Fibromyalgia and the future

[Sapphire]

Hi everyone,

It’s been a while since I posted anything substantial and I have wanted to make this specific post for a while now. I also just saw Cubic Zirconia’s post asking about when the next website update would be and this was a final prompt to get me to type this up.

A few months ago, after months of tests and trials, my rheumatologist diagnosed me with fibromyalgia. Here is a definition of the syndrome:

Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues.
Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.

I have suffered from constant, unrelenting pain and fatigue since November 2009. Prior to that I had temporary and recurring bouts of severe back and neck pain, but they always cleared up after a month or two. Unfortunately, now the pain’s here to stay. There is no cure for firbromyalgia and all one can do is find ways to manage it.
According to studies, healthy, active people can develop fibromyalgia, which reduces their functionality to between 30 and 50% of their former selves. For me personally, I cannot sit at a PC for more than an hour a day without being in considerable pain. I have collapsed arches in my feet and a severe muscle imbalance in my back that causes muscles to constantly spasm. Being stationary (sitting and standing) worsens the pain to sometimes unbearable degrees. I am therefore unable to do a lot of what I used to do. My dream has always been to be a writer. Now, writing is a source of misery and pain for me. I have always been hard working, A+ achieving and career-minded. Currently I cannot work a full time position and am at home most of the day, trying to involve myself in other projects (I have dedicated my time to activism of various sorts) so that I don’t go insane.

I wanted to tell members of this forum this because it has implications for the site. I have wanted to update the site and improve the forums for a long time now, but the pain has always prevented me from completing any updates/improvements. I can no longer pretend I have the energy and ability to run a website. So, I am announcing that I am suspending all updates to Beast Wars International indefinitely. I will of course keep the site running (as long as I can afford to) and these forums will remain active. I just cannot commit to uploading any new content to the website proper.

I am really sorry to have to announce this, but it’s something I must do. I am very happy to see people still enjoy these forums and hope that someday my condition will improve enough for me to get back into updating once in a while.

I do check the forums as often as I can, so please don’t take my lack of posts as a lack of interest. I love the community we have here and I’m really glad people have kept the enthusiasm going. You are all awesome.

That’s all from me for now. Thanks for reading.

[una]

I have never heard of Fibromyalgia before, but man.... sounds dreadful.

But like you said, I hope you do find ways to manage this condition so it doesn't keep you from doing things you love to do.

Be strong, Sapphire, and keep fighting.

[Beastbot]

Fibromyalgia.... I know I JUST saw a commercial on that the other day, some new drug for it that significantly reduces symptions... name for it escapes me right now. I'm sure you know all about that stuff by now, anyways.

Regardless, *internet hug*

[Darkshadow14]

Sapphire you take it easy, your health is more important. When you can, update, where not in a huge rush. We have the threads to keep us occupied! *Hugs* Do try to check in as much as you can, so we know that you're okay at least.

[Blackrosefencer]

Fibromyalgia.... I know I JUST saw a commercial on that the other day, some new drug for it that significantly reduces symptions... name for it escapes me right now. I'm sure you know all about that stuff by now, anyways.

Regardless, *internet hug*

It is called Lyrica. I see those commercials all the time. According to studies, patients taking Lyrica had less pain from Fibromyalgia than patients taking a placebo. That's what they said on their website anyway: http://www.lyrica.com

What are you thoughts about taking on an assistant website manager (or whatever you want to title it)? An assistant could help you keep the site updated and managed. Certainly your health is of the utmost importance to all of us, so please don't think that by suggesting this I'm in some way minimizing your situation. But this is clearly something you love to do and continuing to do things you love is something you probably should try to do. It would greatly help your health to feel good about yourself, to have a positive outlook on life, and to still feel like you have hobbies and interests. But you can't do any of those things if you're stressed out and feeling overwhelmed by the workload of this website or if you stop running this website entirely. By taking on an assistant, you'd have someone with whom to share the responsibility of the website....the work would be divided, so you'd feel less overwhelmed and stressed out (which is not good for anyone with health problems), but you'd still feel like you were a part of this site which would help your morale and self-esteem.

You could even have a small team of people help you keep up with things. In fact, you already have a small team of people now who are doing some things already like managing the RPG, weeding out flamers and spammers, keeping the peace within the forums, etc. I'm sure anyone of those people (or anyone else for that matter) would be happy to help you keep up with the site so that you can take care of yourself, lower your stress, help you act on ideas you may have for the future of the site, and help you stay involved.

Anyway, it was just a thought. But like we all said....get some rest, and hopefully you can keep your symptoms managed enough to keep doing some things that you like to do. Maybe ask your doctor about Lyrica and stay healthy.

[Alak]

Ouch, sorry to hear about that. If you have to take Lyrica, then I hope you have a good insurance plan cuz that's not a cheap drug (I work in a pharmacy part-time). Try to get coupons for it if possible. On the bright side, October 2013 is when its patent expires so more cost-efficient generics will come out next year.

[Blazemane]

I'm so sorry to hear things haven't gotten better, Sapphire.

And we understand. Take care of yourself however you need to. Thanks for everything you've done in making and maintaining this site. I've been here since a little before half-way through high school, and I honestly can't quite imagine what the years since would have been like without Bwint.

[NaitoKage]

Ouch.. Sorry to hear that. My mother has suffered with Fibromyalgia for the past 10 years or more.. along with a long list of other ailments.. Just try not to let the depression consume you, and don't worry about the website. The most important thing of a website isn't how pretty it is, or even how functional. All that is important is that it runs, and that the community enjoys being there. You've managed both, and even the hardest part of forming a community, not many people can do that.

[starshadow]

Sounds serious. Is it life threatening? Have more rest Sapph!

[Sapphire]

Thanks for the kind messages of support, everyone. It truly means a lot to me.

Starshadow: Thankfully it is not fatal! It does have complications, though. Along with fibromyalgia I get bouts of chronic fatigue and depression. ‘Tis a sucky thing to have.

Blackrosefencer & Alak: Ah, Lyrica. I am actually taking those pills and have been for some time. Unfortunately, all they do is take the edge off the pain. The pain’s debilitating now rather than unbearable. But thank you for letting me know. I will keep my eyes and ears open for anymore breakthrough drugs, especially cheaper variants since I don’t have a health care fund and have to pay $200 a month for the darn things.

As for delegating work in regards to the website: I used to. BWINT’s been around since 2003 and over the years I have co-run it, shared the running with a few people and eventually wound up right where I started, running it alone. It’s a long history, but basically the reason I am running it alone now is that in order to successfully share the management of it, I need a person/persons who are able to do the following:

1.) Write HTML or competently use a website editing program (like Dreamweaver).
2.) Keep very organised and be able to compartmentalise aspects of the site and its content prior to an update
3.) Understand my crazy system of updating (I’ve done it a specific way for 8 years)
4.) Be prepared to put in a lot of time responding to emails from fan fic writers/ artists, content submitters etc.
5.) Create web graphics

They also need to be someone trustworthy. The site is my baby, and I won’t share its passwords and hand over its contents with just anybody able to make a webpage.
If people on this site would like to form a team/committee who are willing to be responsible for sharing the workload and coordinating new content, that alone would be an enormous help. If all I have to do is link up the updated webpages, write a Latest Update report and upload the new stuff with FTP, that’s fine. It all depends on what people are willing to do.

I have a team of mods/admins listed as running the forums, but really it’s just me and Nurann (and OOP in the RPG section). My other mods, for various reasons, don’t post here often or are unable to help with the enormous amount of spambots that hit our security nets every day. If anyone knows any phpBB then I’m very happy to hear from you, as right now we need to jack up our spam filtering abilities.

That’s the long and short of it. I do agree with your sentiments, though, blackrose. It’s just not so easy to make it happen.

[xCubicZirconia]

Oh my God! I'm so sorry you're in pain!! Do pain killers of any kind work? I'm worried about you now! I come back to the forums to find out you're not doing good.

Do back massages help? Are you able to get the meds for it? You're safe though, right? You're going to be ok?

[Razor One]

If there's one thing that can be said, it's that Sapphire is too hard working and too motivated at times.

Okay, that was two things, but you get my drift. You work yourself to death Sapph, if not for this site then in everything you apply yourself to.

You have our support. Then again, you always did .

Funnily enough, there's a few websites out there where the forums are actually a larger part of the site than the sites themselves. Some of those places have forum members that aren't even aware that the site has a front end and thought that it was only a very, very popular web forum at first.

While I'm not saying we could ever be quite that big, the community we've fostered here is small but fun, even without updates the forums can be extremely engaging.

[Blaze Raptor]

Man, I haven't lurked around here in ages.

Sapph, please please please get some rest. Your health is always more important.

And, really, it is true. The community is really what makes BWInt what it is. You can have all the website content in the world but if you don't have people to enjoy and support it, what's the point really? That being said, I know you have more than enough people who would help you keep up the site. That includes me. I've seen far too many dead BW sites for this to be one of them.

I don't have nearly as much time as I had years ago, but I'd like to support in some way if someone's going to for a committee. I mean, I guess we could set up a little webpage just to put the updates up on or something if we really have to.

What I've always wanted to do since I'm such a pack rat, is to create some kind of formal historical archive. Too often I've found some interesting BW stuff to either forget where I found it at or to come back and find it completely gone. *cough* My Little Beast Wars *cough* (I still miss that Christmas Carol photo comic. It was hilarious.) Well, I guess that reminds me to put that higher up on my list of projects to do now.