I absolutely agree with you Novia, which is why I am having such a hard time accepting the fact that I have it.

You learn well, grasshopper......

Blessings Bright and Dark,

LO what can I say, I've had good teachers over the eons.

Hello, this is my first post here.

I was sorry to hear about your dx.

I belong to a site that might just help. It was started by a lovely lady, Christine who has Lupus. The site is for people with 'invisible chronic' diseases.

I found it when I read her 'Spoon Theory' the best way to esplain to people why you are lacking in energy during the day.

I was dx with cervical spondalyosis and arthritis in the spine way back in the early 90s.

Reading the message boards there I really realised that I was not alone.

http://www.butyoudontlooksick.com

Blessed Be.

Hello and Welcome dm-uk,

Thank you for the link, I will look into it and enjoy the info I am sure. Enjoy our castle, and I hope to see more of you in the days to come....

Blessings Bright and Dark,

You're Welcome, Lady Elaine.

Hello, Lady E.

After spreading all your brightness with others, it's time we came to give you some Blessings, Healings and good words of cheer!  I am not too familiar with the condition you describe.  I would say tho' that you might want to step back and as others have said, get some more opinions and tests.  Don't despair Lady E.  I think you are a very strong lady, and can handle whatever outcome may come your way.  And you KNOW that we are standing with you.  Relax, and let the good energy flow!

BLESSINGS

BOPTI1

Thank you BOPTI1

That means alot to me. I do think I can do well with support from all of you and the doctors and groups I will work with should help as well. I refuse tolet it take my life over it is something that people can live with, and one of the first things to do is to have a positive outlook. So I will and I am.

Thank you again, the energy in our castle here always amazes me...such strong, beautfiul souls here....thank you...each and every one of you....Our castle would be nothing without you all!

Blessings Bright and Dark,

Laugh laugh laugh

when one makes laughter the center of their life, then tears don't stand a chance, nless of course they are happy tears, then we just let them flow.

True words to live by Novia ! (witchfly)

Now I just have to learn to practice what I preach. lol

Dear Lady Elaine,

  I know this sounds very odd but, you have taken your first steps to feeling better. You now have a name for your physical foe! You have spent so much of your strength by being denied of it's name.
  Now comes the time to learn how to live with and control is affects.
  Simple things like breaking up large tasks into smaller manageable tasks.
  Learn to have sense of humor with a collection of silly hats (large brimmed ones that will protect you from the sun)!
  In my nieghborhood, I'm known as the "Midnight Gardener"!
  Shop quickly and effeciently, store lights are just as bad for SLE.
  On a "good day" put some energy in reserve... cooking.. double the recipe and freeze it for a "bad day".
  If you have special occasion coming up, plan to rest the day before and the day after. Don't let "it" deny you living your life.
  I have no doubt you will be hearing of alot of good suggestions over the times to come, but only you can decide what will be good for you, so choose carefully and discuss it with your Dr.

Blessed Be Lady Elaine,
                               & Gentle Hugs!

Venifica

I found this book Lupus Alternative Therapies that Work at  Inner Traditons I thought it may be worth a look. Just search for Lupus.

Blessings,

Thanks ya'll. I am defintely going to check out the book Taleteller, it's good to see you!!

Blessings Bright and Dark,

Lupus runs in my family, so when my mom was diagnosed with it, I asked to be tested. One test that is done is blood, where they look for rheumatoid arthritis identifiers. If you don't have those, but have a few others, they state that you don't have lupus. Apparently, it is a form of rheumatism that affects the soft tissues as well as the bone.

My mom had the pulmonary form, and they were able to keep hers under control with the inhalers that are used by asthmatics. They did keep watch, to see if it affected any other of her soft tissue. I just wish they had been looking for more than that. If they had, they would have found her bladder cancer earlier, and she might be alive today.

Please, whatever you do, don't let them check only for the lupus in your soft tissue. And don't let them classify any problem you have to the lupus. It might be something else, and they just aren't looking for it. We want you around for a long time, and we don't want doctors lumping you into a group, and not looking for other things.

Lovin Ya.
Serenity

Hi Sis!

Yep, they are keeping track of many, many things...including my skin, bones, organs and also my blood. The tests included much pain and agony in some instances, but I am confrotable with the diagnosis. It explains alot. I now am on medication and actually have noticed an improvement in some of the symptoms. I probably will have my gall-bladder out in the upcoming weeks, but am not too concerned about it. It is a relatively ordinary procedure and everyone knows it is an organ that is actually kinda strange and the body can function well without it (sorta like the appendix, which I still have as well). I will keep everyone updayed and the site will be fine. We have a pretty amazing set-up here, albeit expensive....

How the hell are ya Serenity? I haveb't spoken to you since we chatted on the phone awhile back....stay in touch my Love...I miss you!

Blessings Bright and Dark,