Monday, November 12, 2007

a little awareness

As most of you know, I have a disease/illness called Systemic Lupus Erethromysis/nephritis. ENGLISH? It a screwey illness that makes you feel like crapp. Essentially your body cannot tell the difference between infection and what is not infection so your white cells attack everything, God forbid you do have infection then it goes wild.The medications they give you for it, yeah they help but it is a kinda vicious cycle. YOu feel horrible and catch everything. SO when you do feel better you run around trying to make up for the time lost of being sick. IM telling you all this NOT to be a complainer but, because I have been contacted by a really wonderful Fella (HI WICK) with the lupus foundation of America about my blog. They are really trying to get awareness up. Most people look at people with lupus as complainers whiners and just lazy. That is totally not the case. These are some of the most brave and hard working women I know. Most of them try to hold jobs hold their familys together even though they have pain and severe fatigue.

I encourage you to look at the blog for LFA and read some of the information.Click on the links on the side of the other peoples blogs. It might just help you to understand a little better and not cast judgement so fast.
I KNOW I for one do try to go on. BUT PEOPLE do not understand, when you get a cold its not just a cold, it effects your entire body. THen you deal with depression and isolation. IT is a diagnosis that is often timed met with alot of criticism. IN my case I have a very loving and supporting husband, wonderful friends who understand I can't be in the sun and that since I got shingles along with this... It takes a toll just to get dressed. Wearing underwear some days is an accomplishment.

I havent been home to see my family in a year because riding in a car that long is painful.I go nowhere. I stay right here in my house. I no longer drive. The thought of having to wear a bra that long is beyond anything I want to imagine. BUT If you look at me you cant tell there is anything wrong. Well with shingles right now you kinda can since I do more resemble shrek. Contracting shingles and the illness's I caught while attempting to work this last time really effected me physically and mentally. It is hard living in an isolated world, It is hard feeling sick all the time. But with the power of the internet and the hobby I love so much that I started as therapy.... we take it a day at a time.

Again, IM not complaining. I have a wonderful life. Its what you make of it. I do what I can where I can. I have had to learn to say no. I have had to realise I do have limitations and just bust my tail on the things I can do. Right now IM trying desperatly to make money for my family due to insurance issues. Im doing what I can do.. Scrap and make cool stuff. I dont want to be rich, I dont want to be a celebrity in the scrapbooking world, I just want to make enough money to help my husband pay our bills, TO keep my daughter in christian school, and continue doing the hobby I love so much. I encourage you to go read the stories of some of the lupus survivors. It will help you to understand what happens with this disease and maybe the next time you see someone that has it...your a little more understanding.

I also want to let you know about this months MY LIFE challenge at scrap-diner. We do pages every month On our lives to put in our book of me. SOmething to pass down to our children and familys. This months THEME at the diner is "STUFFED"
I thought the page we would do is "The Good Stuff"
What is THE GOOD STUFF in your life? complete your page and put it in the scrap-diner gallery. THen link it back to the forums so your name can be included in the drawing for a RAK. (random act of Kindness)
Here is the example of what my GOOD STUFF IS (yes I know this is an old photo but we havent taken any good family portraits lately)
MY good stuff is definitly my family. My husband is the most supportive most understanding person I know. We FINALLY got to have a child the most wonderful thing that ever happened to me is BELLA. My heart in human form is what I call her.
SO there ya go.

I hope you have a blessed day, and come out of this post with a little better understanding of some of my fellow lupus survivors.


chronic chick said...

I enjoyed seeing your blog. Your scrap book pages are just wonderful. I've always wanted to try just haven't :)

Korie B. said...

OK, I love this "My Life" challenge. I'm almost done prepping for my huge "Murder On The Last Train To Paris" class. Once I'm done, I'm all over this challenge!

Dawn said...

Wonderful information you have shared with us today! I didn't know you suffered with this. HUGS!

I am going to try and make it to the diner and check out the challenge...

Jacinda said...

Love your latest page Nancy - especially how you gave the leaves dimension.

How neat to be asked to represent the Lupus foundation too. Seems like everyone wants a peice of you lately ;)

noelmignon said...

Hugs Nancy... and that page is wonderful!!

Wendy said...

I think it is great that they picked you. I think you are a very talented chick. I am so glad our paths have crossed and that we are friends!!

Little Old Liz said...

Nancy -
Our Hubby's work for the same (dictator) Company. Let's chat! I'm lizandrsn at aol dot com

Greta said...

{{{{{hugs}}}}} love your post and off too check out that LFA site!!

love ya girl! mean it ;)

Jozzie said...

Hi Nancy!

Just dropping by to say hello! I'll be praying for you and your family and hope you all have a great thanksgiving!


Chris said...

Hi Nancy, just popping in to check out your blog. Thankyou for filling us in on your illness. I have a SIL with lupus and my younger sister was diagnosed with MS 4 years ago, I know it is not easy. So today apart from saying thankyou for sharing this with us and know that you are in my thoughts and in my heart and sending you all the hugs I possibly can cyberly.
Take care my friend hugs to you
Chris xo

Lynn said...

awww chickie - your sense of humor w/always see ya through and i'm so glad you zinged me and we're buds. the STUFF in your life always makes me smile.