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Posts tagged ‘diabetes’

Guest Post: My Magical Disney Moment.

The power of peer-to-peer connections is not lost on the diabetes community.  While insulin remains our strongest medication tool, our mental and emotional health is nourished by connecting with like-pancreased people, making any diabetes burden that much lighter.

One of the most amazing peer support cultures in the diabetes community is found at Children with Diabetes’ Friends for Life conference.  As a board member, I’m extremely proud of the influence FFL has on families affected by diabetes.  Which is why stories like Noor’s are so powerful, because they illustrate how finding your tribe can make all the difference in your health.  

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Born and raised in the Middle East, in a culture where a lot of stigma is attached to people with medical conditions, growing up with T1D was very isolating, lonely and resentful. I was diagnosed at the age of 5, the first 8 years went by smoothly; my mom took on majority of my care load and those pesky hormones still hadn’t made their grand appearance. My doctors put me on a pedestal; I was their most “compliant” patient (yes that was a word that was actually used back then). Puberty kicked in and life as I knew it was over; the hormones took me on a never-ending whirlpool ride. I was embarrassed, tired, exhausted and done with diabetes. I was done with being different. I didn’t know how to explain that to my family and doctor. I felt like I was failing them and they wouldn’t understand, so I decided the easiest way to deal with it is to not deal with it at all. The next 3 years were a nightmare; I was in and out of the hospital more times than I can count. I was in severe DKA 3 times, once so severe the doctors said that I was going into cardiac arrest. I was in a coma for 5 days due to a hypo seizure. My a1c was 13%.

My parents did everything in their power to try and help; they tried soft love, tough love, grounding, reasoning, bribing, yelling, etc. but nothing worked, nothing fazed me. My doctor back home recommended attending the Friends For Life conference in Orlando; he thought it would be an encouraging experience. Little did he know it would save my life, LITERALLY. My parents dragged me kicking and screaming (maybe less kicking and more screaming); the last thing I wanted was to be in a room filled with “outcasts” and “weirdoes,” because you know as a teenager I was a “cool kid.”

The turning point of my life wasn’t when one of the amazing inspirational speakers talked about how he won the super bowl with T1D nor when a world renowned researcher talked about the effects of high and low blood sugars on our organs. It was on a Disney bus on the way to EPCOT with a group of teens who took me in and invited me to join. Kenny, a T1D teen, who was on top of his diabetes game, was checking his blood sugar using his forearm. I asked him the reason behind it and he casually answers, “In case I ever develop complications and need to read braille, I don’t want calluses on my fingertips.”

THAT was my wake-up call, THAT was my holy moly moment, THAT was all it took, THAT was my magical Disney moment.

Fast-forward 13 years; I haven’t missed a single conference, besides one because I was too busy having my twins (I know my priorities are off psht). I am not a mushy cheesy person; sarcasm is my language but brace yourself for this. These people have become my family, my friends for life and my squad. We have been through birthdays, relationships, breakups, marriages, childbirth, graduations, political turmoil (yes that’s a big one), highs and lows together. They inspire me everyday to do better and be better, not only with T1D but also with life in general. They made me comfortable in my own skin (after that summer I agreed to go on a pump after years of resistance); proud of the person I am with my diabetes and embrace it every day. When I’m having a screwed up T1D day, I know I can text them and they “get it.”

When I manage to workout and stay in perfect range they “get it” and understand what a huge deal that is. When I send them a screenshot of my dexcom with 2 arrows up after eating pizza, their “but that was worth it” response lets me know they “get it.” They have normalized this disease; suddenly I wasn’t alone, an outcast, or scared. They are nurses, doctors, advocates, athletes, chefs, photographers, businessmen/women and the list goes on. They proved to me that you can be anything you want to be and be amazing at it, in spite of the struggles.

That is the power of a community.  This is what they meant when they said “it takes a village.”

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Noor Alramahi has been living with diabetes since the age of 5 and since she wrote her own bio, I’m going to paste it here in full.  Mostly because she adds “had twins” as this NBD sort of thing when it is SUCH a BD.

“I’m a 28 year old curly brunette who’s in love with Tiramisu and Justin Timberlake. I was diagnosed with diabetes at the age of 5, since then I have learned to play piano, played varsity soccer, competed in horse jumping, travelled to more than 19 countries, had twins and can’t think of one thing that having diabetes has stopped me from doing. I am married to my best friend and have 2 year old boys. I have been part of  CWD FFL staff for the past 8 years, I also help run their social media platform. Five years ago CWD FFL inspired me to leave my corporate job and join the T1D nonprofit world and focus on helping people. I work as the community manager at Carb DM and am the co-founder of T1D females group in the family planning, pregnancy and post pregnancy phases called Sugar Mommas

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Thanks for sharing your story, Noor!

If you’re interested in seeing how Children with Diabetes can change your life, check out the website and consider coming to a conference.  If you already know how Children with Diabetes can change your life, please consider donating to support the organization.  And if you’d like to share your story about how the support of CWD has influenced your life, please email me at kerri (at) sixuntilme (dot) com.

Plan Your Conversation.

“Do you understand everything we’ve talked about?”

Nods.

“Do you have any questions?”

Shoot.  I did, on the ride up here.  I had a whole pile of concerns and questions, but they disappeared awkwardly upon sitting in this chair.  And sometimes, even when I remember what I wanted to ask, I end up somehow caught up in the flurry of discussing medications, reviewing lab work results, physical examinations, and scheduling next appointments.

And admittedly other times my question stays at the back of my throat, either too shy to be asked or makes me feel weirdly vulnerable.

Despite feeling empowered as a patient and having a high level of health literacy, I sometimes sit in the doctor’s office and my mouth forgets to make words.

The team at the Patient Revolution (disclosure:  I’m on the board and also involved with content) has created a Plan Your Conversation exercise to help patients ensure that their concerns are addressed during their visit.

The simplicity of this exercise (created before I joined the team, so I’m not tooting my own horn 🙂 ) is where its power lives:  the action of writing down concerns and expectations makes them easier to articulate.  And hey, if you feel weird saying these things out loud, you can always physically hand the card(s) over to your clinician.  Whatever gets the words out of your face and into the discussion.

You can plan your conversation through the online tool or download a PDF of the cards to print out.  You can also watch this video about The Patient Revolution to get a feel for how storytelling is being brought to the forefront with this effort.  

Sign up for updates on the Revolution efforts here.

Seven Months.

To my Little Guy,

Suddenly, you’re not so little.

Over the last few weeks, you’ve growth-spurted in a way that’s made every plant in this house super jelly.  Pajamas that once fit with room to spare are threatening to hulk out at the feet and your appetite is already edging towards the scary things that moms of teenage boys told me.  (“Prepare to have him eat you out of house and home!!!” they said, running to their second job that pays solely for their son’s lunch consumption.)  Despite still running small for your age, you’re a completely proportionate tiny human tank.

Food is your favorite thing, after your sister and making the “pppbbbblllllltt” noise with your mouth.  Most often you can be found in the high chair eating sweet potatoes,  scrambled eggs, peanut butter and bananas mashed together (that’s your favorite this month), and your hands.  Still no gluten until you’re over a year old, like we did with your sister.

You’d very much like the cats to be your friends, but so far only Loopy will give you the time of day.  She comes up and purrs maniacally, weaving herself in and out of your reach and letting you pet (mash) her on the head.  Siah, on the other hand, is horrified by your existence and keeps serious distance between her fur and your paws.

Unrelated:  Squirrels and chipmunks seem to like you just fine and they grin at you when we go from the front door to the car.

Side eye because he knows it ain't Valentine's Day. #anachronisticbib

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I finished breastfeeding recently and you’re now on formula.  Ending breastfeeding was a difficult choice but one kind of forced, in part, by the eye injury that resurfaced a few weeks ago.  I wasn’t able to feed you because I couldn’t see or manage pain very well during that episode of corneal chaos, so you were receiving pumped breastmilk instead of being able to latch on to me.  Fast forward a few days once I had recovered and putting you on my breast didn’t produce food fast enough for you, so you fussed and freaked out.  Back to bottles of breastmilk (and formula) until pumping wasn’t an option anymore, either.  (Not being able to physically feed you myself slowed production down to nothing.  And yes, I’m writing about breastfeeding you again.  Stop rolling your eyes.)

With the stopping of breastfeeding finally brought an end to the deluge of pregnancy-related hormones that took up intense residence in my body, and that’s been a very positive mental shift.  The postpartum anxiety thing has tapered off quite a bit, in part due to cognitive behavioral therapy once a week and also the lack of hormonal influence.  (We also joined a gym, you and I … more on that in a non-you post.)  I’m feeling like I’m more capable of taking good care of you instead of feeling like I’m holding on to everything by a thread.

And with a more relaxed mindset, I’ve realized you’re it … the last little baby I’ll ever have.  Watching you grow so fast has made me want to slow time down.  Which translates into you and I reading a lot of books together, or going for walks with your stroller.  We snuggle, often.  And I like to look into your eyes and wonder what color they’ll eventually settle on.  Time goes by very quickly and I am trying to spend as much of it as I can with you and your sister.

We’re lucky to have you, little Guy.  So very lucky.  And while I want to enjoy the little friend that you are, I am looking forward to seeing whoever it is you become.

Now go to sleep.

Love,
Mom

Emergency Plan.

Was just 106 mg/dL.  Tumbled fast to 40.

Took minutes.  Felt like seconds.

Dizzy.

Wait – get phone.

Put the baby in his crib.

He’s safe in there.

Already drank juice – plenty of it – now wait wait waaaaaaaait.

…. waaaaaaiting.

Wall edges seem wiggly, like if I poked them they’d shudder like Jell-O.

Baby is safely in the crib, giggling and playing with his feet.  I sit on his floor with my phone in my hand, ready to make a phone call to a neighbor if the waves of confusion start to erode my mental shore.

Briefly wonder what I’d say if I called.  “Hey, this is Kerri.  Can you come over?  I feel like I’m going to pass out.”  I’m sure I’d try to sound casual when casual is not how I feel.  I keep 911 dialed so if I need to just hit the call button, I’m ready.

Emergency plans.  I have them.

My tongue becomes less thick, less clumsy in my mouth.  I flex my fingers, which are attached to my still-shaking hands.  They feel responsive but like their wings are still clipped.

Juice starts to change the course of my blood sugar.  CGM alarms still blaring from my phone, less urgently now.  Walls seem less gelatinous.

Baby burps and then laughs at his own burp.  I laugh, too, the fog of hypoglycemia unwrapping itself from my brain.  I remember that it’s morning.  That it’s a week day.  That I’m due on a
conference call in 20 minutes.

CGM shows me a comforting arrow.

Emergency over.  Status quo returned.

Before I retrieve the baby from his crib, I grab a cloth and clean up the juice that leapt from the glass while my hands were birds.

 

 

Cauliflower Rice.

Not a cook.  Nope, not me.  Which is why this recipe for cauliflower rice was so useful, because it requires little thought, little cooking, and very little insulin.

Cauliflower rice

  • Buy a head of cauliflower.  Become friends with it.  And then rip it into small sections, keeping hold of mostly the florets (the tops of the trees, in Bird terms) and discard the stiffer stems.
  • Rinse the florets.  Dry them.
  • Put them in a bowl and mix with a little bit of olive oil and salt, to taste.  Also add garlic, if you’re gross.  (We’re gross.)
  • Take a food processor, if you’re one of those fancy people who has a food processor, and pulse the florets for 20 – 30 seconds in order to reduce them down to the teeny rice sized bits.  If you’re not the fancy type who has a food processor, take the blender and use that.  And if you’re full analog, grab a giant cheese grater and grate the florets.  (This last option will take a long time and you may be adding finger to your rice, so choose wisely.)
  • Fluff the “rice” with a fork and put into a bowl.
  • Take a picture of the bowl and realize it doesn’t photograph well, but put it on Instagram anyway.
  • Realize the whole process took four minutes and high five yourself for making such a healthy thing in minimal minutes.

Cauliflower rice

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At our house, we used the cauliflower rice as a base for our eggplant parmesan, replacing the pasta.  I won’t lie and say it tastes just like pasta, but I won’t lie and say it caused a wildly high blood sugar, either.  We had eggplant parmesan that required 1.8u of insulin to cover it (mostly for the pasta sauce carbs).

Most recipes online that I saw clocked the cauliflower rice in at 5 grams of carbs per cup, so that’s the ratio I used to calculate my insulin doses.  Which means I did not bolus at all for it, since I only had a half a cup and my I:C is 1:12.

WARNING:  If you put it in your fridge overnight, even if it is in a tightly-sealed tupperware container, your whole fridge will smell like gas.  And not the “runs my car” sort of gas.   Beware.  

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