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Posts tagged ‘diabetes’

Diabetic Pregnancy: 25 Weeks and Counting Slooooowly.

A quick-ish update on pregnancy stuff.  It’s week 25 and I’m deep into the second trimester, just about ready to launch into the third and final lap on this baby stuff.  Warning:  I’m feeling uncomfortable and whiny this evening, so read this post through a lens of hopefully-forgiveable waaaaaaaaah.

Blood sugars.  I have them.  And they continue to be weird.  I remember dialing up my basal rates quite a bit when I was pregnant with my daughter, but this time there’s more focus on my insulin:carb ratios.  (Which, for the record, used to be 1:10 or 1:11 across the board, but now are 1:7 and 1:6.)  My overnights and mornings are very steady, but mid-to-late evening is where I am still falling apart and going higher than I’d like.  My endo has made tweaks.  I remain tweaked. But my A1C is the best it’s ever been in my entire life, so I need to stop bitching.

Doctor’s appointments.  I have them, too, and they all irritate me because I’ve made the horrible decision of anchoring each one in Boston. I trust the medical team at Beth Israel and Joslin (in combination) to help me see this pregnancy through to its successful conclusion, and I know my health and my baby’s health are in good hands with these medical professionals. BUT. I hate the drive into Boston from southern RI. I hate waiting for doctors who are running late (though this was not an issue last Friday – a very nice and welcomed respite from waiting 40 min to an hour to be seen by one doctor). Last week, I had an endo appointment, eye dilation, OB/GYN prenatal visit, and an ultrasound on the same day. I spent six hours in Boston being poked, scanned, and paying for multiple parking garages.

All of this is necessary for the health of me and the baby being built, but at the same time, the stress of trying to coordinate the appointments and corral childcare and take time off from work has been a lot to juggle mentally and physically.  And it causes major whining.  Like, MAJOR. (Like this whole post, perhaps.)

Thankfully, the endo appointment resulted in minor tweaks, the eye dilation showed nothing surprising or panic-inducing, the prenatal visit was an exercise in “Hey, everything looks awesome,” and the ultrasound showed a baby boy who was perfectly in range in terms of size and activity.  My c-section has been scheduled (and is subject to change, depending on how my blood pressure does for the next few weeks), but thankfully, I’m not even on blood pressure meds at the moment since everything is in range.

Lots of checks and balances to make sure everyone is safe.  The end-game is healthy baby, healthy mom.  And I’m on track for both of those things, so I need to keep my head on straight for the next pile of weeks.  But doing that has been hard lately, since I’m pretty freaking uncomfortable.

Planning for August.  Dude, I can’t wait for August.  We’ve dug out all of Birdy’s useable hand-me-downs (including the crib, which needs to be un-dissasembled, and a high-chair that shamefully still had three gluten-free sweet potato puff lodged into the base of it) and my son’s room is painted and somewhat figured out.  And in preparation for his arrival, my travel has been pared down to include just a few more things between now and the impending birthday, leaving me free to expand fully after Friends for Life this summer.

Body issues.  I have those, too.  Because yeah, I’d be lying if I said I didn’t have them.  I am expanding, and rapidly at that.  I’ve routinely envied women who carry their babies all beautifully, glowing and happy.  I’m kind of the opposite.  I love being a mom. Period. However, the process of becoming a mother again is hard on my body, and on my emotional state.  I wish I was more graceful and welcoming of all the changes, but I’m grouchy and weirded out by a lot of them. The influx of extra weight makes my body feel uncomfortable, my diabetes harder to manage, and the pregnancy aches and pains are kind of not my thing.  (Although I do like the kicks I’m feeling lately. It’s weird to be so happy about being kicked all day long by someone.) I am grateful this is happening in the first place, and I wouldn’t do anything to change it, but I need to remind myself that the body changes are somewhat temporary. And that I’ll feel normal again.  And that second pregnancies, from what I’ve heard, can be a little weirder than the first because things happen faster. And that it’s okay that my entire face looks different when I’m pregnant, because apparently I carry my babies in my face.

I’m excited to have my son safely out and healthy so I can go back to bending at the waist again without making strange “oooof!” noises.

Distractions.  In effort to distract myself from the discomfort of pregnancy in pursuit of the fruits of my (hopefully brief) labor, I’m easing myself away from the Internet here and there in efforts to be outside more.  I planted a garden.  Also potentially known as “a salad bar for all the asshole deer in my neighborhood.”  I’m eyeballing a children’s book writing class this summer.  I’m researching different writing opportunities, both in the diabetes space and waaaay outside of it.  I’m trying to monitor my emails without becoming a slave to them.  I’m aiming to keep healthy tabs on my pregnancy while also keeping tabs on my job. I’m looking at too many GIFs on the Internet and also missing The Good Wife (oh that finale). My brain is a fruit salad of mostly pineapple and random thoughts.

Basically, I’m slooowly losing my mind but only a few short months to go until my son arrives and I can start snuggling him.  Getting there. GETTING THERE!

Diabetes Blog Week: Language and Diabetes.

Language and Diabetes:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

 

Diabetes Blog Week: The Other Half of Diabetes.

The Other Half of Diabetes:  We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

(And for more on the topics of Diabetes Blog Week 2016, click here.)

“Just don’t eat sugar.”  “Take your pills.”
“Count your carbs.”  “Avoid most thrills.
“Be prepared.” ” Plan ahead.”

But this disease
Is in my head.

I can’t split up the thoughts around
My mental health and body sound.
Impossible to draw a line
Between “I’m sick” and feeling fine.
Just take my shot?  And avoid stress?
Beware of cake?  Test, don’t guess?
The list of things disease requires
Realigns my needs around desires.

“I need juice.”
“It might cause strife.”
But sometimes juice can save my life.

It’s hard to share
How much I see.
In every test,
Mortality.

Was seven then, when it arrived.
And since that day, I’ve stayed alive.
But not because
I’ve not had pie.
Or “just took shots.”
I try.
And try.

The mental health
I have achieved,
I fight for – harder? –
Than A1C.

The demands put on a chronic life
Exceed “just take your shot.”
We live beyond, we live out loud.
Mental health not an afterthought.

It’s not a disease where you just “just.”
It’s more than simply “do.”
But how I manage mental health
Will help me make it through.

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

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!

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