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Posts from the ‘No Diabetes’ Category

Do More Good.

It’s World Diabetes Day.  YAY!  And buried amongst the bits of distressing-as-hell news crap out there will be articles about diabetes. Casual mentions of this monster that lives under our bed (and that we feed occasionally). And tomorrow, the world’s attention will twist to the next crisis.

But oh, my fellow PWD, we’ll still be on this diabetes journey long past today. And tomorrow. We’re in this for the long haul (until the days we can slap on a device and let it do diabetes for us, or until they science us up a biological cure for this mess).

Which means that we’re all in the same boat.

Which might sound a bit distressing and a little overwhelming.  BUT.

We can do something now.   We can do something to create and contribute to a rising tide of positivity and hope.  We can make a difference.

Dude.  We can do more good.

That’s what I want to do.  I want to be part of the tide that lifts all boats, so that we, as a community, can ferret out some happy and find something other than despair in our timelines.  Do more good.

There’s no hashtag.  No separate website for this.  It’s not a “campaign” and there’s not a Twitter chat or email sign up or thing you have to subscribe to.  All you need to do is take a moment and make a concerted effort to do something good, or share something good, or contribute to something good.

Donate to a cause that you find powerfully good.  Share a story from an organization or an individual that you care about.  Pay for someone’s coffee.  Say thank you when someone holds the damn door.  Give a hug to someone in your family before they need one.  Grin at someone.  Tell someone you love them.  Tell yourself you love yourself, too, while you’re at it.

Small moments can amount to big changes.  Create a moment of happiness for yourself and someone else by doing more good.  I refuse to believe that the world is actually becoming worse, not when I see so many people who are making a difference, both big and small.

We can all do more good.

Do more good.

Do more good.

Do more good.

 

Guest Post: Until Childhood Cancer is Extinct

Kate Olivia Rhoades was a sweet and clever little bird who I never had the honor of meeting but we loved regardless of distance.  She was diagnosed with leukemia when she was 26 months old.  And when Kate died, we mourned for the little girl whose smiled cracked the world right open.  Since Kate’s death, I’ve watched my friend Lindsay advocate through the pain of losing her child, determined to make a difference for kids diagnosed with cancer.  Today, Kate’s beautiful mom is visiting SixUntilMe to share the story of Kate, her cause, and how we can step outside of our diabetes bubble for a few minutes to make a difference in other places.

  *   *   *

I am so grateful to my friend Kerri for inviting me to share my story on Six Until Me. While not my first guest post here, it has been quite a while and quite a lot has changed for me since I last wrote.

Like Kerri and like many of you, I myself am a type 1 diabetic and I blogged several years ago about the struggles and joys of achieving “optimal pregnancy wellness” to carry a baby safely and to term while dealing with the pesky and high-risk nature of a diabetic pregnancy. I’m proud to say I (ok, WE) were successful and a safe baby was had.

But. My story doesn’t end there and diabetes is not the only disease that would invade my home or my family. Because after having that healthy, perfect baby (girl!) just about six years ago, cancer came calling. Childhood cancer, to be exact. Like a thief in the night, childhood cancer invaded our worlds by taking over the body of my 26 month old precious Kate Olivia.

When Kate was diagnosed with leukemia in 2013, my eyes were opened to the harsh realities of pediatric cancer, the severe lack of government funding and the overwhelming mis-informed public. Childhood cancer is NOT rare and our children were being diagnosed and dying at an overwhelmingly alarming rate. Nor is childhood cancer cute bald kids celebrating at Disney World with celebrities like Jennifer Aniston and Drew Barrymore cheering them on from the sidelines. No. Childhood cancer was nothing at all like it was pictured in the St. Jude’s commercials or the Light the Night ads. Childhood cancer was my two year old learning how to say “chemo” properly instead of “juice box.” Childhood cancer was my baby vomiting from the toxic poisons we pumped in her blood to save her before she’d even gotten her first cold. Childhood cancer was fever-watches, missed play dates, canceled holidays, fear, more sedations in her two years of treatment than most people will get in a lifetime and WEEKLY chemo for two years.

And then … once again like a thief in the night, cancer came calling again when my daughter DIED from a relapse of her cancer four months after completing treatment and just 15 hours after we learned it was back. My eyes were opened once more … this time to a purpose and a calling that we, her family must fulfill.

Kerri asked me here today to share my story and to raise awareness about childhood cancer … and to represent our smart, clever, funny, beautiful and forever four year old Kate Olivia Rhoades, our sweet girl who had a highly treatable type of cancer yet died anyway. I am writing to you all today to represent the countless number of her friends currently in treatment and who have also died because our government, our society, and our leaders don’t find them worthy of better, less toxic treatments. I “go gold” and raise awareness in the month of September, officially recognized as Childhood Cancer Awareness Month, to represent the countless children worldwide, but right here in our very own back yard, who are dealing with adult strength chemotherapy, life-threatening side effects that can last decades after treatment is done and the toll it takes on their precious young lives and futures.

Childhood cancer is NOT rare and it’s NOT fair. It is the number one disease killer among children and one in five children diagnosed will not survive. And mostly…I am writing today to plead with you to learn more about the countless types and varieties of cancer that make up childhood cancer and learn more about itswoefully underfunded past. And then? Get involved … help us raise awareness. Help us make noise so that we can be that change we wish to see in this world to re-direct its future.

Because our children deserve our best, not our leftovers.

Until Childhood Cancer is Extinct.

  *   *   *

Kate’s Cause lives here.  And Kate lives forever in the hearts of those who love her.  September is over but the need to raise awareness and change the future for kids with cancer is a life-long pursuit.

The One About the Stupid Pumpkins: A Photo Essay

(And if you want to make your own fabric pumpkins and then get your own tetanus shot, here’s the blog post with directions.)

Building a Healthcare Team

Since deciding that our family of four was the maximum number of people to be in our family (read: no more babies), I’ve been working to transition as much of my healthcare team from Boston to Rhode Island.  After almost 30 years at the Joslin Clinic, this has been a tough transition, because I’m so used to their style and routine.

As in, of course you sit in traffic for two hours before the appointment.  Of course the endocrinologist is forced to schedule three patients, all for 1 pm appointments, making everyone late and frustrated.  Of course lab work results get lost.  Of course it’s all-day project for a disease I don’t like.

… of course I needed to make changes to improve convenience and access and reduce overall rage.  Quit complaining and make changes to improve the mess, right?  Right.

Over the last year, I’ve been testing out different doctors for primary care, OB/GYN, eyeball needs, and endocrinology.

  • Primary care has been a bust as the clinician I initially chose wasn’t a good fit at all.  (She wasn’t comfortable talking about anything related to diabetes, and I need to have a doctor who at least acknowledges that my pancreas is shit.)  But I have another option scheduled for January so hopefully that doctor will be a better partner in my care.  I’ve always wanted my PCP to be the center of my healthcare team, but so far, that’s been a no go.
  • I have always had a local OB/GYN but needed care in Boston for both pregnancies, so my OB/GYN team here in Rhode Island has historically handled everything but my babies.  Now that I’m firmly in the no more kids camp, I’m back to the team I’ve used since college.  All the clinicians in their practice are a good fit, so that’s all set. They’re terrific.
  • My dentist is awesome.  I’ve written about dental crap a bunch of times here, mostly because I have very sensitive teeth and am a HUGE baby when it comes to dental visits, but the right team and their compassionate expertise has made my visits to their office comfortable.  Dare I say FUN?  (No.  Not yet.  Maybe if they design cool grills?)
  • For eyeball needs, I’ve been going to the Beetham Eye Institute at Joslin.  I trust their expertise without question (despite having the diagnosis of a complicated eyeball told to the computer screen instead of to my face, but I’m not as angry about that anymore).  Oddly enough, though, my eye complications improved to “minimal” during my last pregnancy, taking me off the “every three months” list at Beetham and reducing me to yearly.  That, coupled with some recent corneal abrasions, drove me to find local eyeball care.  I am really grateful that I’ve secured a doctor who makes me feel comfortable that he’ll detect any issues and will refer me out to another specialist if he feels my complications are beyond his ability to manage.  THAT is the mark of an incredible clinician – taking good care of patients while simultaneously acknowledging their own human limitations.  This doc is a keeper.
  • And my endo has always been the core of my healthcare team.  At Joslin, I’ve worked my way through their slate of endos since my diagnosis back in 1986 – starting in peds, working my way into the adult clinic, moonlighting over at the pregnancy clinic a few times, and then returning to adult care.  The need to move my care hyper-local brought me to an endo in Rhode Island who, aside from being a shorter drive, totally gets it.  While we’re still in the weird “getting to know you” phase of patient/clinician interactions, I trust this endo because he has many years of expertise in type 1 diabetes and also because he views my opinions and goals as important as his own for me.  This is the kind of teamwork I enjoyed at Joslin, only minus the insane commute.  At my appointment yesterday, I had a good experience with the reception/labwork staff (more on why that matters later), my appointment started on schedule (11.30 am, not noon or noon-thirty), and my endo ran through my list of questions without dismissing them.  After a few more visits with this endo, I’ll consider myself officially weaned from Joslin.

Switching clinicians is stressful, for me, and I don’t enjoy all of these mystery dates.  But I’m getting close to a team that I feel can handle all the moving parts of my health AND they’re all within a 25 minute drive, and that feels pretty freaking good.

DBlogWeek 2017: More Than Diabetes.

Diabetes Blog Week prompt for Friday:  Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

It’s been quite a week, with a pretty wide emotional range and I’m kind of DONE with diabetes.  But none of that crap today.  Today it’s about the stuff that’s not diabetes-related. It’s all the other stuff.

Since it’s late and I’m typing this out to close out my day, I’ll keep it listish because that’s easier.

  • I love lists.  I love making them and crossing shit off them and writing them out all neatly and will not keep lists in a digital medium but instead on an index card from the stack we keep in our kitchen junk drawer.  Lists are nice.  I rarely finish things that I’ve listed, but still … the listing part is nice.  Takes a crack at organizing my thoughts.
  • I’m not organized, though.  Not even a little bit.  I have grand plans to get all my thoughts lined up but they roam around unsupervised all the time and I struggle to complete my to do lists because they grow like those dinosaur eggs you put in a glass.
  • Group texts are my arch nemesis/favorite past time.  I have a tendency to wander off pretty far from the initial topic and almost always include a rotten typo (because I use voice-to-text all the time and today almost sent a message that included the phrase “turd farm” instead of the intended “turf farm.”  Different visual entirely.)  Apologies specifically to the women in my neighborhood, who are patient with my wandering narratives.
  • Suddenly, Blood Mary’s are my favorite drink.  My father is a fan of the Bloody Mary and I always thought his drink choice was horrible, the choice of a vegetarian vampire.  The red tomato juice, the horseradish, the celery stalk … blech.  Until it suddenly wasn’t blech and and I wanted one.  And now I have become the vegetarian vampire.
  • I constantly crave music.  Bands like Elbow and Radiohead, singers like Alexander Wolfe and Damien Rice, Muse, Bat for Lashes, alt-j, Arctic Monkeys, Stateless, Fleet Foxes, Jay-Z, Rage Against the Machine, Cake, Halfmoon Run … all of it.  Any of it.  I love loud music and have it on throughout the day.  I can’t write without it.  I can’t run without it.  I want to crawl around in your Spotify playlists.  Sharing music recommendations and new favorite songs are among my favorite things to do.
  • I appreciate where I live.  I love my state (#rhodypride) and the town we live in.  I love the beaches and the bike paths and the parks.  I love our neighborhood – we hit the jackpot with the folks we live near.  I love raising my children in a community that believes in community.  I’m a big fan of this little state.
  • I can’t dance.  I used to tap dance (for 15 years) and I was pretty good, but any other kind of dance becomes a desperate please for my legs and arms to stop embarrassing me.
  • But oh how I can make the yarn dance.  (That was a goofy segue.  Even for me.)  I’ve been crocheting since I was 13 years old, a student of my beloved grammie’s, and have taken on her craft as my own.  Currently, baby blankets are my jam as so many lovely friends are expanding their families, and my own two kiddos are covered in yarny cocoons.  I really like combing the internet for crochet patterns and I love everything that Amy Ermel posts.
  • I miss reading books.  I used to read constantly.  Having kids and writing so much has eaten up a lot of reading time, unfortunately.  I’ve had a Jodi Picoult book 3/4 read for the better part of four months and I haven’t made the time to FINISH IT.  But I just decided to finish it this weekend.  Added it to my analog list.
  • I take at least a dozen pictures a day.  Of frogs found in the front yard.  Of my son, while he sleeps in my arms.  Of my daughter building a fort underneath the dining room table.  Of the cat when she’s standing at the end of a long hallway and scratching “RED RUM” into the hardwood floors.  I’m snappity-snap all the time and most of them won’t ever leave my camera roll but I look at all of them when I’m on planes.
  • Fantasy lunch table?  Roald Dahl, Thom Yorke, and me.  And my grandmother, so I could introduce her to my daughter and my son and show her how much of her stubbornness and kindness and silly tendencies are in my children.  Also, I’d love to hear what she’d think of Thom Yorke.  (“Why was he so fidgety?  Does he need a hug?”)

I have loved reading all the More than Diabetes posts, because they help round the DOC out.  We’re more than our numbers.  And more than our disease.  We might be a bit Thom Yorke-ish, potentially in need of a hug.

 

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