Thank you for pointing out this thread to me - as I didn't know about it prior to my own thread posting earlier. This letter is really powerful and useful. I'll have my husband read it. Pretty much every point is exactly how I am feeling and highlights everything that I have wanted to say but just haven't known how to phrase it and get it all out. I also hate how many people have tried to suggest "cures" to me - particularly some of my friends who are really into holistic treatments and alternatives to medications. I haven't gone down that route, but a lot of them think that by taking some herbal supplement or trying some type of mineral that it will magically heal me and I should just try taking it and quit complaining. But I'm glad that everyone on this website promotes the importance of talking to their doctors above anything else. I was shocked to hear that some people have died from lupus...I never even knew that. It makes me feel frightened but I'm glad that you shared this with me because if I have my husband and other loved ones on my side, it could really help me through this.
the thing that stands out to me, about fibro is....
Originally Posted by Ellie Hansen
they know that it causes or is caused by a chemical inbalance within the brain and vertibrate.
any medication that does not address this is only addressing the symptoms, not the cause.
i also know that drugs like plaquenil and mtx are refered to as desease modifying drugs.
they address this inbalance.
Actually the spoon theory I find is the best way to explain lupus. You can try and give him the definition of lupus until your blue in the face but it is hard for people to understand lupus. I just wish the spoon theory was available to me when I first got sick, trying to explain this disease to a bunch of high school teenagers was not easy. Even my twin sister still after 7 years will make a rude comment about me being always tired all the time and stuff like that.
Also Ellie, I have the same problem with people trying to tell me theres a "cure" especially the holistic people. Now thats fine and dandy for some people to believe whatever you want to believe but just don't try and preach it to me.
Just one last thing, just keep in mind that not everyone understands or believes that were sick all the time and there is no magic shot to make it all better. Don't let it get you down if you find people who are like that and your not alone because you do have us on WHL.