Illustration As Distraction and Chronic Pain Therapy: A Chronic Illness Blog

I have been really stuck, lost even. It is like waking up from surgery. Wrestling the ether. Struggling up for air, motivation, art, my family. I have been in and out of panic attacks. Or maybe they are POTS attacks. Perhaps MCA. Google suggested heart attack or the beginning of one. Did great things for my anxiety, POTS, or MCA. In short google does not help. EVER. When it comes to am I dying or is it my chronic illness Google will kindly and blithely inform you that yes, you are indeed dying.

I digress. It has been a high pain week. Bones I thought stable laugh at my hubris. They have become adventurous ready for new vistas. It is too dark in my rib cage, too dull near the knee cap. It is so very much better on the other side. Ehlers Danlos is always a surprise.

I know I need to draw because I start biting my nails and looking for candy like a fiend. No really, there are seven year olds at birthday parties with more self control than I have when in pain. As a last ditch effort I pick up my pencil and ipad and draw util I forget my body. I make loose lines if I am free handing or start with forms if working from Pinterest and I obsess as something comes out of the shadows. I might have intentions of what I am drawing but the illustrations have their own ideas and they never bore if I get out of their way.

Chronic pain needs pain meds. I will scream that from soap boxes. But even when properly medicated my pills do not cover all of the pain. At best they can get me to a five. Creating, drawing, and writing can trick my brain into leaving off the constant screaming.

What is your chronic pain distraction? Comment Below

My First Lessons in Neil Gaiman’s MasterClass on Storytelling Thank you for the Therapy Mr. Gaiman

I’m taking Neil Gaiman’s MasterClass. I never got to finish my MA. In literature so I am doing this (You know at a saving of 20K). In lesson two he asks all of us to write down the things we don’t want anyone to know about ourselves. The embarrassing.  

You know when the universe throws pebbles at you then rocks, etc? 

Then. This week’s Magician’s episode and Elliott (sigh swoon sigh again) has to go back into his most uncomfortable humiliating memories to find a door. 

Either my entertainment is getting surreal, the Matrix is feeling especially lazy, or I have some work to do. Since I live in the US and can’t afford therapy hello there my friendly therapists!  

Yeah if you are new here I am a loud flawed individual who mercilessly uses this blog and the podcast as my own personal therapy. See look how good I am at admitting the bad sides of myself! 

I have a long history of putting artists on pedestals who unflinchingly bare their stories and scars. From the trauma of Tori Amos Me and a Gun (The anthem of every high school rape victim in the 1990’s Should I have put a trigger warning for this?) To Ani DiFranco’s abortion spoken word Tiptoe and THE BEST break up song hands down EVER Both Hands. Seriously if you have never heard it before please listen listen again then go look up the lyrics. I mean your flesh has been my pillow your bones have been my bed frame and I’m waiting for sleep to offer up the deep with both hands????? After my girlfriend left me back in the stone age this was on repeat. 

Now if you want a fun one for laughs and I do mean hold your side wondering if kidney transplants might be needed go to Let’s Pretend This Never Happened Jenny Lawson. If you want full admission into mental health in ways comedians wish they could make you laugh here it is. 

So I’m working on it. Some of you know I am also an author and illustrator but nothing I do will be true unless I look at what makes me uncomfortable. What I do not want to see about myself. Perfection is super boring but that flash of you too? I mean I might never get a chance to talk with you but you too? I’m not alone?  

There are moments of real and true in so many pieces of art and fiction and they stand out because they ring so honest and real they stand out. It is perfect because they could be nothing else.  In the Legion of Honor there was the most gorgeous painting of The Pieta. Now this  has been painted a billion times. This painting was so desperately arresting that I with my ZERO attention span stopped and stared. This was not a religious painting. This was a mother who lost everything. She was recomposing her life for after. After what she had placed in the center left. There were no cherubs no angels. There were zero platitudes. It was raw grief and her eyes meet yours daring you not to feel it to. Not over a god but over her son.

Not religious. I am at best a swirling changing chaotic pot of spiritual but that painting was not about religion. That was truth of loosing what you lean on. It was true and painfully vulnerable

Do you have any music, books, paintings that you love for their pink shivering underbelly vulnerability? Comment Below

Did you know Jameela Jamil Has Ehlers Danlos?

Did you know Jameela Jamil Has Ehlers Danlos?


Why yes. Yes I do. Trust me if a celebrity has what I have someone has called or texted it to me within an hour of the Mighty releasing the info.

So some thoughts when a celebrity who already does: life, glamour, humor, and messaging so much better than you now does your disorder better than you…

Petty? Sure. Absolutely. Have you listened to the podcast? Read the blog? Petty and snarky is kind of my jam.

Last year Lady Gaga came busting out of the chronic illness closet with platform crystal encrusted armadillo McQueen boots. Did you know Lady Gaga has Fibromyalgia?

See that is the question. That is how it is phrased but what my little opioid crisis fevered hamster on endless cycles hears is: Did you know there is this super famous person who not only manages to slay her career but stays a size 0 still dances and sings and has YOUR SAME disorder but does it in heels??? I told you I’m petty. You were warned.

Now Jameela is on Instagram stretching her cheek skin like a caramel goddess chipmunk and twisting her exquisite limbs into yogi sighing proportions all over instagram. All I can hear is look she is twisting her arm like you and she’s not screaming. You scream, and by the way she can carry off bangs.

Do these women have the right to scream their message from swarski microphones from perfect lipstick mouths? Yes, of course. It would be nice if they mentioned there are stages to disorders. That some people are more or less effected. When an invisible illness finally gets a spokesperson I would rather they not blithely dislocate with a smile. A nod to those not rocking the disorder would be nice.

In all seriousness they have to know that Ehlers Danlos is the first thing doctors google when you tell them. If now their visual is oh you dislocate but it doesn’t hurt. Or you have stretchy skin it is going to make my ER and disability visits suck. I get it they work they need to show they can work. Or hey, maybe they are affected differently.

I will say I have both. I use a wheelchair. When my elbow dislocates I scream from a mouth that might have seen lipstick in the last month. When my skin stretches it also tears (must not have had the new oxygen facial). My tibias often come out past my knees and I can spend weeks in bed watching a clock to see when 20 minutes have gone by for my meds to take a slight edge off what I will blithely call seventh level of hell pain.

I would be shocked if Jameela read this (If you are reading this I ADORE you for all of the body positivity work you have done) PLEASE PLEASE when you talk about Ehlers Danlos talk about the differences. Just because you are capable of work and leaving the house remember there are some of us struggling to leave our beds or brush our hair without dislocations. You were great at showing the other side of diet teas maybe lift the veil on the not so fashionable side of chronic illness. Or hey, come on the show.


Help me name my High Tech “Wheelchair” The End of Wheelchair Shopping for The Ehlers Danlos Spoonie

Right off the bat I want to be very clear this post and I am NOT sponsored by Whill. This is my own Ehlers Danlos Spoonie opinion and as you can expect it is a big opinion. 

So far I LOVE IT! 

Even with upper and lower body dislocations I was able to feed my pets and get coffee. My cleaning style can best be described as “There was a struggle here.” Yes, I stole that from Pinterest. Even with my clothes and dog toys in its’ way the Whill Ci cleared them all with no trouble or spilling my coffee. 

Some things to look forward to on the blog and YouTube channel will be shopping for the best car for a wheelchair user. Yes, if I must car shop I will make something out of it. 

Travel with a power chair. We are thinking of taking the Whill with us to Paris! 

Any other ideas?  

 

So I need your help as I start venturing out in the world (if you are my neighbors a BIG help would be not parking on the sidewalks=0).  

Help me think of a name for my new wheelchair. My friend has already taken Falcor which is the most awesome name ever for a mobility aide ( jen you know you are awesome). 


New name for my magic machine that can clear dog toys in a single roll,  

Comment below

Happy New Years! Invisible Not Broken A Chronic Illness Podcast Is Looking For Guests

Welcome to a new year of invisible not broken it's actually are going on our second year for the podcast and the blog.

So I have a big ask for the new year

I am looking for new people to interview.

You all have been so amazing and supportive and I'm so grateful for international audience. So I'm asking for people from other countries different Healthcare Systems to send me a note see if you want to come on the podcast and talk about your experiences having chronic illness or disability in your country. I'm also looking for experts in chronic illness and disability such as disability lawyers, pain clinic doctors, and other professionals to deal with research legal issues or really anything else that would be helpful and informative for everyone to listen to.

Send us a direct message through our guests section on the website. By the way I am writing this entire blog thanks to you talking to Google this is all done by Voice thanks to a dislocated shoulder. I assume you will all forgive me for any misspellings because I do not have the energy to edit this today and I want to get this out so thank you.

Happy New Years & Thank You From Your Chronic Illness Podcast Invisible Not Broken

It has been a bit of a wicked month and I had not been as on top of things with the podcast as I should be.

Yesterday I checked our analytics and 5K downloads this month!

Have I said thank you yet?

Thank You!

Some of you are kind enough to comment or message me about how much this podcast helps you. I will take this moment to cheese out. You guys help me too. Knowing you guys are listening and finding the podcast helpful enough to share, that means so VERY much to me.

Thank you again. Stay tuned in there are a lot of exciting new interviews and panels coming your way this season.

If you have any panel ideas or ways I can make the show better please comment below.

Have a kind, gentle, and BAD ASS New Year.

A Spoonies Guide to Surviving NaNoWriMo



Here’s my take away for the spoonie trying NaNoWriMo. Be super kind to yourself. Yes, 50,00 words is crazy just to type out let alone make them into something cohesive like a novel. Just the typing has been murderous on my Ehlers Danlos wrists.


You may want to try voice to text. Many have said it is excellent. I spend more time fixing random word switches but hey worth a try. Some favorite voice to text apps are are Dragon and Google docs.

Decide on your own goal. As far as I can tell there are no NaNoWriMo police officers that will burst through your door if you don’t win. (BTW winning is just writing the 50,000 words. Did not know that before)

Be only as social as you want. Yes, there are write in but if others make you twitch or if you physically must do all from bed go ahead be you.

Bribe yourself. I do cookie dough but that might be why I only write in my oversize TARDIS sweats. Yes, my husband is a very lucky man.

Use the forums. People are so nice and helpful and you can help too. Yes, you…helpful spoonie. I KNOW it’s super exciting.

Write something you can and want to get obsessed with.

Pinterest is very much your friend. Create a board for your story and you can capture your inspiration and characters. This is the board for my YA Fantasy book, Lady Constantine’s School for Maudlin and Mischievous Young Ladies.

If you have brain fog I promise you Scrivner is your best friend. Planning stories and writing out of order all possible. Not a sponsor I just love it.

It is NEVER too late. Start in the middle start anytime. You wrote! Something that did not exist before now does Yay you! Let’s be honest here we’re sick when else do you have control of how everything turns out unless it’s your plot in your book.

What are the ways you survive NaNoWriMo?



Ok a rough for plot for my nanowrimo attempt

The Library is Hungry

There is a school for girls that are just too much. They simply Cannot conform to being well behaved young ladies, which is just what Lady Constantine requires for her boarding school. Even though the school remembers (and has a few bookstand one Librarian) from the Library of Alexandria the teachers have been informed that this class will be different. These girls will not be learning theory of magic, they are magic.and why not in 1905 the age of wonders. Now the only real question is what happened to the girls from the other grades and what is in the library and why do people visit and not come out?

friend me on NaNoWriMo cabagges+kings

Me 1 Ehlers Danlos 0 living with chronic pain: ways to adjust your social life for chronic illness

Me 1 Ehlers Danlos 0 living with chronic pain: ways to adjust your social life for chronic illness

Me 1 Ehlers Danlos 0 a good with chronic pain: ways to adjust your social life for chronic illness. A gift of chronic illness is the people who stay are for real. These are some alterations I made to make sure I still have a social life even with chronic pain and Ehlers Danlos. Also my backyard chicken and pug. The 31 day journaling for chronic illness is https://lifeinslowmotion.thinkific.co... and the book I am obsessing on is Tim Ferris Tools Of Titans.

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Motivation Monday Quote Chronic Illness Edition: She May Be Mad But She Is Magic Charles Bukowski Quote Double Exposure

Motivation Monday Quote Chronic Illness Edition: She May Be Mad But She Is Magic Charles Bukowski Quote Double Exposure

I have my own personal reasons for loving this quote…saying it to my husband when I have been particularly off….

This black and white double exposure photo was taken a long time ago for a photoshoot I did with model Elisa Dawn. She has been a very special model and friend to me who has seen me through most of this chronic illness journey.

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The Creative Life Podcast Interviews Chronic Illness Podcaster Monica Michelle: The Tables Are Turned

The Creative Life Podcast Interviews Chronic Illness Podcaster Monica Michelle: The Tables Are Turned

Looking for a new inspiring creative podcast? Might I recommend The Creative Life? I mean I was just interviewed and here it is but wow all of her episodes are wonderful. 

to listen to my interview head over to https://buff.ly/2w5FMMa via @joannapieters and hit subscribe.

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