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Posts from the ‘Diabetes and Family’ Category

Month 8,455 of Pregnancy.

It’s been very quiet here on my blog, and this is because my body and mind entirely are being slowly devoured by the baby.  I’m nine days away from my scheduled c-section (but past 38 weeks, so could go into labor on my own any time) and my body hasn’t ever been this pregnant before.

The baby apparently likes being in there, though.  He’s content.  Happy.  Laid back and chillin’.

… good for him because I’m not as content or comfortable, by comparison.  My body isn’t tiny to begin with, but a full term baby in my not-very-tall frame is making me waddle.  And whine.  And I might have burst into tears when I had to pee for the third time in thirty minutes while taking Birdy school shopping.  Or when I realized that I saw 1 am, 2.30 am, 4 am, 5 am, and 6 am as a result of waking up and needing to scurry off to the bathroom multiple times due to a baby hanging out so low in my body that he could touch up my pedicure with ease.

And then there’s that weird rush of guilt for not feeling consistently hashtag blessed or hashtag grateful about the opportunity to experience pregnancy, to be having this baby.  Getting this baby going was the longest and hardest thing I’ve ever done, clocking in at almost a full three years between the “hoping for baby” and the “holding baby in my arms.”  I am beyond excited to meet my son.  I am also beyond grateful to be bringing another little friend into our family.  But here at the end of the pregnancy moments, I’m very, very whiny and my brain is in a dark space that I hope lets up a bit once I’m not as physically pressured.  I’m gigantically pregnant and I kind of feel like a blob of discomfort.  I’m beyond tired of sharing my diabetes with someone else, the pressure to be in range exacerbated by the panic of having diabetes adversely influence my child’s development.

I’m sort of emotionally done being pregnant, but my body isn’t quite done yet.

My body and I are at odds about this fact.

Weirdly enough, my body is completely fine with still being pregnant.  Blood pressures were good in the first trimester, low for the second trimester, and have just started to creep back up a tiny bit in the last week or two, but I’m still not on any kind of blood pressure medication (was taken off it at the beginning of the second trimester, once my pressures were registering so low that it was causing exhaustion), so that’s a success.  During course of this pregnancy, the protein levels in my urine are checked weekly and they’ve only flagged as suspicious once (about two month ago) and even the twenty-four hour urine collections came back entirely negative.  My weight is stable and in range (though still WHOA because 38 weeks pregnant).  I barely have any swelling in my feet and ankles.  My A1Cs have been a source of pride for me, and hard-earned at that.  Even my dilated eye exam (they do one every trimester) came back so unremarkable that I’ve been “downgraded” to visiting the eye clinic once a year instead of every three months.

This pregnancy, when pitted against the one with my daughter, is much healthier, by comparison.  And for that, I am really hashtag blessed.

But today, at 38 weeks along and the weight of his little world on my pelvis, I’m hashtag tired.  And hashtag done.  And hashtag secretly hoping they decide that tomorrow is a good birthday for the little nugget because that would be fine by me.  Once I am able to give him a good snuggle and kiss his head, I’ll be hashtag grateful all over the place.  And hashtag complete.

Spring-Loaded Navel Gazing.

(Edit: I had originally written “naval gazing” instead of “navel gazing.” Thus illustrating the point of this post, which is that my mind is quickly becoming mush. Thanks, Bobby, for the edit. 🙂 )

It’s week 35 of this fetus party.  All I have left to give are bullet points.

  • My stomach moves.  Often.  To be more precise, it’s my baby who is moving, and making my stomach look possessed in the process.  It’s jarring to look down and watch the swirling storm of baby boy moving around happily in there.
  • It was also slightly jarring to be onstage for a panel last week in NYC and to have the baby going berserk while I was trying to talk.  I hope attendees thought I was trying to emphatically state my case instead of trying to dislodge the baby from my ribcage.
  • (I may have been doing both.)
  • At this point with my daughter, I was already in the hospital on pre-eclampcia instigated bed rest, so it’s weird to be home.
  • Don’t get me wrong:  I AM HAPPY TO BE HOME.  Bed rest sucked and I have no desire to repeat that experience.  But the last time I was 35 weeks pregnant, I was trapped in hospital; this time, I’m home and trying to be a productive member of our household.  I have no concept of what I should/shouldn’t feel up to doing.
  • Problem is, I have a bit of a nesting problem.
  • If you click on that link, notice the picture of the lady who is showered and wearing make up and has combed her hair and is happily – serenely! – dusting the front of her cabinet. That’s not the kind of nesting I am feeling.  No serenity here.  I want to rip all the weeds out of the front garden with my bare hands, name them all, and then jam them into the compost bin.  I want to paint the upstairs hallway.  I want to crochet a tea cozy big enough to put over my car to protect it from bird shit.  The urge to reorganize the books in my office by color and then by author’s favorite ice cream flavor is taking over my brain.
  • And yet I can’t sit still long enough to answer more than five emails at a time.  There’s a disconnect between “productive use of my time” and “full-out hormonal spazzery.”
  • Being home instead of the hospital is great, but is bringing about a new set of worries that I didn’t experience with my first pregnancy.
  • Like “what happens when your water breaks?”  My water never broke the first time. My daughter arrived via scheduled c-section after a few weeks of close monitoring, so I never even had a contraction.  The first contraction I ever experienced was when I miscarried last summer, making me feel even more uneasy about contractions.  Mentally, I’m unprepared for labor.
  • Physically, I’m as prepared as I can be.  I am delivering at a hospital that is about two hours from my home, so the journey there can’t be delayed.  I have a suitcase packed.  So does my daughter (so she can spend a night or two with my mother while we help her brother escape).  But the idea of that drive on top of potential labor stuff makes me twitchy.
  • (Of course we have a more local, true emergency, plan, but I want to deliver where my established care team is, so that’s our goal.)
  • I am also in bi-weekly appointment mode with my high risk maternal fetal medicine team, which means I am in Boston twice a week to check on the baby and for any potential issues.  I have been told to bring a suitcase to those appointments, too, as they may decide it’s go-time based on a single appointment, and I won’t have another four hours to go back and forth again.
  • Which means I’ve been living out of a suitcase for the past week, and will continue to pack-and-repack the same suitcase until the baby is born.
  • Thankfully, I only have about three outfits that fit somewhat properly, so it’s an easy cycle of packing and unpacking.
  • And I still have diabetes.  Yep, still there.  Still chronic.  Still want to shove it into a tin can and send it down a garbage chute.
  • My total daily dose of insulin is up significantly from pre-pregnancy numbers, but not quite in the triple-zone that I hit before giving birth to my daughter.  With Birdy, I was taking just about 100 units of insulin per day to achieve solid numbers.  This round, I’m taking about 65 units per day so far, though numbers still might climb as these last few weeks progress.
  • My insulin:carb ratios are getting crazy, though.  I was at 1:12 before pregnancy, and am already down to 1:6 so far.  That ratio change is increasing my TDD the most, as my basal rates aren’t too ramped up.
  • A1C remains exactly where I want it.  As does my blood pressure.  My weight is … weighty, but my son is in a very good percentile, so that’s my main concern.  I’ll gain a few extra here and there so long as he is fine.
  • And I remain afraid to put my infusion set into the taut, bulbous chaos that my stomach has become, so my insulin pump has been rotating around my hips and arms for the last few months.  Thankfully, as I get bigger, real estate options expand as well, but it gets harder to install new sites when I can’t exactly bend at the waist.
  • HA!!  Waist.  I don’t have one of those anymore.  It was left behind back in May sometime.  See ya.
  • Siah thinks the baby’s room is HER new room, which is bullshit.  Even when we have the door shut, she picks the lock and eases herself in there, sleeping on the toy box in the corner and burping occasionally.
  • These cats have no idea what they’re in for.  Again.
  • Truly in the home stretch now.  “Stretch” being the operative word, as I have real concerns about the stability of my belly button.  I fear that if I cough or roll the wrong way, it will launch from my body and hit the wall, like a champagne bottle cork.
  • Bring it on, kiddo.  I’m ready to meet you soon.  And to be reunited with a view of my feet.

 

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

Looking Back: Rules of Love.

Today, in response to spending the day fighting traffic for yet another installment of “how long will I be in the waiting room?” at the doctor’s office, I’m revisiting a post from 2012 about love, PWDs, and permission.  It still blows my mind that this book was published, and I remain appreciative of how far we’ve come.

See also:  eff off, Morris Fishbein, MD.

  *   *   *

In Austin two weeks ago, I had the opportunity to finally meet Josiah Hammer (known affectionately across the world as “The Hammer”), who works at Dexcom and is my direct point of abuse contact at Dexcom for when I screw things up.  [Editor’s note:  Hammer is no longer at Dexcom but is now over at Tandem, which is half the reason why I wanted to switch to Tandem because Hammer is majorly awesome.]

During the course of an email exchange, The Hammer sent me a page from an old health book that he found – the Modern Home Medical Adviser: Your Health and How To Preserve It (edited by Morris Fishbein, MD [who, according to many online sources that may be less-than-credible-but-still-cracked-me-up said that Fishbein was originally aiming to be a clown, but realized there was more money in medicine], published in 1942) which included a chart, of sorts, dictating who should shag whom.

Excerpts:

Only four rules. The shortest rule list a PWD has ever seen, to date. About dating. ;)

Of course.  Because all decisions of love are made with diabetes in mind.  There’s something about this chart that makes me both roll my eyes and then picture a diabetes Punnett’s Square.  Love is a tangled web as it is – plotting decisions against a diabetes graph makes things even more complicated.  Thankfully, good ol’ Morris was there to help people sort out who they should be smooching on.  (/sarcasm.)

This book also featured “blameful” and “blameless” diabetes, helping to drive home the misconception that type 2 diabetes is something people should be beaten with a stick for having and that type 1 is the result of hereditary circumstances (just like in my case, where I”m the only diabetic in my entire family, of any kind … /sarcasm once again).

The Blame Game sucks.

Sometimes I look at how diabetes is currently portrayed in books, television, and other media outlets, and I’m frustrated.  It’s a potluck of misconceptions, facts, and always colored by opinion, but it is slowly becoming more accurate, and more “real.”  People are learning about all different kinds of diabetes and the varying treatments, and the discussion about diabetes entering the mainstream is increasingly credible.  But iooking back at the so-called “medical books” from the early 1940s has blown my mind in a way that Steel Magnolias never will.

We have come a long, long way.  And I’m grateful for that.

A Fonder Heart.

Spending a few weeks offline was nice.  Good for me.  Removed that panic from, “What can I write today?” and replaced it with, “What can I do today?”  Stepping away from my website for the bulk of December was in efforts to shake the dust off my advocacy and outreach efforts by allowing a little room to not advocate or reach out.

Funny how that works, that absence thing doing weird things to the fondless levels of my heart.

When last Wednesday rolled around, I was excited to join the #dsma chat.  Emails are being answered with renewed excitement because I had a couple weeks to disconnect from things, making me appreciate the * ding * of email a little more.  Diabetes doesn’t feel like the narrator anymore; I’ve taken that role back for myself.

And doing non-diabetes things was good.  Traveling a bit with family and friends distracted from the constant hum of pancreatic chaos.  Christmas and New Year’s included hosting a lot of people in and out of our home, filling the space with voices and laughter and pleasant mess.  We made busted-up looking gingerbread cookies that ended up looking more like Super Mario Sunshine stars, but there’s joy found in Mario so yes.

I did a lot of laundry.  Yes, super boring, but superior therapy for me.  Things go into the machine horrible and come tumbling out of the dryer smelling fantastic and all fluffy-clean.  You can have your resolutions for 2016; I just want a pile of clean laundry to snuggle with.

I found one of those big, tupperware packing containers downstairs and it was filled with unused yarn.  The squeal I let out upon discovering this treasure was embarrassing, but I’d do it again because I frigging love yarn.  Currently dreaming up projects, while Birdy steals snippets from skeins to make wigs for her dinosaurs.

I watched my kid go bananas in a New Hampshire snowfall.  “MOM!!” and then EXCITEMENT.  After a winter where shorts have been more necessary than snowsuits so far, it was a beautiful thing, watching her scoop up handfuls of snow and lob them in her five year old rendition of a snowball.  The snow was beautiful.  (Remind me in February that I said that.)

… does this stuff sound boring?  MAYBE IT WAS but at the same time, boring felt nice.  Mellowing out is not my strong point, and neither is sitting still, but a concerted effort to not mentally and physically fidget myself into oblivion was such a stark change of pace that I liked it.

But now the holidays are over and it’s time to ramp things up again, keeping the pleasant mellowing on-call when necessary.  School is back in session and work is edging towards full swing here at home.

But the break was good.  Necessary.  And now my brain feels ready to do its job.

… can’t say the same for my pancreas, but that little bastard is a work in progress.

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