Thursday, September 25, 2014
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.
Tuesday, September 23, 2014
This post isn't about Fibromyalgia, or chronic pain, but what it is about, is showing that love is bigger than hate. That if someone is *different*, that it's ok. That it is not ok to judge, ridicule, or be plain mean to someone due to them being *different*. All of us that have Fibro, or another chronic pain/fatigue illness know what that feels like. Every single person on my blog and facebook page has been made to feel bad by someone else at least once, because we're *different* and the normals just can't seem to get it.
I'm sure you all remember reading about that poor 14-year old autistic boy that a group of kids played a prank on with the ALS challenge. This poor kid thought he was taking the ice bucket challenge but a group of mean kids thought it'd be funny to really dump a bucket of urine and feces on him instead. When I read about this, I was astonished at the cruelty that was displayed to this poor boy. I was also amazed at his strength and courage to stand up and talk about the incident.
Most of the time when we read or hear about something bad happening, we're just a bystander. We idly sit by and think how outraged we are at the particular incident but we don't do anything about it. Most of the time, we don't know what we can do. This time, someone is doing something though to show this brave boy and his family that love is bigger than hate. GiveForward has started a fundraiser for this boy and his family, so that they can see that love is bigger than hate.
I challenge all of my readers to not sit idly by. Make a difference in this poor boys life. Please consider donating to this fundraiser by clicking the link. If you can't donate, then share this post on all of your social media networks. Don't fall into the bystander trap. All of us know what it feels like to be ridiculed. Let's show this family how our Fibro family can send a wave across the whole world!