Fighting AIDS one grandmother at a time
Posted by J_Berry, Jul 21 2009, 04:42 PM
I am here in Cape Town, South Africa, to attend the 5th International AIDS Society Conference. Yesterday I had an amazing opportunity, at the invitation of Bristol-Myers Squibb’s Secure the Future Foundation, to accompany a European press contingent on a site to visit to GAPA, an organization of grandmothers of AIDS orphans in Khayelitsha, South Africa.
Khayelitsha is a shantytown of nearly one million people who live on the outskirts of Cape Town. Here, amidst immense poverty and harsh living conditions, lies a safe haven for these amazing women who provide community outreach, training, and skills-building to other grandmothers who have lost their children to HIV/AIDS. They provide their sisters with hope and encouragement, and help them to gain the skills and to access the resources they’ll need in order to raise their orphaned grandchildren.
Many of the women are hopeless and despairing when they first come to the center, and have no idea where to go, who to turn to, and what to do next. The grandmothers explain to those just entering the program that there is no time for depression. As they say here, “Depression is my name, but today she is singing a different tune.”
And the children, ah, the children...well, that story will just have to wait for my next blog. Stay tuned for more in the days to come about GAPA and the IAS conference, and my first trip to Africa.
New-Fill for an Old Face
Posted by J_Berry, Sep 11 2008, 02:36 PM
This article first appeared in the May/June 2002 issue of Positively Aware. It documented my experience using New-Fill (Sculptra) for my lipoatrophy, and my first injections occurred the day before September 11, 2001.
New-Fill for an Old Face
by Jeff Berry
Monday, September 10, 2001
God, I’m nervous! Is this the right decision? I’m not sure if I should go through with this.
I arrive at the doctor’s office five minutes prior to my appointment for my first treatment of New-Fill (polylactic acid) injections. I’ve always hated needles, and they want to stick them in my face? I don’t think so! Well, I’m here, and I’ve already ordered the kit from DAAIR. I can’t afford to waste $500. I had to take out a loan against my life insurance to pay for the treatments, which will run me about $3000 for four treatments, which includes the price of two kits of New-Fill.
My plastic surgeon (I’ve always wanted to say that), Dr. Kenneth Stein, puts me right at ease. A very nice man with a superb bedside manner, he tells me that while the results from my first treatment will be instantaneous, they will pretty much fade after one week. I’ll have some initial swelling, but that should be gone by tomorrow.
Well, that doesn’t sound so bad. Let’s see, $750 for my first treatment, seven days…“In just seven days, I can make you a ma-a-a-a-an”…that’s about one hundred dollars a day. The scariest part, at this point, is, what if I like the results, I mean, really really like them, and then it’s gone after seven days and I’m back to my old face? How will that affect me psychologically? I’d discussed this several times at length with my partner, Stephen, who was concerned about that very issue. But I had to try this, if I didn’t, I would never know. I was willing to take the risk. I mean, I miss my old face.
Dr. Stein goes back to work on his earlier patient, who is also getting a treatment of New-Fill. I don’t hear any screaming or moaning coming from the other room, so that’s a good sign. He comes back, takes some pictures, you know, for before and after shots, and then he draws on my face with a marker. He explains that the procedure should only take about thirty minutes, I have my vitals taken, then I’m given icepacks to place on my face for a few minutes, to constrict the blood vessels and help keep the swelling and bleeding (hey, nobody said anything about blood) to a minimum. I’m supposed to hold them to my face as long as I can, and pull away when it gets too cold. Have you ever eaten something cold too fast, and you get that terrible headache? Multiply that by about ten times and, well, you get the idea.
First he’ll numb my face, and then he’s going to concentrate on four areas of each side of my face, including the temples. He tells me that the lower part of my jaw, around my mouth and lower lip (fill ‘em up, doc, while you’re at it!) would probably be the most sensitive (he was right). If the pain is too much, I’m supposed to tell him, and he will administer more lidocaine, but too much and I will be drooling for half the day.
I probably get around four or five injections in each site, for a total of about 40-50 needle sticks. Since I am numbed up, mostly I just feel pressure in the area of injection, but maybe 20 percent of the sticks are uncomfortable, and about 5 percent really hurt. But only for a few seconds. And keep in mind, I hate needles. I have to look the other way when they draw my blood. You’d think I’d be used to it by now, I’ve been doing it every few months since 1989! So, I’m probably a little more sensitive than your average Joe.
During the entire procedure my doctor keeps reassuring me that I am doing really good, and that it’s looking great. And then, all of a sudden, he’s done!
“That’s it?” I hear myself say aloud.
“Yes, that’s it, we’re done,” he replies.
He wipes my face clean, sterilizes, and then the moment of truth. He hands me a mirror.
“It looks great, don’t you think?” asks Dr. Stein.
I swallow hard. “Yeah, It looks great,” I lie. I smile. A misshapen, swollen, blotchy face contorts back at me, and I hardly recognize that it’s me. What the hell have have I done?
I step out of the exam room, Steve says, “It looks great, honey.” I feel loopy, I walk to the receptionist to pay my bill, first stopping in the bathroom to get another look at the grotesque creature in the mirror. As I try to smile at the receptionist, he remarks, “It looks great!” I wish everyone would please stop saying that…why are they all lying? I want my old face back.
As I walk out the door. I turn to Steve and say, “Wait, I have to put on my sunglasses, just like in the movies.” We joke, he takes me for a chocolate malt at an ice cream shop in Lincoln Park. That helps. “I think I want to go home,” I remark to Steve.
“I thought you were going back to the office?” Like this, I think to myself? But Steve encourages me to go, as originally planned, and I’m glad I did. After about an hour I start to see how wonderful the results really are. The blotchiness is gone, the raised lumps have lowered, and although still a bit swollen, bruised, and with a few needle marks, it looked pretty damn good.
Tuesday, September 11, 2001
It’s an unusually warm, sunny September morning, and our two cats, Missy and Zach, are enjoying the sun along with me on the breakfast porch as I sip my coffee and catch up on Sunday’s Chicago Tribune. The phone rings. Steve, calling from work. All I can utter is “No, no” in disbelief as he recounts the events of the morning. It’s unreal. And as I watch the twin towers collapse on television, the horror unfolding before my eyes, the surreal images on the tube—it helps put the previous day’s experience in perspective for me. My concerns and fears about the treatment seem so trivial now.
End Results
My second treatment in October seems to go a lot quicker, and while the pain isn’t any less, there seems to be fewer injections. My biggest “problem areas” are my temples (who knew?) and cheeks, so the remaining treatments focus more on these areas.
While it is exciting to get my face back, my old face, it is difficult to see it all go away in a week. But with each successive treatment, there is a cumulative effect, and the results last longer. At the end of the fourth treatment, in December, Dr. Stein says, “Now, when you come in for your next treatment, I want to use a whole kit just on your cheeks.”
“My next…a whole…You want me to come back for another treament? You think I should?” I asked.
“I think it would help,” he replied. And I knew he was right. With the results I have seen, two kits, right in the cheeks, would be the icing on the cake. But, I didn’t have another $1,000 budgeted. I finally just got reimbursed from my FSA, money I had set aside from my paycheck last year for unreimbursable medical expenses. They didn’t want to give it back to me, my own money, because it’s viewed as a “cosmetic procedure.” Yeah, about as cosmetic as when my mother had reconstructive surgery after two radical mastectomies. I’m hoping someday that these types of treatments will be viewed as medically necessary and covered by health insurance. Until then, there are some studies coming up soon, and other treatments on the horizon. [See Sculptra.com and facialwasting.org]
Would I do it all over again? Yes, in a heartbeat. But here are some tips that might help if you are considering facial injections:
• Make an informed decision. Ask your doctor lots of questions, and don’t be afraid if you think they sound stupid.
• Don’t expect miracles. Do you own stock? Do you like to gamble? It’s a lot of money, and the results aren’t guaranteed.
• Look at all the options, discuss them thoroughly with your doctor, and choose one that’s best for you and your budget.
• Get plenty of rest before your treatments.
• Try stress-reducing techniques, such as visualization and deep-breathing, before, during and after the treatments.
• Take vitamin C. It helps in the production of collagen.
• If possible, talk to someone who has had the treatments and ask them about their experience.
• Think about what it will be like to have your old face for only a few days, and then lose it all over again. Are you ready for that?
• Realize that you may just be getting older. Those lines in your face make you look distinguished, lend authority, and are attractive to many people.
Jeff Berry was the Web Site, Advertising and Distribution Manager at Test Positive Aware Network when this article first ran in the May/June 2002 issue, and is currently editor of [i]Positively Aware magazine. He first wrote about his lipodystrophy in the Nov/Dec 2000 issue of Positively Aware, “Who Moved my Cheeks?”[/i]
Positively Aware Turns 20!
Posted by J_Berry, Sep 5 2008, 02:30 PM
2009 marks our 20th year of publishing, when we began simply as TPA News. TPA News was the monthly newsletter of Test Positive Aware Network, and was initially a couple of mimeographed pages stapeled together. My how far we've come in twenty years, with our online version of Positively Aware and the new community forum where you are reading this blog!
For our January/February 2009 issue of Positively Aware, we putting together a special 20th Anniversary issue, and are looking for comments, letters, stories, images, anything that you would like to share about how PA has impacted your life or the life of your loved ones. We know you're out there, so please be a part of this very special issue, we'd love to hear from you.
Also in our 20th Anniversary issue look for special, suprise guests contributors, as well as a fond look back at what has continued to make Positively Aware the most trusted community resource for people living with HIV and their advocates.
Send your submissions to publications@tpan.com, or to our mailing address, Positively Aware, ATTN: Editor, 5537 N. Broadway, Chicago, IL, 60640. Please be sure to include your name, address, phone number, and email address and specify whether you would like any photos returned. All submissions become the copyright of TPAN, Positively Aware and it's assigns.
Click here to subscribe to our bi-weekly PA E-mail Update newsletter, and stay informed with the latest news and views from Positively Aware!
on Fighting AIDS one grandmother at a time