Perfect Gift for the Fairy in your Life {A Spoonie Stays Home}

Popart Surreal Psychedelic Pastel Fairy in Anime Style In a Mirror Bubble

Switching from Iphone to Google Pixel 3 Has Been Very interseting for my Art.The fairy illustration is from my children's bedtime book A Fairy Goodnight. After getting stuck in bed again (Thank you Ehlers Danlos) and switching from iphone to google Pixel 3 and getting to play with some new photo editing apps I made a popart version of some of my fairy illustrations.

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?  

Spoonie Illustator with a Knitting Hamster Illustration recovering from Inktober and NaNoWriMo

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Writing for NaNoWriMo and Inktober are over, what does this mean ? It means I will be in a creative whirlwind of writing Lady Constantine’s School For Maudlin and Morbid Young Ladies and illustrating Hector and Magnus the quarrelsome hamster brothers who use to be human magicians before a fight got our of hand. Remember when your mom said it’s all fun and games until someone is turned into a hamster? Well maybe not at your house but in a magician’s house it is a very common saying.

there might be a few less episodes so enjoy catching up and I will ramp back up in January. Also check out my other History Podcast for kids and curious grownups : I Can’ Believ That Happened. 

A word on honest podcast reviews, thank you, sincerely chronic illness podcast

A word on honest podcast reviews, thank you, sincerely chronic illness podcast. I really appreciate your input. Please benipain message the podcast I would love to interview you or help you start a show. Warning, when my ehlers danlos and chronic pain starts up I get shrieky I am sorry! This episode has recommendations for chronic illness podcast if this one is not for you! Thank you for listening. If you like please subscribe and share.

A Very Bad No Good Terrible Day With Ehlers Danlos

I don’t often feel like this. I work hard at staying on the uptick but here’s the thing, for the last week I had only a few days out of bed. Today I found out my hand bone is sinking below my wrist and in physical therapy I managed to pop out four joints some that had just been relocated. I put on red lipstick today. When I put on red lipstick shit is getting real. My aesthetic leans more to wow you look great you brushed your hair. Is that a new sweatshirt you’re wearing? Are those the fancy Birkenstock’s. If I have redlipstick on I am trying. 

I am a bit heartbroken today. I have seen hand surgeons and rib surgeons. Each of them shrugs. I keep hoping there must be someone who can do something. It is a level of optimism even I feel silly with and I don’t often let myself think about possibilities. I use my energy to accept what has not been able to be changed.  

This last fl;are has leveled me. Spirit and body. I want a fucking chance at breathing without my rib flying. I want to go to see my daughter at her practice today. I want to energy to debate with my son. I am so very sad today. I am scared of hope but I really want it today. It seems as if the idea of decades like this is so VERY tiring. I want better. 

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To pounce or not to pounce on person on the ground: A Cat's Dilemma

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This is my view as I’m in the floor doing my physical therapy. She seems to be deciding what would be the most amount of mischief she can cause…to pounce or not to pounce…that is the eternal question.

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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Write a Terrifying Story for Halloween Writing Prompt for the Inspired Spoonie

It’s almost NaNoWrimo (if you are doing NaNoWriMo friend me I need all the accountability I can muster! I am Cabagges+kings) and getting close to Halloween.

Some of us spoonies are living our own little horror stories and are stuck in bed needing some distractions.





I came across this twitter thread from @STOPFLEXIN and it scared me more than Cybermen. I took a minute and deconstructed it so that any of you chronic illness writers can take a minute and write your own terrifying Halloween flash fiction (or hey make it a novel I won’t stop you).

Read Original Twitter Story


How to terrify



Act I the set up


Give the backstory with a terrifying detail that will be innocuous but will come back in Act 3 to give the story validity. She was a witch-not a nice one-she drowned.

Does this GIF help? No, no it does not. Do I have an unhealthy fixation with all things Buffy? Why yes, yes I do. Thank you for asking.




Act II Everything is fine? Why worry? What this Ouija Board is a ty.


Set up a normal scene with a level of innocent mischief we can all see ourselves doing in a scene we can see ourselves in. home alone-find Ouija board








Act II part II scare the life out of them but slowly Mwa Ha Ha

The horror should only be terrifying because it should be not because it is- All the lights go off-A knocking that won't stop-A face in the window-A figure in the backyard-Do not forget details from the protagonist. Heart-breath-belly-nerves. If you have never been traumatized think in terms of EVERY sense being at super human levels. Remember fear is a super power,




Act III Resolution with a question



It should be almost explainable but should push the envelope almost off the table of credibility.

Police (authority lends credibility) or parents come back to find nothing amiss (no break ins but a window on the third floor with no trees or ladders is wide open but WHO could possibly get in that way) but the hall is full of water. Not the bathroom but the hall outside of the protagonists bedroom. Remember drowned witch in act 1?


Th Breakdown Cheatsheet I don’t have time for your geeky GIFS and paragraphs.

I hear you my fellow ADHD spoonies I too have the attention span of a gnat with a substance abuse problem. I have you covered:



Act I what should I be scared of and what detail will I have to believe in the end

Act II set up the scene to scare Me. Where is the victim? What are they experiencing that would normally not be scary?


Act III Aftermath. The scene when it is safe? Unload the detail from Act 1 that a credible source finds and make me believe.


Alright then you have it. Plug and play turn it up or turn it down depending on your audience.

Put your flash story or story idea in the comments and join me at NaNoWriMo for team We Can’t Leave the Bed so We Might As Well Write. Ok it needs work but join me anyways. Find me at Cabagges+kings. Friend me I get lonely.










Disappointing people & Chronic Illness A blatant call for ear scratches & tummy rubs

Disappointing people

& Chronic Illness

A blatant call for ear scratches

& tummy rubs

Books For The Bedbound Spoonie: A Chronic Illness Bog

What are your favorite books? Comment or tweet #booksinbed @invisiblenotbrk

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If you can’t stand the idea of trying to find another Netflix series (trust me you can get to the bottom of a Netflix que) lets try going old school.

quote on a reader lives a thousand lives

Lets be fair if you have been in bed long enough to watch EVERYTHING worth watching or you are already looking longingly at your bookshelf or kindle I am going to give you my favorite lives (books) to live when you can’t get out of bed. 

Kelly Link literally anything

Samantha Hunt Mr. Splitfoot

Anything by Christine Henry (Lost Boy Might be a favorite.)

Harry Potter yes, read it again. 

A Wrinkle in Time

All These Wonders

Sidartha

Mists of Avalon

To Kill A Kingdom  

Children of Blood and Bone

Know a sick person who would enjoy? Share us!

Best Chronic Illness Amazon Purchase?

What are your best Chronic Illness Amazon Purchase?

Tweet and/or comment below and give us some ideas!

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My World Got Small and Fuzzy Again: An Invisible Illness Blog

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Yup back in bed. I had three great days. I to to walk, drive, and even feel a little bit normal. This might be one of the most frustrating things about Ehlers Danlos Syndrome is how changeable it is. You can even start to visualize your life without it s you get an hour or few days reprieve. On good days I try to see that as a wonderful thing. At least I got a few days but then there are days like this. Every move I am making has a loud crack. I sit up and my rib pops further. I tried to put on a bra and now my left arm is hanging out of its’ socket. I had to ask someone to grab my youngest and keep her until I could keep myself together (pun intended).

Sorry this is not one of my everything will be all right posts. This is a day full of questions like: Should I go to the hospital? How much color change? Is it smurf blue or has it gone full walking dead zombie grey? The big question, is an emergency? Like I’m willing to risk getting on a pain medication list or I’m willing to pay 2k for the chance of help emergency.

Will I be able to afford the ER? So this is my real life right now and the only things holding me together are my friends and cousin texting because they know I can’t talk on the phone, opioid pain killers (yes they are necessary for mass dislocations), Watching UnReal for the second time on HULU, and of course my pug. I forgot my friend and cohost Kyros who got me a Keypad that only requires me to move my fingers so wish me luck on less typos!

Update: Due to massive tibia and femur dislocations I am now full time on wheels. Watch your toes!

Do you know a sick person who might enjoy reading? Share us!

My Ehlers Danlos & POTS Have Conspired to Make My Day A Spoonie Rollar Coaster

Life is unpredictable and nothing will make that clearer than having a chronic illness.

Having Ehlers Danlos Syndrome and POTS adds a special something to the curse May you Live In Interesting Times.

This morning I was supposed to go to the Scottish Games with some dear friends. I have been looking forward to this ALL week and even tried to rest to get some extra spoons. This NEVER works BTW. My spoons have a magic way of appearing and disappearing by magic. I also have many small critters in my life that throw the rest for events into chaos.

Case in point, resting and our lovely outdoor cat came home rushing through the house meowing at the top of his lungs. NOT something he ever does. 2k and a midnight emergency vet run later and he is happily hiding in my room.

So today started out chaotic trying to pick up cat before we were charged more, Getting dressed and ready for Scottish games, get kids ready, almost out the door with my wheelchair when I remembered the chickens hadn't been fed. So back up to the girls and then I was done. I mean asleep on the chair I keep up there just for these events. No Scottish Games.

Alright fine. I'll go to Rockridge Market Hall and Flower and the B and get the meat and veggies for the week. Using my sticks and my POTS goes into overdrive. I had managed to dislocate my rib and thumb getting out of the car. 

 

 

So back at home and after an afternoon of reading Lev Grossman's The Magicians and researching boarding schools to prepare for NaNoWriMo I decide I am well enough to make some pantry staples. I might have gotten a bit optimistic but we now have: sugar cookie dough in freezer, candied almond slivers in a rosemary sea salt glaze, butter pears marinating in a ginger rosemary simple syrup I made, and the marzipan I made was just getting to the end of its' lifespan so I rolled it out put the berry caramel I made ages ago on it layered pink opalescent apples and topped it with candied almonds and honey. Just as I finished my mom called asking if we wanted to come over for dinner later and now I already made dessert. Now I'm back in bed at zero gravity setting about to fall into a youtube rabbit hole.

So that is my day: I'm going to fall over and die nope I'm doing great nevermind this is the end.