I am concerned at your tone in your post. What exactly do you think Lupus is? It is not a death sentence. A good deal of Lupus patients live normal length lives. Yes, people CAN die from it; but that is not the overall norm.

LadyBrannon

How old is the data/information you have looked at? I know of some friends who, when diagnosed, found "OLD" info and thought they were sentenced to death.

I am happy to report that they are very much alive and in remission.
Again, I would really like to know what you think Lupus is and where your information came from...

LadyBrannon

Hi!
Thanks for your reply. A friend of mine died of Lupus a long time ago. Her husband was a wealthy attorney so health care was not a problem. They went all over the country and to foreign countries looking for help. She was such a nice lady every one liked her.
The Lupus attacked her whole system so her death was a blessing.
Another friend of mine has it now and her kidneys are failing so it is a matter of time for her too. See; it does kill.

When I saw on the script I was being checked for Lupus; I thought Oh No! The Neurologist who referred me to the hematologist never mentioned Lupus so what she didn't say scared me more. I knew it had to be something really awful or she would have said some thing. If they don't say anything it is worse. I had to read it on the script!
I was so convinced I had MS but all four Neurologists say no. I could deal better with MS and daily injections of Copaxone to keeep it at bay.
No one knows what it is yet and my symptoms have been going on for a year.
I have been looking for info on the web on Lupus but so far it hasn't sounded too positive on any site.
I guess I'll wait and see; hopefully my tests will be negative or hopefully show something I can deal with. I feel at 54 I still have some warranty left and I don't want to die in agony so that is why I filled out a living will for comfort drugs only.
Take care,
Janie

My exact reaction!! But since then I have been seeing a wonderful doctor that was, herself diagnosed w/lupus at 12 years old...She is now 57 and 3 healthy kids..It is not a death sentence. I have been told that attitude is most helpful with this disease..Try to keep a positive one. Easier said than done but it does help!

Thanks to all of you who sent nice messages of support. I appreciate you answering me. Since I started posting messages I am getting so much spam on medical issues that I am going to block any e-mail from this site and I will not visit this site or any other like it.
Sorry; but I had 33 messages yesterday and only 4 were from my friends.
Any time you walk into a chat room you are open to spam. I am done with chat rooms.
As a 54 year old woman I don't need my penis enlarged, discount drugs from a "reliable source" or any other of that other stuff I have been getting
thanks,
janie

Wow! I haven't been on for a while, your right lupus is not a death sentence. The first time I heard I had it, I was scared also. I'm sorry to see that janiedee was scared away from this site. I wish we could let her know that she can control what she receives. There is a lot of cunfusing imformation out there. Plus not everyone has the exact same symptoms. Thats why its so hard to find it. Its very important to have other people to talk to that really understand what it feels like to have lupus. Thankyou for being there with updated imformation, and also for your quick responces to those who need it!

Sharon

Thank you for your kind words! They mean so much to me!

I remember being diagnosed, as well. I also remember driving to my husband's office (i was 26) and having to tell him. We held each other and cried.

Since then, he has been a huge support to me and has encouraged me to learn everything I can. It is true; knowledge is power.

Speaking of which, I am right now on a mission. I hate that we are so under represented in the public today. Most people have no idea what lupus really is...So, I have been e-mailing and letter writing to news sources, magazines, etc. To so more informative articles. Keep your fingers crossed that it works. I am sure I am not the first to do this...So, i'll just keep trying!!!!!!!!!!

ladybrannon

I have kidney failure due to several illnesses (heart desease,lupus) and need to know what I can eat, my dr only says low animal protein. Please help me

I think that is a great idea! :d I think the more people know about lupus the easier we will be accepted.

The first thing that comes out of peoples mouths is, can I catch it? Not stupid, just uninformed! So let us know what happens.

I too, remember when I was diagnosed, I just sat there and cried. Then I set out to find out more about it. Now I don't cry out of fear, just frustration! Most people who die from lupus die from secondary infections, not the disease it self. Or people who are never treated. My self, I plan on living a very long life in spite of lupus! And i'm so very glad I have all of you to talk to. I'm sorry we lost one, but maybe she will be back when she is ready to learn more?

Hugs,
kris

Thanks kris...

Your post made me remember that last week I contacted the sharon osbourne talk show...Next, ellen degeneres.

Yesterday, our support group held a "learn about lupus" fair at one of our local malls. What a *huge* success! So, while I wrote that post in july, after reading your post, I find that I am still stoked and ready to do more...Recharged my batteries, if you will.

Yes, I am very concerned about the woman that started this post series. I was afraid that she had gotten a hold of old information that talks about when lupus was a "death sentence." that is so *not* the case anymore. I know that we all suffer, but we *are* alive...I can smile about that, you know? I still get to spend time with my friends and family; no, it is not like I would want or hope for...But I still have them and they support me.

I may have lupus, but I am blessed beyond my years *thanks* to lupus.
Blessings to all,
ladybrannon

This is to the person who has questions about diets in regards to his/her kidneys due to the diseases that he/she has...

What you should do first is contact a nutritionist and talk with them about what you should eat and avoid. When I was in the hospital right after my diagnosis I met with a nutritionist and she laid out a very basic, very healthy plan for me.

Your nutritionist may have other ideas in mind for you which is why I am hesitant to share the information given to me. I don't know how much kidney involvement you have...I was fortunate not to be as far along as the doctors had feared and so am able to eat certain things that may othewise be considered "no-nos".

What I can say is, the first thing the nutritionist will probably ask you what size you may think a 3 oz steak is, or 3 oz of any animal/fish protein. If you think it is bigger than a deck of cards, then that is where you probably will begin. 3 oz is a size of a deck of cards.

Talk with the nutritionist first, and then i'd be happy to share ideas she may not have considered.

Clarebear