hello everyone. i feel so humble to be here in this setting. it's been since the 1990's i was affiliated in a lupus support group and i am honored. i like to help reach out to all of you; i'm not under any doctor's. i've been blessed and i have a need to give it back to ..so let me start here
I'm honored to be here ..I need to reach to help many who have chronic fatigue syndrome, skin disorders, and lupus along with other autoimmune disease. I've been in a quiescent since the early 1990's it was a friend of mine who had systemic lupus; I was diagnosed with discoid lupus, her oncologist said if you want to live with lupus adapt to vegetarian like diet, without weaning I immediately applied the method..of the meat I did eat chicken if I can remember that far back, exercised and continued to raw juice all vegetables and some fruit..since 1988..it has brought me to where I am today. I haven't seen any doctor since the early 90's for anything; I was one of those who was angry for I was diagnosed in the early 70's back then they said I had hives, and no doctor told me how to live with this disease...until that day from my friend's oncologist..the only physician I see is the Dentist..My kids are amazed although say at least get a checkup to see where I am but; I say this if it ain't broke don't fix it..I'm originally from California. In Sacramento I was the V.P. in my Lupus Support Group and I was the only one not a patient. I'm a firm believer through prayer diet moderate exercise if you can lite on protein because if your immune system is failing why would you want to put something in it to tire you.. no dairy ...now let's talk joint pain ..I'm sorry for going on ..I'm trying to establish an outreach to many ..I'm a real estate agent and the last specialist I saw shook his head as if to say that's a no no..and yes after 25 yrs at it ..I said enough..and looking at reaching out to many who are like me..I'm new to the social media ..do any of you experience hair loss, joint pain?
Nice to have you with us and also hear you experience on how you've dealt with issues, there's quite a few members who have done what you've done regarding diet etc and it does'nt suite every Lupus patient it's down to what they have in general and also what comes with their Lupus but if your able to help any members who would appreciate your point of view, then all the better.
I myself have to many issues going on with A1 Diseases overlapping autoimmune diseases besides other ailments combined and i know for one, i'm unable to do the issues you've mentioned.
thank you tez and may God make it easier for all of us. Not for one moment I take for granted that my being in remission from discoid wont' become systemic so I have to guard heavily and be vigilant. Not everyone has Systemic Lupus issues the same nor Discoid Lupus the same .
One of my friends who was having extreme hip pain..and has a daughter who has fibromyaljia (sorry for the mispell) I told her when she visit to ask the doctor to check her for Lupus...the doctors reply was this,"everyone has lupus ...lupus lies dormant in the system until something tramatic happens," and he didn't test her ultimately she had hip surgery. My point is sometimes Tez our immune system needs more attending to than others because of stage of our Lupus at the time of diagnosis. My advice I give many of my friends and family. To be check for Lupus it has over 1000 faces. It's hard to detect and it's hereditary! They should treat the check up as we women do for breast cancer "Prevention"...Thank You For Responding Tez
I know it's inherited as both myself and sister have it and to how the body can be helped in how your suggesting is to what stage members have gotten to but although you tell family and friends to be tested it's not that easy to detect Lupus...as it fluctuates with our bloods and can cause false readings..that's why so many of our members are going through hell suffering and just want a diagnosis, all through this reason.
There maybe a good many with it but unless it shows it's form one way or another you'll never know plus it's symptoms are identical to fibro and lyme...so if people have the symptoms it could be any 3 they have.