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In 1995, I started taking
Crixivan (indinavir), Epivir (3TC), and Retrovir (AZT). I
remember thinking, “This is it, I have my cure!”
Not! The only thing I got from this regimen was a 42-inch
waist, thinning hair and eventually hair loss. Talk about
change. This was an especially hard one. No one knew what
lipodystrophy was in the early ‘90s. My doctor just thought
I was eating too much and told me to lose weight.
Well, as those of you who
are living with lipodystrophy know, there is no diet that
can make this syndrome go away. So I had to deal with a growing
waist, thinning hair and thinning legs. What a way to live.
I changed my doctor and eventually changed my medication regimen.
It was not until later that the syndrome known as lipodystrophy
was recognized.
Initially, I was seeing a
doctor at a community clinic. I did not have to worry about
coordinating prescription refills, therapy appointments, gynecological
appointments, picking up my medications from the pharmacy,
or coordinating other services. Then one day I asked my physician
if he would be with me to the end of my life. He told me no,
because in his private life he was an emergency room physician.
This information encouraged
me to search for a physician who would be around until the
end. I left my community clinic and moved into the world of
private healthcare. What a change that was. I now was responsible
for coordinating everything including scheduling my doctor
appointments. While I loved my new doctor, I was not too good
with navigating my own care. There were times when I failed
to schedule appointments, forgot to call in refills, and didn’t
follow-up with phone calls.
What I learned from this
change was that I was responsible for my life with HIV. The
doctors, therapists and other healthcare providers are only
tools I use to assist me in living with HIV.
As I have lived my life with
HIV over the past 10 years, I have seen the importance of
these tools. I have accessed services as I need them. I need
to be consistent and organize my life with HIV in the same
way that I organize my personal life. The extra dedication
to living with HIV is not easy, but it does make life and
change easier to cope with.
Take care of yourself and
your blessings.
Deneen Robinson, an African
American woman who has been an HIV educator for seven years,
has been living with HIV for 11 years. She says that, “During
this time, my ability to access and understand information
has been the most powerful tool in my personal fight against
HIV. The one lesson I hope to share is that everyone is entitled
to dignity, both in life and in death. Let us choose to treat
each other with dignity.”
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