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

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.

I miss who I used to be: Ehlers Danlos Temper tantrum

I’m going to brag. It feels ok being in past tense but I was good. Really good. I am looking through my travel photos and I’ll put a link so you can see. I was showing my daughter pictures I had taken in Paris, Florence, Venice, and New York. Just looking at them makes me feel so proud that I did them and so mad at my body that I had to stop. I would stamp my foot but let’s be honest it would only mean another trip to the doctor.

i miss who I use to be. I miss making up projects and traveling or grabbing a model and making day dreams that lived in my head come to where others could see.  

 

Know a a sick person who would like to see this? Please comment and share. How do you get through the dark I miss the old me days?

Travel

ARt

Portraits

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.