Sunday, January 2, 2011

Lupus update: It flared, I glared, and it slunk away

Oh no -- not again.
    (Jan 2, 2015) In 2010, I developed a florid, oozing red rash under my eyes while my dad lay dying in the hospital. I thought it was because I was crying so much, but it turned out to be the outward manifestation of a form of Systemic Lupus Erythematosus, and it remained -- swollen and crusty and itchy, burning, and crawling -- for nine months. With great care and determination, I have kept this unsightly and uncomfortable symptom at bay all these years. Recently, it flared back, as I cope with my mother's terrible decline.
    I just couldn't handle this, on top of everything else, including a hateful legal battle over my mother's care and finances. I used my "what would Cleopatra do?" approach to medicine, and I forced the fucker back into its hole

    My "cure" for my original outbreak seemed magical to me. I found a bottle of high-quality probiotics on sale for half price, and I bought them. The next morning, the deeply entrenched rash was gone. I was incredulous. It seemed that it must have been a coincidence, but the vanishing act was too dramatic to write off as pure chance.
    I have been taking this probiotic every day since then. Although the lupus has affected my well-being in several ways, the rash had remained behind the scenes (much to the surprise of doctors), biding its time before assaulting me again. I believe Omega 3 and two oil capsules -- black currant and borage -- may have helped as well. They contain alpha linolenic acid, which is thought to moderate lupus flares.
    But then, a couple of weeks ago, out came the bloody beast, amid my various stresses. It seemed that it might scar me this time -- the way it has the singer, Seal -- because it was bumpy and fibrous and oozing inflammatory fluid.

Seal still looks beautiful, despite his lupus scars.
The scarring can be horrendous.
    Not knowing what else to do, I once again shunned the destructive but effective cortisone creams and instead doubled my probiotic. I also began using the borage oil capsule, which I had been taking internally, to apply topically to the flaming rash.
    The results, once again, were miraculous. Within two days, the ever-expanding and thickening rash virtually disappeared. The remission was far more decisive than any pharmaceutical product has ever produced. The skin under my eyes actually seems smoother than before.
    I am still working to rid my face of a few small remnants of the rash, but progress is steady. This is a foe I'll be coping with for the rest of my life, so I might as well get used to it, and devise various strategies for fighting back.
    At least the rash is superficial. Lupus attacks all organ systems of the body. I am having neurological symptoms as well (balance, stuttering, typing horribly, blurred vision.) The most dangerous aspect of lupus, as I understand it, is lupus nephritis -- inflammation of the kidneys. I have symptoms of this as well (very swollen ankles and feet). I'm still searching for my own magic to fight back against this. I refuse dialysis. I reject a kidney transplant.
    Lupus is said to be  the only autoimmune disease that can be fatal. I think that's just Lupus Foundation propaganda, but anyway, it's a serious condition -- far more serious than an unsightly rash would suggest. 

UPDATE Jan. 9: I thought I'd won, but the flare has returned, despite what I believed was a winning strategy. The rash is unsightly and uncomfortable. My whole body feels sick and tired.