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Posts from the ‘Diabetes and Emotions’ Category

Voices Carry.

There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up.  I identify completely with “experienced an analogue childhood and a digital adulthood.”

My journaling has gone from paper journals to blog posts, too.  I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging.  I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005.  And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard).  What’s the point in sharing my story?

Even my diabetes has made a transition from analogue to digital.  When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter.  (Note:  Glucose meters were available, but we didn’t have one for four weeks)  My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.

Glucose results were not stored in my meter but instead were logged by hand.  I didn’t count carbs; I followed the ADA’s exchange system.  Two starches, a protein, a fat, a fruit … and a headache with each meal.  My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.

Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe.  A continuous glucose monitor offers up glucose results every five minutes.  My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service.  My diabetes has gone entirely digital.

… except.

That it remains diabetes.  All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin.  Still experiences blood sugars above 200 mg/dL and under 60 mg/dL.  Exercise is still an exercise in planning and perseverance.  Still doesn’t process food physically the way that people without diabetes do.  Mentally doesn’t process food the normal way, either.  Or the concept of longevity.

Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.

And that’s what keeps me sharing my story, and sharing stories from other PWD:  it’s still not over.  We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.

Our voices carry.  Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone.  Stories change over time, too; and diabetes has been a part of all of those experiences.  When I first started writing, it was about college and dating and finding a job.  Then it became planning a wedding and cultivating a career.  Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children.  My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.

That yeah, it’s diabetes and it’s not over.  But my life is also not over.

So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness.  Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies.  The ones who write about creating life.  The ones who share the mental health perspectives.  The ones who influence policy.  The ones who talk offer a moment of “me, too.”

The ones who change minds.

The ones who change hearts.

We keep going because we don’t have a choice to leave diabetes behind.  But we do have a choice to bring hope forward.

Guest Post: A Note to My Newly-Diagnosed Self

Today, thanks to a very generous reader named Cathy Fisher, I’m able to host a guest post about being diagnosed with type 1 diabetes as an adult in the form of a letter from Cathy, to her newly-diagnosed self. 

Cathy was diagnosed November of 2003 at age 18, in her first semester of college. At the time, she was the first diabetic she knew. She has spent the 13 years since her diagnosis writing about diabetes. Cathy is also an entrepreneur and avid traveler living in Lisbon, Portugal, and I’m honored to share her words today.

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Dear Self,

You were diagnosed 13 years ago, during your first semester in college. You had just turned 18. You passed out in the dining hall at breakfast, in DKA. Do you remember waking in the emergency room, doctors hovering above you, blurred images like scenes from a movie? The thirst. The phone call to Dad, all terror. The CD mix from Lauren, “Get Well Soon.” Your first episode of Saturday Night Live from a hospital bed.

You struggle(d). And you’ve learned/are learning. There’s so much I wish you had known from the beginning, and so much to keep in mind still. Here is what I can put into words:

There’s knowledge. You’ll wake in a hospital bed with a new identity to own – “Type 1.” There’ll be so much to learn. How to fill a syringe, the difference between bolus and basal, what the heck a carbohydrate is and how to count it (please learn this one ASAP, it will serve you well). Etc. Etc. Etc. These are all tools. Seek and use them.

Seek wisdom. Book knowledge is only part of the story. Your body will teach you its own truth, a sort of wisdom that doctors can’t teach. Be present for what your body has to say – how different foods make you feel, or how to sense an oncoming low. How to recharge emotionally. Be receptive to your body and mind’s own insights. They can be more important than what you can get from a pamphlet or Google.

Respect your body. Use your body in every way that you can … seek adventure, explore, and do what you love. Go backpacking in Peru, dancing with friends, running by the ocean, for a sunset glass of wine with Pete. Pull an all-nighter, be a student of yoga, try new foods, get lost walking through a city. Catchphrase: with respect. Cathy, it will take you years to learn this, but not all limits need to be pushed. Remember that time you partied on a Friday, ran a half marathon on Saturday and went skydiving on Sunday? That was probably too much. Treat your body with tenderness. Can you find the place where adventure, challenge and harmony meet?

Love yourself. Love your beautiful brilliant diabetic self. You have always been enough. The day you were born with a perfect pancreas. The day your pancreas began to fall apart. That time you “cheated” (could we call it “excursioned”?) over tiramisu in a hostel in Puerto Montt. You are inherently wonderfully made.

Own it. Diabetes contraptions and all. Rock your glucose sensor anywhere that works for you. Clip your pump to your bathing suit bottom, give yourself injections on the subway as needed, and understand that your diabetes paraphernalia can be a sexy thing. And if you ever get weird looks, never underestimate the power of Sass (No, this is not an iPod clipped onto to my hip and INSERTED IN MY SKIN) and teaching opportunities (It’s for diabetes – want to see how this works?).

Make love, not war. Sass can be an ally, but keep your feistiness in check. Don’t take feelings out on diabetes! There are days to hate it, and I hope most days you can accept it. Try to make friends with it sooner rather than later.

Humor helps. Sometimes, all you can do is say “Oh shit,” shrug and move on.

Yes, you can. You have never let anyone tell you that you can’t. You go, girl. Keep it that way. Because yes, you truly can. You can do what you dream of, with or without diabetes. Be a person you are proud of, explore, reach for what’s important to you, set goals and reach them, make mistakes, learn, love and be loved. There is a part of you that is diabetes neutral. Listen when it tells you: yes, you can.

Inspire yourself. Look for inspiration everywhere. Truffaut, Zadie Smith, paper journals, Tokyo, a place called Cherokee, yoga, learning, travel, dawn, morning coffee, the ocean, solitude, people. Diabetes can be heavy, so fill yourself with what inspires and nourishes. And when you do this, can you see the world through a lens of wonder?

Seek community. And lean on it. Friends and family, near and far. The diabetes community, online and in person. Support groups. Your doctor, nutritionist, diabetes educator, psychologist. Putting yourself “out there” can create the most unexpected and meaningful connections.

Perspective. This will be your greatest tool. Your diagnosis was crushing. You felt profound grief for the first time. But you’ll find moments of perspective. When you do, hold onto them, they will humble you. The question will shift from “Why me?” to “Why not me?”. This will feel so good.

Rock on,
Cathy

  *   *   *

Thank you for this amazing, introspective letter, Cathy.  Hopefully you’ll inspire others to pen one of their own … working on mine now.  

What to Work On.

I’ve gotten lazy in my diabetes management.  And I’m not proud of it.  My recent A1C result was still in my goal range but not where it was a few months ago, and I’d love to return to that level of control.  Thing is, I’ve gone soft when it comes to following through on my daily diabetes duties.

Yeah.  I’m at that point in the postpartum recovery thing:  finding ways to up my diabetes game.

I can check two things off my to do list with confidence:  I wear  my Dexcom every, single day and I also have been on top of my doctor’s appointments.  Those two things get big, fat gold stars.

Other stuff needs some grooming, though.  Here’s my wishlist:

  • Check fasting BG immediately after waking up.
  • Calibrate CGM right when it requests calibration.
  • Pre-bolus at least 15 minutes before eating.
  • Exercise 3 – 5 times a week.
  • Sleep more than 5 hours a night.
  • React faster to the high alarm from my Dexcom.
  • Rotate my device sites better.
  • Remember to eat more than coffee before 1 pm.

Hmmm.  That’s a lot.  Plan of attack for each:

  • Check fasting BG immediately after waking up.  We just moved the little Guy out of our bedroom and now he’s sleeping in his crib in his own room, so I have a little more time (3 min versus zero min) in the morning before I have to run and grab him.  I need to return to the habit of keeping my glucose meter on the bathroom counter and using it before I brush my teeth in the morning.
  • Calibrate CGM right when it requests calibration.  Ugh.  This just requires being less of a lazy tool and just checking/calibrating ASAP instead of ignoring the little red blood drop.
  • Pre-bolus at least 15 minutes before eating. This one is admittedly going to be challenging, as my schedule is a little non-scheduley these days.  My son is a busy little creature and also unpredictable, so it’s challenging to find the “right time” to do things like change out my insulin pump, eat breakfast, schedule conference calls.  But as he gets older, he does seem to be settling into something resembling a pattern, so maybe this will get easier.  I’ll try to pre-bolus.
  • Exercise 3 – 5 times a week.  This one is already going in the right direction.  As mentioned, I joined a gym and that gym has childcare, so there’s no excuse.  Except days like over the weekend, when I was away for work, or today, when the little Guy is so sniffling and booger-gross that I don’t want to bring him to the daycare and expose any other kids/adults to his germs.  We did go for a walk around the neighborhood today, clocking in at least a little bit of exercise, so that helps.  The weather warming up will help here, too.  This bullet point is one I’m putting like half a gold star on.
  • Sleep more than 6 hours a night.  OH HA HA HA HA.  The baby thinks 5.30 am is when human beings should wake up.  The early morning hours are gorgeous and I love the quiet of being awake that early, but around 10 pm my body starts to give up on doing body things, although I rarely make it to bed before 11.30 pm.  I need to work on this sleep thing.
  • React faster to the high alarm from my Dexcom.  Again, this one is something I just have to DO.  No excuses and no reason not to.  My high alarm used to be 140 mg/dL (pre-pregnancy and during pregnancy), but I’ve moved it to 180 mg/dL in the last few months.  I should be responding to 180s.  I will work on this.
  • Rotate my device sites better.  Yep, this is also a need.  My thighs have become a permanent home for my Dexcom sensors, but I am okay with the back of my hip or maybe my arm.  I’ll try to get creative.  As far as pump sites, I’ve been working on rotating those better, too.  Maybe it’s time to try a lower arm site?  (Has anyone ever done that and does it hurt??)
  • Remember to eat more than coffee before 1 pm.  Yeah, this is another whoops.  My mornings are generally a bit crazy, and sometimes I’d rather keep my CGM graph steady instead of interrupting it with breakfast.  But this is backfiring because I then get so hungry around lunch time that I eat the fridge, causing a nasty post-lunch bounce.  Moderation here.  Eat regularly throughout the day and I’ll be less likely to unhinge my jaws and devour the contents of the cupboard.

I hope writing this crap down will help up my accountability and will inspire me to keep moving forward.  If I can make one or two of these become habit in the next few weeks, I’ll mark that as a success.  Because backwards is all gross and disgusting feeling and also it looks like there’s a c-section back there and I am NOT going back to that.

Twelve Years Old.

My blog turns twelve years old today.

Twelve years ago, I was a twentysomething mess wondering if I was the only PWD who wanted to connect with other like-pancreased people.  Twelve years later, I’m a thirtysomething mess who has found her peers and benefitted from those connections in ways that far surpass any drop in A1C.

Grateful doesn’t even begin to touch how I feel about the last 12 years.  Thanks for being part of it.  And for making the journey with diabetes one we’re on together.

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.  

  *   *   *

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.”

  *   *   *

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

Click to make a donation!

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.

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