It sounds as if you've found the things that really help you get through the challenging times.
When you're alone, you have to find a way. There's no other way. I'm not going to call my 80-year-old mother in Puerto Rico, crying, "Oh, Mom!" I don't want to do that to her. So, yeah. I have great people here that I can talk to. And I cry a lot, as usual. I let it out, and then I can think clearer. I wanted to hide under the sheets the first week, because I was so nervous. But then I was fine.
Now, this year, I'm celebrating 20 years since I was diagnosed with HIV. Like I said, in my earlier interview, I cut a cake every year on Nov. 23. And this year's going to be big. I'm doing a party-type thing. Last year, I made dinner and friends came over, and we had cupcakes.
Every year, I make sure I do something. Because every year is a blessing. I didn't know I was going to be here.
It's a new life for me. It's different. I'm waiting to start to feel better, because I still have my plans. I'm going to go to school. I'm working on new projects with local channels from here, and other things. Great things are coming. I'm very excited.
You spoke earlier in the interview about the financial times being really challenging. How do you access your HIV meds? Do you get them through ADAP [AIDS Drug Assistance Program], which has had a lot of funding problems recently, especially in Florida? Or do you have Medicaid? How do you access your care?
ADAP here: It's horrible. They've already started closing offices, and there are waiting lists. I've been thinking about and talking to people about how to raise money to help people that don't have medication. So I'm working on that.
I had Medicaid, just for a few months. I don't understand it very well. I had private insurance for many, many years. I used to work in corporate America. When I stopped working there, they gave me an individual plan. An organization from the community pays, thank God. Because when I was working in the health department, I didn't have any benefits. I had insurance all this time because of this great organization -- I'm going to give it a plug right now -- the name is Broward House. They are awesome. Broward House has so many great services. I love this organization, honestly. They help the client a lot. They have something called AICP, which is AIDS Insurance Continuation Program. I had it when Center One used to be running. Then Center One closed, and Broward House got my case. So they pay for it. And it's been great.
Medicaid was only for a few months. I didn't even know I had it. It finished this past January. And when I called the Medicaid office, they said, "Well, you're going to have to call private insurance to see if you can get insurance. We cannot help you." I said, "Excuse me?" And they said, "Well, you make too much money." I started laughing. I'm like, "Are you kidding me? I'm on disability. Are you serious? How much money do you make?" Then she said, "Well, you can receive Medicare in March 2012." I said to her, "Lady, I can be dead by then." And she said, "I'm sorry, I can't help you." Click.
The private insurance: I still have it, but I just found out a few weeks ago that it's going to finish in a few weeks! Because they sold the company to a private I-don't-know-what. And now I'm trying to get insurance. I just started doing that, because I haven't been feeling good. I don't have the energy to talk to people on the phone. And do you know how many denies I get on the phone? Or, "Oh, no. We don't have anything to cover you." Then I have to go into, "I'm protected by the Florida statute so-and-so-and-so." Because what happens is you are protected by HIPAA. HIPAA guarantees you certain policies for all the insurance. A lot of clients don't know this.
You cannot give up. And even though, let me tell you, I feel like crap, I'm going to fight these people. Because they have to give me insurance. In 2006, I had to sign for AICP, and I had to find an insurance company. I was at Center One with my case manager, who was on speaker phone with the insurance companies. They didn't know I was there. One of the insurance companies told my case manager, "Don't you know? We don't insure this type of people. These are the walking wounded." I just smiled. I said, "Don't you know that I'm going to call the insurance commissioner's office right now?" And they hung up the phone.
I could have gone on. But I didn't want to waste my T cells back then. But right now, I'm taking the medication, so I can. You can't be quiet. You need to open your mouth and just have the courage to fight these people.
Do you have support from the folks at Broward House to find new insurance? Do you have a case manager or someone who's helping you in the process, and knows all the different avenues?
I have the coordinator of the program helping me. He's been great with me and has told me what to do. He even printed a list of the insurance companies that I can call. Broward House will write me the check for the insurance, but the first step is me calling the insurance companies and finding out how much are the copays and everything, and if I can afford it; because with the private insurance, I have to pay the copay for the medication.
If you hear something about a crazy, HIV-positive woman, who cursed out someone on the phone for insurance, or did a rally in front of the insurance company ... it's me. [Laughs.]
It'd probably be you along with a hundred other people who are in similar positions. You are certainly not alone! And you're opening your mouth and doing what you need to do, which is amazing. I wish you the best of luck in that challenging process.
Thank you. [Editor's note: In the weeks following this interview, Damaries was able to secure coverage through Florida's Medicaid "Share of Cost" program until she's able to receive Medicare in 2012.]
What advice would you give to someone who's thinking about starting HIV meds now?
Don't listen to anyone but your health. You gotta listen to your gut and be honest with yourself and your body. Your body, I swear, is going to tell you, "I need help." And you're going to feel it.
You don't need to follow my example. I get people that write to me because of the other interview we did a few years ago. They ask me, "Do you recommend that someone that just turned positive do what you've done?" I always say no. This is what I decided to do. It's my body, right? My temple. So I manage my temple the way I want to. Now, I manage my temple the way I'm guided to -- because I learned to listen to it. I'm here telling people, "I listen to my temple. This is my temple." But I didn't take the time to really listen, and my body needed help. I beat it up, and beat it up, and beat it up, until I couldn't beat it up anymore. But I don't recommend that to anyone.
You have to listen to your body; do your research; and have a great relationship with your doctor. If you don't like your doctor, move on. Look for someone else. Because you need to feel comfortable with your doctor. That's so important: to feel comfortable with your doctor, to be able to say, "No, I don't think I want that." Or, "What do you think I should use?" Or, "What do you think is better for me? Because my T cells are so low, or whatever." Or, "Because my T cells are here, is this going to really help me?" Those are the types of questions and conversations you should be having.
And have a great support system -- at least one person that you know you can count on, that will be there for you if you need someone to cook something for you, if you need someone to come and even give you a bath. Have that person that you trust.
Don't be scared to take the step. Don't be scared. If holistic stuff and other things are not working, you need to help your body some other way. Just look at it this way: Medications, even though they have a lot of chemicals in them, some of them do come from plants. They do have some herbal things in them -- it may be tiny, tiny milligrams, but they're there. And you can research that.
Just don't be scared to do it, and help your body.
You've mentioned a few times during this interview that you've received some negative responses to some of your online interviews from people disagreeing with your choices about taking meds. Can you talk a little bit about the responses in general? Is there anything you want to say in particular to those who may disagree with your views?
I've been humbled and honored by so many people that posted something on my prior interview and by the ones that send me e-mails directly. I've been able to make friends all over the world; I've been able to give hope, options and courage to others. These e-mails and comments helped me during so many moments when I felt my world was crumbling. Knowing I might be able to give hope to one person or keep one person from getting infected gives me healing -- it closes the circle, so to speak.
There are people that might like conflict; or maybe they are so scared that they feel the need to criticize what I say or do. All I have to say about that is: I'm sharing my story and the way I feel it and go through it. Why are you projecting yourselves on me? At the end, we are all mirrors of one another. It doesn't matter to me; what others have to say about me is not going to stop my healing.
Thank you so much, Damaries! It was wonderful talking to you. I'm so glad we got to do this update.
This transcript has been edited for clarity.
Send Damaries an e-mail.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.
Comment by: Damaries Damaries Dee
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 :-)
Comment by: Dave
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!
Replies to this comment:
Comment by: Dee
Wed., Aug. 15, 2012 at 12:14 am EDT
Thank you so much Dave, stay well.
Comment by: Damaries Dee
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 (email@example.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.
Comment by: anna maria de cruz
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??
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 firstname.lastname@example.org.
Comment by: mike
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 ..
Comment by: Anonymous
Sun., Sep. 18, 2011 at 8:59 pm EDT
good for you keep up the what you are doing
Comment by: sandy
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
Comment by: Damaries Dee
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
Comment by: Lillian Colon
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.
Comment by: Chevytexas
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.
Comment by: joe s
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.
Comment by: marilyn
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
Comment by: Gisele V-P
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
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
Comment by: Ariel
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!
Comment by: Denise
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.
Comment by: Anonymous
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!
Comment by: Tamia
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.
Comment by: Mico
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!
Comment by: stacy
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!!!
Comment by: Gee
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.
Comment by: Indira M.
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!
Replies to this comment:
Comment by: Dee
Thu., Apr. 7, 2011 at 12:06 am EDT
Thank you cousin..I love you too xo
Comment by: Damaries
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
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, I’m sure that those 46 soldier, along with the new weapons (medications) will be putting you back in this war…Go girl go!...More soldier are coming...
Comment by: Mark
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!
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!
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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