Thursday, February 17, 2011

In My Life

Though I know I'll never lose affection
For people and things that went before
I know I'll often stop and think about them
In my life I love you more. ~ The Beatles

We have been up and running for 6 months now, and many people have come and gone. Some did not like the site, some felt ignored. Others got pissed off or pissed me (really) off and got banned. Some just did not get what they needed from my blogs or the Fun House and some had needs that changed, making the Facebook support site obsolete. The internet is an oddity. We are the first generations to experience the "virtual" world. A world where you are not judged by your skin color or accent or piercings or disabilities. A world where you can, technically, make yourself into anyone you want. Now this Facebook craze is a whole other ball-game. Actually socializing and becoming friends with some typed words and a picture. Forming attachments and a vested interest in the success or failure of people you have never met but have feelings for. Then put a bunch of sick people together for a support group and see how interesting that one gets!

When my blog went "live" in August my Facebook page quickly blew up. I started The Fibromyalgia Fun House. Then the miserable and desperate reality so many people with Fibro live with showed its true colors and I felt a strong pulling to see if an awareness campaign could not get stirred up with a little bit of frenzy and excitement. Sick people were facing horrible injustices and were too ill to do anything about it. I  had not only been where they were (or worse), but had my Fibro managed and wanted to be that strong voice that was so desperately needed. Whatever was currently in place was clearly not doing the trick. It eventually came time to go back to work but my readers of the blog and Facebook friends expressed an interest in tee-shirts to support the cause. I was, quite frankly, surprised! So many had found kindred spirits, understanding, compassion and a few giggles here and there, but I had no idea the esteemed regard in which it was held. I figured hey, if they will buy it I will keep blogging every day and set my sights on promoting The Fibromyalgia Crusade instead of going to work in some office here or there. I never represented this as anything other than a for-profit business, knowing the non-profit will come as soon as I can make it happen. But let me tell you, I have never worked as hard for so little money as I do now, promoting The Fibromyalgia Crusade and blogging every day.

A lot of the dear souls that were my biggest supporters in the beginning have gone away. Most have stayed. New friends have come on. Many more have yet to join. We have friends of every stage in the Fun House. Some for a reason, others for a season and yet still others for life. I have found when the negative haters come at you it is usually their unhappiness projected towards you. It is your choice to pick it up or not. We have had our ups and downs, lines have been drawn, friendships have been tested. But I am very pleased with the progress The Fibromyalgia Crusade is making and still very proud of The Fibromyalgia Fun House, the quality of people we have to hang out with whenever we need a laugh, a cry, or some big mixed up version of both! 

Thanks for joining,
Leah

For Tee Shirts and Awarreness Bands: 

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

3 comments:

  1. Leah, I am so thankful you started this site. I have been able to deal with my fibro a lot better with the understanding of others and what we all go through in our daily lives. So many of us have suffered the injustices of the medical community and it has been a blessing to have you be our voice. We all are a voice for this horrible illness that none of us wanted to have in our lives. But it is here and we have to stand together to get the message out. God bless you and gentle hugs.............Marilyn Smith

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  2. I personally want to thank you Leah for bringing us all together. I don't comment much but I do look forward to reading your blog & also the Fun House postings. So many times I have wondered if this or that is caused by my fibro or my scoliosis & then it amazes me when someone else posts the same pain that I am suffering from! I no longer feel alone or a victim of an overactive imagination. Thank you for all the time & effort you have provided to us all!!

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  3. I am new to this site (couple months) and new to Fibro. I can say when I started reading the posts, I look forward to what the next day will say. It's nice to read the thoughts and comments from other people when living with Fibro. So if don't stop writing or I will have nothing fun to read everyday :) And again Thanks for sharing.

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