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Breakage.

Yep.  Bullet points.  It’s that kind of post.

  • It’s been several days since I’ve checked in on this blog.  Someone emailed me and asked me if I was still alive.
  • This is to confirm that yes, I am still alive.  :)
  • It was an unintentional break from blogging (and all things social media) due to the chaos of selling our house, buying a new house, and then moving into that new house.
  • It was weird, though.  The first day or two of not posting was top-of-mind for me, but after a couple extra days, it felt like a nice break.  My brain revolted, at first, not checking email and not being up on what was being discussed re: World Diabetes Day and all the advocacy stuff related to November.
  • But then it felt good.  A respite from the flow of diabetes.  Not that there was a break in my own personal diabetes flow (I still have type 1 diabetes, still pumping insulin, still CGM’ing, still testing my blood sugar … the list goes on), but I had no idea what was going on in the community and I was actually okay with that.
  • I spent World Diabetes Day packing and hanging out with Chris and the Birdzone.  Can’t complain even the littlest bit about that.
  • And now we have a new home (still proud Rhode Islanders) and are adjusting to life in a new town with a lot of cardboard boxes still waiting to be dealt with.
  • A lot of diabetes things have happened in the last week or two, though.  Stuff I want to make sure I mention before my synapses collapse.
  • Like the new Dexcom transmitter.  The lower-profile Dexcom transmitter has made a big difference in my wearability of the sensor.  The sensor has always worked well for me (since the STS days from years ago), so it’s not a matter of accuracy, etc.  But the larger transmitter that came with the G4 originally was noticeably bigger, and the “bulge in my pants” jokes were made as a coping mechanism, not because I enjoyed having this big lump in my pants.  The slimmer transmitter is better, for me, since my sensor is on my outer thigh the majority of the time.
  • (I can’t write “lump in my pants” or “bulge” without feeling creepy and immature.  Which makes me creepy and immature.)
  • I haven’t downloaded the 505 software update, though, because we don’t have a PC handy in our house.  So I’ll need to siphon off of a colleague’s computer in the coming days.  I’ve heard good things about the 505 update, and I’m excited to see progress coming monthly instead of … decade-ly?
  • Hey, there is still time to do your Big Blue Test!  Have you done it yet?  You can.  You don’t even have to have diabetes.  Seriously.  Just move your ass a little.  More here.


  • This cartoon reminds me of the time my macular edema was something the doctor informed the computer screen about, instead of looking at me. That was a crummy moment. Patient-centered shouldn’t mean screen time replacing face time. Or, you know, HUMAN INTERACTION.
  • Came across this word tonight and am better for it. What a great word – “ensorcell.”
  • In cleaning out our old house, I found an old bottle of witch hazel.  If you’ve ever had a bad night with tequila, don’t use witch hazel to clean your face or your body will have a prompt flashback.
  • I found this while packing:

    Never trust a big butt and a smile.

    A photo posted by Kerri Sparling (@sixuntilme) on

  • And on a very personal note, my cousin is an aspiring filmmaker and is part of a group putting together a documentary about homelessness in New Haven, CT.  Here’s a link to their Kickstarter campaign, H A V E N.
  • AND THIS THIS THIS IRONMAN THIS!!!!! Man, that is cool and I can’t wait to tell Birdy.
  • And that’s it. Brain, emptied!

Revisiting: Undefined.

“You have diabetes  You seem fine.” “I am fine.”
Diabetes makes me walk the precarious fine line
Between “I’m sick” and “I’m not” and the whole in-between
That makes diabetes invisible, and yet so seen.

“Needles?  Every day?  I could never,”
You could.  And you would, and you’d do it forever
If that’s what kept you from good life or harm,
You’d never think twice of needles in your arm.

“You seem fine.”  “I am fine, at least I think?”
I try not to let it push me to the brink
But even my best days are still diabetic
And on some days I feel frustrated, mad, or pathetic.

I can follow the rules and try to appease
The needs and requirements of relentless disease,
But even my best days are burnt at the edge
By the efforts that work their way in like a wedge.

“You seem fine.”  I am fine, except days when I’m not.
But I do what I’m told, and I learn what I’m taught.
And I’ll keep working harder to keep from the claws
Of an illness that doesn’t do “rewind” or “pause.”

Will it stop me?  It might, I can’t lie – and that’s scary
But between now and then, I throw all these hail marys.
It’s life, and it’s mine, and I won’t let it bear
The weight of a heart and mind wraught with fear.

There are miles to run, and children to hold.
There are travels to have, and stories to be told.
Diabetes?  Intense, and it looms, and it’s giant
But I’m more than my pancreas.  I’ve become self-reliant.

I may host beta cells that checked out long ago
But I refuse to accept the assumed status quo.
I’ll work harder, think smarter.  I’m not resigned
To accept limitation.  I live life undefined.

Pumps.

Actually, in this case, it was boots.

Sometimes I can’t throw this thing into my bra or onto my hip.  I find the inability to be discreet with my hardware frustrating, at times.  Very.  In lieu of throwing it against the wall, I’ll clip it gently, and with purpose, to the top of my boot and pretend that the tubing is a whisper of translucence, and pretend that because I can’t feel it against my skin, it’s not there. I remind myself to be grateful for the access that I have to things like this, and then I move on.

#WalkWithD: Lorrian’s Type 2 Experience.

(This might look familiar to you …)  A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

Last week, John shared his story, and this week, Lorrian is sharing hers.  Lorrian Ippoliti has been living with type 2 diabetes for almost 11 years, she is a native Californian, and she has been married to her husband, Mike, for nine years.  Today, I’m grateful that she’s sharing her #walkwithd.

*   *   *

The year before my diagnosis, my primary care physician called me and told me that my annual blood work showed that my “sugar (was) high” and that I “should watch it.”  Watch my sugar? What did that mean?  I didn’t ask, and my doctor didn’t offer.  [She certainly didn’t say anything about pre-diabetes]

The following year, my doctor’s office asked me to return so my doctor could review my blood work in person.  My doctor told me I had type 2 diabetes, gave me a sheet of paper about low carb diets, a prescription for Glucovance, and told me to “call me after you pick a meter.”  [My A1c was 13.4, but she didn’t explain what that meant]

That. Was. It.

No referral to an endocrinologist, no suggestions for reading materials or classes, no direction on how to choose/where to find a meter, and I was too stunned and frightened to ask any questions.

My husband and I researched diabetes (thank goodness for the Internet) and made drastic changes to our diet because of our fear, which led to multiple hypoglycemic episodes (chugging fruit juice in Costco, anyone?).  A coworker of mine explained to me about meters and showed me how to test, and a coworker of my husband’s referred me to an endocrinologist.

The endo took me off Glucovance, which eliminated most of my hypo episodes.

Even with my husband’s support, the first 8 years were awful, full of misery and fear and guilt.  The drastic diet changes we’d made were hard to sustain and I was constantly battling food and trying to make sense of how my body reacted to it.  I somehow got my A1c below 7, only to have it climb back up to the 11-ish range as I alternately rebelled or gave into feelings of helplessness.

Eventually, that endo told me there was nothing else medically she could do for me.  Yeah, a doctor gave up on me.

I completely gave up on myself after that.  I continued to take my medications, but for about a year I didn’t see any doctors at all.  I didn’t think anyone could help me or would listen to me.  (Even my dermatologist argued with me about the name of one of my diabetes medications, insisting that there was no such thing as Glimepiride and writing down Glyburide in my chart instead, so I gave up on him!)

Eventually, my husband told me how worried he was about me and that he wanted me to live for a long time.  Mike had found a nutritional therapist and we began seeing her as a couple.  Then he asked me to see his primary care physician, who turned out to be the first doctor to listen to my frustrations and fear.  He was so caring and agreed to manage my medications, but told me he wanted me to find an endo and gave me a six month deadline.

I found a new endocrinologist who is kind and compassionate, and both a cheerleader and a taskmaster.  She listens to me, celebrates my small victories, and pushes me to accomplish more than I believed I could.   Was there anything she medically she could do for me?  Sure!  She tweaked my medications, taking me off Glimepiride, increasing my Actos, and adding Lantus (insulin) and Victoza (an injectable which slows the emptying of my stomach).  (These medications were all available when I was seeing the previous endo.)

I’ve gained weight using Lantus, but my A1c has decreased from 11-ish to 7-ish.  I’m also back to having hypo episodes (one or two a month).  It’s a frustrating trade-off.

About two years ago my endo prescribed a Dexcom CGM, which has helped change my outlook about having diabetes.

For example, my endo wants me to have a glucose level of 100 mg/dl when I wake, which has been impossible for me to achieve and made me feel like a failure.  Using the CGM revealed that I have dawn phenomenon.  Seeing my glucose level in action relieved a lot of frustration – and – my endo can see that I hang out around 100 mg/dl for much of the night, but my level usually rises 30-40 points starting around 4:30am.  Plus, as an accountant I’m a data geek and having access to my numbers round the clock has helped me see patterns related to food and activity.

It has been an arduous journey since my diagnosis.  I’ve gone through the various stages of grief – indeed multiple times it seems – and I believe I’ve finally arrived at acceptance.  I can live with diabetes.

Kerri’s blog has been a touchstone for me throughout my journey – her openness about the challenges she faces have helped me know that I’m not alone, and I especially appreciate learning about the technology available to us.  In fact, my endo was impressed that I already knew what a CGM was, and now I’ve added CGM in the Cloud/The Nightscout Project to my diabetes management. (I HIGHLY recommend it!)

I share John’s outlook on what the designation type 1 vs. type 2 means.   Despite how we each developed diabetes, I feel that those of us with the disease share many more similarities than differences.   I want to thank Kerri from the bottom of my heart for inviting me to share my story and I’m looking forward to the future.

Thank you so much for sharing your story, Lorrian!!!

Pun(ch) Line and Inkage.

I wish I could find the source for the following image, but I love it too much not to share.  (I think it was Type 1 Diabetes Memes but I can’t re-find it.  If you know the source, please leave a comment so I can link out appropriately!)  This is real life as a pancreatically-challenged cyborg:

The punch line!  The pun! Much joy.

And I came across this tattoo on Pinterest from user Carmen Bailey.  Her comment, in case you can’t read it:

“My cousin Jeff is getting married in just over a month, and his fiance has diabetes. He got this tattoo of an infusion set (from a insulin pump) to match his bride. I think it’s adorably romantic.”

Agreed.  This is adorably romantic and also safe from doorknobs, making it a double-win.

Insulin pumps:  A source of insulin infusion, tattoo inspiration, and comic relief since 1963.

 

Tootsie Roll of Doom.

Low blood sugars can sound like stories told ’round the campfire, with great embellishments and drama as to who can tolerate the lowest number without tipping over.

“Low?  I wasn’t just low.  I was so low that my eyes were swimming away from my face and my meter said 52 mg/dL but I still got my own juice.”

“52?  I was 41 mg/dL without any symptoms at all and then my hands fell off so I ate them.”

“Pfffft.  I was 30 mg/dL and eating popcorn and I was coherent enough to eat individual kernels of popped corn until 100 hours passed and I had steadily climbed back up to 115 mg/dL without a rebound high.”

Impressive.

Most of the time, my lows are symptom free and I can function properly.  I feel lucky that, in the last 28 years, there have been more functional hypoglycemic episodes than ones requiring assistance.  I’m glad I can treat my own lows.

But sometimes numbers hit differently.  A blood sugar around 65 mg/dL usually feels a tiny bit off, but nothing too jarring.  No shaky hands, clumsy tongue, loss of peripheral vision stuff going on, mostly just a Dexcom alarm going off, forcing me to take a closer look at my graph and thinking, “Huh.  Time for a snack.”  (This lack of hypo symptoms is what prompted me to look into a continuous glucose monitor in the first place.)

At other times, the 65 mg/dL comes in like a freight train, barreling towards me with symptoms hitting full force, which happened yesterday while I was brushing my teeth.  A waves of confusion washed over me and put a twitch in my hands, making my desired grip onto the bathroom counter hard to come by.  My tongue went numb and I forced myself to spit the toothpaste into the sink, knowing the next mission was more challenging: get downstairs and eat something fast.

The first thing I saw was a giant Tootsie Roll in Birdzone’s Halloween bucket.  (Flashbacks to being a kid growing up with diabetes, where the Halloween bucket was always saved as a “for low blood sugars!” salve but instead was something I dipped into without admitting it, until there were only Almond Joys left.)  Normally, Tootsie Rolls are a candy that repulses me enough to steer me clear, the low symptoms were intensifying and my knees felt wobbly, so I unwrapped the candy and shoved it into my mouth.  And then I learned of a new hypoglycemia symptom that was in play this round:  a confused jaw.

Chewing on that Tootsie Roll candy was a disaster.  It was slightly cold, making it tough to work through regardless, but the massive chewy scope of the thing was too much.  In the fog of a low, I clamped down on the stupid thing and felt a familiar popping sensation.  The Tootsie Roll was working to raise my blood sugar, but in the interim, it had pulled off one of the frigging composites from my tooth.

Once the low had subsided, I called the dentist to fess up and make a fix-it appointment.

“What happened?  Did you bite into an apple or something?” asked the receptionist.

“No, it was actually a Tootsie Roll but …”

“Oh, Halloween candy.  Yeah, we get a lot of calls this time of year for stuff like this.”

And in my head, I was all, “Wait, no it was a low blood sugar and it was THIS BIG and I finally had symptoms – they were rotten – in the 60′s which is why I went for the Halloween candy …”

… but instead, I was all, “Yep.  Tootsie Roll of doom.”

 

#DayOfDiabetes Went a Little Rogue on Me.

I started the day strong, but after hours of a frustrating high blood sugar and seemingly bolusing saline instead of insulin (but it was insulin – I checked), I hit a big NOPE when it came to documenting the end of my #dayofdiabetes. I didn’t want to keep documenting my frustrations, not because I was ashamed of them, but because I was FRUSTRATED, you know?

Even though there isn’t a hashtag for my day today, I’m still here. I’m still doing this diabetes thing. And despite some frustrations, I remain fine.

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