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

The Last 24 Hours A Tale of Harrowing Adventure, Terrifying Dislocations, Bravely Fighting Bureaucracy , and Whill Wheelchair Joy: A Ehlers Danlos Day

1. The last 3 days I have left my bed for the bathroom and for Korey my rock star of a physical therapist who tries to train my bones to a more medical textbook look than the art history Picasso thing they usually go for.

Did Google search for Picasso body was NOT disappointed so very Ehlers Danlos

Did Google search for Picasso body was NOT disappointed so very Ehlers Danlos

2. There is crying. Crying in public. Crying at my pain clinic. I do not do this. There’s no crying in Ehlers Danlos (If you do not get the League of Their Own Reference please dear child go and rent from Amazon. I promise all of your Geena Davis dreams will come true. )

3. Back to crying. Both tibias are dislocated along with a rib and wrist. Do you know what that means? No cane, no wheelchair. So I’m shuffling myself into my pain clinic like Frankenstein. Why would I not cancel this appointment take myself to bed and take a pain killer like a reasonable human? Oh my summer child...

4. Thanks to California’s new 2019 opioid laws I was given 5 days of my January prescriptions. Isn’t it the end of January you ask. Why yes, yes it is oh gentle kind child. I CANNOT miss this appointment because I need the new magic forms that allow the pharmacists who believe their degrees now have taken them from dispensing said medication into the realms of pain doctors with a say in my medication.






5. OOOOOOO more fun with laws. I now have to buy a I won’t die from an opioid overdose medication called Naloxone. Good idea? Sure, I mean I haven’t changed my meds for almost 10 years but sure it would be nice just in case. It’s $100. My insurance does not cover it which means Medicare does not cover it. Wow thanks!

6. In bed for the entire flipping night. Dogs have become immensely happy at their good fortune and snuggle. Cats have been jumping from higher and higher places in my room dive bombing the dislocated joints and smirking with evil glee.

7. REDEMPTION!!!!!!!!! My whill wheelchair is coming today. Yes. officially they cannot call it a wheelchair but my I get to. MY WHILL WHEELCHAIR IS COMING!!!!! The incredibly kind man who is bringing it will be greeted with household glee and joy that could only be rivaled by and over sugared 5 year old at a birthday party with real unicorns and an unadulterated supervised candy counter. 








Soooooooooo how was your day? Comment below.

Best Books To Read On Bedrest 2019 A Chronic Illness Blog

Nope, not pregnant but even if you are I think you will enjoy this list. I have fallen down a VERY deep YA fantasy rabbit hole in the last few months. Thank to Ehlers Danlos and multiple dislocations I have had PLENTLY of time to read:

See your favorite bedtime reading here? Have one I missed? Comment below

I finished The Lie Tree By Frances Hardinge on a library loan. Sidebar, if you are sick and have a library card PLEASE download the Libby App then finish reading this list. After finishing I went to Amazon to order it for my niece. Then I understood what kind of writer I want to be.

The Lie Tree
By Frances Hardinge

Do you ever wish you did LSD but have a drug history that ends with I smoked cigarettes to avoid eating when I was a dancer? Just me? OK fine. This book take you on a head trip. The most unreliable narrator in a book that asks what would happen if the Little Mermaid was a messed up as the man who wrote her and ended up in an NCIS episode? Possibly not for kids. I mean I gave it to my niece but I don’t have to pay her therapy bills.


The Seas
By Samantha Hunt

Oceans at the End of the Lane. I had been patting myself on the back for not buying a MasterClass pass. I was going to do everything for free on YouTube. DAMN them and getting Neil Gaiman to teach! You cannot go wrong with Neil Gaiman books. It is just not possible but if you want to fall in love with dialog , rethink what might be possible, and rediscover the childhood awe and wonder that might have worn a bit thin over the years PICK THIS BOOK UP.

What 2 Neil Gaiman books? Yes, my blog, my obsessions, my rules. If you have not heard yet Mr. Pratchett and Mr. Gaiman’s comedy gold book Good Omens is coming to streaming device near you. Now if you have heard about this and you are not rushing to the comments section screaming DID YOU KNOW DAVID TENNANT IS…. we need to talk about Dr. Who. If you did do this hello my long lost friend. Now let the quoting wars begin!

Deciding on a new wheelchair Whill: Is it worth it? Am I worth it? Other Ehlers Danlos Questions

I have been using a Quickie wheelchair with a SmartDrive for my Ehlers Danlos and POTS. With rib and shoulder dislocation I started looking for a higher tech option and came across the only wheelchair with tech called the Whill. To spend 4k or deal with what does not work? That is the spoonie question.

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.

Confessions from a Spoonie Podcast Host, Lessons from Pugs, and Therapeutic Properties of The Great British Bake Off

Confession time. I just openly cried after watching The Great British Bake Off. Before you judge

1. It was the finally. 2. It is the day before elections so I’m already an emotional wreck. It had been decades since my last cigarette and I want one so bad! I am thinking we might be able to heal any cultural divide with Paul Hollywood and gluten. 

I am always wondering where the line is. My disorder is odd in that there is no way to anticipate what my body will do. I can dislocate at any moment. I can become desperately allergic to anything at any level at any moment. So today I found the line. I went out with Kyros to go to the Alameda Flea Market. It was wonderful and amazing. I thought I would be just fine since I was in the wheelchair all day and anyone who wanted a walker used pushing me as an excuse. A wonderful day and I can barely stand today. 

I had an interview which I remembered 3 minutes before (sorry Rebecca you are wonderful). This bugged me since I had really been looking forward to this for weeks. It was still wonderful but I would have loved to have at least brushed my hair before going on air. It ended up being a wonderful interview mostly thanks to Rebecca being amazing and so much wonderful information on Australia’s healthcare system vs. US system for people with chronic illness. If you think you understand this issue and you have only every lived in the US PLEASE TUNE IN ON DEC 3!  I have been doing this podcast for a year and I still did not completely understand. This is a super shareable episode about mental health and chronic illness, crohns, and the best way to care for the spoonie in your life.

I barely got home and in bed and had to pass off the shopping to my husband to deal with when he gets home from work. My daughter has stepped up like you wouldn’t believe on her home school knowing that I was really stressed about her grades she is VERY focused sadly because she is helping me out. 

Today I am trying to take Rebecca’s advice, that my parental guilt is not productive and guilty feelings should be reserved for actions that are done for the wrong reason. I have so much to learn from that brilliant woman. 

I am also taking advice from my lovely pug who is snorting in joy that all I can manage is to laze in bed all day petting her and watching marathons of The Great British BakeOff since I am sure I will TOTALLY have the energy to knead bread. 

The Spoonie Escaped: Christmas Tree Farm Rancho Siempre Verde in Pescadero

It was one of those magical days that you know you will pay for but can’t bring yourself to care about that. I had the ENTIRE family teen included. I wont post any pictures of him, I promised but it was the day I daydream about. Great music loud enough to drown out the backseat, windows open, bite in the air, and highway 1. We even stopped off in Pescadero for my favorite coffee (Downtown Local) and a quick sprint to Harley Farms and Pescadero State Beach for a super healthy picnic of Doritos and soda before running off to Rancho Siempre Verde. 

This place has been a family tradition for year and the best place for dog watching. If you are in the area grab some food and head down. Trees are gorgeous, rope swings are daring, and hammocks are lovely. Word to the wise for my disabled people. There are things you can do in a wheelchair. The campfire is fantastic and there are marshmallows to roast. All of the trails are dirt and the hill is steep. Make sure you have an assist or a strong person with you.  

Update on HWave vs Tens Unit for Ehlers Danlos Pain Management

Update on H Wave vs Tens Unit for Ehlers Danlos Pain Management

On the upside I got an amazing opportunity to really test out the H Wave. On the bad side I had enough dislocation to REALLY test out the H Wave femur, wrist, and shoulder. So rough day. I wish I could say it was from roller derby or mixed martial arts but I’m a zebra so my stripy stumpy tail got all of this from adjusting in bed, brushing hair, and falling. 

Normally the femur dislocations are brutal. If you don’t have EDS trust me you get used to anything but those ones are the screaming dislocations. The H Wave stopped the pain completely. 10 to a 2. The pain reduction is only while in use but it is great to put on along with taking pain medication. While those begin to take affect the pain is already reduced enough to stop further spasming. None of that happened when I only used a tens unit. 

I also use Voodoo tape to wrangle the joint back into socket (not hip but wonderful on wrist, shoulder, and elbow.) It offer enough movement with enough support that I can usually pop everything back in. 

Now here is the important don’t sue me stuff: I am not a doctor please talk to your doctor, physical therapist, or any other clever medical professional before trying. Also this is only my opinion. I am not sponsored or paid in any way by these companies I just really like these products. 

Dr. Who Inspired Weeping Angel Surreal Popart by Your Spoonie Artist

A little surreal pop art terror for your wall art or a new laptop skin? A bit of surreal pop art Dr. Who T Shirt design? I took a black and white image from my travels and had a bit of digital art fun with it and then added some gold foil typography just to remind you Whovians: Don't Blink. Unless you know you're a history major or something in which case blink. Take a nap. It could be an adventure. A Great gift guide for the spoonie geek in your life.

HWave is it Better Than Tens Unit for Chronic Pain Ehlers Danlos A Review

Here’s the thing, when I start to go on this merry go round of hope I feel an almost mania of it. Granted I don’t have a lot to amuse me so this what if game can get a little out of hand. If you know me personally you are laughing a very knowing laugh. Monica on hope is an unpredictable ride. 

This particular journey began when I decided to go ahead and buy the H Wave. This is a magical machine I have VERY mixed feelings about. It is something akin to a tens unit that actually delivers. I am talking no pain with a femur dislocation while I am hooked up. No drugs just superhero creating levels of electricity coursing through my empty joints.

How could I have mixed feeling about a miracle amongst miracles? No pain and no one can scream at me for contributing to the opioid epidemic? Here is the breakdown the machine is about 2K. Take that in for a minute. I cannot imagine it cost even $100 to make the machine. This rubs me the wrong way. No insurance will cover it. They are kind enough to have a no interest payment plan  . It is one more gadget that I must collect to 1. Be the good patient who tries everything to prove I need pain meds. 2. These things really work and while I am grateful to be privileged enough to try to afford them many are unable. That make me mad. Why is it that EVERY possible new device or miracle is marked into the thousands that is suppose to help the disabled?

Enough on that rant now here is how my overactive chihuahua of a brain tries to justify spending this much. Since relief from mind bending pain can’t be enough right? I try to imagine a life with no opioids. Pain managed by electricity and herb alone. Maybe I might even be able to move up on my Muldowney Method. Maybe I can even try to work one day a month again. I swear folks if I die suddenly it will be from a moment of optimism mixed with exhaustion and guilt. 

So here it is my second full day of having the miracle machine. I have have 1 dislocated shoulder, dislocated rib, 1 sublicated elbow, dislocated wrist, we will not discuss my feet, and a dislocated femur. This might be the worst christmas carol ever. Did I mention I have Ehlers Danlos? Did I mention I have REALLY bad Ehlers Danlos?  So my body threw everything it had (pause for groans and laughter) to test the machine. Here is my takeaway:

Yes, while it is on no pain, even without meds. I could go much longer without medication. Effects last for a bit after unlike tens and the halt on pain is much better with H Wave. Then again it is 1 AM and I am up writing this because well dislocated everything and I hurt. Is 2K worth it to be able to put a pause button on pain? I leave that to you and what level of economic privilege you are at. I ran a business I know I don’t have their business model but it is a disturbing trend from thousands of dollars for wheelchair assist Smart Drives to the please don’t make me overdose trying to get my pain under control HWave chronic illness has become the most expensive hobby. I wish companies would find a way to offset their cost for those on disability. 

A Day in the Life of Ehlers Danlos: A Chronic Illness Blog

My day began by taking my ADD meds, this is an important part of the story. I have learned I must be very careful with these. Not in being afraid of side effect which lets be honest if you are a spoonie most of our meds side effect is death, insanity, or dismemberment. OK made up the last one but would it really surprise you? No I must be careful because I need to choose what I focus on with care. These meds aren’t kidding and I am a bit pit bully by nature. 

What amazing thing did I choose to spend my well earned focus on? Solving for world peace? Working on the Beto for 2020 campaign (did you really think politics would be left out? Really?) Training my lap wolf into a perfect service dog? Nope. Not a one. I didn’t even work on my novel or character sheets. I spent 3 hours weighing the best social marketing scheduler. (It’s Buffer by the way).  

I managed to do physical therapy. Hook myself to HWave for 4 hours (read review here). Go for a super short walk (thanks POTS why yes 60-134 BPM is completely normal for a sleep deprived sloth level race for less than a block. Helped the stay at home school sprite on hours worth of homework, not only am I not smarter than a fifth grader we can now safely say sixth grade is out as well. I have been going a bit feral so Kyros was kind enough to stop over to gauges my social skills since I have only been out of my bed 4 days in the last two weeks and that REALLY bites.


Mostly because I had a good day. You know the ones. That weird feeling of wellbeing. A bit of strength in the bones an odd amputation of pain. That small voice in the back of your head that wonders just how sick you really are. I even started daydreaming about travel without wheelchair. Maybe just maybe I could finish the Muldowney Method and go back to working 2 days a month, Gasp!

 

That was my morning. Then my wonderful amazing husband came home for part 2. We had a state of the union for our marriage the other day, we do this about once every few months. I told him that I felt like the family thinks I go into stasis when they are not needing me and I need some real time to be able to deep dive into daydreaming and writing. Wonderful man made sure I got it and took over the rest of homework duty and dinner tonight.  

I had the BEST time. I went down the YouTube rabbit hole. I watched Oliver Sacks talk about the nature of hallucinations and what happens when our optic nerves get bored and throw a fit. A TED talk from Anil Seth about consciousness my favorite line? We predict ourselves into being. BELIEVE that will be in a chapter of Lady Constantine’s School For Maudlin and Mischievous Young Ladies. I am also a bit of a magic geek and one of my favorite is James Randi who has made it a life’s mission to debunk mediums and faith healers. He gave a talk about one of the faith healers he had dealt with but it was the story of a man who worked for the faith healer that got me. I really think he is going to find his way into the book as a gardener. I just love the character arc of a kid who did the tent miracle shows and is looking for redemption. 

Husband remembered I had asked for some more together time that was real so we curled up and I read him a chapter of Jeanette Winterson’s book Christmas Days. Have to love a Christmas story that includes a roast turkey that could be brought back by a skilled vet.Now it is officially tomorrow and I am playing the medication game. Do I take more. How much more? I am not cool enough to die from an overdose. If I take the level I need will it interfere with what I took before. If I mess it up how long will I have to hear my mother say I told you so?