I am sitting here trying with all my might to write a positive post about something Fibro related and put an encouraging, uplifting spin on it and I simply cannot. I cannot betray my heart, for right now I am in mourning. I am grieving the loss of the illusion of many friendships, supporters, Fibro-family members. Last week the Fun House took a huge hit. I marvel at the fact that people are so convoluted. They use a health support site on Facebook to conduct their lives. And then one person gets pissed off at another and everyone starts fighting and before you know it the group has been divided and we are set back on our fight for Fibro tremendously. THIS IS THE EXACT REASON I STARTED THIS WHOLE THING IN THE FIRST PLACE! Fibro knowledge is what it is [not] today because the patients are so busy fighting with each other they can't get it together enough to advance their cause, promote the need this illness so desperately carries with it, advocate for funding and awareness. So yes, I blame the Fibromyalgia patient body directly for the lack of advancement in understanding the cause or finding a cure for this illness. We have left it up to chance. A doctor that may want to find more out about this. A drug company that may have a drug to sell that treats the symptoms. A Senator that may know someone who has it. And that is pretty much it! I have in the past apologized for getting my Fibro managed and then shutting that door of my life and running on to the next thing. I am as much to blame as any other Fibro patient. It may have taken 2 strokes to wake me up, but now I am trying to do something about it!
It is pathetic to see a group of grown adults playing silly games with a support-page I created so people could have a place to go to vent, cry, laugh and feel understood. Something many of us are lacking in our personal lives. Now the Fun House is no longer a safe place. People post and are attacked in private message. Private messages are posted on public walls. Rumors abound that I am just in this for the money. Suddenly I have become a perpetrator, preying on the ill, the disenfranchised, and am exploiting them for my own gain. Mind you what I have spent on this business is far more than I have made. Oh yeah, and I have turned down thousands of dollars in donations because I am not yet a non-profit and felt an ethical conflict. But go ahead and keep believing I am "only in this for the money", be my guest. The reality is, all of this rolled up into itself, there are a good number of Fun House members that have destroyed the safe haven so many others were beginning to depend on. All I have to say is shame on you and grow-up or get out of my house!
So here is the bottom line. The Fibromyalgia Crusade is NOT going away. Ever. I will continue to rally up enough people that we will make a difference for Fibromyalgia patients worldwide. The Fibromyalgia Fun House is NOT going away. And I am not going to become a censorship vigilante either. If you do not believe in the purity of my intentions, get out of my house and quit reading my blogs. If you cannot restrain yourself from badgering and bullying others, get out of my house. If playground games and getting people "on your side" is the position you operate from, get out of my house. If you are so easily led and distracted from our true intentions, go on, get out of my house! I am building an army that is going to fight a Crusade for Fibromyalgia awareness. If you are not in then you are out. My conscience is clear. My motives are pure. My intentions are real and honest. A few years down the road The Fibromyalgia Crusade will be all over the place. We are going to grow into a huge awareness army and anywhere you look you will find us. People will know what Fibromyalgia is and doctors will stop treating us like pathetic ninnies. When that time comes the joke will be on all of you that in one way or another tried to destroy me, my blog or the Fun House. NO one is going to destroy this. Ironically enough, you will still benefit from our hard work. And for all you dear souls that are reading this with a clean conscience and pure heart, wondering what on earth is going on, let's just say that I am weeding the garden and don't give it another thought.
Thanks for joining,
Leah
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My heart is breaking that you have to write this blog! I don't know what happened here....and I don't want to know but I see it (the reason behind this blog) everywhere! It seems that the internet has enabled people to say things that they would NEVER say in a face to face conversation. This can be good....but also very, very bad! It's also difficult to convey a person's emotional intent in a posting....so what is meant as a light hearted tease is actually taken as mean spirited insult..and vice-versa! And once we hit that SEND button...we can't take it back. WE can't post a smile or show a silly grin to show that we are teasing. Then someone types an angry response and again...hits that send button before thinking about what they just wrote. (It's even worse when people hide behind an anonymous identity and post hateful responses to news stories...but that's a whole 'nother can of worms!)
ReplyDeleteI see a horrible end to the whole concept of posting on the internet...until we start to THINK before hitting that send button....and only post what we would say if we were face to face with each other!
Leah...I LOVE what you are doing and I admire the strength that you are showing to keep this site running despite the turmoil. You have given ME and countless others a sense of camaraderie and a purpose to our suffering and I am proud to stand beside you in this quest to put our struggles on the map!!
Soldier on!!
The words "Together we stand, divided we fall" ring true here. Support groups like these have made this journey far easier to bear. No matter how down I am, someone out there almost always has the exact right words to bring my spirits back up because they've been where I am. That just doesn't happen with people that don't understand what we are going though.
ReplyDeleteIf we aren't here to support each other, then why the *bleep* are we in a support group? We don't need any additional help feeling like crap, our bodies and the clueless people we all interact with do a dandy enough job already... I lost what I thought was a good friend this week because my illness depressed her...
When I saw that only 5% of profits went to research, my first thought was that the rest of it went to continuing to spread awareness since campaigning for awareness of something costs money (Domain fees, hosting fees, flyers, phone minutes, travel to congressional offices, etc really add up!), and possibly to help pay for your own treatment. I feel it would be totally fair to draw a "salary" to help you eat and pay for your own treatments considering how much time and energy you put into making all of our lives better. It never even crossed my mind that you were doing this to take advantage of us.
Erin you bring up a good point. Where does the rest of the money go? Well the majority of it goes to producing the product, packaging and shipping it. What is left mostly goes back into the business. My job is this blog and Crusade and since I don't have a trust fund (don't I wish) and am not on disability I need to earn some sort of an income. So basically it goes into keeping the blog going and campaign growing so I don't have to get a job outside the home and stop. The point of this Crusade is awareness. People just don't know about Fibro or what it is really like. So by blazing this image of our logo all over the place we are showing the face of Fibro (your face) and raising awareness. We have other strategies to play and are working on them. But if I could get a book deal and did not need the income I would gladly give most all of it to charitable causes. Just saying in case anyone knows anyone...?
ReplyDeleteBlessings,
Leah
I agree with all that you wrote. ALL of it. There is no time to "babysit" people, as we are all facing this crap every single day. People who can't be cordial and compassionate to others should find somewhere else to go. Thank you from the deepest place, Leah. You have my full support.
ReplyDeleteBravo!!
ReplyDeleteI don't know what happened and probably don't want to know. You're doing us all a great service here and I hope you continue. It's become a part of my daily routine to see what you wrote and find some comfort in knowing I'm not alone. Not to steal an AA saying, but they always point out "take what you like and leave the rest". I think this is a good way to approach most things. I wish you nothing but love and happiness.
ReplyDeleteCindy
Your blog is awesome and inspirational, please don't stop!
ReplyDeleteCindy
I must have missed whatever happened, so Im a bit confused. But since the beginning of me joing the the funhouse, I have found it to be a very non judgemental place and really that is the only reason I even keep my FB(since FB seems to cause drama in my family). I keep my FB because when I get a chance to actually go check it, I love seeing the encouraging words that you say to people and I love that people can vent and feel safe doing so. You just keep going girl and things will work out! There is always going to be stupid people in the world but they cant rent space in your head if you dont let them. :)
ReplyDeleteI have no idea what happened and do not care to know. One thing I do know is that even though I don't know you at all, I believe in you and what you are doing. I cannot imagine how you do it all while dealing with fibro. So keep pushing on and helping us, we need you and I am so grateful to you for all of your efforts!! I think you need a book deal, you are a great writer. I'd buy it!! Don't let this get you down ;)
ReplyDeleteLeah - I want you to know that I have experienced this same criticism with my Fighting Fatigue website from certain people. I think a lot of it is jealousy - I really do. When people refuse to help themselves, they attack, and we are easy targets because we put our lives out here for everyone to see. I have been accused also of trying to use my site to make money and like you, I have put far more into the website and now websites than I will ever see in return. It's not about the money - it's about doing something important for an important cause. Don't let these idiots stop you - you are so strong and you have been through enough. Keep going, girlfriend! Your message is getting out there and there are so many people out here who know you are doing a great thing - and YOU know. That's what matters.
ReplyDeleteLeah, I am so thankful for what you are doing. You are getting the message out. I am so blessed to be a part of something that is going to HUGE. I love that I can come in here and be able to talk about how we all suffer from this dreaded illness called fibromyalgia. We are not alone and it is a huge blessing to be able to talk about it. I have gained new friends and become a part of a family that otherwise I would never have known about. You keep doing exactly what you are doing and to those naysayers out there, like LEAH said, GET OUT OF MY HOUSE!! You go girl!! I am beside you 100%.
ReplyDeleteKeep up the good work, theirs always going to be few who don't get it... and perhaps it's their way of dealing not that thats an excuse. I run a group on FB to and some times it can be soul destroying if you let it, brush it off they're not worth the energy it costs you... Take care Dxxx
ReplyDeleteI love your blog and am totally with you!!!!! keep up the good work. You are a great inspiration to me, LOVE YOU and your optimisim. I believe you were choosen by God to do all you do and therefore You will NEVER go away,Remember God is stronger than the soothsayers. He has a plan for us YES???!!!! We are the ones choosen to teach others and the medical proffession. Keep marching onward!!!! LOVE YOU!!!!!!!
ReplyDeletethe above post is from me REBA
ReplyDeleteI just had a thought.... did you subtract all the costs from the bracelets/tshirts before you wrote the whole "5% of profits go to research" part? If you didn't, fixing that (or just changing "profits" to "proceeds" might help with the negative perceptions. You could also just put a disclaimer up with exactly what you posted in the comments.
ReplyDeleteIf that doesn't make sense, let me know. I'm a little foggy today.