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Posts tagged ‘mental health’

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.”  

 

Diabetes Blog Week: The Other Half of Diabetes.

The Other Half of Diabetes:  We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

(And for more on the topics of Diabetes Blog Week 2016, click here.)

“Just don’t eat sugar.”  “Take your pills.”
“Count your carbs.”  “Avoid most thrills.
“Be prepared.” ” Plan ahead.”

But this disease
Is in my head.

I can’t split up the thoughts around
My mental health and body sound.
Impossible to draw a line
Between “I’m sick” and feeling fine.
Just take my shot?  And avoid stress?
Beware of cake?  Test, don’t guess?
The list of things disease requires
Realigns my needs around desires.

“I need juice.”
“It might cause strife.”
But sometimes juice can save my life.

It’s hard to share
How much I see.
In every test,
Mortality.

Was seven then, when it arrived.
And since that day, I’ve stayed alive.
But not because
I’ve not had pie.
Or “just took shots.”
I try.
And try.

The mental health
I have achieved,
I fight for – harder? –
Than A1C.

The demands put on a chronic life
Exceed “just take your shot.”
We live beyond, we live out loud.
Mental health not an afterthought.

It’s not a disease where you just “just.”
It’s more than simply “do.”
But how I manage mental health
Will help me make it through.

The Patient Voice 2016: Bridging the Diabetes Gaps

Happy Friday, friends!  Today, Marina Tsaplina is borrowing the blog to help spread the word about an event she is hosting in New York City on March 20th.  It’s the debut event for The Betes organization, and the goal is to give rise to discussions about the emotional influence of chronic illness.  Part of the presentation will be a discussion about diabetes-related complications, which is a topic that we remain guarded and careful about, as a community.  I’m excited to see that topic cracked open in such a way, and Marina’s methods of tackling topics with creativity and passion should be a don’t-miss-it experience.

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Hi everyone! Kerri generously gave me a chance to write to you about an upcoming event for the diabetes community — in NYC on Sunday March 20.

Please join us!

Here’s some info:
Event: The Patient Voice 2016: Bridging the Diabetes Gaps
Date: Sunday March 20, 2016
Time: 1:30 – 5:00 p.m.
Location: 417 e. 61st street, Manhattan

Q: But wait– What’s this all about?!
A: This is the launch event of THE BETES Organization.

Q: Why does this matter to me?
A: Good question!

THE BETES work is about the lived experience of living with chronic illness- the mental health, the emotional well being, and the social dynamics. Our programming currently focuses on the type 1 diabetes space (I’ve had type 1 since I was 2 years old, so yes, it’s personal.)

That’s me in the video below.  It’s a short three minutes and should give you a good sense of how people have responded to our work and how it has touched lives.


Whatever your story is, coming to understand and express the rewards and hardships of living with a chronic condition, surrounded by community, is our task.

This act of expression gives validity to our narratives, and strengthens all of our voices, simultaneously helping those who we are surrounded by better understand the patient experience, strengthening communication and building compassion.

What we at THE BETES add to the mix is the transformative power of puppetry (yes, really!)- suddenly, all of this invisible stuff has form and shape, and we can all see it, talk to it, cry and laugh at it. It’s a powerfully unique creative tool.

The event will host a 45 minute section of our creative, participatory programming. One of our programs is on that big, scary topic of diabetes complications … it’s called the Invisible Elephant Project.

This is a sneak preview and world premiere of a major undertaking, where we have collected over 900 responses through a survey, and have led over 20 interviews with individuals. This will be followed by a heated discussion with a leading panel of patients, advocates, and clinicians, and will be followed by an award ceremony for our two honorees. This is in-between a wine reception with a top-notch live jazz trio.

It’s going to be incredible — but it will be even more incredible, with all of you with us. Actually and honestly, it will be completely no fun and meaningless without you.

We have people coming in from all over — so if you’re anywhere on the Northeast, and if you need a reason to come to NYC, this is it.

twitter hashtag: #ThePatientVoice2016
event registration page: http://bit.ly/PatientVoice

What Improves My Healthcare Experience.

What would improve the healthcare experience for me, as a patient with multiple health conditions?  I’m glad you asked.  (You did actually ask, right?)  A few things would help move things forward.  Here’s a thought-purging because I happened to have coffee:

Billing processes that make sense.  For example, I received a refund for mail order pharmacy overpayment in the same week I received a collection notice for the same account.  I had overpaid because their receivables system wasn’t as fast as their billing system, which flagged my account for collections when in fact I was ahead of the game.  If the billing system was synced properly with the accounts receivable system, they would have known I was in the black, not in the red.  But thanks for sending all those letters telling me I wouldn’t receive any more insulin shipments unless I paid the (not due) balance.  Fuckers.  (Also, get paid for things that make sense.  A test to diagnose me with type 1 diabetes twenty-nine years after my type 1 diabetes diagnosis is ridiculous, but required by my insurance company.  What a waste of resources.  Spoiler alert:  I have type 1 diabetes.)

Everyone be on time.  Simple, right?  If my appointment is at 10 am, I show up no later than 9.45 am, usually 9.30 am.  I’m afraid of being late.  But the HCP showing up at 10:15, 10:30 … 11 am is fine because their schedule takes precedence over mine?  I understand being late from time to time, but a 10 am appointment should not linger well into lunch time.  I like lunch too much to miss it.

Make getting paid easier.  My doctors should be paid for what they do.  If they review my CGM data, there should be a billing code that pays them for that review.  If they (by the grace of some fancy god) are able to email me, they should be paid for sending that email.  Their medical expertise is hard-earned and should be properly appreciated.  To that same end, my insurance company should pay out (incentivize!) proactive care instead of reacting to chaos.  My parents should not have had to battle for more than three test strips per day for me when I was a kid.  Checking my blood sugar should be fully covered, as it’s an investment in keeping me healthy.  Pay to keep my body whole, don’t start paying once it starts falling apart.

Don’t let money drive.  Twice in the last three months, I’ve had to make appointments with new care providers and the very, very first question out of the receptionist’s mouth is, “What insurance do you have?”  This is immediately after, “Hello?”  I would guess that this is in effort to streamline the phone tree (and triage) process, but you don’t even know why I’m calling.  And you have no idea what I can and cannot pay for.  Asking if you’ll be paid before asking if I’m okay puts financial needs in the driver’s seat … yet another driver, with the patient tied up in the trunk.

Treat me where I am.  If I come into my GP’s office with an issue that applies to their primary care practice but they consider it a diabetes-related issue and they refer me back to my endo in order to receive care, that’s crap. Treat the patient where they are.  Ask about and then make the mental health referral in my endo’s office, please.  Don’t turn me away if I come to my PCP with a diabetes need.  Sometimes it’s difficult to get time off to go to the appointment, and having the issue not even addressed because it’s deemed out of scope makes it that much harder for me, as a patient, to coordinate care.

Integrate the shit out of things.  My A1C should be sent by my endo to my primary care doctor’s office.  My pregnancy file should be sent from the high risk maternal fetal medicine office that delivered Birdy to my “regular” OB/GYN here in Rhode Island.  (Why am I still tracking that information down, almost six years later?)  My dental records should be on file at my PCP’s office.  Any visit with a mental health professional should be documented and sent to my PCP and my endo.  I’m not asking my medical teams to start a softball team, but it would be good if my information flowed in a predictable and useful way.  Instead, I have this weird folding file of information and lab work and notes in my phone, creating a patchwork quilt of my medical information that’s a little threadbare.  It would be great if EMRs (or EHRs or EMFs) actually worked for me, and for my medical team.  Otherwise, they become another tool that keeps my medical team from making eye contact with me and I’m still dragging around that folding file.

Life with chronic illness has taught me that the medical system is gross and broken.  This isn’t a hard and fast fact (see also:  you are reading this on the Internet, therefore consume with grains of metaphorical salt) but anecdotal experiences eventually harden into truth.

And that truth is my life with diabetes.

Wet Paint.

I looked at my blood sugars in the last few weeks and my worst response was my lack of response.  In reviewing the numbers, my brain only shrugged in apathy.

A year or two ago, I would have looked at the dwindling number of finger sticks and the creeping trend of high numbers and been very, “Whoa.  What is going on here, and how can I stop it?”  The rational, tuned-in part of my mind would fire up like the boiler in my old house did, whirring to life in a flurry of noise and action and suddenly I’d be warm and en route to taking control.

Trouble is, I think my boiler blew out.  I just don’t give a fuck at the moment.  I slipped without meaning to.

I used to be able to detect this slippery slide into giving-less-of-a-fuck a bit better.  There were warning signs that made me take notice and then take action.  But this time, it’s not burnout that I’m feeling.  I don’t think it’s burnout, anyway.  And it’s not depression, or at least it doesn’t feel like it did a few years ago when I had trouble finding my footing.  This feels a little different, more like exhaustion than anything else.  I’m having trouble finding balance (ironic) in managing diabetes, work, motherhood, and marriage.  The travel on both sides of the family businesses has been especially manic, leaving a lot of random, loose ends flapping in the breeze.

Blah, blah, blah, life, life, life, right?

But they aren’t random loose ends.  For me, the frayed bits are my health management habits.  And I’m not focusing on the right things.  My laundry is washed, folded, and put away but my finger sticks have dwindled down to two or three per day.  I’m bolusing off my CGM way too often, but the floors are swept.  Birdy’s book bag is ready for school every morning, complete with a note in her lunchbox, but I’m not checking my fasting blood sugar until she’s already on the bus for school (two hours after waking up, mind you).

This is not cool.  This is not good.  And this feels both irresponsible and stupid.

Which, in turn, makes me feel irresponsible and stupid.

I have no idea what my A1C is.  I haven’t had it checked in four months.  I need to schedule an appointment to have my eyes looked at in efforts to keep tabs on the macular edema, but I haven’t made that phone call, either.  The diabetes to do list is painting me into a bit of a corner, and I’m having trouble stepping onto the wet paint.

But this morning, when I sat down to work, I realized that this feeling of defeat was keeping me from wanting to do anything.  I didn’t want to write.  I didn’t want to work on booking travel or on presentations I have to give.  My mind kept jumping to the next distraction, the next thing that would keep me from acknowledging that my disease, this serious health condition, was being mismanaged by me at the moment.

Something has to change.  And it doesn’t appear that my pancreas will be making insulin any time soon.  So I need to be much better about paying attention to my diabetes care.  The cyclical nature of my diabetes apathy is such that it comes and goes without much warning and is hard to prevent.  But that doesn’t mean I can surrender to it fully.  Because I like being alive and well, and I’d like to continue to be alive and well.  So hang on … let me do some quick follow through for a minute …

… I’ve just called my endocrinologist to make an appointment, and in the meantime I’ve asked for lab orders to be sent to my local lab so I can have an A1C run closer to home.  I need to know where I stand, and how I can move forward.  I’ve also called and scheduled another eye dilation to have my eyeball status checked.  And the last phone call was to my medical supply company to reorder some supplies.

Tomorrow, I won’t change everything.  I’m still tired.  Still tired of diabetes and ashamed that I’ve let other health focus points take my attention away to such a degree.  But I need to change something.  And the first thing I decided to change was the idea that I need to keep these feelings bottled up and hidden away.  I’m struggling something fierce these days – have been for a while – and I needed to say it out loud in order to push me to actually do something about it.

So I’m doing something.  I might end up tracking that wet paint all over the house, but at least I won’t have my back up against the wall anymore.

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