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Posts from the ‘Diabetes Complications’ Category

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Potent Potion.

Turns out I’m not unique in experiencing the dreaded “Dexcom rash.”  (Which sucks for anyone else who gets the major sensor scratchies, but at the same time, the diabetes community is innovative as eff.  We work around the workarounds.)

When it comes to dealing with my own Dexcom rash, wearing the Toughpad underneath my sensor helps a ton, but it doesn’t remove the reaction entirely.  Which means that after a seven days, I will peel off a sensor to find a raised, slightly irritated area underneath.  (And that patch of skin usually gets worse the next day, particularly after showering or if I’m in recycled air like in an airplane.)

After talking about the rash with my endocrinologist, I asked her for some recommendations for lotions to use after the fact, when I need to soothe my skin post-sensor removal.  She said that Amlactin was something that she’s used in the winter when hand-washing causes rotten skin, and suggested I give it a go.

So I did.

Magical rash healing powers.

A photo posted by Kerri Sparling (@sixuntilme) on

And it works better than I had expected.  It’s not the best smelling stuff (kind of like a stick of butter mixed with stale toothpaste and a dash of freezer burn), and it sometimes makes my skin feel hot for a few seconds after application, but if I slather this stuff on my sensor-irritated skin, it helps so much.  Rashes that took a week to properly mend were fine after two days, and the rapid-healing helped keep the curb appeal of my skin real estate intact.

There you go.  A post about a lotion that helps deal with Dexcom rashes.  No, it’s not sponsored.  Yes, it’s kind of boring.  But this shit works for me.  And it might work for you.  So go forth and slather.

Here’s a flying cat, just in case you wanted one:

Looking Back: Complications.

As I head up to the Joslin Clinic today to have my eyeballs, and my soul, looked at to make sure both are fine, I was reminded of this video from last year about diabetes-related complications.  I still stand by the sentiment that you owe it to yourself to live the best life possible, even with whatever you’ve got.

Hopefully today goes well. Either way, I’m on it.

Jack Frost Hates Me.

Over the last few weeks, the elements haven’t been particularly forgiving.  Arctic temperatures blasting their way through New England, feet of snow falling by the clump … my whole front yard looks sponsored by Frozen and I can’t let it go because I have to fucking shovel it.  Despite having a heavy winter coat and gloves and all the “right” clothes to keep my body warm and protected, my skin is still suffering in this winter wonderland.

Being skinned alive by Jack Frost is not good for diabetes device real estate.

Even though I do my best to mitigate the rash that blooms after wearing a Dexcom sensor, my sites still turn red and scaly (sometimes not for a few days, which makes for a fun surprise).  The Toughpad works to keep the blisters from cropping up, but it’s not a perfect system.  The winter weather makes it worse, causing the scales to go full-dragon and itch like mad.  Same goes for insulin pump sites.  Even though those are only stuck to me for three days (at most), they still leave a red ring and the aforementioned scales.

As far as diabetes crap goes, I love my insulin pump.  And my CGM data.  These two devices have put diabetes into context and have helped turn down the once-constantly-boiling back burner to more a simmer.

(the tools I usually use to keep my Dexcom from eating me)

Which is why it pisses me off when my skin makes wearing my devices uncomfortable.  The frigid air outside and the unnaturally dry, warm air inside has left my skin dry, scaly, uncomfortable, and unable to host invasive devices for their approved time frame.

So for the last few days, and for the next few coming, I’m taking a reluctant break from my Dexcom sensor, and will probably take a short pump break, too (though it’s less pressing since the sites are so much smaller).  I hate taking breaks that aren’t “by choice” but instead are forced by a lack of diabetes real estate.  (Yes.  Waaaaaaah waaah.)

Maybe this will be a good opportunity to tune back into relying more on my meter than my CGM.  Or maybe it will teach me a higher level of appreciation for the devices I have access to.  Maybe it will teach me to drink more water and to take colder showers and to moisturize more?  Maybe it will annoy the absolute fuck out of me?  And maybe I’ll do that to you by ranting about it?  ;)

Regardless, at least I can itch madly and apply this smells-like-a-stick-of-chewing-gum lotion all day long until my skin stops hating me.

 

Video: Diabetes Complications.

I feel like when people are diagnosed with diabetes-related complications, all of a sudden they feel like they have to hide somewhere and they aren’t allowed to talk about it, so they’re not able to get the support that they need to deal with this new diagnosis.

My macular edema diagnosis didn’t mark the end of my life as a healthy person; it just marks the beginning of a new journey with a new health condition.

You owe it to yourself to live the best life possible.  Even with whatever you’ve got.

Looking in the Windows.

Following through on these eye doctor appointments at Joslin’s eye clinic usually means carving out 5+ hours in the day.

Even though Rhode Island is assumed to have a short commute to Boston proper, with traffic it can take two hours to get into the city.  Which means that for a 1.30 pm appointment, we had to leave the house at 11 am to ensure that we arrived 15 minutes before the appointment time, then the hour and a half appointment (including dilation and exam … and waiting), and then the two hour ride home.

I could find an eye specialist closer to my home in RI, but I believe in the care team at Joslin.  They’ve been caring for me for almost 30 years, and when I was diagnosed with macular edema last year, it was caught so early that no one panicked, but everyone was ready.  They were ready to do all the close monitoring required to track this eye disease, and they were also prepared for any medical or surgical intervention, should things progress to that point.

I trust them.  My complications are “common” to them, in that they see long-established people with type 1 diabetes all the time, and they treat macular edema all the time.  My eyeballs are run-of-the-mill to them.

I have some anxiety about macular edema because it’s new to me, and scary, and I find it comforting that my eye disease is something the Beetham Eye Clinic cares for every day.  It might feel like unfamiliar territory to me, but it’s just another day at the office for them, and for whatever reason, that comforts the hell out of me.

The staff at the eye clinic are very personable, and the technician who put in the dilation eye drops and tested my vision prior to the exam was extremely kind.  Their compassion helps put the feelings of trepidation to rest.  I don’t particularly care for the personality of the doctor, but in these appointments, we don’t really talk about “the whole patient.”  The focus is on the whole eyeball.  In this instance, I am willing to give on the relationship side of the HCP/patient equation in favor of his expertise.  Besides, it was easier to feel less aggravated by a doctor who speaks more to the computer screen than to the patient because this time, the news continued to be good.

This screen is how your eye looked in December,” pointing to a swollen optic nerve and a bright, obvious fat deposit on that nerve.  “And this is how it looks today,” pointing to a screen showing significantly reduced swelling and a barely visible fat deposit.  “This is better.  Much better.”

“So I’m still moving in the right direction?”

“Yes, this is good progress.  We can continue with appointments every six months.”

Last year, I had no idea I had this complication.  The symptoms of macular edema are hard to detect unless the eye damage takes a significant turn.  I had no idea something was brewing in my eyes until it was detected – and early, at that – by a dilated eye exam and a team of excellent doctors.  Eye-related diabetes complications unnerve me, but I’d rather know about them and track them aggressively rather than be surprised by them and experience irreversible damage.

We spent hours in the car getting there, considerable time in the waiting room, and then hours in the car on the drive home.  But I’d do it all over again, and will in a few months, in order to keep close watch on this diabetes complication.  My doctors can only help me with the things I let them know about by way of routine exams and screenings.  Informed doctors make me an informed patient, and everyone being well-informed helps me stay healthy.

I’d rather hope to regain good health than to fear the unknown.

D-Blog Week: What Brings Me Down … and Then Back Up.

Diabetes has made my body broken in ways I don’t readily admit, but I am sometimes forced to acknowledged.  People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know.  It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.

Last night, before bed, I kissed my husband goodnight and tested my blood sugar.  The second-to-last thought I had before bed was how thankful I was to hug my daughter and my mother on Mother’s Day.  The last thought I had filled a fleeting blink of a moment – “I hope I wake up in the morning.”

Diabetes isn’t just in my pancreas.  Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service.

Diabetes gets right into my head, into my mind, and frays the edges of my emotional health.  I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.

It’s not a “set it and forget it” disease.  It touches every moment of every day.  It impacts decisions I made decades ago, and I worry about its influence on my health decades from now.  Even something as simple as lunch isn’t “just lunch.”  The food on my plate looks more like a paint-by-number set than actual food.  It’s not a hamburger and fries – it’s 90 grams of carbs that I need to calculate insulin for.


To be honest, this Diabetes Blog Week topic makes me uncomfortable.  Not because it’s bad, but because it’s hard.  It makes rational thoughts tumble down the rabbit hole until I’m in so deep that I’m grasping at roots to pull myself out.  It’s hard to admit that, even though I don’t feel sick, I’m not entirely “fine.“  It’s hard to talk about the parts of diabetes that make me feel sad or depressed because that’s truly not how I feel the majority of the time.

But I have felt long jags of it.  Long periods of emotional confusion where, whether I’d care to admit it or not, the root cause was diabetes.  Even though I don’t want to be defined by this disease, it does explain some of my sadness.

As I wrote last September:

“I wish I had a more gracious outlook on my experiences with diabetes, but I don’t.  I wish I felt that it was some kind of blessing, but to me, it isn’t.  It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.  I’m tired at times, but I’m not stopping.  I’m afraid, but I’m still going.  Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that.  I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do.” 

Perspective is a funny thing, though.  Sometimes people with diabetes don’t give themselves enough credit for achieving the baseline that others may take for granted. Knowing I live with a disease that has aggressive moments and many bodies in its wake, the bad days can be really bad.  But the good days are magnified, and magnificent.  I don’t know what it’s like to be pregnant and not have diabetes, but I do know that the moment I gave birth to my most treasured Bird, the joy was indescribable because I felt like I had defied odds en route to motherhood.  Small victories fill my soul because I know they are the result of my hard work.

This is damn hard work, with the reward for a “job well done” being the opportunity to do it all again tomorrow.  On some days, this relentless cycle can bring me down. But it doesn’t take much to fill me back up.

And I am grateful for a body that, despite not making insulin, still knows how to make joy.

 

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