting around the table, with food being passed around, and I was figuring up my bolus for the meal.  There is a rule at their house about no cell phones at dinner, and she didn't know about my new diabetic equipment.  "What are you doing?  Texting?" 

Yes, actually.  I'm texting my pancreas.

Welcome to my life.

I'm Kim, and this is my blog about my life - which includes type 1 diabetes.  I was diagnosed in 1986, when I was six years old.  Managing my diabetic care does require a lot of time and effort, but I try to not let it run my life.  It's just a part of who I am - like my freckles, my relentless need for organization, and my tendency to laugh too loudly at puns and corny jokes. 

Here, I will share my successes, challenges, frustrations, and thoughts.  I know there are already a lot of d-blogs out there, many of which I admire and read often.  I hope that adding my voice to this community can bring more awareness to the cause, and  some comfort, information (and entertainment?) to those affected by diabetes.

Thanks for reading!