the day was beautiful. what an amazing monday. blue sky, sunshine, one of those days where you walk down the street smiling just because. basically, the perfect day to come out of my technological hibernation. i’m back. and my brain, well it’s buzzing.
been thinking thinking thinking. it all started with the fund rager and it’s taken many forms in my head since then so i didn’t want to say anything yet. i mentioned in my speech that night in june that my plan was to act; to do something to help raise awareness for autoimmune disease… and more. i have big ideas and over the past week a lot of things have been clicking —all signs that i have to do this. i cannot say yet what the project is, because i don’t want to disappoint and i want to do it right. what i can say is that my goal is to create something to shed light on this dark area of “medicine”. there are too many stories of misdiagnosed patients, horror tales from doctor offices, the disconnect between western medicine and the acknowledgment that our environment and what we put into our bodies is a huge factor in quality of life for people living with the pain, fatigue, and discomfort that is the gift of a whacked out immune system!
i am most excited because i feel energized to do this. it’s a driving force to my healing process and today i write feeling the best that i have in over a year. sure, there’s the everyday routine of meds and discomfort and weakness, but the key is it’s getting better. every good moment fills me with so much joy that i am on a high. baby steps. but it is a huge difference compared to a snap shot of myself one year ago today.
to get things rolling, let me drop some knowledge (i love that term) on you guys and then maybe you’ll see where my heads at. basically, i want to put some things on your radar:
i just ordered a book that i cannot wait to dive into. it is called The Autoimmune Epidemic. written by a doctor living with an autoimmune disease, it is an awakening to this epidemic that most people have never heard of:
from Barnes and Noble dot com:
From the foreword by Dr. Douglas Kerr, Director, Johns Hopkins Transverse Myelitis Center
“The Autoimmune Epidemic by Donna Jackson Nakazawa is an astounding book….It is the kind of book that will rivet you and scare you. It will make you angry. It will amaze you with the courage of some of the people described in the book…The Autoimmune Epidemic is every bit as compelling as Upton Sinclair’s The Jungle…It is also every bit as necessary as An Inconvenient Truth….
You will leave this book with no reservations about the veracity of the conclusions: put simply, there is no doubt that autoimmune diseases are on the rise and increasing environmental exposures of toxins and chemicals is fueling this rise. The research is sound. The conclusions unassailable….
Reading The Autoimmune Epidemic is a necessary first step. Reading The Autoimmune Epidemic is a life-altering event. It needs to be.”
I will give a full report when I am done. I will also leave you with a couple of facts from Dr. Donna Jackson Nakazawa (the author) that have sparked my neurons into overdrive and made me realize, this is it Lauren, this is what you have to do!
some highlights from an interesting article written by the same author that i came across in Glamour mag called “The Scariest Health Threat You’ve Never Heard Of” (Sept 2008 issue with Penelope Cruz on the cover. worth buying for the article).
Since there is little to no funding for research on autoimmune disease (considering how many people are living with these conditions) there can be no developments in treatment, cause, etc…
94% of people cannot name a single autoimmune disease.
Small changes can make a huge difference. Even if it is starting to take action on a local level : from Dr. Nakazawa “ASK FOR SUFFERERS TO BE COUNTED”. this means for example, if someone is diagnosed with cancer… the doctor typically reports it to the health department… this is not required for autoimmune disease. hence we do not know how many people are suffering from them, there is no data bank we can research possible causes and cures.
basically, it is a disorganized mess! we need to put faces to this problem. i read story after story of women being misdiagnosed —it takes an average of 4 years of suffering, doctors appointments, being made to feel crazy, before many are diagnosed with their actual underlying disease. these are tricky buggers, and often so many symptoms make each case so different from each other that the research is simply not there. no one has bothered. there has to be a united front, a single place where sufferers (i do NOT like that word but i’ll find a new one for it soon) and the common person can visit alike for information and options. in a world that boasts so many technological and medical achievments, it is sickening to see the lack of attention and cursory comments “experts” give to this very major problem. phew. i’m all wired now!
exciting things to come. i saw what magic can be accomplished when people care (the fund rager), and i know that while it may take awhile, we can slowly, one by one help out by educating ourselves and making this the conversation of NOW.
i am off to try and sleep. key word there is try. i am fired up!