Wanda Responds...

Wanda photo2The other day I read a blog on another website that caught my eye. The blog is titled, “Is it Homophobia or “Heterophobia”? Tell Them That It’s Human Nature, ” and while it was very well written, I felt the need to respond and wrote the following comment to the author:

Extremely well written article....you had my 100% agreement UNTIL, you stated, quite erroneously, that there is funding for all HIV demographics except heterosexual black men.

I am a heterosexual white woman, infected with HIV in 2002 at the age of 48. Because of many of life's ups and downs, I stopped my meds, and have been living with AIDS (current viral load undetectable, but cd4 remains 175-225) since 2008. I have been excluded from studies because I'm not a "woman of color" done by Duke University (which had significant stipend for participating). My own case manager (mandated that we have one by Ryan White) has a support group for women...I AM excluded, because I'm not a woman of color.

I face the same challenges that my friends here in Winston-Salem....the major difference...even though I'm NOT compensated, I am essentially the ONLY open face of HIV/AIDS in our area.

I've been the "face" of our ASO, AIDS Care Services....and I LOVE being the face....but it's me, because others, all of color (with once in blue moon exception of 3), I'm the face because others refuse to openly come out as being HIV+...no matter what their gender/race/sexual preference.

You can find me every where as an advocate...
https://facebook.com/wandabrendlemoss
https://Twitter.com/wandabrendlemos
http://girllikeme.org/author/wandabrendlemoss/

All these words are to say, if you look at ads in magazines, studies that seek participants....I've rarely, if ever, found any for a woman like me living with AIDS!

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ellejay's picture

Thanks Wanda
the supplement looks interesting. Once again I'm not intending to stop but to hassle for lower dosage and accumulating evidence to fight for that. I misread your first blog thinking you'd been off meds and undetectable since 2008. There is growing evidence that approx 10% of the pos population will remain undetectable after a few years of taking ARVs provided they started early. Hey ho way to go!
Love and light
LJ

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ellejay's picture

Hi Wanda

I like your style and am delighted to see a mature woman 'not of colour' being visible and heard. I like you am Caucasian and of a certain age, but not brave enough to come out in the open.

I'm interested in your medical story and would like to ask a few questions, I hope that's ok? What was your viral load when you started meds? What drugs did you take? Do you know of anybody else who has maintained 'undetectable' after quitting the drugs? Do you have any special supplements or routines to keep healthy? I'm not looking to stop meds altogether, just building up some evidence to support my plan to request that my dosage is lowered. I mean, why give the same dose to a 50 kg woman as you would to a male elephant, if you catch my drift.....

Hey keep on trucking, women like us still don't think we'll get caught!

hugs

L.J.

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Wanda Brendle Moss's picture

LJ,

Thank you for your encouraging words!!

I truly do not remember what my viral load was back then. When I started meds, back in 2002, it was few months after being diagnosed. I was still in the initial phases of coming to terms with being HIV+.... Realizing that everywhere I looked...I could not find ANYTHING about caucasian heterosexual women with HIV.
The first ASO I was refereed to, and attended support group at...was all women if color.

I AM back on my meds, since 2008.
I am taking Atripla now, as well as Dapsone(precaution against PCP pneumonia) Valtrex(because of severe shingles I had in 2008 that resulted in my hospitalization), Lyrica for severe AIDS neuropathy.

DISCLAIMER: I DO NOT RECOMMEND STOPPING MEDS UNLESS YOUR DOCTOR ADVISES YOU TO!

That being said, I do know FROM MY PERSONAL EXPERIENCE, and EVERY person is different...
There IS a nutritional supplement I took....I remained on it for several months to a year while off my meds(I started it while on them and continued both til my last relationship ended)
It's called Immune 26 or I-26.
When I was hospitalized in 2008, the Infectious Disease pharmacists were so fascinated by this product...they took all the info I had on it.
They never "shared" their findings!

AGAIN, I REPEAT, I DO NOT RECOMMEND ANYONE STOPPING THEIR MEDS UNLESS RECOMMENDED BY THEIR DOCTOR!

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