Eye Opening

Those closest to me know of my obsession with all things NPR. I listen to the local station on my way to and from work and I listen to This American Life, RadioLabs, Wait Wait…, and Studio 360 podcasts on my iPod throughout the day.  A few months back, I went to a live broadcast of a special episode of This American Life called “Invisible Made Visible” during which Ryan Knighton tells the story of when his young daughter first fully understood what it means that her dad is blind.  The segment I want you to hear is in Act 1 of the show so I recommend you hop on over and listen to it now (or read Act 1 in the transcript).  I’ll wait.

Pretty great, right?  I especially teared up at the moment, when Tess says so matter of factly that Papa doesn’t see and she so aptly points out that Mama does see, and asks earnestly whether Tess sees like Mama.  At this moment I thought forward in my life to when I have my own child.   I imagine us sitting down to dinner and a conversation going something like this:

We are sitting in the kitchen and I ask the kiddo to pass me a cookie and she does. And I reach for it and and grab my pump from my side at the same time.

And she says, “Mama has diabetes!” And I’ll think, that’s what I’ve been saying!

And we’ll say “Yes, Kiddo. Mama has diabetes.” And then she’ll have to check.

“Papa doesn’t have diabetes.”

And we’ll say, “No, Papa doesn’t have diabetes..”

And she’ll say, “Kiddo doesn’t have diabetes?”

And we’ll say, “No, Kiddo does not have diabetes.”

And some time later, we will be at a restaurant and as our food is arriving,  Kiddo will grab my hand and put it on my pump and she’ll finally understand the connection.

~~Stolen/adapted from Ryan’s words

While diabetes and blindness are drastically different beasts, I sat listening to Ryan Knighton feeling a bit like a kindred spirit.  We are both different; we both have something in our lives that effects they way we interact with the world but is barely visible at a glance.  Someday I will have to figure out how much of my difference becomes my child’s concern and how to make her understand..

For more laughter-inducing and heart-warming words from Ryan Knighton, check out his books or his blog.  You won’t regret it.

Taking Diabetes to Work

I started my new job at Company X last week. I have my very own cubical equipped with my very own computer, phone, and stapler; my very own fume hood equipped with a fancy new Schlenk line, vacuum pump, and shiny stir plates and lab jacks (I am a R&D chemist, btw); a slew of friendly and helpful coworkers; and a comfortable paycheck and benefits package (can you say “Yay! for dental insurance!”). Needless to say I am happy.

However, with a new job comes the need to introduce my diabetes to a new environment and new people. Something that I’m never sure exactly how to approach. Do I let people find out organically and not tell anyone unless it “comes up” or do I “disclose” my diabetes to my boss and few select coworkers as I get to know people? And how will my diabetes react to my new schedule?

The latter has turned out to be the easy part. Relatively speaking. During my first 3 days of work I was low constantly so I reduced just about every rate and ratio by about 10%. Sine then D has been behaving and I think that over time I will have to stepwise adjust my rates back to pseudo pre-job numbers as I develop a routine and begin to settle in.

The tricky part is figuring out how to introduce D to new people. In the past I have tended toward the organic option, making more effort to keep my diabetes under wraps than developing an at-work D-support system. But, I also have never been as conscientious about my diabetes as I am now. But I still don’t feel completely comfortable beginning the disclosure conversation.

My immediate supervisor, JK, already knows – it came out as we were heading off to lunch on Day 1 and he was telling me about his recent vegan conversion (since D is also a bit a bout food choices, it fit right in). His response was typical. “Oh, that’s interesting. My [insert distant relative here] died just last week from diabetes. She didn’t even know she had it before she was rushed to the hospital with a blood sugar of 900.” Yeah, mine isn’t like that. I explained to him that I have type one, had it since I was six. I wear an insulin pump and am otherwise completely healthy. That his distant relative is the exception, not the rule.

Then he stepped into the role of supervisor and asked me if there was anything he needed to know. I told him that I keep my diabetes well monitored but I could let him know the signs of low blood sugars and the appropriate emergency response, but really all I need is that he’s aware so that in case of an unrelated emergency he can make inform anyone else who needs to know. There. D-introduction done. Right?

The next day, the was training me on some piece of equipment when my BG began to trend low and Dex felt the need to inform me. Loudly. So I pulle doff my glove, reached into my pocket to silence Dex and put on a new glove. When I looked up, JK looked concerned and asked if everything is ok. I blushed and simply said “yep – everything’s fine” and the training continued.

Now I think that maybe I need to sit him down and give a breif tutorial about my different bionic parts, the noises they make, and the implications of those noises. The last thing I want is to be sitting in a meeting, have Dex go off, and have everyone think that I’m reaching in my pocket to return a text or something. I’d rather the explanation be preemptive.

But I don’t know how to begin that conversation. Despite my new found comfort with D, I’m still uncomfortable talking about it with people unfamiliar with D.

Then there’s the conversation I had with another coworker who was interested in seeing pictures of my hedgehog, which I have on my phone. She pointed to my pocket and said, “Do you have your phone with you?” As if she thought that even though I said I left my phone at my desk, I had something clearly cell-phone like in my pocket so I must’ve been mistaken. I told her that I did not in fact have my phone with me but would definitely show her later. I could have said a million other things. I could have told her what was in my pocket, showed her even. I could have brought her into the loop but I choked. And D remains under wraps.

I’m thinking of being really bold and beginning to wear my pump and Dex outside of my pockets at work. The idea behind this is two-fold. First, it would make life in the lab a bit easier. I would have better access to these devices and would be less likely to accidentally contaminate something by having to reach into my pocket to see them. Second, although people still wouldn’t necessarily know what they are, it would be more obvious what they aren’t and maybe these conversations would come more organically.

I’d be very interested in hearing how other people have approached introducing D at work. Please comment if you have any stories or insight.

Diabetes is Annoying

Here are the the things that annoy me most about diabetes (in no particular order):

  • Ugly 15 day old  Dexcom sensors on my arm that prevent me from wearing short sleeves on the first warm day of the year.
  • Having to plan everything from eating to walking in advance in order to keep my BG from misbehaving.
  • Envying my friends who inadvertently flaunt their functioning pancreases (pancreii??) in front of me.
  • Sensitive infusion sites that hurt for no reason after only a day.
  • Having no money to go out and have fun because I just stocked up on pump supplies and sensors.
  • Having to find a job with benefits.
  • Lows whilst out for a walk.
  • Being placed on mailing lists meant for AARP members.
  • Needles.
  • Feeling guilty for wanting a brownie.
  • Having all of my pockets occupied all of the time with pumps, and Dex receivers.
  • Always needing to carry a purse to carry all of my D-stuff.
  • Lows at “bed” time.
  • Stubborn highs.
  • Talking to inanimate objects like a crazy person.
  • Lows in the middle of the night.
  • Showers burdened by infusion sites and sensors.
  • Treating M like crap because I’m having a low and he’s just trying to help.
  • Lows during exercise.
  • Dedicated shelf space for D-stuff.
  • Not being able to wear pants without pockets.
  • Having to explain.
  • etc.

Conversing with Dex

Like a crazy person, I find myself referring to and speaking to Dex like he’s a real person:

Dex: “BEEEEEPPP!!!”

Me: “What do you want? I just had a juice box 20 minutes ago.  You can’t possibly think I need another…”

Dex: “LOW: Below 60” arrow pointing due south

Me: “Fine.  If you insist.  But I am really getting sick of all this apple juice!” Drink juice box.

20 minutes later.

Dex: “BEEEEEEEEEEEEEEEEEEEEEEEEEPPPPPPPPPPPP!!! “LOW: Below 55”

Me: “SERIOUSLY?   What’s your problem? I can’t just drink juice boxes all the time –  I have other things to do you know.”

M: “Umm…Are you talking to your Dexcom receiver?

Me: Realize that I am, in fact, talking to an inanimate object. “Well, he started it!  This makes me look a little crazy, doesn’t it?” Drink juice box.

I enter the living room with a spoon and a quart of black raspberry chocolate ice cream.

M: “Hey! Don’t eat that!”

Me: “But Dex said I could.”

M: “I didn’t hear him say that.”

Me: “Well, he’s on vibrate.”

Me: “ZZZzzzzzz….”

Dex: “BEEEEEEEEPP!”

Me: “ZZZZZzzzzzzz…”

Dex: “BEEEEEEE-Wakeup!-EEEPPPP!”

Me: “Shut up and let me sleep already! I hate you!”

Dex: “BEEEE-I’ll-shut-up-after-you-pay-attention-to-me-EEEEPPP!!”

M: “Wake up!  You’re low! And stop the beeping!”

Me: “Fine” Groggily push Dex’s buttons and bolus a quick correction. “Are you happy now?  Let me sleep already.”

Dex: “…”

The End

My New Normal

Back when my A1c was in the double digits, I didn’t really know what high felt like.  Since my BGs averaged in the 200s, those numbers felt normal and anything beginning with a 1 or below felt low(ish).  I could still, for the most part, distinguish between a real low and one of these lower-than-normal lows, but I never felt high.  And since, for me, high was never as debilitating as low, I wasn’t too worried.  Of the following list of high symptoms, the few that I may have been feeling, I could write off for various other reasons.  For instance:

  • Frequency in urinationI wasn’t going any more often than I normally go
  • Thirstisn’t it good to stay hydrated?
  • Dry mouthtoo many salty snacks
  • Urination at nightbut if it’s normal…?
  • Drowsiness or fatigueall teenagers are tired, right?
  • Loss of weightI wasn’t losing weight (but for all the snacks, I certainly wasn’t gaining any).
  • Increase in appetitegrowth spurts
  • Slow healing of woundswhat wounds?
  • Blurriness in visionneed new glasses
  • Dry and itchy skingenetics and dry air

And since lows were so infrequent, every single low felt like the end of the world with all of the tell-tale symptoms rearing their ugly heads.  I would sweat and shake and stumble through every word until I ate my way back to feeling normal.

More recently, with a BG average closer to 120, my world has turned upside down.  I start to feel high when the Dex graph creeps above 150 for more than 5 minutes, during which time I chug gallons and gallons of water to no avail and want nothing more than to stay glued to the couch with a cookie.

While feeling my highs is probably a turn for the better, I now have trouble noticing lows.  I spend around 50% of the day between 70 and 90 and dip down to 50 at least once a day.  But now I don’t feel low until that number is well below 40.  I still have the occasional low at 65 but usually the symptoms don’t show up before Dex has alerted me to the problem, I’ve corrected with a juice box, and my number is on the raise again.  So, sometimes I’d rather just turn my basal way down and try to wait it out.

But am I making low my new normal?  Have I ventured too far to the other side?  What good are symptoms if I can’t feel them anymore?