The truth about my life with lupus. Not for the weak.
Thursday, May 20, 2010
Dear Beauty Queen,
Sunday, May 16th 2010 was the Miss USA pagent, and while I didn't watch, I must adress it.
Miss Oklahoma, Morgan Woolard, said she was cured of lupus. This is part of my letter that I sent:
I hope you are aware of the damage you have done for people living with this devastating disease. I for one am in the fight of my life with SLE and am losing everything as I knew it.
PLEASE retract and clarify that it was drug-induced. Getting off the drugs is no miracle.
You are a dissapointment, and because of people like you, who should know better,
it is damaging when we need education.
If you are in remission, congratulations. Please educate yourself and do something important with your title.
To clarify, there are a few types of lupus, mine is Systemic Lupus Erythematosus, which is advanced. Please refer back to the past posts to see my daily struggles.
The one that Miss Woolard is saying she was cured from is drug induced Erythamatosus - which cause an autoimmune response (the body attacks its own cells) producing symptoms similar to those of SLE. There are know 38 drugs that can mimic SLE symptoms, and once stopping the offending drugs, the symptoms are stopped if not reversed. It's a miracle!
Don't get me wrong, I am happy she is well, as you know I never want to wish this upon anyone, however, this just is heartbreaking as lupus is so so misunderstood. I feel her words did more damage than good, this shit ain't no flu, honey.
Other campaigns are all over the media, we need the real education out for what this really is. People are still unsure, doctors are baffled, and unless live with it, or know me very well, you won't truly know. That is what I am asking for help.
We NEED to get the word out, not by House, not by Miss Wollard, but by real sufferers. NOW.
We do not have the time anymore.
Lupus is the little community theatre star, while the big dogs with awareness - cancer is the oscar star.
I ask for awareness, education, and the truth. I have heard some horrible assumptions out there.
Ask me anything regarding this illness, maybe read the Spoon Theory www.bydls.com as written by Christine Miserandino Donato.
My heart sank by Miss Woolard's blanket statement.
I would love no further illness from treatment.
We need you, I implore (see I am serious!) my Rhiarmy to do whatever you can in the help to spread the word, May is Lupus month, great time to start and to keep it going.
Someone you know and maybe love needs a cure. Including me.