Building Support Systems for Women Living With HIV in the 1980s
September 19, 2012
Once you were able to disclose to your family, did your relationships with them change at all? Did they know about HIV beforehand?
No. They didn't know about HIV at all, until I disclosed my status. If they knew about it, I didn't know. I didn't know about it, really.
They didn't avoid me, or anything like that. They were very supportive. They would bring me meals and food, and those types of things. But no one talks about it. They don't say a word. They don't talk about, you know, "Are you taking the meds? What are you doing?" Everybody is just afraid. Even now, they are not comfortable talking about it.
All of this work that I'm doing, and everywhere that I'm going, my family doesn't talk about it. They just say, "Oh, you're looking good." Whenever I'm going to family events, I have to look a certain way, because I know everybody is looking to see if I'm sick or looking healthy. And there have been times when I was very sick.
Before protease inhibitors came around, I was very sick and very thin. During those times when I was sick and my family would come visit me, they were just so sad. But now, they're just so happy that I'm healthy.
What is your relationship like with your children now?
Wow. So, my daughter, who was 8 at the time, is now 32 years old. Wow. And my son is 29. My daughter is engaged. She has an 18-month-old.
Yes. A little boy, who is now the major love of my life. Never thought I was going to see my children graduate from middle school, high school or even college. I mean, they've done it all. My daughter is a college graduate with an M.B.A. My son graduated from Temple in communications. They're all doing great and fabulous things in their lives. I am super duper proud of them. They could have gone any which way, because they had a hard, hard start in life. But they made the right steps, and they are doing amazing things.
I'm glad to see a grandchild. Glad to see graduations. My daughter is planning her wedding. I'm just thrilled. I never, ever, ever thought that I would see any of that.
Do they live in the area? Are they close by now?
Yes, both of them. My son just moved back from Philly. He went to Temple; so he just moved back; got a job here. They both live about 20 minutes away from me.
When did it start to become clear to you that there was an excellent chance that you were going to survive, and that you were going to see all of these milestones?
I still am amazed that I am seeing all of these milestones, because once you prepare mentally for death, it's hard to undo the mind to come to grips with the fact that you're actually living. I'm not sure that you ever undo that death preparation, for me especially. It's always still a fear in the back of my mind, which is why I'm thankful for every birthday I spend with my kids. I'm thankful for every year and I feel good.
But we all know that, with these medicines, there are always ups and downs. Some may work; some may not. You become resistant to some and you pray that you have another cocktail to try because, especially for long-term survivors, we've used up a lot of options. It's not like we have a huge set of options left to us. So we're always hopeful and praying that new options will come about.
It's still a struggle with all of the issues that come with living long-term with this virus, the side effects to the medicines and just getting older. I'm now diabetic, and I have high cholesterol. I have some kidney stuff, and severe migraines all the time. There are all of these things that are going on. So it's hard, but I keep being hopeful every day. And I feel good today.
I'm glad to hear that. You're a long-term survivor who has been here since the beginning of treatment, even before it was really effective. Do you know how many medication regimens you have been on?
No. I don't keep track of all of the regimens that I've been on because I have been on many. Some worked, and some didn't work. It was always a battle of being 80 pounds, 100 pounds. Trying to gain weight. Trying to lose weight. Having the breast enlargement, the gut -- all of those things.
I'm on a regimen right now that I've been on for maybe about four years. And that's been great. That's been working for me. So I am hopeful.
What do you do in your everyday life? Are you dating anyone? What do you do for fun and what are some other ways that you stay healthy?
I have friends. I am dating. I am in a relationship, which is great. Because you feel good when you feel loved. I remember the days when I didn't think that that would ever happen again for me. I love going to the movies; having dinner with friends; socializing with friends. I enjoy that, and spending time with my children -- especially my grandbaby. It really brings joy to my life.
I do try to exercise. I attempt to do the treadmill every day for a half an hour. I do that fine maybe for month. Then something will happen and I'll stop and have to struggle back to get on it. So, like everybody else, I'm sometimes exercising and sometimes not.
I eat fairly healthy. I'm not overboard, like, you know, being so conscious of what I eat. But I think I eat fairly healthy, and I'm doing well.
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