Storm profile picture

Storm

you want to know me; i want you to know RSD ~ spreading awareness, one person at a time.

About Me


Alright, first things first ~ If you want to add me; send me a message, tell me who you are & why you want to add me. I wont add you if i dont know these things - i dont want pictures, i want friends. ;P So if you send a request and not a note, dont be upset when i deny you... you can add my website's myspace, Storms RSD Awareness (.com) , without a note...
My name is Storm, and I have RSD (Reflex Sympathetic Dystrophy). its the devil. very painful and very difficult to live with. I have had it since I got an arm injury in May 2005. have had many nerve blocks, and too many months of increasing, spreading pain, nov '06 neuro visit was told that rsd has been spreading to the rest of my body. I've went through many tests (mris, brain and spinal scans, emgs, bone scan, etc)trying to rule out so many things ... doc wants me to see a specialist in Chicago, waiting for auth....
I am stuck in bed often, using a walker and the wheelchair when I can no longer walk/stand because of the pain and the crippling spasms that make me instable and make me fall over, etc. and using a walker w/bad arms is very hard. I fight with this monster every day, but it is hard! I will never give up though...
Instead of letting it consume me, I am fighting back - Since my diagnosis was confirmed, I began to take an active role in spreading RSD Awareness. I should point out that there is no cure for RSD as of yet, only treatment options that reduce the pain. And many doctors don't even know about it, but it is not a rare disease!
Awareness will lead to better treatments, and hopefully even the cure.
So, read my blogs, and check out my website, It has lots of helpful links & info. It even has an "RSD FUNDRAISERS AND EVENTS" page, SO CHECK IT OUT!!
www.StormsRSDAwareness.com
My Website's MySpace:
Storm’s RSD Awareness (.com)
And check out these sites also:

www.TKORSDS.org
www.MySpace.com/FightRSD
www.rsds.org
www.rsdhope.org
Thanks. Have a great day & Bright Blessings to you all.

My Interests


Fall, Halloween, RSDSA (I am a member), Spreading RSD Awareness is something huge in my life, its what makes me smile - knowing I am doing something to help fight this monster! click the pic to see my site.

I love crafts, CHAC, art, Stampin up!, Nature, gardening, NHGC, Astronomy, Stars, The MOON,

reading, cooking, CCoA, shooting, NRA, fishing, poker, Renaissance and Medieval era, SCA (Society for Creative Anachronism)...
I love to sew & make stuff (like all my Dreamcatchers), but havin issues with that because of my RSD - most of my favorite things & hobbies I can no longer do.
I love Gardening! Herbs (Lavendar, Star Anise, Star Jasmine, Rosemary, Mugwort- all the good earthy crafty herbs!) and some flowers and veggies too.. I like to design gardens, and houses, and do all the little decorative things to bring it all together (interior & exterior)- cant do any of this at the moment, but will again one day, when we find a cure...
I love Dragons, wizards, witches & fairies. I love my pets, I have an awesome Catahoula Leopard Dog (my Bullet!), 3 Box Turtles (Hurcules, Samhain & Mabon), & 2 aligator lizards. and we also have a fosterdog, Bruiser - but he needs a new home, and quick :(
Used to have a few Cats, wish I could have one again, but *sigh* hubby is allergic to them

I collect 70's style Mushroom stuff (like my s&p shakers, canisters, burners ...).
My Brother has made me begin a button collection, which I will be sewing onto the window treatment in the craft room (once again, havin issues w/this, so just collecting in a jar until can sew again).
I collect Dean Koontz and Stephen King books, i have most but am still getting all their pseudonym books (wee ..).
ummm ....... Yes and my biggest collection: SOCKS. dont ask why, i just love socks, possibly cause i hate bare feet, i dunno. i have a growing collection, they have taken over many drawers already, fav ones are stripped & knee/thigh high. I LOVE STRIPES. i always have something stripped on. i have stripped sleeves for my hurt arm, so i look kinda funny, always have one stripped arm... hmmm, ok no more.

I'd like to meet:


Dean Koontz, Stephen King, Robert Jordan, Ellen Dugan.
the guys from Alice in Chains, Godsmack, Disturbed, Rob Zombie(almost met him before), and some other bands...

I also want to meet my new friends Lorie & Ashley and their family. They threw a great Event, called "ROCK OUT TO KNOCK OUT RSD", (that I am so fortunate and greatful to have been able to help out with!!) that is all about spreading the word on RSD, ROCKING OUT to some great bands, and raising money for the RSD community. I am Hoping (& planning)to take a trip to Cali and meet them at the big event in September!! They are such a great inspiration, to so many people (you really are! its easy to see it. ;P).
So, Thank you Lorie and Ashley for all that you are doing for us! AND Keep Up The GOOD Work!! ;P
Check out their site!!
www.TKORSDS.org

Music:

the heavier the better ... but also some classical & oldies... and medieval stuff... oh and the nature sounds cds, good for meditation.

OK, this has nothing to do with music, but i want it here:

To learn more about Goodsearch, check out my blog about it, check out their site (picture is a link), or check out their MySpace page: GoodSearch .
The Cause I search for is RSD, of course; I use both RSDSA and American RSDHope as my "who do you search for" organizations.

Movies:

Practical Magic, The Dark Crystal, Labryinth
Horror movies; Resedent Evil, 28 Days Later, House of 1000 Corpses, The Devils Rejects, Underworld
The 13th Warrior (based on even better book "Eaters of the Dead" - which is true events, everyone should read this one),
Tombstone, Gladiator, The Fifth Element, The Butterfly Effect, Mr & Mrs Smith, Snatch, Lock Stock & Two Smoking Barrels, 12 Monkeys ...

Television:

ROME, Law & Order (SVU my favorite), StarGate (SG-1 & Atlantis), House, Grey's Anatomy ...
I like DIY and HGTV shows - like trading spaces, while you were out, flip that house, ones that have to do with all aspects of building & decorating the home & gardens...

Books:

Dean Koontz, Stephen King, Robert Jordan - "The Wheel of Time" series (huge favorite), 'Eaters of The Dead', JTHM, George R.R. Martin - "A Song Of Fire & Ice" series, which is soon to be a TV Series on HBO!! Cant wait!
Scott Cunningham, Ellen Dugan - she has such a way about her writing that i feel as if she is a close friend.
I have a growing collection of cookbooks, and am also publishing one as well, Storm's RSD Cookbook, with recipes and RSD hints collected from many members of the RSD Community, friends & family included! The books profits all to go towards RSD Awareness and research - check out my blog about it, and submit a recipe too! You can check out my site for more info as well, click the pic & it will take you to the Cookbook info on my RSD Fundraisers & Events page;

Heroes:

Our Soldiers. Go America!

/a

My Blog

COOKBOOK update

    Alright everyone, heres the deal -  Due to two very unfortunate events- one being very bad flairs, the other being the crash and burn of my beloved computer, who has only just ...
Posted by Storm on Thu, 31 May 2007 10:17:00 PST

FYI re my MIA

Sorry to all if i have missed anything lately... as some of you know i was having a really bad flair.. well its still hanging on, but i am adjusting to it and am feeling a little better... but, as i w...
Posted by Storm on Tue, 22 May 2007 11:56:00 PST

I'm publishing a Cookbook, I need your recipes!

Alright everyone, it is time. Give me your recipes!! My cookbook is officially in the works, and I need your donated recipes!! They need to be easy to make, without too much hassle or effort put into ...
Posted by Storm on Mon, 22 Jan 2007 05:01:00 PST

An Update to 'My Story about RSD'

Hello to all,  I feel I need to make an updated post on this subject, since my condition has gotten worse since my first post about my RSD story.  I have now had 7 blocks for my Left arm. Th...
Posted by Storm on Thu, 11 Jan 2007 06:20:00 PST

A Brochure about RSD

This is a link to a brochure about RSD, from the RSDSA. I want to share this with all of you. You can download it, print it out, or just read it from its site - but however you do it, Please take...
Posted by Storm on Tue, 02 Jan 2007 11:56:00 PST

Search with GoodSearch and raise money for RSDSA!

  Ok, So I found out about this search engine called GoodSearch. http://www.goodsearch.com  GoodSearch is a Yahoo-powered search engine that gives 50% of its advertising revenue t...
Posted by Storm on Mon, 13 Nov 2006 11:47:00 PST

"The Spoon Theory"

 This story, called "The Spoon Theory", was recently shared with me from a great new friend. It was written by a lady named Christine Miserandino, who suffers from Lupus. While her disease m...
Posted by Storm on Fri, 04 Aug 2006 10:08:00 PST

My Story -in short- about RSD

I recently joined a Yahoo Group, RSD-CRPSofAmerica, and was asked to share my story (of how I got RSD, for how long, etc.). So, I decided to put it here as well:   I got injured at work on May 6 ...
Posted by Storm on Wed, 26 Jul 2006 02:58:00 PST

What is RSD, you ask?

There ia a lot to Reflex Sympathetic Dystrophy. So to give you a breif discription is hard. I have taken partial descriptions from two sites to post here, first is from the RSDSA (http://www.rsds.org/...
Posted by Storm on Thu, 06 Jul 2006 07:52:00 PST

A Letter to my Loved Ones about RSD

This letter was taken from http://www.rsdhope.org/, which is a good informational and support site for RSD patients and people who would like to know about RSD. I wanted to put this here because I kn...
Posted by Storm on Wed, 05 Jul 2006 12:59:00 PST