You poor thing. I believe it's harder to hear bad news about
someone you love than it is to hear it about
yourself. First of all, lupus is not a death sentence, and your mom is one of the lucky ones who got diagnosed quickly. You'll hear many people here say that it took years and often several rheumatologists to finally get a diagnosis.
You're doing the right thing in wanting to educate yourself. I recommend that you purchase a book called The Lupus Book : A Guide for Patients and Their Families by Daniel J. Wallace. It's available online at Barnes and Noble and Amazon.com. It will give both you and your mom a lot of good information about
lupus and it will
open the door for dialogue between the two of you. I don't know your mom, but I do know that if one of my kids had approached me wanting to talk when I was diagnosed, it would have meant the world to me. Your mom is a very lucky woman because so many lupus patients have family members that a) don't really believe that they are sick because this is such an invisible disease, or b) chose to ignore.
For me, the Lupus Foundation of American is the best medical source of information online. You can go to the main page and type a question and you'll be directed to the appropriate site. Their main website can be found at:www.lupus.org/newsite/index.html
One of their sites that might be particularly helpful to you at this time is:www.lupus.org/webmodules/webarticlesnet/templates/new_learncoping.aspx?articleid=2260&zoneid=528
You also may want to talk to a professional. I have a standing appointment with a therapist who helps me deal with all aspects of the disease and I don't know what I would do without her.
You are an angel of a daughter for caring so much. I believe you can find a time and a place to
open up a dialogue with your mom. She may have no idea it's bothering you or worrying you so much. You might use the book as an
opening for conversation.
The strange thing about
lupus is that every patient has a different experience with the disease. I, for instance, was so sick for a couple of years that I barely got out of bed. And yet today I lead a fairly normal life. Many of us never have internal organ involvement, and many people to into remission. I believe I have.
I'm so glad you decided to join our forum. Tell us more about
yourself so we can get to know you better.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis. prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex