Georgie

Great Work

Revisado: 12-10-22

This is a great addition to books on the topic of disability. I liked that the book focused so much on ableism, even outside religion. I’m not a religious person, but enjoyed the content of the book overall. I have personal experience of being stopped by strangers while minding my own business and then asking if they can pray for me. Complete strangers who assume I need prayers just because I’m disabled while I’m simply trying to just get my groceries and get home.

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Best Book on Autism I’ve Ever Read

Revisado: 08-21-22

This book is fantastic and I’ll be recommending it to everyone. I love how the author talks about autism generally and also ties it back to his experiences and other autistics experiences. I love that so many different experiences were included in the book. I love that he talked about autism in the context of being queer, trans, and BIPOC. I relate a lot to the gal with POTS and Erythromyalgia as I have both and other illnesses. I also love the chapter on waivers and long term care as i am on a waiver and not many are familiar with them. So much is included in this book. It was a good fast read. Usually takes me a few weeks or s month to read a book, but finished this one in 5 days.

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A breath of fresh air

Revisado: 07-26-22

I loved this book and collection of stories from those who do not fit the binary of gender. Reading this book was like letting out your breath after holding it for a long time. It’s so nice to here from more people that I relate to and having validation for my experiences. I like how a wide range of stories and perspectives were included. One thing I kinda wish is that each story had a brief introduction of the author just to know the authors even more, and to help me remember them, but I loved this book regardless.

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Insightful Work on Living with a CSF Leak

Revisado: 10-17-21

It was a helpful read overall. They suspect a CSF leak on me left from a spinal fusion and Chiari decompression in 2018. I’ve been living with it for more than 3 years now. I used to be on 5 liters of IV fluids a week because I also have POTS and it seemed to be compensating until I weaned off of them and went downhill.

The part of the story that hit me the hardest, and provided quite a revelation, was the part where the author discusses how when your brain is sick it doesn’t always realize it is and attempts to rationalize it. I had made some of the same rationalizing comments shared just 3 days before reading that and bursted into tears realizing how that’s exactly what I’ve done.

In some ways reading this brought up a lot more fears. I have history of a bad TBI and then the Chiari and instability a few years after that and my brain is better than back then, so I never stopped to think it could still not be working very right. It’s made me afraid that once I get these neuro things fixed I will regret things from the period I was leaking. It’s made me afraid to trust myself and my brain. And in some ways maybe that’s a good thing given what I shared above, but in others it’s unsettling, as I’ve only recently started to really trust myself at all.

The vivid descriptions of pain freaked me out that it will be worse than what I’ve experienced so far, but at the same time with all I’ve been through it’s hard to imagine much worse.

It also kinda took my positive outlook on the situation down multiple notches. Maybe that’s better and safer, I’m not sure. But at the end of the book, hearing the progress gave me a lot of hope. My brain has been so impacted since the TBI and it’s neat to think things could get even better. That I may be able to think clearer, that I may be able to do more. I just want to be able to sit up to read a book and to write and to take a walk sometimes. 🤞

I’m still grateful for this book as there isn’t a lot of books on CSF leaks at all. There isn’t as much info about it as some of the things I’ve dealt with in the past. I suppose it has helped me accept my situation and probably be more realistic about things. I did learn a lot. I guess my only complaint is wishing it was a bit more positive, but that feels like an awful thing to critique. Maybe it’s because I’ve buried a lot of medical trauma and pain and haven’t been able to be as honest about the hardships, to even feel the weight of these situations. I think it’s great for outsiders to understand the weight of the situation, but wish it was a little more positive for those going through it. That’s probably a me problem though.

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A book for all those with chronic illnesses

Revisado: 10-02-21

I’ve had symptoms that were undiagnosed my whole life. I had a significant TBI at age 20 that resulted in a skull fracture and 2 subdural hematomas and a severe concussion. That’s when I finally realized how clueless doctors are, even about a condition so common. I finally investigated the symptoms that were blown off all my life and all the new ones that resulted. I was diagnosed with Ehlers Danlos Syndrome and several comorbidities. I just learned the cause of my deep aching leg pain I’ve had for 20+ years was hip dysplasia needing surgery. My migraines were Chiari. This book is spot on and confirmed many things I started to notice. I will be recommending to most everyone I know, but especially those who are chronically ill. I’m grateful it was written.

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