I have started this site in an effort for us to learn from each other, to share advice and to be a support system for each other. This site is not only for autoimmune disorders but for anyone who is having a problem dealing with any kind of disease and is having a hard time adjusting and coping with their ailments. Sometimes a few words of encouragement coming from others with the same affliction can make a world of difference.
So basically, whenever you look for a Lupus support and awareness site, what I’ve discovered is that they’re all the same. What you just read above, that’s basically it. That’s what you’re going to find. A group of people get together to speak about their sickness and what’s bothering them and how their families don’t understand and although it may seem like I’m putting this process down, I’m not.
I’m really not. It worked for me and helped so much when I was first diagnosed. And I’m sure it’s been a blessing for others as well. But then came a time when it just wasn’t enough. I laughed, I cried, I shared, I educated myself, and now what? What do I do now? And so Lupie Butterfly was born.
So Lupie Butterfly is a support group and so much more. And since you’re witnessing the Genesis of the site, your suggestions and opinions will be crucial in determining the direction the group takes. I want to know what you guys want to see. And I myself have so many ideas that I want to implement. Yes, first and foremost it’s a support group, because when people first get sick, that’s the first thing they go looking for, support, information, and someone who understands. But I want to make this site so much more. One thing I’ve been working really hard on is a feature article / guest blogger section. I’ve spoken with multiple individuals who are experts in their fields such as diet and nutrition, health and exercise, skincare for Lupus, etc… and I really want all of us to get involved, and please let me know what you’d like to see or learn about. I’ll do my best to research it or find an expert to talk and educate us about it.
Once we’re up and running, there are so many other things I’d like to do. But again, this is not about me, it’s about all of us. We can vote and decide together what features would benefit our group the most. We can get together, pick a topic, anything at all, and dissect it in a weekly chat, we can have a book club or do movie reviews or product reviews or talk about what products work best when our Fibromyalgia acts up or we can take a poll about topics, anything at all. We can set up surveys, etc… I’ve also set up the site with video chat capabilities and sometime in the near future, one feature I’m really looking forward to is inviting guest speakers to chat with us and we could choose to either do this live where everyone signs in to the video chat room or we could do this strictly through text. The sky is the limit. I’d also like to have a section where members can share anything their proud of like their photography or artwork, a beautiful picture their child made in kindergarten, a picture of their prized Mustang…. it doesn’t matter. I want everyone to share something they can see whenever they come in that gives them some joy. We can vote on member or contributor of the month. Wow, the possibilities are endless. I’m actually very excited about this but you guys could probably tell. And I think some people will really love and appreciate the next idea. I used to sell Avon and Scentsy in the past and even though I knew I wasn’t going to get rich selling this stuff and people considered it MLM, I really just did it to pay for my own makeup and candles and as a way to interact with my friends without being pushy. So I’d like to give the opportunity to those who want it to post about their products once every 2 months. A lot of people don’t like to be bombarded with this so I have to respect their wishes as well. Now this is not an invitation to load the site with spam. I will shut it down real quick. So if you use this option wisely and with respect, it will definitely be made available to you.
Moving right along, some days I’m just tired of being sick and tired. In the past, whenever I had an active flare up, I’d find a Lupus support site, dwell in my misery, do the woe is me thing, and go to bed in tears. But now I’ve come to accept the fact that I’m sick and I’ve decided that every once in a while, I need a day off. I don’t want to be sick today. I want to make some friends and laugh, maybe cry, share some funny stories, maybe read an article or two, join the book club, maybe sign up for the viewing of tonight’s feature movie to be discussed tomorrow, just have a little bit of fun today. Oh wow, there’s a pretty cool store within the site too! Maybe I’ll pick up an e-book from the digital section or a little teddy bear or cancer awareness pin from the awareness section to share with my friends. …..
Guys, I want this site to turn into like the place to be, like a one stop shop for all your needs healthwise, physical, emotional, etc.. And to be quite honest, it almost didn’t happen. I almost abandoned the whole project. I’ve spent more money than I’ve had in my pocket having to borrow and find creative ways to pay my web designers and for other necessities. And right now, I’m up to my 4th designer, a very lovely girl who has renewed my faith in this project. Because believe me, two days ago I gave up. Since I started this project, I’ve had two anxiety attacks, a lupus flare up, I’ve lost a bunch of money and didn’t have the strength or the energy to continue. It didn’t even matter because I was out of money as well. So I mourned the loss of my baby, my little Lupie Butterfly once again. Sometimes I think you have to hit rock bottom and embrace these emotions and the pain they bring about. Because when you don’t do this, everything stays bottled up inside, festering, eating you up alive until you just can’t take it anymore. And the result of this can be so much worse. So I took a couple of days, mourned, cried, did the woe is me thing, I’m such a victim, etc, bla, bla, bla, came out of my funk, and got back to work to nourish my butterfly and make it grow.
I know this has been a pretty long intro, so please accept my apologies once again, but there is one final subject, in the name of being transparent, that I have to bring up. So as you can see, I also decided to run a store and I have a donation page. I don’t want to say that I lost a lot of money with this project but rather that I’ve invested more than I could afford. My sole source of income is a disability check and it’s really difficult to make ends meet. But honestly, I don’t want anybody to come in feeling pressured to donate or to buy something. If I never make a dime, that’s fine. I’ve always found a way to dust myself off and pick myself up again. But at times, I’ll find objects or ebooks that I really want to share with you but I don’t want to sell the information because I believe the information to be important and I really want you to benefit from it without having to pay for it. Why? Because I get it. Most of us are disabled and on limited incomes. Some of us are family members who are trying to help out. And I don’t want anyone to be deprived of something that might help them because of $10 dollars. So please, take whatever I give you, read it, enjoy it, learn from it. I obtained it for you so that you may benefit from it. And someday, if anything I have offered you or shared with you, or written for you enriches your life in any way, then you may want to consider donating a cup of coffee to me, but again, I never want anybody to feel pressured to do so. Also my charity of choice is the St. Jude’s Children’s Hospital and I also make donations to them as often as I can. I can’t say with certainty how much I will be donating for the month or what percentage, but no matter what, I will be giving them donations. And maybe sometimes, we can donate to a charity of your choice.
I finally made it through this intro. Yay! I can’t wait to get started and getting to know all of you. But in the meantime, if you have any ideas or suggestions, or you just want to say hello, I am just an e-mail away. Please email me at ContactMe@LupieButterfly.com and I’ll get back in touch with you soon. Until then my fellow Lupies, Spoonies and Butterflies.