Friday, January 3, 2014

A New Year; New Hope

Well, 2014 is here.  I hear people say all the time "It's just another day" or "It's just another year, nothing to be excited over".  Well, it is something to be excited over, in my opinion.  Every new year, brings new hope that this will be the year that a cure is found.  At the very least, it brings hope that a new treatment that works for everyone is found. 
Each year, fibromyalgia and other chronic pain conditions gain more awareness.  I've said it from day one, but I'll say it again ...awareness ='s education ='s more donations for research, and research ='s a possible cure or new treatment plan.  Even a new treatment plan ='s hope for getting our lives back, and that's all that any of us really want, right? 
I've sat here the past two days, in a pain flare.  Mind-boggling-make-you-grouchy-curse-under-your-breath-makes-you-want-to-gouge-your-eyes-out-pain.  Not just a little sore & achy type of pain. I know that on this blogs facebook page that many are in this type of pain flare right now.  I think that all of this snow and the frigid temps are partly to blame for all of the flares right now.  This is no way to have to live.  -I'm using the word "live" loosely here, too.  Because really, how is being in pain every single day of your life, being so tired and fatigued that you can't even keep up with daily chores, living?  It isn't.  We're sustaining.  Sustaining our existence, and that's about it.
Almost two years ago, I was completely overwhelmed at the thought of diving into the blogging world, and the act of advocacy.  Thoughts crossed my mind such as "Who would be interested in what I have to say?  Who could I really help?  I don't have a medical degree nor do I have a degree in journalism.  I don't know anything about social media, and I barely know how to use my computer".  You know what though?  I was so sick of the pain and the fatigue, and the insomnia and brain fog.  I was depressed, and overwhelmed. 
Google had become my best friend.  I googled, and googled, and googled reading every blog I could find.  Most of them, wrote about fibromyalgia but then would add something along the lines of " ...but we won't let fibro define us" or "we're bigger than fibro" or some other peppy-I'm laughing-at-this-illness-and-won't-let-it-get-me-down-make-me-barf-type-of-crap.  Now, I'm all for positive thinking.  To know me in real life, you wouldn't believe the positive spin I put on my life.  You wouldn't even believe half of the crap I've been through, and I still maintain a positive attitude most of the time.  Heck, I was a high school cheerleader, after all.  But!  I just could not relate to what these other blogs were saying.  I'd come away from reading them, feeling even more sad and alone than before I read them.  How could they be so positive and upbeat all. the. time?  How?  People complain that there isn't enough research funding to unlock all of the mysteries that fibro holds.  Mysteries that could lead to a cure.  Well, if people think that fibro isn't a big deal; that fibro doesn't define a person's life, how can we expect people to donate for further research?  No, fibro is a big deal.  Fibro does define a person's life. 
Finally, I thought about one of my dad's favorite sayings growing up.  A quote from  David Glasgow Farragut that I actually used in a Voices Of Democracy speech contest when I was in high school.  "Damn the torpedoes.  Full steam ahead!".  If I felt alone, and sad, and depressed then someone else had to feel that way too, right?  A vigor ran through me.  I vowed to myself that even if one person read my blog, and I helped them to realize that someone else felt the same way they did, that it would all be worth it. 
Once I started the blog, and I realized that there actually were people out there that felt as crappy with fibro as I did, I started to get angry.  Angry that there were people out there making fibro look like it isn't a big deal.  Making it seem like "Oh, it sucks, but we'll be ok ...we're fighters!".  We most definitely are fighters; but we have to be or else we just wouldn't survive!  I was angry that the majority of the public; even a lot of doctors and people in the medical field, were so uneducated about how damn tough it is for us on a day to day basis.  Angry that people just don't "get it" when it comes to what fibro is really like for those of us that suffer.  That, is when I vowed not only to myself, but also publicly, that I will advocate for education and a cure until the day I die. 
At that point, the idea of my seminar was born.  I started gathering information and facts, and putting the seminar together.  My life-long goal, is to travel to every major city in the U.S. presenting this seminar.  Giving tips and lending support to those who suffer with this illness.  Educating those who do not suffer with it, as to the eye-opening realities of our day-to-day life.  Submitting proof that it's a real condition, with real life-altering consequences.  If people only read or hear about the positive stories that are shared, then why should they donate to research?  Life isn't so bad ...these people are managing their lives just fine.  No.  Just ...no.  The vast majority of us are not.  My mission is to show that research is needed.  A cure is desperately needed.  Hell, I'm a 43 year old woman, and I can't even support myself.  How sad is that?!  It sure isn't because I don't want to.  I hate ..no, despise the fact that I can't work a "real" job.  I hate that I can't just breeze through my housework and cook lavish meals.  I can't just jump in the car and go places and do things that my friends are doing.  My life doesn't work that way.  Because of fibro.  I'm not alone out there either.  It's time we find a cure or a solid treatment plan that will work for everyone.  We deserve to live a fulfilling life. 
I don't know when my dream of presenting seminars will come to life.  The old cliché of "nothing in life is free" is unfortunately true.  I need funding to be able to secure locations in which to hold the seminars, along with travel expenses and marketing.  After all, what good is a seminar if no one knows it's being held? 
Nineteen months ago I started a GoFundMe account, to try and generate the funds needed to get the seminars started.  In that nineteen months, the page has received $85 in donations.  Several of them from the same person, bless her heart.  She's a fellow blogger that also has fibro.  I've seen pages on that website, set up because the person is asking for money to pay their house payment.  Or because they want a new or bigger vehicle.  These pages actually receive thousands in donations.  What this proves to me, is exactly how bad this seminar is needed!  It proves to me that the vast majority of people just don't "get it" when it comes to fibro.  They have no idea how badly education is needed, and how desperate we all are for a cure.  All this does, is drive my passion for getting this off ground even deeper within my heart.  It may be another 19 months before I have the money needed to start the seminars.  It may be 38 months.  Regardless of how long it takes, this is something I will never give up on.  I care too much about my quality of life and my future.  I care too much about your quality of life and future!
As we start off 2014, I want to make sure that each and every one of you know how much you mean to me.  I truly care about every one of you, and value your readership more then you know.  I want you to know that I "get it", and I'm here for you.  I also want you to know, that I'll always educate and advocate for our future; our cure.  If you know of an individual, business, group, or organization that might be interested in donating to the seminar fund, please pass along this link to them.  http://www.gofundme.com/pc0hc  Let's go forth in 2014 hopeful that this will be our year.
Love and Gentle Butterfly Hugs,

1 comment:

  1. I can't begin to explain how helpful and motivating your blog is to me. I HATE fibro with a passion. I hate what it has done to my life. I don't want to live like this. Thank you so much for allowing all of us the ability to voice our complaints, questions, triumphs and other thoughts on your blog and facebook page. One day, there will be a cure. I'm hoping that it's sooner than later! :)