Initially, I’d like to thank this group for existing. After having searched for over two weeks to find an African American discussion group, concerning Lupus, I realize how unique this gathering is.
Yes, there are scads of “Lupus” sites, where one may view definitions of, “educated” opinions and “recommended” drugs offered for treatment of the various manifestations of the disease. Attendees are preached to, instructed, told limited choices, and given little or no chance for feedback!
There are the “alternative” health forums. But such are filled with the cacophony of frantically described symptoms, outrageous claims for cures and an overall ambiance leaving one daunted. Left, is the question of whether to pay any attention to what comes off as a few, genuine pleas for help set within a sea of hucksterism, exhibitionism and lunacy! Immediately begged is the question, “Where have the Sisters gathered, trying to make sense of any of this?”
Nowhere did I find a place where African American Women, who disproportionally suffer Lupus’ ravages, openly discuss, in an ongoing manner, the results of the remedies they’ve tried. Whether they be “official” (AMA sanctioned) or “alternative health,“ in nature, collective comments upon them would be a function offered by any village setting. Women discussing amongst themselves symptoms, attempted remedies, their respective efficacies upon what ails them and their loved ones, is what has allowed humans to survive throughout time. Why is such so hard to find on the Net?
Ironically, the preponderance of conversations concerning Lupus seem to have started around 2010, through 2012 in various places of public inquiry. Yet, precious little, if any, feedback was displayed. That’s not to say it wasn’t attempted, but almost none was published! And understandably, the threads soon ended.
I had to stop for a few days after writing the above. I could see I was being emotional and wordy.
In short, I’m a Black Male, whose immediate family includes no one who suffers from Lupus. A family across the street did. But I never knew it until their daughter, decades later, recently told us she does, as did her mother. Associates and friends of mine would mention the death of a relative having died from the disease. Yet, I remained totally ignorant of its nature, for it not having afflicted an immediate loved one.
In the course of our living together, my late wife, a Peruvian, with African, Chinese, indigenous Indian and European roots, the same as myself, introduced me to her family’s medicinal collection of herbs, teas, powders and salves. No one in her immediate family had Lupus, but within the conversations I overheard, while in her home village, the disease’s name was mentioned. So, it affected that population, as well.
Whenever I would cut, or burn myself, or suffer fungal attacks (athletes foot), she would recommend a salve. But I’d treat myself with my typical array of over-the-counter compounds like anti-bacterial soap, iodine, Band-Aids, Kip and Desenex. But if complications or a delayed healing presented itself, she’d assert her wifely right to “care” and apply this salve, to which she referred as “ozonizado.”
Whenever I asked what it was, she’d just shrug her shoulders, saying “No se. Pero, lo sirve.” (I don’t know. But, it works.) Which it did and admirably! On each occasion, after the healing, I thought no more about it and went on with the business of life.
She introduced my Sister to it, who now that my wife has passed, is the sole repository of our family’s knowledge of how to use it.
She lives back East and some months back, while visiting our mother, the neighbor’s daughter, a dear family friend, came by, having heard she was in town.
In their talking, the subject of the daughter’s Lupus lesions, on her legs was breached and my sister recommended the salve, straight off. She hadn’t brought any and my mother called me, to ask whether I had any. Being too proud to change from her “tried and true” ways, she had never acquired any for her use.
Not having used the stuff, except on rare occasions, I gave her what was left of my only, 1 oz. bottle, which had languished in the refrigerator, for years.
My sister returned East and within two weeks received a phone call from the neighbor’s daughter, speaking highly of the salve’s effects on her lesions and asking where she could get more. Calling me in turn, my sister requested I buy some for our family friend and a few jars for ourselves.
I suddenly realized I had not the slightest clue as to where my wife had purchased it! I asked my sister where she had purchased hers and sure enough, my wife had been her source! That’s three Black Folk, one who most anxiously wanted this substance and not one of us knew where to obtain it!
After awkward calls to some relatives and friends of my wife, who’d not heard from me, since her passing, I was given a number to a local manufacturer. But, this was only after a distributor had personally seen me and my wife’s relatives vouched for my intentions. His was a small store, run out of his house.
Should I have wanted a lesser quantity (I desired five bottles) I could have purchased them from him. He didn’t have that much and wanted to have stock on hand to sell to his normal customers. So, he sent me off with a number to contact, advising I might have to wait to have my order filled, which I indicated was okay.
I found it surprising he had referred me to a local producer; that it was not a case of him having brought some from a recent trip abroad, to sell, which is common amongst South Americans.
As I left, that feeling of being belittled, once again crept over me. “Why is it we don’t know about this?” Asking friends, associates and other Black Americans in our area, only confirmed our collective ignorance of the matter.
I called the company, ordered what I wished and have done so, several times, only having to wait once, for a production run to finish.
In the meanwhile, I researched what this salve is and was chagrined to find it was first manufactured here, in the US, at the beginning of the last century! Why did I have to learn from a foreign culture of its existence and where to get it, right here, in my own land?
Then it struck me: Their oppressed existence and relatively recent access to refrigerators (to conserve it) notwithstanding, Black Folks must have already tried this! If I had come across it, how many other hundreds have done so, over the years? Yet, where is the record of their comment on its efficacy?
One of the first thoughts to come to mind is, “It must not have worked. Therefore no one mentions it.” Yet, the obvious lack of feedback on most Lupus sites, while openly promoting AMA sanctioned drugs, implies a suppression of what users have found.
As well, the more than positive feedback I’ve personally had from most users, flies in the face of the first assumption. But, my sample set is practically non-existent, it’s so small!
The third and most troublesome is the fear many of those using it have, in reporting it to their doctors. The very neighbor’s daughter I mentioned, told me she’s afraid of telling her doctor it’s not the new salve she prescribed, that causing her legs to improve so dramatically! She prefers letting her doctor believe the prescription is working, rather than risk her anger, by telling her it’s another ointment, entirely! Think of the other poor patients who will be prescribed the medication, which didn't serve, because the doctor was led astray! I can only hope she builds up her courage, at some point, to truthfully advise her MD.
That’s where this group comes in. Amongst you, I can hopefully find out how things worked out, for those who’ve tried it. I’ve my own limited experiences and feedback to call upon; noting where this salve functions and where it doesn’t.
So the question still stands, "How have we fared using Ozonated Olive Oil for Lupus lesions and other ailments?"
I eagerly await your answers and I'm sure hundreds of other Black Folk would like to, as well.