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Damaries Cruz: Deciding to Start Treatment After Nearly 20 Years of Living With HIV

March 30, 2011

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Damaries Cruz

Damaries Cruz

When Damaries Cruz was first interviewed by TheBody.com, in the fall of 2008, she'd just participated in a groundbreaking HIV awareness campaign for Spanish-language television. She was a well-known speaker and HIV educator with a large Florida county health department. She seemed to be doing all right health-wise after 17 years of living with HIV, and had never taken HIV meds -- opting instead for herbs, vitamin supplements and meditation in order to maintain her health. It was just a few months after the interview posted that Damaries' health began to decline. Thus began what was, for her, a grueling process to decide whether to start HIV meds, and which meds she would start with. "I felt as if [my T cells] were my kids, waiting there, like, 'What are you doing? What are you doing? Come on, help me,'" she remembers. "And I felt so guilty ... that I just had to say, 'You know what? Help is on the way.'" In this update interview, Damaries opens up about all of the aspects of her decision-making, and shares tips for HIVers who are thinking about starting treatment -- including why she recommends against following in her footsteps with respect to delaying treatment.

Damaries Cruz, welcome back to TheBody.com. It's good to have you back here.

Thank you. It's great to be back.

Let's start with where you're at right now. Are you still living in Florida? Are you still doing the same work you were doing the last time you were interviewed, in 2008?

I'm still in Florida. I haven't been working. I've been on disability for roughly a year. I've been sick for almost the past two years.

I was working for the Miami-Dade County Health Department. I lived about an hour and a half away. I would have to drive over there, work 10-hour days, and then come back home. That took a toll on my body. I started getting sick. Plus, I had a lot of other stress.

I always used to say to people, "Watch out for stress. Be very careful, because it will kill your T cells, and it will kill your immune system." But I just didn't think about that then. Stress took over, and my health started going down.

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These economic times are really hard. I was trying to fight for my house, go to work and not get sick. It's been really difficult for me.

I worked until my health couldn't take it anymore. I don't recommend that to anyone, but that is what I did. When I applied for disability I was already sick. I went to the Social Security office in person. I was petrified, because I hadn't heard too many good things about the whole process; but you know, I met two angels. They were so friendly and nice with me; I was so nervous that I was even crying. I was very honest about everything.

They send a form to your doctor and after the doctor fills it out, they make their decision based on that information. I went there knowing that it was going to take me up to a year to start receiving the benefits and that I might be denied three times prior to start (this is what people told me). To my surprise, I was approved in about 30 days! And I didn't even need an attorney. I even went back to the Social Security office to make sure it was right!

I'm not planning to stay on disability forever. My plan is to go back to college and eventually, when I have my degree in clinical social work, go back to work.

You were diagnosed with HIV in 1991, but by 2008 you'd never taken any HIV meds, even though at one point in 2006 your CD4 count had dropped enough that you were given an AIDS diagnosis. You were instead taking holistic treatments and vitamins, and you seemed to be doing OK. Had you started taking HIV meds by the time you started to get sick, almost two years ago? What happened?

I'm a hardheaded person -- a very strong-minded person, I should say. When I got sick, I still didn't want to take meds.

Now, I know a lot of people are going to read this. I don't want people to follow in my steps, because this is my story and this is what I did. I don't recommend that anyone do what I did, or what I do. I'm just sharing my story with people.

So what happened is: I had pneumonia. My now ex-boyfriend -- we were dating at that time, I think it was the second date -- he was here, and we had to call 911, because I couldn't breathe. I had been given an antibiotic for the pneumonia and I had a reaction to it. So he had to bring me to the hospital.

But I didn't go to the hospital for the pneumonia; I went to my holistic person, to my Chinese herb person. They did some treatment with acupuncture, and they put some cups on my back so they could open up my lungs. I still didn't go to the hospital. I didn't even think about medication, then. I still was saying, "You know what? This is going to be OK. I'm going to kick stress to the side. I'm going to be fine. I'm just going to be happy, ha-ha." But "happy ha-ha" never came. And it got complicated. The pneumonia went away, but then there were other things. I think, in two years, I've been my best maybe a whole month. Every other day, I've been sick. In the past six months, I've had maybe two days of complete health and energy.

After the pneumonia, I came out with chronic anemia, which is something that HIV-positive people can get. That really kicked my butt, because I couldn't move. I was tired. I didn't want to cook. I didn't want to do anything. That's why I had to apply for disability. I couldn't do it anymore.

My T cells were 46. Right now, they're 55, but they had been 46 for a few years. They got stuck there. And my viral load was 233,000, which is not bad for being positive for almost 20 years without medication. But then I have other complications. I have genital warts; they are out of control. I have the anemia. I hardly have hair, because it's starting to fall out, because of the anemia. So I started to get nervous. And every other month I was sick.

So I decided to go and visit my mother, as I always do. I went to visit my mother this past year in Puerto Rico. I stayed there for a whole month, and I meditated and I prayed. Now, this might sound silly to a lot of people, but I'm a person that visualizes a lot and I had a conversation with my soul. I saw my T cells standing there like soldiers, waiting for help. I saw 46 T cells standing there.

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This article was provided by TheBody.com.
 
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Reader Comments:

Comment by: Damaries Damaries Dee (Florida) Wed., Jul. 31, 2013 at 12:56 am EDT
Hello everyone, it's been a while since I posted a comment. I'm not sure I mentioned this but, because of the genital warts I was dig used with cervical cancer and I had 2 major surgeries and now I'm finally cancer free! My tcells are 520 and in undetectable but my body is still playing "catch up" I'm still very tired. This is something that I will talk to the dr. about. In going to ask if is maybe because I waited so long to start treatment. The good news is that I did start college!! I'm starting my 3rd semester on the fall. I might change my major but I'm so happy and I'm also working on my singing. Is never too late to LIVE your dreams, make it happen. Don't allow anyone to detour you . Stay well, healthy, focus , courageous. Talk to your body and to your soul. Please feel free to contact me at Damariescruz@hotmail.com, I love receiving mail. Namaste :-)
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Comment by: Dave (Durham, NC) Sun., Jul. 8, 2012 at 8:22 pm EDT
Hang tough, I saw your video and you look like your doing great.....good job I am pos 17 years now myself...your an inspiration to all of us living with this!
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Replies to this comment:
Comment by: Dee (Florida) Wed., Aug. 15, 2012 at 12:14 am EDT
Thank you so much Dave, stay well.


Comment by: Damaries Dee (Florida) Wed., Mar. 21, 2012 at 12:00 am EDT
Hello everyone, from time to time I like to come back and read all the old and new comments as they lift me up when Im feeling down. I had another mayor surgery last November and all is well at the moment. My body is still trying to catch up and Im sure it will. Im currently taking classes to be a substance abuse counselor and still planning to register in college. I wonder if all of you have an idea of how much your words touch my heart, if you only really knew..WOW..Im honored and so bless. I thank ALL OF YOU for taking the time to write to me here and to email me (damariescruz@hotmail.com) some of you email me from time to time to let me know how are you doing and it feels great! thank you so much it truly means the world to me. To ALL of YOU, stay healthy, happy, kind, focus, grounded, well, abundant. Always take care of you and share your love for yourself with others :>.THANK ALL OF YOU.
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Comment by: anna maria de cruz (Tanzania) Mon., Oct. 10, 2011 at 5:28 am EDT
Damaries, such a touching read, a case not too too far from mine, I would like to email direct with Damaries if possible, could some one give me her personal email please??
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Replies to this comment:
Comment by: The Body Mon., Oct. 10, 2011 at 1:25 pm EDT
Damaries' email address is listed on the last page of this interview. You can reach out to her at damariescruz@hotmail.com.


Comment by: mike (puerto rico) Mon., Oct. 3, 2011 at 5:49 pm EDT
I was in ur same situacion and ive been on meds for about 4years and it was the best decision made i am working now with the stress lets see if i could get through that god bless you and take care ..
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Comment by: Anonymous Sun., Sep. 18, 2011 at 8:59 pm EDT
good for you keep up the what you are doing
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Comment by: sandy (phx) Sun., Sep. 4, 2011 at 1:35 am EDT
your story made me cry, I wish I had read it sooner. God bless you and hugs to you...throw a punch for me onto that bag..thanks
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Comment by: Damaries Dee (Florida) Sun., Aug. 14, 2011 at 2:12 pm EDT
Hello everyone..Just touching base and to say thank you for your great comments.So far the meds are working fine and now, Im undetectable and was able to have surgery to removed the cancer cells, Im cancer free! Still adjusting mentally to the idea of taking this medications and my body trying to catch up but, all is well and great. Please stay tuned, I will be featured on a video series on adherence here at The Body, sometime on September..thanks again and please keep the good vibes coming..stay well,healthy, strong and most of all happy..regardless of whats going on, keep on smiling..Dee
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Comment by: Lillian Colon (Miami, Florida) Sat., May. 21, 2011 at 10:35 am EDT
HIV sadly continues to spread. Research has made it possible to live with HIV for many years. I only hope that careless sex is not attributed to thr fact that meds are available. They are expensive, funding is limited, and taking meds daily is not fun.
Education must be reinforced. Our youth, and elderly continue to be infected daily. Please protect yourselves. $5.00 for a pack of condoms is less expensive than the $1000. + monthly cost of meds. Contrary to popular belief, funding is not limitless. PROTECT YOURSELVES. EVEN IF YOU ARE ALREADY HIV +, PROTECT YOURSELVES! Another person 's virus may be worse than yours and resistant to meds.
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Comment by: Chevytexas (Texas) Sat., May. 14, 2011 at 10:54 pm EDT
It was amazing and gratifying to run across your interview; I've enjoyed hearing you before. I'm 60, HIV+ for 22 years and only this year had to consider meds. I had a brief fling waaay back when there was medical doctrine about keeping folks asymptomatic. I got poor results and some side effects from 90's meds. My great young MD monitors me and only this year decided that, based on my counts and health, to put me on Truvada to maintain my status, and Isentress. I'd been prepared, until I picked them up. My excellent insurance keeps them at $100/mo. each, instead of $1200 each. However it was this 'sticker shock' that made me realize I'll be maintaining this (there goes my meagre $2500 healthcare reimbursement account every year) probably until I die. That kinked up my rosy sense of longevity, even though I'm feeling fine. I was not prepared for the mental hurdle beginning medication would be. A long time ago, however, a therapist advised me of folks who'd felt terminal, spent their last dime and then lived on, and on, and on. I don't want to be that person; my ownership of my life includes mastery of this condition as well. A trio of pills each day is a small adjustment. A salute to you, and to the many of us who are just setting out on this journey.
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Comment by: joe s (orlando,florida) Fri., May. 13, 2011 at 10:38 am EDT
iam 61 years old i've been positve for almost 29years,i had to also get over cancer which has not come back through all of this my health has never been better.i always think positve and i thank god that am still here.to the people like mr.cruz keep the faith and exercise and eat healthy and find time to help others through stories like hers and mined.iam starting to writte a book so others can know that againts all odds si se puede yes!!! you can.
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Comment by: marilyn (chicago) Wed., May. 4, 2011 at 1:04 pm EDT
thanks for sharing that I am in the sane position I do not want to take meds positve since 92 its hard to make a decision cd4 count in not real low at all but just struggling with the whole thing so agin thanks
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Comment by: Gisele V-P (Manitoba, Canada) Wed., Apr. 27, 2011 at 9:30 am EDT
I'm a 53 year old widow with 3 adult children. I've had HIV for 27 years. With the exception of 2 very short trials, I have never taken anti-retro drugs. The side effects I experienced when I did try them we're just too harsh for me. So, I decided to let my body do as it does. I don't recommend that people do as I did. The treatment scene has changed so much and does provide longevity for many people. But back in the 80's, AZT was about all that was available and of course, the stigma that still persists, was only 3 times worse then. My life is one of perpetual surprise--wake up--still here. All I can do is count my blessings and educate. peace, Gisele
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Comment by: Lhamo w. (Broward County Florida) Fri., Apr. 22, 2011 at 10:32 am EDT
Damaries, since moving to Florida 9 years ago it has been very difficult for me to find other women aho have been living with "the " virus for a long time. I am originally from NY where in 1986 i tested positive. I spent most of the 90's in the hospital. I never thought I would be alive at 58 years old. Since I have been in Florida I am appalled at the lack of treatment and support, especially for women. It is as though I have stepped back in time and should get out my Act-UP t-shirt again!!Unlike many of the stories I have read, I have been symtomtic since the onset. Therefore had to stop working in my early 30's trying to raise a son. Possibly you can help me get in contact with other friends of similar age. I also started to take meds late on..actually my doctor here was going to fire me if i did not! Very different than the conversations I had with my Drs. in NY. I live in Broward County, on Medicaid due to getting sick to early, not enough quarters put into SS system. I do not know if there are any others who are in same situation. If i go back to work i lose the pitiful health insurance that is here. I do not have the funding to move. I find the most dissapointing factor in all of this is that after 25 years of science, awarness, etc..there is still lack of this being talked about out in the open in the South. I hope i hear from you or anyone else who can identify. Feeling very alone with my thoughts.thanks for your article. Cheryl
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Comment by: Ariel (Miami fl) Wed., Apr. 20, 2011 at 2:29 pm EDT
You are truly a fighter .. keep the hard work and you will win over the virus (i have quite a few friends that were there and now have normal lives thanks to medication).

Get better soon and thank you for your story!
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Comment by: Denise (Houston, Texas) Wed., Apr. 20, 2011 at 12:54 am EDT
I have been taking medicine since 2007 when
I found out I was HIV. My T-cell count was 59.
I had the flu several times since then and I had skin problems but nothing serious. My t-cell count is now 285. People always assumed I had this because of a nerve problem I had since a toddle. I would always pick at my skin if it became infected with a sore. The sores went away but the scars (spots)are still here today. I have tried to remove the scars but fell short of the results many times. I'm now used to the scars but still wish I could really stay committed to see result for them to be gone or even lighting them to my skin tone. I was with my boyfriend for four in a half years but had to break it off with him because he supported me but he keep me very stressed with his problems. I didn't want no one outside my family to know so I tolerated his behavior and settle for way less than his best.
I didn't want to reveal to anyone new of my condition because they would look at me differently and not attractive anymore. When I got really stressed and my weight dropped down to about 95 pounds I begin to get scared. He went to prison for about fourteen months. My weight came back up. I thought things would be different when he was released but it wasn't. Finally I had to separate myself away from him. I told his family because I got tired of being blackmailed. It was my medicine for me to start healing again.
I'm lonely because I would not want to reveal my condition to no one due to rejections. I wish I could meet guys in a support group that are in my condition.
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Comment by: Anonymous (NJ) Mon., Apr. 18, 2011 at 8:37 pm EDT
Wow, 17 years of living with HIV without any treatment -- that's really something! Deciding to finally start meds must have been an emotionally difficult decision for you. At least, you have a specialist who listens to you, seems to be sensitive and compassionate, and let you choose which regimen you wanted based on your research regarding side effects. And, to even give you a hug of encouragement as you were about to start your treatment, how sweet of her! Even if she initially didn't make a good impression on you, it is good that you gave her a second chance. Since all doctors are different, who knows how you might have done if you had decided to go with another specialist. This one sounds great -- please do not let her go. I think she is going to make a very positive difference in your life, and you will be very grateful.

You had expressed some legitimate concerns about body shape changes. I have an understanding of HIV/AIDS, as my husband lost a brother to the disease in 1995 when there were very few treatment options. Since you are not taking AZT, Zerit, Videx, or any protease inhibitor (these are all infamous for lipo-related problems), you should be all right. In the unlikely event that you develop facial wasting, and if your specialist does not treat the condition, you can seek help from Dr. Gerald Pierone, who is a Sculptra/Radiesse expert, is located in Florida, and does treatments on a sliding scale based on patients' financial situation. He answers a lot of questions about lipo on Thebody.com and seems to be very compassionate and knowledgeable.

Best of health!
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Comment by: Tamia (South Africa) Fri., Apr. 15, 2011 at 4:53 am EDT
I am wowed by this article, but one thing thou you must do everyday is to pray to GOD to heal the sensistive part in you. I used to cry a lot as well, when I think about my histiry. HIV positive & lot my parents to HIV but in time I get used to the fact that. HIV will not kill me, it just something that I need to monitor everyday of my life. Keep strong my darling lot of love from me.
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Comment by: Mico (DC ) Thu., Apr. 14, 2011 at 3:02 pm EDT
I am amazed at you! Such strength and compassion. Keep up your inner work and healing. You are one of the people, I wonder how they have such drive to continue on, however you have done it. Now, you MUST take care of YOU! The non hiv you, the hiv you, the small tcells you and the living larger then life tcells you. Please don't be ashamed and continue to love as you do! I want to read about you in another 17 years and that you are doing wonderful!

Peace!
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Comment by: stacy (fayetteville, ar) Wed., Apr. 13, 2011 at 12:09 pm EDT
I really enjoyed this article and appreciate your experience with holistic medicine. MANY Blessings to you!!!
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Comment by: Gee (Florida) Tue., Apr. 12, 2011 at 10:41 pm EDT
You are inspiring and you are right, the choice to take or not take meds is unique to each individual. Listen to your body. Do your research. Live as healthy lifestyle as you can. When the time is right, you can make the appropriate choice. I have been infected for almost 22years, still not on meds, viral load fluctuates, but usually around 25, 000, T4 still in the 300s. GUIDELINES say, I should be on meds, but statistics say I should have either been dead or seriously ill. Thank God I am neither. Many people who started the meds 20 years ago are either dead, or currently have serious illnesses like liver and/or kidney failure. Guidelines are not for everyone. The studies have too many holes in them. Yes, when the time is right, I will take the meds, but I am first going to give my body a chance to fight as hard as it can.
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Comment by: Indira M. (Guaynabo,Puerto Rico) Tue., Apr. 5, 2011 at 7:59 am EDT
Prima!!! I am so proud of you,you are a brave soul,and the best thing is,you are helping so many people sharing your story,please,don.t forget to invite me to graduation,you'll be a great Social Worker...dale!!! te amo y siempre te recuerdo!
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Replies to this comment:
Comment by: Dee (Florida) Thu., Apr. 7, 2011 at 12:06 am EDT
Thank you cousin..I love you too xo


Comment by: Damaries (Florida) Mon., Apr. 4, 2011 at 6:59 pm EDT
Wow...thank you so much guys. Your support motivates me to keep going..Im truly bless to have ppl like you in my life..thank you so much
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Comment by: Emilio (Bay Harbor, Fl) Fri., Apr. 1, 2011 at 5:25 am EDT
I just want to say that this Bella Mujer/Pretty woman is one of the finest
people I have ever had the pleasure of meeting, her smile alone lights up a room!. Hey De, Im sure that those 46 soldier, along with the new weapons (medications) will be putting you back in this warGo girl go!...More soldier are coming...
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Comment by: Mark (ft lauderdale) Thu., Mar. 31, 2011 at 5:18 pm EDT
I know Dee personally, and have heard her speak many times. She has tremendous heart and is such an inspiration and encourager. Here's KNOWING you'll continue to beat this and good health!
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Comment by: Barbara (Pompano Bch, FL) Thu., Mar. 31, 2011 at 2:35 pm EDT
Great story. I visualize your 46 soldiers not only standing guard but starting to work; starting to regenerate, starting to wake up anything that's weak. I really admire your resilience. Keep strong! We're cheering for you! All 64 inmates that you touched with your story visualized this - REALLY!
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Comment by: Sandra (Boca Raton, FL) Thu., Mar. 31, 2011 at 11:16 am EDT
I love you dee! Keep on fighting the fight! I'll be here for you anytime. :-)
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