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#WalkWithD: John’s Story.

A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

I want to know what it’s like to walk with type 2 diabetes, and today, John, a self-proclaimed 67 year old “youngster” and currently living in the southeast Alaska panhandle, is answering a few questions about what life is like for him.

Kerri:  Thanks for taking the time to chat with me today, John.  When were you diagnosed with type 2 diabetes?

John:  I think it was October 18, 2007.

Kerri:  Did you know anything about diabetes before your diagnosis?

John:  Yes a little, I had a cousin, uncle and a niece that had type 1 and even though I was a few years older than my niece we used to play together as children and were quite close.  I was also a babysitter to her when she was young.

Kerri:  How did your diagnosis impact you, physically?  How about emotionally?

John:  I was told to lose some pounds, I was 260 when diagnosed and they wanted me down to 190.  It took me almost a year to get 196 and I found that I couldn’t maintain it and feel comfortable at all, so I let my weight drift back up to about 210 and have remained at that weight ever since.

Emotionally?  I was relieved, I was having some heart problems and it seemed to me that it was getting worse and the doctors couldn’t figure out why.   Then one of the E.R. doctors noticed that every time I showed up in ER that my blood sugar was somewhat elevated.  That led to an A1c, which was off the chart.

Kerri:  Now that you are a few years into your diabetes journey, what have you learned along the way?

John:  Quite a lot about the disease, I at first researched Type 2 only and then I read an article about how diabetes progresses in the body if left unchecked and I thought at first that it was an article about Type 1, but then as I reread the article again I realized that it did not make any difference how the diagnoses was made it was the same disease.  The only difference was in how we each contracted it.  Right now, it is known that in the PWD’s T1, the immune system attacks the insulin producing cells of the pancreas  and destroys them, and, PWD’s T2’s there are several ways that the same cells are either destroyed or made to under-perform.  The end result is a disease called diabetes.  So I then stopped looking at it as the type of diabetes someone had and started to notice how they were treating their diabetes, so that I may be able to treat mine better.

Kerri:  What makes you want to tell people about your diabetes journey?  Why do you think it’s important for people with all kinds of diabetes to share their stories?

John:  My story is going to be similar to someone out there and just maybe that person needs to know that they are not alone.  The more people that stop being afraid of this disease and start letting people know that they have this disease the more that diabetes will be recognized as a viable threat to their own health.

Kerri:  What do you want people to know about life with type 2 diabetes?

John:  What I want everyone to realize is that I don’t have “type 2 diabetes” but that I do have “diabetes” and the way it came about is type 2(reason unknown).  I treat my diabetes just the same as many thousands of other diabetics and it does not make one bit of difference what type it is.  Being a certain type is good for person to person conversations in a give and take on how we treat our own version of diabetes and it’s good that our doctors know, but beyond that it’s useless.  Living with diabetes is not easy, it takes a lot of time that I would like to be doing other things.  It often times scares the heck out of me and it is not a set in stone science, it at times does things that seems to defy all reason and it will bite you if you don’t pay attention.  It never stops and that is the worst one, it is there all the time, no letup.  But with knowledge and the right tools it can be managed and quite well, just not controlled, at least not by me.

To every negative there should be a positive, my positive is that I am in better general health than almost all of my friends that don’t have diabetes, you see, I now take the time to take care of myself, eat right, exercise.  Before I was diagnosed with diabetes I never seemed to have the time to do those things.

Thank you so much for sharing, John, and I’m looking forward to sharing more perspectives from my type 2 peers in the coming weeks. 

If you are living with diabetes of any kind, please raise your voice.  Your story matters!  #walkwithd

Looking Back: Ironmom.

This morning, Birdy and I were talking about Halloween and our upcoming costume opportunities.  “You can be Batman, mom.  Just wear a black shirt and the mask and be helpful.”  “Sure, and I can stick my pump on my BatBelt?”  She laughed.  “Or you could put it in  your shirt and be Ironman.” 

Which reminded me of this post.  So I’m re-posting it, because being Ironmom isn’t too shabby.

*   *   *

“I really like Ironman.  And Superman.  And Spiderman.”  She paused.  “But not the Hulk, because he smashes things.  Why he smashes things?”

“He gets angry and that anger makes him turn into the giant green guy, and he smashes.”

My daughter, thanks to her father’s affinity for all-things superhero, has developed a taste for the slate of superheros and supervillains.  She rocks her Superman t-shirt at school, and her Batman pajamas at home with both encouraging regularity and vigor.  But that’s the nature of her being three years old – she is learning so much every day, taking in her surroundings and chewing on them until they make sense for her.

Part of what she’s hyper-fixated on, in addition to superheroes, is the location of  my Dexcom and insulin pump.  At least once a day, she asks me to show her my devices.

“Where is your Dexcom, mawm?” she asks me, patting my leg knowingly.

“Right here, on my right leg.”

“And your pump is right here, right?”  she asks, pressing her finger against the screen.

“Exactly.”

The other day, Birdy was troubled because she couldn’t find my insulin pump in the dress I was wearing.  “Mom, where is your pump?”

“It’s in the front of my dress, here,” I said, pointing to where the pump was clipped to my bra (disco boob style).

She contemplated this for a minute, and I could see the laundry list of information she’s been collecting in the last few weeks rolling around in the dryer in her head.

“You’re like Ironman, mawm.”

“Ironmom?”

She laughed that wild, unfettered laugh of a toddler who just learned what “a joke” is.

“Yeah!  Ironmom!  You made a joke.”

#GoSebGo and #GoBionic.

Clearly, Go HASHTAGS!

This morning I wanted to share two videos that ventured their way into my inbox recently, from folks in the diabetes community who I support whole-heartedly.

The first is from Seb, who is STILL running across Canada. What’s your plan for today? Mine is to get some writing done while sitting on my ass on a flight to California. Sebastien Sasseville will be running through the Rocky Mountains on Day Eighty Billion of his solo run across Canada. Give Seb some love through Outrun Diabetes today and let him know you’re thinking about him and his journey to inspire.

The second video is from a group of parents and PWDs supporting the Bionic Pancreas.

To learn more about the Bionic Pancreas, you can click here or read this. Or this. Or this.

Go forth and watch videos.

HypoPedicure.

“Mom, can I [something something] ?”

“Sure, kiddo,” I responded.  But I had no idea what she was asking me – her words were swirling around in the fog of my brain.  My blood sugar was 38 mg/dL and my Dexcom was wailing.  Chris was a few feet away, stirring something on the stove while he kept an eye on his wife.  “My blood sugar is really low, so I’m going to sit here for a few minutes.”

“Okay, that’s fine.  Do you need some glucose tabs?” she asked, sitting on the floor near my feet.

“I already had some.  I’ll be okay in a minute.  Don’t worry.”

What was directly in front of me hard sharp edges of focus, but everything on the peripheral was hard to see.  My body was concentrating on chewing and swallowing and trying to slow down the speed of my heartbeat in my ears.  I knew stable blood sugars were coming, but they needed a glucose jump-start.

“Okay, Mom.  I’ll just do this while I wait.”

And it wasn’t until later that night, after she had gone to bed and once I was readying myself for sleep, that I realized she spent the duration of my hypoglycemic episode painting my toenails bright pink with a glitter topcoat, globs of glitter and pink stretching all the way up to my ankle.

Pros and Cons of Going Gluten-Free. (and a brief lament about the smooshed banana)

It’s been about seven weeks on this “no way, gluten!” lifestyle, and I’m starting to find my footing.  But there are still many pros and cons to balance, so I’m listing them here.  That way, I can look back at this post in a few months and be all, “Pfffft.  Whiner.  You’re in the zone now.”

Here we go – PROS and CONS of Going Gluten-Free in ALL CAPS at times because that’s the only way my brain can operate this morning.

CON:  It’s a pain in the ass, doing this.  Reading food labels for carbohydrate content and grams of sugar in pursuit of better blood sugar control is second nature to me by this point.  After 28 years with type 1 diabetes, I’m comfortable with the carbs.  But trolling labels for that bright, shiny GF logo, or reading through each ingredient to ensure that I’m not inadvertently eating gluten is a new adventure, and one that I find very intrusive.

PRO:  As a result, weight management has been easier lately.  Which I guess is a plus but at the same time, I’m hungry, so I can’t call this a total pro.

CON:  I’m hungry.  (See above.)  All the time.  Mostly because I’m unsure of what to eat, and that insecurity leads me to eat the same things all the time.  Staples like hard boiled eggs, grilled chicken, spinach salad, yogurt, almonds, and every fruit I can get my paws on dominate my days.  Menu items like gluten-free pizza, butternut squash (done with GF ingredients), and chicken soup are being explored, but my natural inclination to be a lazy chef makes this sort of exploration tougher.

PRO:  Eating the same things all the time makes me very familiar with how they map out, blood sugar wise.  So I’m best able to pre-bolus with precision and my post-prandials aren’t gross.  This is boring as eff, but effective for diabetes management.

CON:  Low blood sugars have been really weird lately, especially the ones that follow a visit to the gym.  Before going gluten-free, I’d eat froast or some other glutened up snack to keep my blood sugar steady through cardio (yes, there are other options, but I can’t pretend to have chomped on kale during a run – that would be a big, fat lie and kale hates lies).  Now, I’m erring on the side of fruit and sometimes those sugars get in and out of my system too quickly to hold me for an entire workout.  I’m still figuring out what foods work best to deal with during- and post-exercise hypoglycemia.

PRO:  Glucolift Wildberry tabs are gluten-free.

CON:  Traveling is weird now, too, keeping gluten off my plate.  Airports are not designed for people with dietary needs or preferences, especially little airports like the one I frequent here in Providence.  Finding foods that are gluten-free while on the road is tough, with little exception.  Once I land somewhere, I’m fine, but while in transit, I keep my bag stashed with snacks.

PRO:  I’m learning a lot about what foods travel well.  These gf bars are among my favorites to toss in a backpack, and while they are not as healthy as something fresh, they can stand up to traveling with me and they are more filling than the Southwest pretzels that I can’t eat.

CON:  Bananas do not keep well in backpacks.  They turn brown quickly and often end up smeared on … oh, let’s say the lid of a laptop.

PRO:  I wash my backpack more often than I ever have before, and now it permanently smells like dryer sheets.  Which is a nice contrast to my computer, which smells permanently like bananas now.

CON:  I hate being “that girl.”  The one who asks waitstaff if certain menu options can be made without gluten.  The one who reads labels before taking a bite of anything.  The one who might be mistakenly marked as someone following a “trend diet” instead of someone who is unhappily-but-smartly following through on feedback from her body.  As good as I feel off gluten, I wish I could still eat the stuff and not make waves.

PRO:  I’m learning not to care about feeling slightly embarrassed because DUDE I feel so much better.

“You’re more … you.  The change between then and now is significant,” Chris said the other day.

He’s right.  My mood/disposition/health/everything since kicking gluten out of my diet has been ten steps in the best direction.  All of the non-celiac gluten sensitivity symptoms are gone.  The “head fog” where I would forget what I was doing or what I was about to say has receded.  The numbness and tingling in my hands and wrists is gone.  The ache in my hip joints after running is gone.  I don’t want to spend the afternoon taking a nap on the couch.  My energy is back.  My face is less puffy.  I can chase Birdy without feeling like my feet are in lead boots.  It took months to tune in to how poorly I felt, but now that I’m feeling better, the change is undeniable.

As much as I miss being more carefree about food, a gluten-free diet is the best fit for me.  And after almost three decades of type 1 diabetes, what’s one more food constraint?  So long as coffee and wine remain in the mix, I’m good.

Show Me Your Pump … Or Not.

During a presentation in Duluth, MN last week, I was talking about my family and I used a photo in the slide deck that I’ve used many times before.  It’s one of Birdy, Chris, and I and we’re at some park on a sunny fall day, enjoying the sunshine.

“This is my family.  And right there – RIGHT THERE – is my diabetes.  Can’t miss it.  It’s just THERE and it’s always there.  I love this photo because it shows off my wonderful husband and the daughter I went to the ends of the earth and back for, and I couldn’t be prouder and more in love with my family.  But then there’s that reminder again, the reminder of diabetes and the intrusion it makes into my life.  Like I said, I love this photo.  But I want to Photoshop the hell out of that one part.”

Diabetes has not been a smooth ride for the last few weeks.  Unusual moments like a skunked bottle of insulin and two Dexcom sensors that rolled off my skin way too early, a few low blood sugars that fucked with my happiness a little bit … all stuff that sometimes happens, but lately it feels like it’s always something.

A relentless itchy patch left behind by a Dexcom sensor from weeks ago on my right thigh that, in the middle of the night itches so badly that I scrape at it while I’m sleeping, only to wake up and find blood underneath my fingernails sums up how I’ve felt lately.  (And holy run-on sentence!)  It’s not the actual diabetes moments – the actual low blood sugar, the actual itchy sensor, the actual hour lost to reinforcing to my insurance company that yes, insulin is necessary and should be covered – but the cumulative experience that’s a little more than meh of late.  I’m grateful for access, but having access gives me a perspective that allows for being wildly grumpy at times.  I’m worn out on the self-care crap.  I don’t have any choice but to continue to make the best efforts I can to take care of myself.  Diabetes without self-care becomes chaotic quickly, for me.

There’s no “but,” to that, no caveat.  There’s just a desire to take a sponge and wipe away all the traces of diabetes for just a few hours.

… that, and our coffee pot cracked this morning, so that’s probably not helping my mood.

 

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