Really Society? I'm Outraged

I just saw a story in my facebook feed from one of my local tv stations.  The article was about a man from Ohio that started a campaign on a crowd funding site as a joke, to raise $10 .....yes, 10 measly dollars, to buy the ingredients to make potato salad.  He ended up raising over $55,000!!  Are you kidding me?!  Over $55,000, because he wanted to make a batch of potato salad.

28 months ago, I started a campaign on a crowd funding site (GoFundMe) to try and raise $5,000 to print up materials, pay for advertising, pay for location rental, and for travel expenses, to get my seminar on living with chronic pain up and running.  Guess how much I've raised in two years and four months time?  $90.  No, not $90,000.  Not even $900.  Just ....$90.00.

According to article when funds started rolling in, he promised he'd have a big party.  So, now he's going to hold PotatoStock 2014 in downtown Columbus, OH.  But, how much of that $55,00 is even being used towards it because the article goes on to say that the Idaho Potato Commission and corporate sponsors have donated supplies for him and volunteers to whip up 300 pounds of potato salad for the event.  The event is going to feature bands, food trucks, and beer vendors.  Usually for something like this the bands donate their time, and the food trucks and beer vendors pay for a spot to set up.  To give a little credit, the article says the man used some of the money raised to aid charities that fight hunger and homelessness.  Some of the money?  How much of the money?

Whether $1 or $10,000 was used to aid some charities isn't the point I'm stumbling on though.  It's the messed up way that people, the people donating to the crowd funding campaign in the first place, think.  Essentially, this guy was asking for $10 to buy some potatoes, mayo, and onions.  Once donations started coming in he promised a party.  People went wild and donated over $55,000 so a party could be held.  I ask for $5,000 to try and help people live a better quality of life, to educate those that don't know what it's really like to live with a chronic pain illness so that hopefully we'll get enough exposure out there to aid in further research to find a cure ...or hell, I'd even take a treatment plan that actually works, and works for everybody that has Fibromyalgia, and society can donate $90 in almost 2.5 years.  What's more important to society?  Having a party, or helping to improve the quality of a persons life?  Obviously, the party wins.

Call me jealous, or spiteful, or whatever you may but I'm seriously outraged and extremely upset over this.  I've been overly emotional the past few days due to lack of sleep, pain, and stress but I honestly am holding back tears right now.  To add insult to injury, for the past two years I've messaged all of my local news stations literally begging them to mention even one sentence on the air  ...OR even just on their facebook or Twitter page, that it's National Fibromyalgia Awareness day.  Seriously, I would've been happy had they just written "Today is National Fibromyalgia Awareness Day" on one of their social media sites, but not only didn't that happen, but they didn't even respond to my message to say "sorry, no can do".  As soon as someone is going to hold a party with bands and beer though, it's a complete article!

There have been times that I'd like to make a batch of potato salad too, but haven't had the money.  There have been times that I'd like to have a dozen eggs, a loaf of bread, and a gallon of milk but couldn't even buy one of those items let alone all of them.  Do you know why?  Because Fibromyalgia and all of the co-morbidities that I have along with it, keep me from being able to work a real job.  I don't have a husband and his income to help out because a few months after I was diagnosed as having all of these life long chronic illnesses, he bailed.  I can't meet anyone new, because my health keeps me from being able to get out of the house on a regular basis.  Do I set up a page and ask for donations when I'm hungry or I'm struggling to pay my bills?  No.  I do without.  I've been raised not to ask for "handouts", and I really struggled with setting up the page for donations to start up the seminars.  In the end, I did so though because it would be helping to improve the quality of life of those afflicted with a chronic pain and fatigue illness, and it would help me to support myself.  It's something that I would only have to do for a couple hours a day, once or twice a month.  That I could handle.  I can not handle a *real* job though, not even part-time.  It's just unrealistic for my health issues.

Maybe society as a whole isn't messed up with their thinking.  Maybe I'm the one who's messed up.  I've been accused of having too big of a heart before.  Of caring too much about people.  I don't know.  All I know, is that I'm really, really sad today. Sometimes, I feel as if I'm fighting a losing battle with trying to advocate for all of us that suffer and have a normal life ripped from us.  In all honesty, I probably am. Regardless though, I'll never give up.

If You'd Only -------- You Could Cure Yourself

I've heard that phrase SO many times lately that I'm ready to scream, cry, and pull my hair out!  I have a friend who means well, but calls me every few days telling about some cactus-juice-wheat-germ-iodine-swim-in-warm-water-while-blowing-through-a-hose-while-pouring-holy-water-on-my-head cure that works "..and I really mean it because my best-friend's-cousin-who-is-friends-with-my-grandma-who-lives-in-Belgium-with-the-brother-of-a-priest-who-had-a-prophecy-that-this-will-work" was cured of her Fibromyalgia and she had a really bad case of it! Hmmm ....really?  That's so not interesting.

Does this woman honestly believe that if there was a proven "cure" for Fibromyalgia that I wouldn't already have jumped on it?!  Nooo, I wouldn't do that because I like living virtually every day of my life in pain.  I like the fact that I can't go work and make money that I desperately need.  I like feeling as if I have Alzheimers at the age of 41.  I absolutely love trying to talk to someone and then sitting there saying "ummm... ummmm.... shoot!  I forgot what I was going to say.".  I also really love the fact that my concentrate is just so great.  You know, I've only spent close to an hour and a half now to write these two paragraphs.  -Not time consuming what-so-ever.  I absolutely love the insomnia that I deal with on a daily basis.  You know, because life is just so much brighter when you look at it with 2-4 hours of sleep!  I just jump up and down with excitement over the depression that the pain and insomnia cause.

No matter how well meaning people are when they say this stuff to you, it gets really old, really fast.  Seriously, I go to the 2nd rated Rheumatology clinic in the entire U.S.  If there was a cure, they'd know about it.  They'd have me on it.  I wouldn't be desperately advocating for research to find a cure.  I wouldn't be trying so desperately hard to educate people about the myths and truths of living with a chronic pain and fatigue illness.

Every time Sara says something like this, I try to carefully let her know that I appreciate the fact that she cares about me, but that there is NO cure for Fibromyalgia.  She just adamantly keeps arguing with me that isn't true.  This is just another reason why holding my chronic pain seminar is so very important to me.  There's just so many myths out there that need to be dispelled.  If they aren't, then I'm seriously going to lose my mind one of these days and end up completely unloading on one of these well-meaning people in my life. Please remember that I'm doing a $1 challenge, and share it with your family and friends.  My prayer is that I have enough in donations by my birthday, November 18th, to hold at least one seminar.  To pay for the conference room and to pay for advertising.  I challenge everyone who reads this post, to donate $1 to my GoFundMe.org page.  You will find the donate button on the right hand side of this blog.  Once you're on my donation page, I ask that you please share the link on your social media sites.  You all can't imagine how grateful I am for every single $1 donation that's made towards my cause.  If you can't accept the $1 challenge, then I ask that you'd please at least share my donation page via your social media sites.  I appreciate each and every one of you out there!