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Posts tagged ‘chronic illness’

Guest Post: Mindy Bartleson on Chronic Illness, Mental Heath, and Removing the Rose Colored Glasses

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much.  Today, she’s sharing the why behind her efforts on SixUntilMe.

And if you’d like to help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word.  The Kickstarter ends a week from tomorrow.

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Usually, there are multiple things going on. It might be visible. It may be shared. It could be a secret- only shared with your inner circle. Even without a mental health diagnosis, mental health is an important thing to keep in mind with chronic illness, like diabetes. Hell- even without a chronic illness- mental health is important. Sadly though, it’s something that isn’t often talked about or taken seriously. It’s taboo. It’s not important. It’s hard to understand. You name it- we’ve heard it. Social norms also play a role. We’re supposed to be productive members of society and not acknowledge anything negative.

Over the years, I’ve adjusted my blog.. I wanted to talk about it all together- the type 1 diabetes, PCOS, endometriosis, anxiety, OCD, ADHD, (other diagnoses), loss, and more- because like the title of my blog says- “There’s More to the Story”. I wanted to talk about it honestly- the good and the bad. I didn’t used to do this. It wasn’t until diabetes burnout hit me with full force when I was in college. That’s when I realized something. Up until that point I wouldn’t acknowledge the negative parts of diabetes- of chronic illness. I thought I had to pick a viewpoint and couldn’t move. I had to either be positive or negative so I found myself not only lying to the world around me, but also to myself. That’s when I switched how I approached my blog and life.

About two years ago, I realized that I was applying rose-colored glasses to a lot of things in my life already at the age of 22. I was starting to say that all the bad things were worth it or completely ignoring them. I firmly believe that yes I can do it. That I (and others) can get through things. But I want to acknowledge that it can suck. That it’s hard. That maybe there are systematic things that play a part too. That I should still check my privilege. That’s what life is. It’s what I needed to do.

We need to talk about and share those moments- not just for ourselves but for other people who need that honesty to know that they are not alone. We need to share the moments where we sit crying on the bathroom floor because diabetes wouldn’t cooperate all day and someone made a hurtful comment. Then we can share how we got back up to change that pumpsite and maybe to tell that person who made the hurtful comment how we feel. The how is so important. The fact that we get back up is so important. But- maybe someone needs to hear how we felt when the tears hit – how we felt when you just had enough – how it felt to let it out. We need to do that.

About two years ago, I made the decision to start a project. I decided to write a book about chronic illness and mental health. Everything I’ve talked about so far is what I applied to writing this book.

I’m aiming to balance the positive and the negative together on growing up in general but also with chronic illness and mental health along for the ride. I talk about moments of why I sat on the bathroom floor crying and how I got up. Of course I talk about more- and it wasn’t always a bathroom floor.

Over the past two years, writing this book has pushed me to process a lot of my past. All of it. I’ve seen how far I’ve come and realized the importance of so many situations.

I’m pursuing self-publishing. Because I recently graduated college (and put myself through it so I have loans) and have a social work degree, I’m utilizing crowdfunding to make this happen.

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I’ve put my money where my blog post mouth is and backed Mindy’s campaign, as I think this resource would be a powerful one for our community as a whole.  Mental health is health and I agree it needs to be talked about, shared, and cared for as openly as diabetes.  

For more from Mindy, you can follow her on Instagram, Twitter, Facebook, and her blog “There’s More to the Story.”  

 

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.

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.

I’m Not.

I’ve never had nightmares like this one before
Problem is, when I wake, it’s still there and I’m floored
Because every damn day there’s another news flash
Showing me that some leaders just follow cash.
I used to be iffy, and then was concerned.
But panic is what this new paradigm’s earned.

I’m a person and with me comes chronic disease
Not my fault but it’s mine until I cease to be.
I spend many hours maintaining my health
Despite big bites that it takes out of our wealth.
I have so many bills, premiums, and copays;
I sort them by health issue, person, and phase.
Hours on phone calls that are beyond numbing,
Yet bills for the baby I lost keep on coming.

“It’s not covered.” “Denied.” “You’re a burned down house.”
I wish I was that squeaky-cured research mouse.
“You can enter this risk pool.” But I need flotation
Not rejection from this powerful first world nation.

I’m scared and I’m nervous but I am empowered
Refusing to believe our whole country is soured.
I stand with my peers and I hope for the best
And until this is sorted, I refuse to rest.
I marched in a march and written my reps.
But there’s more I can do. There’s a series of steps.
Time to act, to rise up, to realign thoughts.
I know there’s a system.
It’s broken.

I’m not.

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If you know of places where people can take action and raise their voice, please leave links in the comments. Liking a Facebook status or a Twitter post is good, but making phone calls, writing letters, and standing up for your rights can be so much better.

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

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