I have no idea what I am going to do with these dragqueen fine art memes but I can’t stop making them. Thank you AllStars4 for so much entertainment.
here is my Farrah Moan meme.
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.
So I've been stuck in bed for 3 days out of the week. Glynda the good pug has kindly and generously given herself as an example of how to not.
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?
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.
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.
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 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.
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.
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.
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?
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.
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.
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.
You heard it here first next book project will be....Lady Constance’s School
Mischievous and Maudlin Girls
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.Read More
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.
What are your favorite books? Comment or tweet #booksinbed @invisiblenotbrk
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
Mists of Avalon
To Kill A Kingdom
Know a sick person who would enjoy? Share us!