Ain't I a Woman? Change
My granny used to say, "The only thing that's constant is change." I never understood that statement until I became an adult. It became even clearer after learning I was infected with HIV.
One of the truest consequences of this disease is change. We have to make changes depending on how our bodies respond to HIV. Although the expectation may be that once we accept diagnosis and begin treatment we are done with change, most of us know that acceptance is when the change begins.
I learned I had HIV on August 30, 1992. At the time my two daughters were four and three. As a mother, my first thought was not about me. I thought, "My babies, what's gonna happen to my babies?" I was a newly single parent. I was also in school, in the process of beginning my practicum. I did not have time to be sick.
I graduated from college and began my social work career. I was in good health, but even though my T-cell count was close to 500, I had some changes to make. I had to get used to taking anti-HIV medicine everyday. I also had to accept that this change would follow me throughout my life.
Although I was physically well, I immediately began to have gastrointestinal manifestations of HIV disease. I had to change my diet and eating habits. I could no longer eat leftovers without severe diarrhea. Change. You know how turkey and dressing always tastes much better the next day? Well not for me. I have to eat all I can on the same day, or I spend all of the next day in the bathroom. I am sure that I am not the only one that has had to make this type of change.
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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