20130221112410-ania_the_writer

Young, Sick and Invisible: A Skeptic's Journey With Chronic Illness

Faith healing, alternative treatments, ignored, and suffering, Oh My! The story of my life, diagnosis, and survival with arthritis and Crohn's.

On a Friday in September of 2005, my hip began to creak. This had happened to me previously, and so I wasn’t overly concerned: some days my joints would just make noise. Nor was I overly concerned when that same hip and my lower back became a little sore later in the day. I had experienced mild joint pain throughout high school, in some form or another. There was always some excuse: my weight, a heavy backpack, the possibility of having pulled something while in gym class, and this situation was no different. What I didn’t know was those grating noises were the start of a saga of pain, suffering, and disability that would change the rest of my life.  

What I am Writing and Why: 

When I was 18, I was diagnosed with Psoriatic Arthritis. The following year, I lost the ability to walk, and was ignored by doctors who looked at my age before my symptoms. I struggled with finding a treatment and getting some mobility back. 

When I was 20, I started experiencing some mysterious symptoms, including rapid weight loss, pain, bleeding, and more. I desperately searched for an answer, and eventually, a treatment. 

The journey itself, to diagnosis and treatment was incredible, difficult, and enlightening. Living with the disorders has been eye opening as well. Chronic illness is an invitation for everyone to comment: either with regards to a cause, a treatment, or otherwise. Suddenly, everyone's aunt is an expert and everyone's fad diet a cure. You wade through a constant stream of ignorance and lies, in a desperate attempt to find peace and a stop to pain. In my years  living with both disorders I have been faith healed, poked, prodded, stuffed with powders and magic potions, and now is my opportunity to tell everyone about it. 

My goals with this story are twofold:  

1. I want to tell my story so that people might gain some understanding as to what it is like to live with a chronic illness and a disability. I am also hoping to help make other people with similar illnesses feel less alone. 

2. I want to offer a commentary with regards to issues of interest to the skeptic community from the point of view of experience as opposed to the unaffected observer. I can show first hand what it is like to be desperate and offered a miracle cure.  

Breakdown

All funds will cover access to medical files, editing, professional cover art and graphic design for the digital and print versions; ISBNs and barcodes; creating and maintaining a website for the book; and conference costs to promote the book and time to write.

$5000 will let me achieve the purposes outline above. Conference attendance would have to be to either local or smaller conferences, with one or two large ones.

$8000 will allow me to attend more large conferences, and to look into speaking tours to promote the message as well as the book itself.

$9000 or more will allow me to donate copies of the book to the Crohn’s and Colitis Foundation, Remicade clinics in my city and elsewhere, doctor’s offices, and multiple other foundations that would benefit from a book of this type.

The Impact and About Me

I am a student of psychology, with a background in literature and biomedical sciences. I will someday be going to medical school to pursue a double specialization in gynecology and psychiatry. I blog at Scribbles and Rants, where I have mentioned certain aspects of my story which you can read here:

Our Concerns Won't Be Flushed Away [Crohn's]

No Man Will Love You If You're Fat [Crohn's and Arthritis]

Suffering (poems) [Arthritis] 

Your donation will help me to achieve a dream I have had since childhood: to have a published work available out there. It will give me the time to work, while still addressing my health.

 This book will give me the opportunity to help other people going through what I went through. It will give me an opportunity to address doctors and tell them my story, in the hopes that it will help someone else in my position.

It will give me the opportunity to offer some insight to those who debate about homeopathy, alternative medicine, religion, vaccination, and more, and give a voice to those of us who cannot separate ourselves away from these debates.

In exchange for all this help, I will offer a promise. I promise to have the first draft of this story finished by mid-April. I will do everything I can to have the finished product available by the end of August.

Other Ways You Can Help

I know that not everyone can afford to send money. You can help, by spreading the word about this project. Please tell your friends, share on facebook, share on twitter, on blogs, on any medium that might bring more people to view this project.

I want to extend my sincerest thanks to everyone who took the time to listen to my proposal. A special thanks to everyone who is contributing time, effort, and/or money on behalf of this project. 

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