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,

-Amy

My Christmas Wish

Sometimes

I try to stay upbeat & positive.  I try to always have hope.  Sometimes though, I just can't.  Sometimes, I think why bother?  Sometimes, I feel overwhelmed and like everything is just too much.  I feel that I don't have any quality to my life any more.  If I can't work.... if I can't go out and do things, and have friends to do them with.... if I have to struggle week to week....if I have to live every day so tired and exhausted that I sit & cry.... if I have to live every single day in pain.... then what's the point of life become?  I'm in too much pain to even keep my house as clean as I'd like it to be, so how could I work?  Without working, I'm poor and can't afford to go out and do things I enjoy.  Being in pain and being poor has isolated me into my house most of the time, so I don't really have many friends left.  

I sit at home alone.  I have conversations with myself, inside my head, because there isn't any one else to talk to.  I try to maintain the facebook page for this blog, but I'm not really sure how many people even read it (or the blog for that matter).  Of the ones who do, how many really give a care what I have to say?  I try to remain hopeful, that by writing this blog and having the facebook page, that I may reach people and help to educate on this illness.  I try to remain hopeful that someday soon there may be a research breakthrough and my miracle cure will be right around the corner.  Is that really hope, or is it living in a fantasy world?

As a younger adult, I've worked 3 part-time jobs while carrying 18 credit hours in college.  All while raising four kids at the same time.  Part of it as a single mom.  I went out and did things with my kids, and with my friends. I always had the money to go do things.  I've never liked being alone.  I don't know if that stems from being an only child or what, but I've always loved to be in the middle of large crowds of people.  I've always been of the mind-set "the more the merrier".  Now, I'm alone.

I did a sink of dishes earlier, and I made supper.  Nothing fancy.  Just a quick, simple, supper.  That was a couple hours ago.  Now, I'm still sitting here in such pain that it takes my breath when a spasm hits.  Hurts constantly, but the spasms are the worst.  Sometimes, I'm not brave enough to keep up the fake smile and the fake "It'll all end up ok" bs.  Because sometimes, I really just need to cry and try to figure out what the point of my life is, when I have to live it within the constraints of pain and poverty caused by pain.  Sometimes, I really just have to wonder what the point of my life really is.  All the time?  I wonder why this illness even exists.

EVERY Day Should Be An Awareness Day

As I sit here with a wet, gooey feeling on my mid-back from my pain patch, I started thinking about my personal facebook profile picture.  It's one of the "May 12 Fibromyalgia Awareness" photos that go around. Maybe I'm just grumpy tonight from being so tired (I couldn't fall asleep Friday night until after 7am Saturday morning).  Maybe it's because my arms, neck, and shoulders are aching just with minor typing tonight.  Probably  Possibly all of the above, but regardless it struck a nerve gave me pause for thought.  We're supposed to create enough awareness yeah, because that's a real possibility to do any good or bring about changes by making people "aware" one day out of the year?

I'm sorry, but it kind of makes me want to scream and cry, and kick, and throw myself on the ground in true temper tantrum fashion when I sit and really think about that tonight.  Before starting this post, even though I knew the answer, I still went to page after page googling "what is" ....Fibromyalgia, Lupus, RA, Ankylosing Spondylitis, Osteo Arthritis, CFS/ME, etc.  Why would I do this besides being completely crazy?  Just to look at what I already know.  "Although there is no cure at this time ....."

No cure "at this time".  Does that mean that there will be a cure in the future?  Will it be during my lifetime?  Well, I'll tell you my honest opinion.  Although I'm hopeful, realistically I really don't think there will be a cure in my lifetime.  I'm praying that a cure will be found during my daughter's lifetime.  The reason I'm not hopeful, is because there isn't enough advocacy.  There isn't enough awareness.  If you've been around my blog for awhile, you know that one of my key phrases is "without education there won't be change".

What do I mean by change?  You could say that I mean it in the same way as awareness.  My entire mission statement for The Fibro Frog could be summed up by the words on one of the awareness photos I made up.  You'll see it below:

I just think it's so silly to expect people, as in a lot of people, to become aware of how painful, debilitating, and real these conditions are by having separate one day awareness dates throughout the year.  According to the U.S. Census Bureau, as of July 2011, there's 311, 591,917 people in the United States.  Out of over 3 hundred MILLION people approximately 6 million people have Fibromyalgia, and all of the chronic pain illnesses together tally around 116 million people, that still leaves 195,591,917 people who doesn't have a clue what it really feels like to live with an illness that causes chronic pain.  You'll find the census bureau information that I used for this post, by clicking HERE.  That still leaves one heck of a lot of people that doesn't have any clue in the world how miserable our lives truly are have any idea how hard our day to day lives really are.

195,591,917 people that by no fault of their own, just can't grasp the type of pain we live with.  195,591,917 people that are still left to believe that the pain is "all in our heads", or that "Gee, my back, feet, and legs hurt after work so I do know what these people are going through and it isn't that bad.  They're obviously attention seekers".  We can't be mad at people for thinking these things.  As angry as I start to feel every time I read or hear of someone saying that Fibromyalgia isn't real, I have to calm myself down because it isn't there fault.  They truly have no idea of the scope of pain and fatigue that we endure every single day of our lives.  That's my fault.  Our fault.  

Some of you are probably starting to get completely a little miffed at me right now for putting the blame on us, aren't you.  Seriously though, unless we can make these people understand, they will never know what a day in our lives is truly like.  How do we do that?  By educating them.  By talking to them. By showing them proof from studies that these illnesses are real.  By giving them analogies of things that they can relate to.  For instance, using the analogy of when they've had the flu.  That really is one of the truest analogies out there.  

How can you start educating people?  Simply post the truth about how you feel on your face book page.  By writing and sending a bulk email with info, examples, study and research links in it.  By spreading the message about my "Living With Chronic Pain - A Patient's View" seminar.  By talking to your community leaders, pastors, lawmakers, doctors, clinics, college campuses about booking my seminar.  If people doesn't understand what it's truly like to live like this, then it's up to us to help them to understand.  If we ever hope to have a cure found (for whatever chronic pain/fatigue illness you may have), it's going to take pressure from multiple people to demand further research.  I go over the statistics of how much government money goes towards research for us, compared to the amount of government money that goes towards research other illnesses.  Now, I'm not being crass or cold hearted.  I've had people I love dearly that's passed away due to some of these other illnesses, but the distortion in the amount of research funds for these other illnesses, compared to what we get for fibromyalgia, was staggering to me.  I had someone say to me once "Well at least you won't die from what you have, like a person with cancer might".  Again, I'm not crass or cold hearted, I'm just throwing my honest opinion out there.  I'd much rather be diagnosed with some sort of heart condition, because they have treatments that can be tried ...medicine, surgeries, etc. that can possibly lead to the person being cured.  I've long and hard with this next one, and I still feel the same way; I'd rather be diagnosed with cancer.  Again, there's treatments and therapies and surgeries that can be tried an a lot of the time the person is cured.  Yes, a person goes through pain, tremendous pain, and sickness with cancer treatment. Still though, they have the hope that they'll achieve remission and be cured someday.  Did you know that in most of the auto-immune illnesses, a lot of people take some of the very same immune suppressants that is given to people with cancer?  It's true.  Yet even though they take meds and have infusions of the same meds cancer patients have, they don't have any hope that they'll be cured.  They live with the knowledge that they're going to live in perpetual pain every single day of their lives until they die.  Not only the pain, but the fatigue, the headaches, the nausea and sickness and depression that are co-morbidities of  Fibro, or Lupus, or RA, etc.  Co-morbidities such as ulcerative colitis, IBS, chrones disease, migraines, and on and on and on.  Real conditions that hurt.  Real conditions that make you sick.  Again, for me, I'd much rather have a diagnosis of something that could be fatal because not only is there hope of being cured, but regardless, I'd know one way or another that my pain would come to an end.  On days where my pain is incredibly bad and I've been stuck in a flare for days or weeks, I sit and think about it and I'd rather know I was going to die, then to know that I have somewhere around 40 more years to live in pain, sickness, and agony.  It feels as if I've been sentenced to a life of living in a slow, perpetual hell. 

The only hope I have; the only hope we have, is that we bring about awareness to enough people that understands what a crap sandwich we've been dealt in our lives.  Enough people that's willing to help us advocate and put pressure on lawmakers and congressmen to push for more funding for more research. I really hope that none of my opinions in this post have offended anyone as that wasn't my intent.  The statements and opinions that I've expressed are solely mine.  Because I feel this way, doesn't mean that someone else with the same condition as I have, feels this way too.  As my last blog post talked about though, the number one cause of death for people with fibromyalgia, is suicide.  It's just so daunting knowing that you don't even have a chance to be healthy again.  Knowing that you'll spend every day of the rest of your life sick, hurting, and depressed. I've always been honest with all of you on this blog, and I always will be. Some people may find that honesty offensive, and I realize this, but that's who I am. If I give people nothing else, I at least give them my honest thoughts and opinions.  All of this to say please, please don't just try to bring awareness about on May 12th of every year.  Advocate for awareness every day of every year.