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.

after I finish my temper tantrum I will attempt to be a bad ass

It's 12:30  I have no ue if I will post this but so many of you send kind messages to me at this time when you are lonely and in pain. So my turn. It is 12:30 and every one in my house is asleep. I stayed up to wsit for my pain pills to work. 

Standard Ehlers Danlos day a dislocated tibia, rib, and left wrist. Then I got up. My right wrist popped out. 

We all make our bargains with the universe, God, the spaghetti monster whatever your jam is to get you through the deep dark we have all bargained with it.  

Aside from family health and happiness of all the body functions I was willing to let go with grace this was off the table. I am an illustrator.  

So it's 1 am and I have a busted paw and a brain that is spinning like a weasel on schedule 1 drugs. I am scared. I am severely pussed off. And for fucjs sake I am hurting in ways my pain killers can not begin to step up to.  

Is this post inspiring? Yes. I will inspire you all to know it is fucking OK to not be inspiring. It is fine to be terrified and you are absolutely not alone even in the early hours of the morning. 

Take care everyone. Be kind and very gentle with yourselves and after I finish my temper tantrum I will attempt to be a bad ass

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. 

What happened? I overdid the Death drop On Drag Race.

What happened?

I overdid the

Death drop

On Drag Race.

‘Tis the season. Yes it’s the holidays but RuPaul’s Drag Race All Stars is back! Instead of spending the next three weeks explaining why you are in a wheelchair, have a cane, using walking sticks like a praying mantis or like Naomi Smalls but this T Shirt. So much more fun than explaining your disorder (Ehlers Danlos for me) and easier than making a witty retort on the fly. I wish I was as clever in person as I am typing.

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.  

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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