Chemo Gift Baskets DIY: How to Help When Someone You Know Needs Ongoing Treatment

Kind thoughts are lovely but you know what is better? Kind thoughtful acrtion. It is not easyt to know what to do or what will help when someone you care about needs ongoing treatment for infusions. This is a list compiled from friend who have had to undergo infusion therapy.

Please add to the list in comments below!

  1. Lyft and AirBnB Gift cards

  2. Weighted blanket

  3. Stainless Steel Water/ Tea Thermos

  4. Slippers

  5. Eye mask

  6. Audible Gift Card

  7. Ginger Chews

  8. A lovely easy to carry backpack (with device charger) to carry everything with them

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

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.

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. 

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. 

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. 

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.










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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What’s your favorite distraction from Chronic Pain? A Chronic Illness Blog

What’s your favorite distraction from Chronic Pain? A Chronic Illness Blog

I am a big fan of art. I use Procreate, worst app name ever and the BEST art app. I have tried them all so you don’t have to.. When I stop drawing you know something is up. I know Kyros is a big fan of coloring. I also discovered Libby. It is a library app where you can check out library books digitally and they return themselves. No more late fines! I also have an amazing excuse to research for my other podcast I Can’t Believe That Happened (podcast for kids and curious adults about history). Today I am researching Annie Oakley. Next I am researching Faberge eggs for the YA fantasy novel I’m writing and might as well put it into the podcast.

Speak of podcasts I have two new favorites: Fictional and LaVar Burton Reads.

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Netflix Show For Mental Health Or To Watch During A Chronic Illness Flare

Netflix Show For Mental Health Or To Watch During A Chronic Illness Flare

In the middle of a fibro flare? POTS attack? General nope not leaving covers mental health spoonie I’m done day? This is my curated chronic illness what to watch Netflix list. After you subscribe to our newsletter comment with your own favorite go to Netflix movies and tweet out or Facebook share the post to find out what are your friends favorites.

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What to watch in bed Netflix and Amazon Prime in July: A Chronic Illness Blog

Heat + POTS= Netflix and chills less sexy Netflix and melt with fans, meds, and ice packs. Hold me back!

If you would like to join me this month in the ONLY marathon I am interested in here is what will be on my list for July. 

If you have some favorite tweet @invisiblenotbrk or leave in comments I am always running out of shows.

Netflix

Best in Show

Emma (It's not saying if it's the lovely BBC or the I will hate watch it movie)

 

 

 

 

 

 

Sense 8

Escape to the Continent

The Ranch

Supernatural

Kubo

The Little Prince

Tale of Tales

Versailles (costumes, abs, and corsets)

Death Comes to Pemberley

Supergirl

Queen of Katwe

Howards End

My Next Guest

Easy Virtue (over and over and over)

Frontier

Iris

MST3K

Minimalism (obviously does not apply to watch lists)

Casanova (NO NOT THE MOVIE David Tennant)

 

 

 

 

Jessica Jones

Cosmos

The Get Down

Jonathan Strange and Mr. Norrell (fantastic book too)

Prime

Sooooo much Star Trek

Sense and Senseibility BBC

Mata Hari

The Americans

Lore

Poldark

13 Nights of Elvira

Six Feet Under

Indian Summers

Doctor Who

Upstairs Downstairs

The Forsyte Saga

Lark Rise to Candleford

Grandchester (costumes and abs)

The Newsroom

Torchwood

Doctor Thorne

Mercy Street

Downton Abbey

This American Life

Pride and Prejudice

Orphan Black

Mr. Selfridge

Makers

What To Watch On Netflix April 2018 {Spoonie Marathon}

I'm not going to put the full list here, this is what I will be watching on my long and arduous marathons...on the couch...not like that trust me.

Tweet at me @invisiblenotbrk and let's get into some serious fan theories

 

  • Along Came Polly (2004) Only if I am desperate and nostalgic
  • Cats & Dogs (2001) See above though I'm starting to think this just defines Netflix
  • Life Is Beautiful (1997) If you haven't seen it you are under obligation to watch if you have and ugly crying makes you dislocate (just me? Noone else?) you're off the hook go watch a rom-com from the early 90's you barely remember
  • Looney Tunes: Back in Action (2003) No. Just no. I left this in just so I could write NO.
  • Mortal Kombat (1995) Now this one is so bad it's good...like laughy taffy.
  • Nancy Drew (2007) If I must watch something made and geared for my daughter's age group this I can hang with.
  • Disney’s Pirates of the Caribbean: Dead Man’s Chest (2006) I am done, OFFICIALLY (yes that was a RuPaul Dragrace mention and it is not streaming anywhere but VH1, shady)
  • The Duchess (2008) I feel like this was already on Netflix and they "rerelease it to look great. Well, the costumes are great.
  • The Lost Boys (1987) 80's night!
  • Behind The Curtain: Todrick Hall (2017) Yessssssss
  • Despicable Me 3 (2017) Fingers crossed my daughter won't notice me sketching while we watch
  • Call the Midwife: Series 6: “Christmas Special 2017” I know it is one very long commercial for why we REALLY need birth control but I love it.
  •  

That is it for what is coming out that I 1. recognized and 2. could stomach watching. The fear is real, throwing up pops out

 

If none of this appeals here is what is in my queue that I'm excited to watch.

Myths & Monsters

Stardust

The Crown....again

Jonathon Strange & Mr. Norrell possibly the best mini-series I have EVER watched

Tomb Raider nothing gets me to PT like watching Angelina Jolie

Supernatural

Howards End

Kubo & The Two Strings

Grand Designs because HGTV needs a British Accent

Easy Virtue OK I don't care if you are gay straight or somewhere in between that tango scene will change your Kinsey score

Casanova The doctor before he was the doctor (did you really think there would be NO Dr. Who reference?)

Beauty & The Beast the french version. As soon as I can conquer my ADD enough to JUST watch a movie

Miss Fisher I will rewatch this FOREVER

The Shannara Chronicles because MTV does fantasy now?

The Magicians If you have not watched this PLEASE start streaming it immediately. The crush I have on Eliot is humiliating.

Minimalism I love this but is a bit of self-flagellation. I will never buy needless stuff again! Ooooo amazon I need that...did I mention ADD?

OK that is as far into the never-ending watchlist I am going. What's on your list for your nope not getting out of bed as a matter a fact thecovers have crowned me their ruler and I am unable to leave the bed days? No really I'm looking for ideas. Tween or comment.