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Posted 12/3/2007 5:06 AM (GMT 0)
mad   Sorry everyone. I am feeling so frustrated right now. When I think everything is good here comes a reminder that I still have Lupus. On the outside I look (normal) that's what people love to say to me. How do you respond to that. Sometimes I get annoyed then I try to understand that they don;t understand because I am still learning about this disease. I am often amazed at  the responds when they see all of my medicines. They want to know what they are for and why so many? I try to explain based on the information and research

I have done. I feel over whelmed One think goes away only to be replaced with another sympton. I started out hurting all over. I took my medicines and begin to feel better at least I thought so. Then I started to feel nauseated and tired so I sleep most of the day and ate very little. Can any one relate. Some times I think my body tolerates the Cell Cept better than other days. I am not an expert by no means. I have only been taking it for about 6 monthes at this high dosage. can any one relate to my crazy experiences? 

Posted 12/3/2007 2:46 PM (GMT 0)
(((((((lupus fighter))))))))  I'm really sorry you are going through a rough time.  This disease can sure take us on a rollercoaster ride that we can't get off of.  I think you described so well what many of us go through.  One day you might be feeling better and getting your hope up and the next day you could be feeling so bad that you can't get out of bed. You are so right that it is hard for others to understand how serious this disease is, especially when there aren't a lot of outward signs of this disease and people look at us and can't usually tell we are sick.  If you have family and close friends that you wish would understand lupus better, you can show them or print out The Spoon Theory at http://www.butyoudontlooksick.com   The Spoon Theory is a great way to explain to others what it is like to live with lupus everyday.  There are also some other really neat things at that website too. Hang in there and know that you are among people who really do understand.  One thought about your meds is to talk to your rheumy about what you told us here.  Your rheumy might need to adjust your meds a little.  I've never taken Cellcept, but others here have so hopefully they will see your post and be able to give you some feedback. Take care 
Posted 12/3/2007 3:20 PM (GMT 0)

Thanks Hippimom,

It is nice to be able to talk to some one that understands the roller coaster ride. Thanks for the information about the spoon theory. I really enjoyed that story it was so true. Ireally couldn't have done a better job myself.

Posted 12/3/2007 10:48 PM (GMT 0)
Oh, ;upusfighter, I know just what you mean! Having someone say you look good when you feel miserable is crummy! Hippi is right, this whole lupus thing is like being on a rollercoaster that never stops so strap in for the ride of your life. Some people will NEVER understand what we go through with lupus. A few good friends and family members will understand. I will keep you in my prayers!
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