Marlene and Margaretha Diaz’s prescription for living well
welcomes New York City AIDS activist Marlene Diaz to What This Means
(see also her profile, “Working Mom"). Each month, we will be
alternating coverage of Marlene’s test results with those of PWAs Sean
Strub and Stephen Gendin. In this issue, Marlene (whose last medical
interview was in the August/September 1996 Checking In) fills us in on
her treatment philosophy and how she and her daughter Margaretha, age
5, are doing.
power: That’s what guides me. When I was diagnosed in 1992, I was
scared, stressed and uninformed. As my CD4 counts nosedived, I got
terrified. When Margaretha tested positive at two months, all her
doctor had to offer was way-too-toxic AZT. That’s when I began to
educate myself on every aspect of this disease—which has made all the
difference. The more I learn about listening to my body, using
medicines properly and countering symptoms with nutrients and herbs,
the more I’m able to handle it. And the less scared I am when trouble
Gaining this knowledge didn’t come overnight; it has
taken years. Years of asking questions, reading everything I could get
my hands on, going to conferences. And years of experience groping
toward solutions for every new problem.
My first impulse after
my diagnosis was to think about nutrition. My mother’s from Peru, so
good food and herbal teas were how you handled illness when I was
growing up. That rubbed off on me, so I began taking supplements and
herbs. I also try to provide a highly nutritious diet for both of us.
The diet/supplement combo has really eliminated symptoms, so we keep it
up [see “The Diaz Medicine Chest”]. I also do acupuncture twice a month
and bodywork—shiatsu energy therapy and Swedish massage—when I can.
care of emotional well-being is also key: You deal with loss, fears,
constantly being broke. Going to a therapist and participating in a
support group helped me greatly in keeping a positive attitude. But
recently my therapy program lost its funding, and I no longer have time
for the group. So now I use the skills I’ve learned, and hang onto that
all-important belief in the possibility of our survival.
doing all this is very time-consuming. Plus it can be difficult to get
60 pills a day into Margaretha—intense for a 5-year-old. And with
insurance not reimbursing for most supplements, it runs into big bucks.
Margaretha’s supplements alone average $150 to $200 monthly.
keeps me sane is the duo of decent lab numbers and feeling good. Our
CD4 percentages have always been a reassuring 30-plus; other numbers
have fluctuated, but my current CD4 count is 460, with viral load at
5,000, and Margaretha’s counts are 1,299 and 3,000. I’ve never had an
opportunistic infection, although I get three or four bouts of
bronchitis a year. As an infant, Margaretha had wasting [reversed with
an herbal formula called Bioradiance] and LIP, a type of pneumonia
[untreated due to inadequate medical care; resolved with alternative
therapies]; she’s now fine.
I took Crixivan [indinavir]
monotherapy for two years when it was still experimental, but had to
stop because of kidney stones. Then I went on 3TC and d4T for 18
months, until neuropathy forced me off them—although the pain has
worsened since then. For now, with my lab numbers fairly stable, I feel
safe in sticking with a drug-free protocol based on immune-supportive
nutrients and herbs.
My philosophy is simple: Take an
integrated approach to the disease, both meds and complementary
therapies. But don’t be hard on yourself and don’t get overwhelmed.
Step by step, just work everything into your schedule reasonably. And
never forget to take time to enjoy your life. It’s not just about
living long, it’s about living well.