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I even cried. Your T cells, they are like soldiers; they help your immune system. But I felt as if they were my kids, waiting there, like, "What are you doing? What are you doing? Come on, help me." And I felt so guilty, so guilty, that I just had to say, "You know what? Help is on the way. I'm going to do what I need to do. Do not worry." Then I came back and I started researching HIV medications.
I never was against medication completely. I would say, "When the time comes, I'm going to research it." And you know, when that time comes, you do feel it in the core of your body, in the center of your soul. You feel it -- that it is the moment.
Now I'm taking my medications, and I'm not going to tell you that I'm not having side effects. The first few days I had nausea. I wanted to throw up, and I couldn't move a lot. But I think it was partly psychological, too, because it was a really huge step for me to take meds.
I'm taking Viramune [nevirapine] and Truvada [tenofovir/FTC]. I researched it, and I spoke to a lot of people that are positive, men and women. Because the medicine, just like the virus, works differently in women. I spoke to a lot of women that are just like me, that have always been holistic. This regimen seemed to offer the easiest transition, and be less toxic. And that's what I wanted. That's what I was looking for.
When I went to my doctor, I had a whole list of questions. We had a great conversation, and we agreed on this one. I was able to say, "This is what I want," and the doctor said, "OK." So that's what I'm taking.
I've been taking it for almost a month now. I'm not going to tell you that I feel great, because obviously, I have bronchitis. But I've been told that it takes a little bit of time, because my T cells had been so low.
I took time to listen to my body again, a week ago. I sat there and I visualized my T cells. I saw my T cells, very happy, sweeping away the ashes of the virus -- meaning, the pills are doing what they need to do.
Visualization definitely works for me. Definitely. I know I'm going to be crucified for this, because I got crucified before, but no matter -- I just tried to understand that my body needed help. And maybe eventually I'd even just like to stop it. But right now this is what I need to do. [Editor's note: Read more about structured treatment interruptions.]
The same way I opened my mouth before to speak, I do it now. Because I know there are a lot of people like me. They're scared to take medications. They're nervous about side effects, or they just don't want to take them, because they think they're poison, and all this stuff. But if you do your research, and you do what you need to do, and you eat what you have to eat, and drink a lot of water to flush all those toxins out, it's not that horrible. You just have to do your research. You have to have a great conversation with your doctor.
I still take all my supplements. I do the same things I used to do. I don't exercise, because I truly don't have the energy. The other day, I went and walked four miles and I was out for a whole week, because I was tired. I got so excited, walking four miles. My ex-boyfriend got me a punching bag. So that's awesome -- I'm so happy with it. I'd never done it, but there's all this energy that's inside of me. I used to punch the walls, because I've been so frustrated. I got bronchitis twice. I had shingles. I had shingles a second time at the end of the year, and then recently I had shingles again -- three outbreaks, one on top of another. I'm going insane. I need to release that energy somehow.
It does sound so frustrating. And additionally, punching with a punching bag is exercise.
Let me tell you: My arms are happy. My arms are very happy. I open the window blinds when I'm doing my punching bag, and I think my neighbors are scared of me!
You've mentioned several times the importance of talking to your doctor -- definitely when you're thinking about starting treatment, but really anytime -- and having a really good conversation with that person about your fears, and what you've researched. What's your relationship like with your own doctor? Does she support your use of holistic treatments, and talk to you about potential interactions with HIV meds?
Before I left for Puerto Rico in December to see my mom, I went to one of my good friends -- we met in the HIV field, and she's been a great person in my life. She knows a lot of people, and she works in a hospital. I asked her to recommend a woman gynecologist that specializes in HIV -- because of the warts. I have a great gynecologist -- my gynecologist is awesome -- but he doesn't specialize in HIV. And it's totally different. For the warts, he put acid in there twice. Now, that might work in a regular person, but not in an HIV-positive woman with 46 T cells. Mine keep growing, and they're all over; they're out of control. And he was getting frustrated because, of course, he doesn't know what to do. He said, "The only thing you can do is medication." But at that point, I wasn't ready yet.
So I went to my friend and I said, "I need the best woman doctor in Broward County that is willing to listen to me and that knows that I will do holistic stuff, too, and is OK with that." My friend just said, "OK, let's go across the street." We just crossed the street, and she introduced me to this doctor.
The first time I met her was even before my first appointment -- the appointment where I was going to talk about medications and say, "This is what I want." Before that, she had to send me to the emergency room, because I had bronchitis. She was so great on the phone, and she was in the hospital.
She's well known. She's great. She cares about her patients. She takes some time to listen. When I went to my appointment, I went with a support system. It was such a hard decision for me that I needed to take someone that is like my mother here; and my friend from the hospital also went with me. We were three people in there asking questions. It's good if you go with someone, because if you are nervous, this other person can cover and ask the questions that you might forget. If you write out your list of questions, this person can look at your list and ask the questions for you.
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Comment by: Damaries Damaries Dee
Wed., Jul. 31, 2013 at 12:56 am UTC
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 UTC
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 UTC
Thank you so much Dave, stay well.
Comment by: Damaries Dee
Wed., Mar. 21, 2012 at 12:00 am UTC
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 (firstname.lastname@example.org) 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 UTC
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 UTC
Damaries' email address is listed on the last page of this interview. You can reach out to her at email@example.com.
Comment by: mike
Mon., Oct. 3, 2011 at 5:49 pm UTC
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 UTC
good for you keep up the what you are doing
Comment by: sandy
Sun., Sep. 4, 2011 at 1:35 am UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
Thank you cousin..I love you too xo
Comment by: Damaries
Mon., Apr. 4, 2011 at 6:59 pm UTC
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 UTC
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 UTC
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 UTC
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 UTC
I love you dee! Keep on fighting the fight! I'll be here for you anytime. :-)
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