POZ Community Forums
Main Forums => Positive Women => Topic started by: sweetasmeli on April 27, 2007, 01:03:29 pm
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Just like the LTS forum is a great idea, I believe the PW Forum is an equally great idea. I thought it might be good for The Women Here to introduce themselves to one another, as and when they see fit. So, I thought I’d get the ball rolling…
I’m Melia and I’m a chocoholic. Oops sorry, wrong forum…just kidding folks! :D
I’m Melia and I’ve been HIV+ for over 7 years now. I was diagnosed in late December 2002 but I have traced my seroconversion back to September 1999.
I’ve been frequenting the Aidmeds forums since September 2005, posting sometimes, lurking other times. I’m just coming out of another wee ‘lurking spell’…
For many reasons that I won’t go into here, I left the grey skies of the UK in October 2004 to start life afresh on a tiny picturesque island in sunny Greece.
Here in Greece is where I was to experience HIV stigma in all its splendour, firsthand: First, I lost a friendship due to the ignorance of the ‘friend’s’ Greek husband; second, my HIV status was ‘outed’ in my village and I was subsequently fired from my English-teaching job in the village school; and third, I was turned down for further work. And all because of my lovely little virus.
Anyway, all that was well over a year ago and I think I’m finally coming through the other end of what have been turbulent and stressful times and a very long dark tunnel. I am quite proud to say I have come a pretty long way in my personal journey with HIV.
After much deliberation and soul-searching, I chose to stay here on the picturesque little island that I now call home. I’m now a private English tutor, with a couple of students to boot, so far.
I am fully open about my status with all family and friends. I embark on new/potential friendships with disclosure; I find my openness helps me distinguish who I want in my life and who I don’t. Plus it’s a sure cutting way of separating the wheat from the chaff, so to speak.
In light of how I was ‘outed’ here, as well as potential friends, I also disclose to potential clients (ie parents of potential students), making it clear that I only wish to work with people who fully accept me for who I am. Having learnt how to take any ‘knock backs’ because of my HIV status as testimony of other people’s failing and not mine, I now find myself more comfortable in my own skin than I have ever been in my whole life.
I believe that living in secrecy because of one's HIV status helps to perpetuate the very stigma that HIV+ people find abhorrent.
In spite of my HIV+ status and all the crap I have endured over the past 4+ years, I actually feel truly fortunate. As well as a fabulously supportive network of support from loving family and friends, not to mention my 2 beautiful unconditionally loving cats, Aidmeds has irrefutably also helped me along my journey.
Over the past 18 months or so, I have made (and still am making) some wonderful friends through these forums. Granted – and often frustratingly – they are dotted all over the globe (not that that has gotten in the way of me meeting some of them!) but they are my friends nonetheless, some of whom I not just cherish, but love dearly. They know who they are. :-*
I’m still navigating the peaks and troughs of living with HIV, not to mention the peaks and troughs of living life in general. But I think I’m doing an ok job and reckon I can safely say that I am now living with HIV and not merely surviving with it. And yes, there IS a difference.
Ok that’s enough from me for now…I look forward to hearing from the other lovely ladies here.
Melia :)
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Hey! Greece-WOW! I just posted a thread on the Off Topic forum that was about where I always wanted to go and Greece is one of those places!
Anyway, I'm 41 years old and have been HIV+ since 1988. My first husband infected me, I believe. He died in 1989 when I was in treatment for alcohol/drug abuse. That was an extremely hard time for me, as at the time, besides my recovery, he and my daughter were my whole life. I think I experienced a little anger, but not too much because of the things I did in my past life (as an addict) that put me at risk.
After I got out of the treatment center, I went to college (I already had an associate's in Law Enforcement, but never used it) and became a certified medical assistant. With that degree, I became a medical transcriptionist. I got married again in 1991. After about four years, my health took a dive. I lost A LOT of weight (I went down to 87 lbs and I'm 5'9"), and got a bad case of pneumonia. So I went on disability. I met my second husband in Narcotics Anonymous and I can say that of all the people I've known in my lifetime, I have never seen a better con. He ended up quitting work, going back to school and using IV drugs again. He wiped out my bank account, after stealing my ATM card when I was asleep and finding my PIN#, and that was the end of that.
Right now, I'm completing a BS in psychology. Then I hope to be an addictions counselor. The AIDS meds have really made a difference. Other than that, I have a 22 year old daughter who lives in Washington and two grandkids who live close by that I simply adore.
I just keep hanging in there, believing things have to get better, one day at a time. Thanks for sharing your story!
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Good idea,Melia. I am Cristy. I am 34 and have a 4YO and a 17YO. I tested positive in September of 2004 and believe I seroconverted in March of 2004. I have been a member of this forum since November of 2005 when I started taking Sustiva and Truvada. I don't post that often but come everyday to read others posts. I have made my son basically my reason for being,otherwise I stay very much to myself. I do take good care of me so I hope to be here for a long time. Cristy
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I am Xxx (3 letters to my name...), 33 y/o and in in the Netherlands but not a local. I was diagnosed on 27/12/2005 while on a home visit. I had a relationship in NL at the time and the guy was disgusted to the point of throwing out my clothes. My CD4s were 77, VL 20,000, which led the doctor to think that I had been infected many years earlier. I had been having safe sex for years, but I did have 3 relationships where I occasionally didn't (mostly yes because I didn't like the pill). Anyway I contacted 2 of the guys and they are OK and the last one has emigrated to the States after we were together and I therefore assume that he cannot be positive due to the strict restrictions on anyone entering let alone settling there. But I was pregnant from that guy (despite having used contraception; the doctor-prescribed diaphragm-like method we used was taken off the shelves for lack of efficiancy while I was still waiting for the abortion!), and I had an unclean abortion which I am not able to prove infected me. So I don't know. I told this to my doctor at home and he said, "oh, we have some women from Russia that got infected that way, but surely that can't happen here". Yes I am angry.
Anyway now to the good things... after my ex panicked I had nowhere to live, really awful time when I got back to NL in the middle of winter, had to sleep on the floor in some makeshift place, had no insurance, no friends, no internet even, and the ex would come round and play with me and take off (he was/is a chavinist asshole, and I shouldn't have hooked up with him in the first place but I was desperately lonely in the NL, but I will give him the benefit of the doubt because he is an asylum seeker alone here basically and has been through an awful lot). I met a American guy on poz personals who would call and cheer me up and I owe him so much for not having killed myself. He saw me as a kind of protege I guess (he is 50) and just carried me through. And then I met a positive Dutch guy but that didn't work out because he lied about being bi and other sexual stuff, but I had already met my boyfriend and was seeing him as a friend in parallel.
My BF, I met him when I flew back the next time (as I had no insurance here yet, I had to fly to bring the drugs), and I arranged to see the place he was leaving. I didn't take the place but ended up calling and asking him out. I don't know how I had the guts, especially considering my state of health and the fact that I was flying all night. We went out and really hit it off but like cinderella I would have to run off early because the drugs were still hitting me very strongly after I took them. I kept dropping hints about being ill but didn't say what I have, and then a few weeks later I came out with it. He was cool, but also kind of detached, and I assumed it would be in the vein of just friends from there on (we hadn't even kissed yet). But a few weeks later we kissed, and TONIGHT actually, we are celbrating the first yera's anniversary of the night that we first slept together (without yet having sex, which took some weeks more). We have just moved in together, last week. I am very very happy with him, he is the love of my life and I can say that without a second's hesitation. This coming Thursday we are going to Venice and I am very excited about that.
But.... that doesn't mean that I am always happy, or that there are no clouds on the horizon. There is so much fear and uncertainty, but this is too much to add to an intro so I will stop here. My blog notperfectatall.blogspot.com gives a somewhat biased picture of the tougher moments in this period and some of the bagage that I carry that I didn't metion here and is not directly HIV-related, and also of my fears, which are numerous.
One thing that HIV did, is show me how amazing people are. My amazing family, my kind friends, mi amor (my BF is Spanish), the professionals helping me, and last but not least, the truely amazing people that have to live with this. You meet- online and in real life - really astounding people, amazingly resilient, resourceful, smart, surviving beings. So I can sincerely say that the year and half almost since my diagnosis has been the worst and best of my whole life. It has been like 10 years rolled into one - work, friends, love, pain, fear, you name it........
And now I would like to have a baby, but there is a side of me scared of even daring to dream about it, and we have to see with my BF too, how we will manage, because his contract is up in 4 months!!! And I don't know if I should relocate to Spain because I am deathly afraid of the kind of predjudice like you, Melia, have to overcome (he is from a traditional, small community). So I cannot for the life of me see beyond this summer. I guess I am here for the ride and will keep you posted.
And finally 2 comments to Melia and Betty:
We have something in common because I travelled alone for years, also in the Greek islands (Patmos is my favorite) as well as in further places, and I know the loneliness and serenity that comes from being a woman travelling (and living) in foriegn communities; and Betty, we have some things in common too, but that is in the past. I can say though that my experiences with dependency (not addiction per se) humiliation and abuse have allowed me to bounce back so quickly from the HIV diagnosis (although bounce back somewhere else on the chart). So a lot of the really awful, tough stuff, can be a blessing in disguise, and in my good days, I like to believe that there is an invisible hand guiding the whole thing. Do you know what I mean?
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Good idea,Melia. I am Cristy. I am 34 and have a 4YO and a 17YO. I tested positive in September of 2004 and believe I seroconverted in March of 2004. I have been a member of this forum since November of 2005 when I started taking Sustiva and Truvada. I don't post that often but come everyday to read others posts. I have made my son basically my reason for being,otherwise I stay very much to myself. I do take good care of me so I hope to be here for a long time. Cristy
Maybe this will show up this time. Cristy
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Hi, I'm 39 year old, single mom of a 13 1/2 year old daughter. I was diagnosed in 1994 after my husband was hospitalized for acute anemia and severe weight loss and diagnosed with advanced AIDS. Thankfully, our daughter is not infected. My husband died August 15, 2005.
My current bloodwork is great, viral load is undetectable with a reasonable CD%. I am taking medications, with little to no side effects.
I have been dating a negative guy for the last couple of months, and have been enjoying myself once again.
I have been a member here for a while now, I just don't post too often, but I do check in on a daily basis to read the comments :)
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On February 14th , 2006, I took my boyfriend of 2 years to the hospital. He couldn’t breathe, couldn’t catch his breath. Two weeks prior, he was diagnosed with walking pneumonia but antibiotics didn’t clear it up so off to the hospital we went.
As soon as we got there, they put him in an isolation room as they thought he had TB. Masks and gowns were adorned by all and a bevy of tests were done and 14 hours later, still no answers. They admitted him into the hospital into the CCU and he was on 100% oxygen. As I sat by his bedside, doing the whole bedside vigil thing, I questioned every nurse, doctor and cleaning person that walked into the room as to what they thought was wrong. No one was giving up any info.
After 3 days of “nothing”, I took a break and went home to sleep. At 1:00am on Friday morning, the hospital called to say that he had to be sedated and intubated as his body was not getting enough oxygen. OMG! This man has not been sick one day in the 3 years I have been with him! Just 1 month prior to this, we were on the golf course having a grand ol’ time! What the F!@X? I went back to the hospital on Friday morning and could not find a doctor to talk to until later that evening. Once I found one, I confronted him and I asked if they had done a rapid HIV test in the ER (now what made me ask this, not sure). The doctor said they had, and it had come back “inconclusive” so they took blood but the results were not back yet. WHAT? INCONCLUSIVE? I went totally numb.
I immediately asked them to do a rapid test on me - right then and there - and was told they couldn’t. Okay, so now it is Friday night, the weekend is ahead of me and Monday is President’s day. I’m screwed, totally. I drove home in a haze and immediately got on the internet………..GOD I love the internet! Research, I researched every symptom known to the HIV Gods. Then it hit me. In January, I got what I had thought was the flu, terrible sore throat, fever, and couldn’t get out of bed for 10 days. Because I am an insulin dependent Diabetic, I am used to getting sicker than the average Joe, but I remember thinking, “wow, I haven’t been this sick in a long time!” I had gone to the doctor and they did a throat culture, but the doctor said he was pretty sure it was strep throat and prescribed antibiotics. I took them all and about two weeks after I was done with them, I got hives on my legs and body. I couldn’t figure out why I had them, no food changes, laundry, soap, etc…all was the same. Took some Benadryl and they went away, never thought about it again……….Until that Friday night when I was doing my manic internet search and BAM! There they were ALL my symptoms in black and white. I was freaking out! I mean who do I call? What do I do? I called every hotline, clinic and hospital I could find, but every one of them said I would need to take an HIV test. No shit, but it was Friday and a “government holiday” on Monday. HELP ME!!! For the next 3 days I literally did not sleep. I was on the internet the entire time, trying to find something else wrong with me, ANYTHING else but HIV.
On Monday night I called my neighbor Camille. Why Camille? Because Camille is gay and for some reason, I was like “calling all lesbians! I need your help!” Makes no sense I know, but at the time it made total sense to me! Camille came to my house on Tuesday morning and we were the first people at the clinic to get my HIV rapid test. I was a zombie walking in there and went through the screening questions with the counselor, “why do you think you are infected?” “Uh…………my boyfriend is in the hospital dying and from my research I think he has PCP (Pnuemocystis Pneumonia) and I had all of the symptoms…………..yadda, yadda, yadda” Just do the test damn it! So, she pricked my finger and went into the other room for 10 minutes while I sat there alone in the testing room…….pamphlets surrounding me……..”Are you Infected” or “Just found out”…….OMG, I had better grab some of these I said to myself and I stuffed them into my purse feening for a cigarette, why can’t we smoke in here? I mean come on, this is a stressful situation, I need a damn cigarette! Just then, in walked the counselor…..JUST TELL ME THE RESULTS I wanted to yell, but she had to do her job, tell me her standard speech, and then…………….YES, you tested POSITIVE for the Human Immunodeficiency Virus and the test is 99.6% accurate. Now, I would go to Vegas with those odds I thought to myself….then my mind went blank and my body took over. I started to shake uncontrollably and asked her to go and get Camille, NOW!
As Camille walked in and she saw my face, she knew. She walked over to me to give me a hug and my first instinct was to withdraw from her. Don’t touch me, I kept thinking. I do not want to be touched. I just kept shaking; I could not stop shaking.
The counselor drew blood to do a second verification………..Uh HELLO! 99.6% accurate! I wanted to leave, get me the hell out of here. As we walked back to the car, with me frantically trying to light a cigarette I finally uttered my first words…”What am I going to tell my mother?” “This will kill her.” Camille made her best attempt to console me but the look I gave her let her know this was not an option right now. I wanted to go the hospital and talk to the doctors handling my boyfriend’s case. Camille drove and I smoked.
I walked into his hospital room and one week from the day I had brought him in I really looked at him, I mean really looked. There he lay, tubes in every possible orifice of his body, a machine breathing for him………and it hit me. HE HAS AIDS. Yes! I see it now, the weight loss, the diarrhea, the loss of appetite. AIDS - how had I missed that?
I demanded to see a doctor RIGHT NOW I told them. Magically, after 7 days of begging to talk to a doctor, one appeared before my eyes. I was a woman on a mission. I told her I wanted to talk to her privately so Camille, myself and the doctor went into a little room. Oh by the way, I am still shaking and now, the shaking has become so violent, I look like I am convulsing, real pretty visual. I confronted the doctor and told her that I had just tested positive and that I believe that my boyfriend had PCP, an opportunistic infection related to having AIDS. She said that is what they “think” he has but the test results have not come back yet. ARE YOU FREAKING KIDDING ME? It took me all of 20 minutes to find out and he has been here for SEVEN DAYS? And even MORE DISTURBING, you know I am his partner and you didn’t tell me? Now I am not a violent person, but I wanted to bitch slap her!
I think that I did more in the first 24 hours of being told I was HIV+ then most people do in a year. After leaving the hospital, we went straight to the GLBT Center where I talked to a counselor. I think she wanted me to cry, or was at least waiting for me to cry. No crying for me, I meant business. I am an action girl, sounds like a superhero name, I think I like that! Okay, so Action Girl (formerly me) called my primary care physician and immediately went to see her.
Oh, by the way, did I tell you that I was telling EVERYONE that I was HIV+? Oh yes! “Hey I am going to get some cigarettes, did you know I was HIV+?” I called my boss, “Just wanted to let you know that I am taking off for the next few days, I’m HIV+.” It was kind of like I was talking about someone else, I was someone else, I was HIV+.
At the doctors office, when you are initially called in, you are seen by the nurse who takes your vitals. She asked me the reason for my visit….here it goes I thought to myself, I’m ready for the reaction…”I was just told that I am HIV+.” As Camille stood right by, mostly because I wouldn’t leave her side and her fear that I would fall down from shaking this wonderful nurse took action. I mean I HAVE NEVER seen anyone at my doctor’s office react so quickly. She got paperwork, she lowered her voice, she took my vitals, but most importantly, she wasn’t afraid of me. What was that about I thought? Did she not hear me, I AM HIV+ I wanted to yell at her, but she already knew that.
Once in the doctors office with Camille right there with me, the doctor came in and I gave her my Reader’s Digest condensed version of my story. I immediately expected her to put on gloves, but she didn’t, what’s that about I thought once again, I AM HIV+. Isn’t she scared? After checking my glands, my throat, etc. she looked in my chart and said that when I was there back in January for what they thought was strep throat was actually not, the test came back positive for Thrush. Yep, check off another symptom of HIV, check. She ordered lab work, and we are talking like 12 different vials of blood here, but none were HIV related. I WANT TO KNOW MY TCELL AND VIRAL LOAD and I want to know it NOW! She couldn’t order those tests they needed to be ordered by the Infectious Disease Doctor, oh now that is a pleasant name for a doctor……and now I am “infectious” wonderful, just freaking wonderful!
In my haze to make sense of it all, I went home, with my referral in hand to the ID doctor, who by the way I could not call for 48 hours………..48 HOURS? ARE YOU SERIOUS? And started to make some calls, the first, to my brother, who is gay and an HIV/AIDS counselor. He would not take my calls, he would not answer my emails, he just plain would not respond. Let me preface this by saying he knew on Friday that I needed to go for a test and said to call him with the results. I was a woman on a mission, I HAD TO TALK TO MY BROTHER! Who else would know what I needed to do next. After hours of trying to reach him and countless messages, I finally received an email from him………”I am unable to be your support system and can not be there for you emotionally. I suggest you contact a counselor to help you through this.” WHAT THE F@!$R? Okay, now I lost it, BIG TIME. I could not believe that he would say that to me. I was more stunned by his reaction then I was to being told I was HIV+. I had to move on though.
I called my closest friends, not even thinking for a moment that telling them over the phone was not the best idea, but I was handling it so it didn’t seem like a big deal to me. WRONG! Tears and more tears from them put me in a position to now become an educator about HIV. I knew just enough to put them at ease but not enough to convince them I wasn’t going to die. They wanted to see me. They wanted to verify that I was still Lisa and that I looked the same.
By Friday of that same week, I started to not be able to breathe. I mean I could not catch a full breath. I was light headed, dizzy and wasn’t eating. But mostly, I just couldn’t breathe…………..Yep, I thought I had PCP. I mean I had all the same symptoms as my boyfriend. I must have it. I know I have it. So, I called the infectious disease doctor and said if they didn’t see me right now, I was going to camp out in their waiting room. The most WONDERFUL nurse took my call and told me to come right over. Once I arrived she took me right in - no co-payment, no forms, no nothing. She sat me down in a chair in the hall and called the doctor over. He asked me what was going on and I told him I had PCP, I knew it, I was going to die, I couldn’t breathe. He checked my heart rate and it registered at 138, he then took his and it registered at 92. I was dying, that was proof. He sent me down for a chest x-ray and told me to bring it back to him. I got the x-ray and brought it back upstairs where the doctor looked at it and showed me that no, I did not have PCP. My lungs were fine. I was, however, having the mother of all panic attacks. Since I had never had one before, I was like “what?” Yes, he explained that the stress that I was under caused me to have a panic attack, hence not being able to catch my breath, dizzy, etc. He prescribed Xanax. We LOVE Xanax.
That was a little over a year ago and the panic attacks are gone. I still have not cried. I truly believe that your mind will not let you experience what it knows you can’t handle at the time. I’m no different then I was before. I look the same. I mostly act the same. I still have drama in my life. No one is left out. In fact, I’m so convincing that my friends often forget I even have HIV. That can be a curse and blessing all in one. Sometimes I want pity, I want you to feel sorry for me…………then I snap out of it and get on with life. I have only disclosed to my friends and my niece and brother. My other siblings do not know and I will outlive my mother so no use in worrying her. I learned that there has to be a benefit of disclosing so I am much more discerning now that I have some time under my belt.
So far, my health is great. Good numbers, no meds and the doctor says it will be a while before I will have to take them. I have yet to “date”. I miss the intimacy of being with someone, tremendously. I carry around a huge secret and not just everyone is going to understand and accept it.
Today, I go about my everyday life and there are days when I am still shocked to realize I have this virus. But I do. I realize also that there are not a lot of resources out there for HIV positive, heterosexual women. I want to change that; I will change that.
I want to evoke change. I want to change the perception of this virus. I want women to take responsibility for their own sexual well-being. It is my fault that I am infected and no one else’s. It doesn’t matter if my man cheated, was on the down-low, or whatever. It’s my body, my responsibility. I am 42 and have been sexually active since I was 18 and I can count on ONE hand the times I used a condom. All I cared about was not getting pregnant. Amazing that I have never had one STD and now I got the big kahuna.
I've been on the forums since March of 2006..........I don't post as much as I did in the beginning, I needed this place more then than I do now.
Lisa
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Wow Lisa, so many issues.......... health, love, betreyal, devestation, disappointment, trust, kindness.
I read this b4 on your blog but not paying as much attention. It is so overwhelming and it takes me back to my moment of diagnosis and those first awful weeks of not eating, not sleeping, smoking like a chimney, and worse of all walking around like a living dead, an outcast among the unaware, it was almost like being one of these aliens or robots with human skin. Dead inside but looking normal and functioning on the outside.
"Not everyone will accept that", that is true, but many people that you cannot imagine will. That is my experience anyway. People who should, might not; people who look like they couldn't possibly, might well.
I really like your writing and I am always looking forward to reading more. You (and the rest) are just wonderful people. I take my hat off to any woman struggling with this. God bless all of us.
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I'm Kim and I've been HIV + since Feb 23, 2001. I was diagnosed in May 2001. I am 26. My whole situation started with me hitting with enormous odds. I had moved out of state to attend college and was going good with the studying. I was one of those squeaky clean sheltered people. I was excited when a handsome Kenyan man took notice of me and didn't think of anything when after dark he took me to a remote area (I honestly thought it was just to go for a walk, that's how stupid I was.) Despite me saying I didn't want sex, he made it happen anyway, saying I was his girlfriend and he didn't need to ask for sex with his girlfriend. That was how I lost my virginity. This was a Christian college--my grandma told them what happened and they did an "investigation". The guy, who was an athlete, said it was consensual and I liked it rough. The school concluded that I was lying and since I had sex, I was basically kicked out. 2 weeks after the incident, I came down with a serious illness and was hospitilized. The doctor had me in isolation (I had pancytopenia and my white count was very low). Eventually they found the CMV, but the HIV wasn't positive yet. When I was well enough to come back, the school told me not to bother coming back.
May 2001, I got a letter from the Red Cross. I had given blood the month before in a blood drive. I had thought at the time all was fine since I wasn't educated about HIV at the time and thought that negative test was definitive. They told me to get tested since I was found to be reactive for HIV antibodies and NAT positive. My positive test came. My mom told her whole family and I was ostracized. They felt I deserved it since I didn't listen to them and still dated an African. If I came near them, I couldn't eat on the same dinnerware, do my laundry with anyone else's laundry, or cook in the kitchen since I had a habit of eating cookie dough as I cooked it and they thought I might give them something.
I went through a bad period. I had periods of promiscuity and self-mutilation. I automatically thought that I couldn't be a doctor and so just decided I'd be a medical technologist--I just picked a college and went to admissions and got into the program. Since I always had high grades, getting in wasn't a problem. I completed my degree in biology, then went on for a degree in clinical lab science. I came very close to getting my tubes tied and thought I wouldn't be able to date.
Eventually I was able to change to being willing to live with HIV. I think what first woke me up to the fact that I had a choice in how to deal with was meeting two HIV positive people. One was in a long term magnetic relationship and didn't let his HIV run his life. He has a very full, happy life. I met another HIV positive man. He drinks, is depressed, and doesn't care or see the point. I realized I didn't want to live my life the way I was going. Another thing that helped me was actually finding love with HIV negative men--real, meaningful relationships that made me realize I was still desirable and worthy of love, as corny as that sounds. I have ups and downs with this, but I am glad that I have learned many lessons along the way.
Right now, I am still a medical technologist. Surprisingly the career I just picked out of thin air is one I really like. I have already been made a supervisor of point of care testing in addition to working the bench as a generalist (meaning I have skills in all areas of the lab) and I was able to get the responsibility of starting up the rapid HIV testing program, which helped me learn a lot. I am working on my master's degree, and I want to get my Ph.D instead of MD, because frankly I am not the type that is the best face to face with patients, but more in the background. I do get involved with HIV education. I am still amazed at how far we need to go in that area. It worries me the anti-condom message around. I made sure both my cousins (the ones I am close to) were savvy in condom use and made sure they knew to get tested with any new partner before they even thought of taking them off, because I want them and others like them to know to protect their negative status and take charge of their health. I hope someday (I'm a shy person, so this will be a barrier) to be able to counsel those who have just found out they are positive.
healthwise, I am doing great. I have been on meds for 3 years. My counts have tripled and I am undetectable.
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Dearest Lisa:
Know that you are not alone in your situation. I've been HIV+ since 1988, and the man that infected me (my first husband) died when I was in treatment (for drug abuse) in 1989. It was a very sobering time.
I feel like you do-women need more education. I'm going to be calling on my ASO about how to change that in my area of the world.
I have been blessed with pretty good health. I am also an Insulin-dependent diabetic. That happened to me AFTER I tested HIV+. But it's under pretty good control. My cholesterol is off the charts right now and I just started a medication (GOD, I HATE all the meds) for that.
Keep in touch and let us know how you're doing! I will certainly add you to my prayer list!
Peace-
Betty
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Hie. i'll be 28 september . i tested poz on 4 april 2005. i dont know who infected me as all the guys i could suspect all happen to be out of the country and i have no way of contacting them and the one i was convinced to have infected me has assured me that he is negative over in UK so i dont know. he could be lying or he might be telling the truth. anyway i'm trying to move on regardless. i havent told anyone in my family though i wish i could but i feel i cannot and will not get the support i might need from them. i recently joined a support group and we will be meeting this coming saturday. i'm hoping something will come out from this.
i have no kids , never been married. dont think i ever will now because of this virus. if i meet a guy i like i feel i have to disclose and when i do they disappear. so now i've given up on that and if i meet someone and its a casual thing i dont disclose coz obviously and defintely we'd use protection. i really dont want to go thru the rejection thing ever again and if it means i'm doomed to a life of meaningless hook-ups then so be it. ok. maybe one day someone will come and all that but i'm not holding my breath.
sorry i have my period right now and feeling pretty down in the dumps coz i may have to start meds soon. i might have to come back and edit or repost this ..
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Hey Tendai:
Hang in there! You'll probably meet someone when you become comfortable with the diagnosis yourself.
About meds, I've been on them for the last 12 years. I tested poz in 1988. They've come a long way on meds and I know that's the reason I'm still alive. So, if you have to start them, just tell yourself they will help you leading a longer and more productive life. Hope you're feeling well soon!
Peace-
Betty
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tendai, I agree with Betty, once your'e secure in your diagnosis, it seems to just happen with guys! I'm 40, diagnosed June 2001, went on meds 9 months ago and am probably healthier than most negative people...it doesn't have to mean you deny yourself a life, I PROMISE..and you feel free to be however you need to be here. Thats what its for!!
Kim, your story made me cry, and furious..just goes to show we've a long way to go, but you seem to have come out the other side, other peoples bravery and unwillingness to let this bitch of a virus win is both humbling and inspiring
jo
xx
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Hi, my name is Andie and live in sunny FL. I was diagnosed in May of 2006. Yes, I am a newbie. I was diagnosed when my husband went into the hospital, for at the time was pneumonia. He was in the hospital for a week before we found out we are positive. I am in good health with good numbers.
I have 2 stepchildren and 1 daughter. Everyone in the family does know we are hiv+. The only one who doesn
t is my 12y/o daughter, for fear of the parents of other kids treating her badly. I have a great family who understand and are supportive. We have just purchased a house. YEAH, and are moving in next month.
I like to check the site on a regular basis for information and for conection with other women. In the town we live in the only other positive people we have met are men and I long for some converstion with positive women.
Andie
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Welcome Andie! Hope you like it here! ;)
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Hey Melia ...
You keep you head up ... and don't worry about the ignorant people ... you are a good person .. and if they don't know that ... then screw them .... ;)
Thick713
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hi my name is dorothea and i live in the bronx new york
other than that if i didnt know any better i would swear you copied my thoughts ;D
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I am Blue and l become poz in 2003.I am on meds doing great but for a few minor aches and pains along the way.I am 38 and was given the "gift" by a man who was going take as many women down as he could with him.He was charged and we are a waiting our court date with him.
I have two great kids my wonderful family of friends and this place to help me cope and get by.I may not post much but l do a read at least once or twice a week.Being poz has changed me sadly l used to be more out going now l stay to myself more.But l am slowly starting to find more pozzies in my city and l am making new friendships which is helping me greatly.
The good side to all of this l have learned to take better care of me and cut out the stress and bs in my life.After four years and still some work to go l am finding a good place for me in the world again.
And l too love chocolate.
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Ladies: Thank you to all of you who have shared your stories and thoughts so far.
I’ve been following this thread since I first started it; but today I copied and pasted it and took it into work with me to read again, to absorb it better.
For me, to read such truths, such openness is encouraging and inspirational.
It takes courage to be so open and honest about one’s experiences; but I believe it is an essential part of acceptance and healing. I hope that, no matter wherever each of us is along our journey, this thread has served to play some positive part in your healing process.
Looking forward to hearing from more resident ladies. All in your own time of course.
Melia :)
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Now I'm happily settling back down in the UK I'm catching up properly on all the forums. Quite a few new ladies have joined the website since I started this thread, so I thought a little bumpety bump was in order.
Welcome ladies...and keep sharing those stories!
Melia :)
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Just thought I would keep the bump going...But I have read some of your stories and am amazed at your strength. Especially SD, all I can say is wow. I have a few errands to run but will share my story when I get back..
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hi my name is dorothea and i live in the bronx new york
other than that if i didnt know any better i would swear you copied my thoughts ;D
GRLFRIEND...iam from the bronx too..What part of the bronx are you from?
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Hi Everyone,
My name is Cindy, I am 37 years old and live in the suburbs of Washington, DC. I was diagnosed on 12/22/93 and seroconverted sometime in 1992. My BF and I had dated in high school, had gone our separate ways for about five years, and then started dating again in Jan. '92. We bought our home together in Feb. '93 and were starting our lives together! I went for my women's exam in Dec. '93. I hadn't tested since '91 in college, and knew I would continue to be in this monogamous relationship with my BF, so I got tested again. I thought it would be a good idea to get a "baseline" just in case. I was so surprised that I tested pos. I could count on one hand (with fingers left over), the number of times we didn't use protection! I drove home that evening thinking that I would be able to tackle this, as I had been diabetic since age 11, and was used to being on a schedule for meds, etc. I just wasn't sure how long I would live. My biggest worry was getting home and telling my BF that HE must have infected me because I had tested negative in college on more than one occassion. We got engaged a week later on Dec. 30th '93, and he said he would go get tested soon. In Feb. '94 my fiance went to get "tested" and said he was pos. I found out from him later that he had tested pos in May '88 and had known he was pos all along! He knew it and didn't tell me. This was all very difficult for him to deal with, he was 20 when diagnosed, was a long-haired rock 'n' roll rebel in the late 80s and early 90s, who played guitar and drums. We married in Oct. '94 and just shy of our first anniversary, he got sick with non-Hodgkins lymphoma, hadn't been taking his AZT or anything. I had just started on AZT around that time, in the Fall of '95. My husband died on August 21, 1996 at age 28. I was widowed at age 26, no children. I maintained my independence, fought to keep this home that I still live in, and kept up with my docs appts. A month later in Sept. '96 the PIs came out and I was on them from '96 - '02. I had started dating, and had a 2yr LTR during that time from '97 - '99. A lot of disclosing and a lot of rejection in between LTRs also, but my counts were pretty good, VL good, so I considered myself lucky. No OIs or hospitalization (even to this day). In '02 I had a genotype done and the PIs weren't working, so I switched to Sustiva/Zerit/Videx EC. Another LTR in 2003. First signs of lipo from the Zerit in 2004. Another LTR from June '04 until Dec '06 (I was with neg guys, never pos, still can't figure out where they are hiding.....). Back in Fall 2005 my doc stopped the Videx and Zerit, and instead tried Truvada with the Sustiva. In 2006 I started to get my face back some. I have been single since last Dec., because my BF didn't want to face life with a pos partner. I wish he would have told me sooner! This was after we had almost completed building our new home in another state, after I had switched jobs, after I had made major lifestyle changes to get ready for my exciting new future, which I thought was a "sure thing!" All for nothing, but I dodged a bullet by being dumped, THAT I do believe, lol. (He met someone on eHarmony last Feb and got married after only 3 weeks, I have come to find out. Bets are placed, lol!) Labs are good now (see below), I have been on insulin since age 11 (on a pump now for a year, yes, I "beep" on occasion), I have an injured neck and back with disk degeneration and fibromyalgia, and I go to see my chiropractor regularly. I am unemployed (over 2 mos now) but holding out for a good job that is right for me, with good benefits. This is a lot to deal with, being single and alone, but its manageable. Somedays, barely manageable, but I am hanging in there. Thank God for my dog, Cheech! ;D
I still have my mind, and now I have all of you, too. What a gift this site has been for me over the past few weeks!
Thanks for listening,
Cindy
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Hi Cind
what an amazing story & strength. i heard it b4 but it doesnt cease to amaze me.
incredible to that you were able to reverse lipo. all incredible, the LTRs, the job, all of it....
Have a great evening
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Here goes my story....
I am 37 yrs old and hail from Erie, Pa. I became infected from an ex but found out through a co-worker that my ex was poz. Oh, I forgot to mention that my bug hails from Miami, Florida, that's where I was living at the time. I lived there for 5 years, getting tested every 6 months til I moved back home. In August of 97, I went to the health dept to get this done because at the time I did not have a primary doctor. It usually takes 2 weeks to get the test back but I never went back. So, instead, they came to me. At the time, I was living with my oldest sister, so she overheard the results but would have known something was wrong anyway because I was in tears. That night we were going to meet up with my other sister at the bar. While getting ready, she was telling me that I should tell my other sister that I tested poz. I really didn't feel comfortable doing this because me and my other sister had our differences and she is a big gossip among other things. I decided to give her the benefit of the doubt and tell her, thinking maybe this will make us closer.......WRONG. Instead she told just about everyone who knows me, including a few guys I was dating at the time. That was my first encounter with disclosing and it has haunted me ever since. Til this day, she still goes out her way to tell someone. This seems to be her life's mission. She even had my son thinking I was on my deathbed, this was before he came to live with me.
I felt totally betrayed and alone. There was no one I could talk to. I had one friend who is gay that knew but at the time he wasn't poz, he is now. And I was so ashamed that I started staying in the house, not going anywhere. When I made attempts to date, it would be through a chat line or online, that way my sister wouldn't know the person and most of the time, I would leave town to go see whoever. The Health Dept put me through to my ASO, so I would half ass go to appointments and clinic. My case manager at the time would have to bribe me by giving me extra food vouchers to show up. I just didn't want to be seen by anybody.
Since then things have changed for the better. My case manager died and I have a new one. She usually schedules me on the same day I have a clinic appointment. She's not as good as my old case manager so I basically doesn't talk with her much unless I need her help with something. I no longer get the food vouchers but I do make my clinic appointments w/o fail. I made a promise to myself in honor of my old case worker that I would stay on top of clinic appointments and getting blood work done. I haven't missed one since, same goes with seeing my primary doctor and gyn. I promised to take better care of me.
I tend to think I have a mild form of the virus or some good genetics because I am going on my 10th year of being poz w/o being on meds. In June, my cd4 was 340, up from 261 and my viral load is 24,700 up from 13,000 and some change. I have never been in the hospital for OI's or anything other than 3 c-sections. My battle seem to be more with diabetes. I just found out I was diabetic like 2 years ago. It wasn't a surprise because it runs in the family but I got it later than my older sibs. I have been having probs with the diabetic meds and their side effects. I started a thread about this in Living With . My doc called me today and told me to finish taking the Actos til he can get me in with diabetic classes. I got the prescription filled but not sure if I want to take it. But I am still taking the other one, glypizide. As you all know, I am a mad weed smoker but even when I get the munchies, I eat healthy. I usually whip up a salad or something. I do get cravings for sugar like something sweet but I don't eat sweets much.
I could go on and on about the treatment I have been through as far as being poz but I don't want to bore you. I still feel that my poz prince is out there somewhere. At the moment I am on a quest trying to find him. I prefer to be with someone poz like myself because it would be easier with someone who can relate to what I am going through. I have nothing against negs but would be too worried about infecting them. I guess that is me in a nutshell.....
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Wow Cindy...I hope me and you get the chance to chat over coffee or a glass of wine some day.
QueenA...thanks for the bump missy ;) and for sharing your story.
There are some incredibly strong and inspirational women on these forums. I suspect that a certain Mr Moffie will be jigging a gleeful jig at the amazing ladies who are participating on here. Simply FABULOUS.
Melia :)
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Hello All,
I read all your stories and felt compelled to tell mine. as some of you already know. I am 25 years young I live all alone no family or friends near me. It will be a year in September that I tested positive for the Virus.
I was infected when I was raped, I was leaving a frat party one night trying to be responsible knowing that we had finals the next morning. So I left early and stopped at 7 eleven for some ice cream which helps me study.
as I was walking back to my car I heard someone come up behind me but before I could turn around he already had his gun pressed to my forehead. he told me that if I was to scream that he would kill me right there. he dragged me about 15ft from my car to a wooded area, and all I am thinking is please let someone be seeing this or calling for help, but just my luck no one was around.
when he got me into the woods he proceeded to rape me, I mean he rape every hole that a woman has, and the more I tried to fight him the more he hit me across the face with the gun. I couldn't fight anymore my screams became weak from the beating my I was fading in and out. I thought for sure that when he was done he was going to kill me, but he didn't he left me there after he beat on me for another 15 to 20 minutes..I laid there crying in disbelief I couldn't;t grasp what just had happend to me.
He stole my innocence I was still a virgin at the time waiting for that special someone of my choosing to give myself to. I never felt so violated in my life.
I finally found the strength the make it to my car and go home..WOW is all that I can say. my parents flipped out you couldn't even recognize my face.
I told them what happend and my mother really took it hard blaming herself saying that maybe it was someone that she sent away, because she is a judge
and this was there way of repaying her. We never caught who rapped me because his DNA didn't match anyone in the system.
I never had any systems of being sick etc..I just kept going it was like mentally I knew that something was wrong/ I t came back Neg the first time,,,then I went back and that's when it came back Positive.
I mean I tried to commit suicide which failed as you all can see, I still haven't disclosed to my family. I told one friend and that's only because she has lupus, I have no desire for sex at all. I am still attracted to men, but when it come to the point of them touching me I get really uncomfortable. I dropped out of law school after to years..even thought I plan on going back to pursue my dreams.
I know that I will have to tell my family soon, but I am still fighting my own demons..I have been really depressed I guess because the time that I was rapped just passed, so my doctor put me on Paxil, and Xanax which I am a fan of ;D..
I work for my health insurance company and my pcp just put me on short term dis so I can make all my appointments because I was going to quit because my manager wasn't trying to be flexible. I know that they will know my status and at this point I don't care, because maybe if they know the severity they wont be so hard on me to let me off to see my doctor.
I am so happy that this forum is here, and I am hoping to make life long friends even a mentor from being on her..so If any of you would like to adopt me I am available. I am so honered and happy that I am a woman, because we are truly strong people. I mean we can handle any and everything that comes our way. I appreciate all the stories they just confirmed that I am not alone.
Camry who is currently "HIGH" on xanax right now...lol
Love you all and take care!!!!! :-*
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Camry~~
What a story and I really do feel for you. I can also relate, I was raped on my 20th birthday. I knew who raped me but because we met at a club, it was considered date rape. We both passed the lie detector test too, so they threw it out. The only justice I got was that he died on bus bench, I guess he got his in karma.
It was not meant for you to die that is why your suicide didn't work. You are on the right path by just focusing on you. It took me 2 and a half years before I became intimate with anyone after my rape. Just take things one step and day at a time. You will disclose when you feel you are ready. You will date again when you feel you are ready.No need to rush anything..
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Hi Camry
Thank you for sharing more details about your story. Incredible. What a strong woman you are.
I have two questions. Did you get any post-rape counselling? Has the desire to go back to school started to warm up a little?
I'll look for your reply.
Em
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I wonder if Moffie is dancing yet?
LOL :DThere are some incredibly strong and inspirational women on these forums. I suspect that a certain Mr Moffie will be jigging a gleeful jig at the amazing ladies who are participating on here. Simply FABULOUS.
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Hi Camry,
Again so difficult to read your sad story, really heartbreaking.
Consider yourself like someone who had a really bad acceident and is still reeling from the shock (it is worse than an accident, but anyway). It takes time, a lot of time. I do think you are handling it remarkebly, I do think you should tell your parents, you have done nothing to be ashamed of but ANYONE's standards, no matter how conservative they are. Only you know your family. But since they know about the rape and this is a direct reprecussion, shouldn't they know?
And you definately need counseling. I really urge you to find support through a local woman's group, rape hotline, social services, hospital, ASO, whatever, but you need to meet and talk to someone. Your life can recover, I am sure of it. But you need help. These forums are really helpful but not a substitute for 1:1 therpay. Please give this to yourself, seek outn the kindness and support that you deserve.
All the best to you,
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Camry my heart goes out to you, i can imagine how awful it was to go through that and i totally agree with the others that you should talk to someone about it, even your parents or at least a rape support group or something. still u're on the forums so thats a good start.. But i'm glad u're ok even if its bcoz of the xanax.
big hug from me
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Thank you all for sharing your stories with me.
i guess its easier online to do so..at least it is for me.
I was 33 when i found out i was hiv positive..My lover of 10 had it and never told
me...Back in those days, you didn't have to tell anyone..Now its a punishable crime..Anyway...My lover died in 1992, but knew about being infected since
1986...
I took a hiv test at the clinic because they said. we will pay you money for your
time and bloodwork..So i said ok..
Well 2 weeks later i tested positive...Stupid me, didn't realize that my lover
was getting skinnier and skinner, also being hospitalized for Hepatitis and Pneumonia....Later on, my lover had TB..but that time we had broken up, but
I felt bad so i went to see the asshole....I walk in and the asshole says give me
a kiss, so i did..Later a nurse came in with a mask on and said, didn't anyone tell
you that your ex lover has TB which is very contagious...I said no..
Damn, the asshole knew it all the time and wanted me to be sick as well..
I said to myself ..God dint like ugly...and in time, my ex got weaker n weaker
Finally passed away 5 yrs after the initial diagnoses.......
I never wish anyone ill, but what comes around goes around...
My ex stayed with family, but even the family didn't want my ex around, cuz
everyone knew by the looks that this person had aids....
They put my ex in a home, and didn't give the meds my ex needed for a whole
week..My ex was on methadone as well....So my ex died.. I was told the
body went into shock, and my ex passed away...I was happy for that much,
because it was a living hell.............The only medicine out there at that time
was azt..
Thank god, iam still here ..tested pos in 1987 didn't take meds for 15 yrs.
I started meds in 2002 and iam still here, looks changed, big belly skinny legs
humpty dumpty looking..but never the less..Iam healthy..thank god and all
the new cocktails that have come out since that time..
Now i wish they would do more research about the side effects and how
they could prevent them......That's my biggest issue now.......Hop they find
something soon...Had to kiss my bathing suit goodbye, and all my other clothes.
I aways look at the glass as half full..and try to keep an up beat attitude...
But sometimes i get like everyone else, and just want to stay home do nothing
and become a couch potato...Guess we all have our days, don't we ladies..
And thank you all for being brave enough to share your stories..
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Alright here goes nothing,
I was 16 going on 17 when I meet this guy through a bunch of mutual friends. When we had sex for the first time, he asked if I wanted to use a condom, ( which I thought at the time was strange, since we had meet through mutual friends I thought it was safe, stupid me). He was older, in fact he was 28 at the time, and he knew of my age. I ended up moving with him to Michigan cause his mom was there, and that's where I found out I was pregnant. Stupid me wanted to keep the baby and the night before the appt with the doc, he told me he had gone to the doc the week before and had tested positive. I just knew from that point that I was positive as well. I ended up miscarring the baby, which was a blessing. And I did stay with him for about 1 1/2 years after that as well. During that time, there were red flags about his behavior, which looking back, makes everything seem clear. Hind sight is 20/20 they say.
I was still to young to go to the bars, so he would go without me everyonce in a while. And I started to get phone calls from guys in gay bars, saying my boyfriends was kissing on them, and that he hit there car in the parking lot.
Then asshole got kinkier and kinkier in bed, and started to buy dildo's to use at first on me, then he started to use on himself, which at that point i was like not turned on and wouldn't continue, but he keep on going. So shit like that keep happening, and at the time I still never thought that maybe he was gay or bisexual. The thought really never crossed my mind until I had left him, for regular relationship reasons, that I started to see what it all was.
He never applogized to me for infecting me, or addmitted to having sex with other men. I later found out from his brother that he knew about his status before he meet me, so he knowingly infected me at the ripe old age of 16.
Man, I was naive, I really thought I knew everything back then. I was wrong, dead wrong.
After I left him I moved back home, and just went on about my life as if nothing had happened. I went to the docs and had my check ups, but didn't take any meds. I guess I was in alittle bit of denile about it all.
The older I get, the more aware of my condition I get, and the more I worry about my life.
I have since been able to find a great poz guy to marry and have a child with, and I live the normal life as any one else, except I have this disease that requires extra attention.
Shit happens everyday to millions of people. And I have trully been lucky to have the support of family and friends and to have access to meds.
I just live life now, and enjoy it while I have it.
By the way, I 'm not mad anymore about that guy who infected me. I can kindof see his side on it. He has to live with fear, as I don't. That's punishment enough.
Much love,
Nicole
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First off I wanna say that I stayed up WAY too late last night reading all of your amazing stories! lol But I couldn't stop reading! You are the kind of people I have been trying to find! Women who know what I am going through and women who have overcame bad things in their lives. You are all so amazing!!!
Ok lets see here....My name is Nicki. I am 23 years old. I was infected when I was 19 by my ex-fiance. The day I found out I will never forget. Before I tell you that though, I wanna give you a little background ok? I didn't loose my virginity until 2 weeks before my 18th birthday. I knew their was diseases out there so I decided to wait until I had an acutal boyfriend I trusted. I thought I had been smart to wait cuz there would be less chance of getting stds or getting pregnant while I was a teenager. When I was 16 I moved to Mississippi to live with my mom. After I lost my virginity the guy said he didn't want a relationship, he just thought we were like friends with benefits or something. So that hurt me and I tried my damndess to make him jealous, and I just went a little crazy. I started realizing just how many men were hitting on me and I never really paid attention. Everywhere I went, grocery shopping gas stations, walmart lol, guys would ask for my number. It got pretty intoxicating that all these sexy guys wanted me. Over the next 2 years I flirted with too many guys to remember and slept with about 11. The majority of the time was with a condom. When I was 19 I met this guy who treated me amazing at first. Wrote love songs to me and everything. We were together for 3 weeks and he asked me to marry him. I said yes! I felt totally crazy but I wanted to believe in love....believe that we could be together forever! We spent every day together. A few weeks after we got engaged he had some weird rash on his legs and we ended up going to the clinic since he didn't have any insurance. The doctor told him it looked like an allergic reaction from soap or something, and then they drew blood because they always test you whenever you go to the clinic. Nurse told him if he didn't hear anything after about two weeks everything was fine. Exactly two weeks later she called and said he needed to come up there. I knew something was wrong. When we got there they took him back and made me wait in the waiting room. Oh God, something was wrong, and I felt like I was going to puke! Shaking I went and waited in the car. Little while later the nurse came out to the car and told him that I needed to come back now because my boyfriend had something to tell me. I'm hoping its something treatable. Nope. He was HIV+. I sat there floored...the nurse told me I needed to get tested. I felt down deep in my soul that I had it. I tried to hope maybe I didn't, but I knew. I called them back two weeks later and they told me to come back in. The test came back inconclusive. So now I had to wait another two weeks to find out for sure. Meanwhile I was loving my man more than ever. Telling him I will be there for him no matter what. I got my results back and of course I was poz. I didnt tell anyone. Alot of stuff happened after that with my mom and these other people we were staying with, not HIV-related, just drama, and we had no place to live. I called my dad in Ohio and he said we could come stay with him and look for a place and jobs. I pawned most of my stuff for bus tickets, we packed up 4 big bags with what we wanted the most, mostly clothes, and took the Greyhound to Ohio. After three months, my boyfriend had found 2 jobs and we moved into our apartment. The day after we moved things changed. It was just him and me now. Before we were always living with other people. Now, it was just us. He started staying gone all the time. I never knew where to find him. I was in a city I had never been before. I just sat in my apartment all day and cried. He admitted to cheating on me with a few different girls in a matter of months. And didn't use protection with any of them, never even told them! I was so disgusted! How can he be so selfish?! One night I tried to kill myself. He came home and found me and called my dad. I can't imagine what my dad was thinking....I can just imagine all the shit my dad went through that night as a father, seeing his daughter in the pain I was in....it was a very dark time in my life. My dad found out that night I was poz. After a few more weeks of nonstop physical fighting, every single day, he stayed gone all night. I was done. I wasn't going to waste anymore time with this asshole who cheats on me like its no big deal. When he came home sometime early in the morning I told him I was done. I am packing my stuff and going back to live with my mom. He flipped out on me. Totally wrecked my house...broke everything, smashed glass and mirrors. We started fighting and eventually he grabbed a knife from the kitchen and made me go into the bedroom. With the knife to my throat he rapped him. I cried the entire time and when he was done he asked me if I was going to call the cops on him. I told him yeah! He grabbed the phone and called them himself! The police came and I ran to the door. I told them what happened and they arrested him. Before I opened the door, he looked in my eyes and told me that I would never leave him because he would always be watching me. That still haunts me today. I have nights when I cant sleep cuz every tiny noise I'm worried he's in my house. It hasn't been as bad since I moved to another house, but I still have my days. He spent a month in jail and was released back to Mississippi. He's supposed to stay out of Ohio for five years. It has been almost 4. After that I picked myself off the ground. Started to take control of my life. I wasn't going to let HIV kill me! It was gonna have to fight for me! I refused to sit and wait to die any longer. I got a job and met a guy at work a little over two years later. We started to get really close and I told him I was poz. He accepted me! I was blown away that he didn't scream and run for the door! We started dating and I found out I was pregnant. We used condoms, but did have unprotected sex a few times. I know, I know, it was dumb. And I feel bad that it even happened. I had a hard time with being sick while I was pregnant and could not keep my meds down for the first 6 months! I was so scared the baby was gonna get sick. On Feb. 13th, 2006, I had a c-section and delivered a baby girl. The day we went home from the hospital my mom came to stay with us for a week. I didn't know what to do. I had to give the baby meds, just to be safe, for the first six weeks! I ended up telling my mom the next day. I told her I had something that I needed to talk to her about and asked her to come in the other room. She wouldn't look at me and I could see she was trying not to cry. I told her that I had a disease and she started crying and said, I know. What?! How did she know?! The guy I lost my virginity too, told my moms friend he had to get tested because I tested poz. She knew for a couple years and never said anything! She said she was waiting for me to tell her. Omg do you know how much easier those first few years would have been if I would have just talked to my mom?! So now, here I am! Living in Ohio still with my fiance and my 18 month old daughter. They have both tested negative! I haven't told anyone else in my family. I just am not ready for everyone to know. Plus, I worry about people treating my daughter differently if they know, so I'm just gonna wait awhile. I am on meds and they are working really good! I'm a stay at home mom and I'm loving it! I am looking forward to making some great friends in here!
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hie nicki nice to meet you.
i just wanted to say i'm thrilled that your fiance and daughter have tested negative. u've been through a lot and survived it and i wish u all the best in everything u do. with your strength and the support of your mom and fiance the sky's the limit
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Hi, girls! I am sorry I haven't been on line in a while we are in our new house and everything is going good! I wanted to tell everyone to remeber WE ARE ALL STRONG WOMEN! Don't forget who you are and who you were before we all tested pos. We need to keep our voices and thoughts out there for other women who are to scared to come out and tell people! In order for us to be better accepted we need to tell people yes I am pos and I am still the same person!
Lots of Love to everyone!
ANDIE
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Okay, I just found this forum last night and I left some comments on a couple other topics but didn't realize that there was an actual introduction topic until Queen informed me so let me formally introduce myself now.
My name is Dee and I am 33 years old and counting. I found out that I was positive when I was pregnant with my second daughter in early 1994 but then later found out that I was actually infected a year prior to that. My ex who knew he was positive way before we got together came and admitted that he infected me when I was attempted to disclose to him after running into him some years later. I know that sounds weird and people kept saying that I should be mad but honestly I had no idea who could have infected me prior to him coming clean. So, I have been living with this my whole adult life basically and it took me about 4 years after finding out my status to come to terms with it. I am a native New Yorker but became a bit of a gypsy for awhile and now currently live in Southern California. Since first finding out my status I have had 3 daughters and I had 1 daughter prior to becoming infected. I am now in hopefully my last relationship, and first honestly healthy relationship, of my life with a man who is good to me and my girls. We are expecting a new addition to our family on February 8, 2008. :)
I don't have much of a support system at all and never have. All of my aunts and uncles know my status. I haven't told my parents as we have never been close at all. I grew up mostly in foster homes. My husband, show technically isn't my husband but we've been together for over 6 years now so everyone assumes we're married, knows of course and I recently told my oldest daughter who's 16 years old. She's getting ready to go to college next year and I wanted to make sure she knew that no matter how much you think you know someone you really can't trust anyone especially because as we all know a lot of people just don't want to know their status.
Anyway, like I had said on a different post here I am very glad I stumbled upon this forum because there's not places online just for us about us and our concerns as women. So thank you all for being here and I look forward to getting to know as many of you as I can!!!
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Welcome to the Forums, Dee! I hope to see you rant and rave with us in the Dating threads, they aren't just for dating. ;) Its more of a journal of sorts for all of us. Welcome! :D
~Cindy
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Hi everyone,
What a great thread and thanks to melia for starting it. I've been "lurking" on the forum for a while and have felt scared about doing an "intoduce myself" post on the general forums but I feel inspired by the amazing posts from other women on this thread.
So, I'm Nicola, aged 41, living in the UK (where I'm from originally) and diagnosed with HIV in December 2002. I got really sick while abroad, teaching English as a Foreign Language, which was my profession for many years - I did that for 14 years in 6 different countries and had a great time, but it all came to a sudden end when I ended up in a Bulgarian hospital, having nearly choked to death on a piece of lamb (which had to be surgically removed!!), which I now know was due to me having oesophagal candida - seriously bizarre experience! I never really recovered from that incident and after a couple of months of getting sicker and sicker, the American embassy doctor who was treating me told me I potentially was HIV+, as he'd tested me for everything else and all my symptoms fitted. He also said I should get on a plane and go back to the UK for an HIV test, as a positive result in Bulgaria would have resulted in me being deported! I will always thank him for that, and the positive HIV diagnosis was almost a relief at the time, And as it happened, going back to the UK and being diagnosed was a good move, as my CD4 count was 10 at diagnosis. Oh dear..!
When I look back at my diagnosis time, I almost "lost" 3 months of my life, as I don't have much memory about the whole thing - it's like a blank and maybe that's just natural to block out bad memories.
That was 2002 and I now like to focus on how I've started to "live" with HIV and get my life back on track, which I hope all of us can do.
Once I'd started on meds and started getting my CD4 count up, I began to start rebuilding my life back in the UK - yes it's been difficult, up and down all the time. People I thought were "friends" deserted me, so I'm still trying to build new friendships....Family is tough - they sort of try, but the essence is that they never really understand. I always disclose on principle - I will just not live a lie and other people have to accept me as I am - the whole package. And I have my beautiful cat, who loves me unconditionally...
After diagnosis for me, going back to teaching abroad was not an option - just can't get medical insurance and loads of countries have restrictive policies on giving work permits to foreign nationals with something like HIV...Plus I just couldn't face a classroom of faces looking at me... Once my health improved, I started doing volunteer advice work for the general public - things like debt and housing issues. This gave me a lot of new skills, and for people that don't feel up to paid work, I'd always recommend volunteering - no pressure, but we all have loads to gain and give.
Then in 2004, I got involved with a UK national HIV charity that funded me to do a training course in "career guidance" - that was great and got me a new professional qualification. And then I set up a pilot project in my local area to give advice to other people with HIV on their future options - unfortunately, the charity went bankrupt last month and the local contract folded with it - but at least I now know what other people with HIV in my area need. People with HIV, like myself, need specialised help and support to move on in their lives, set themselves new dreams and hopes and get out there and do stuff. And I'll keep fighting for that kind of service to be available...
For me, a big part of dealing with my own diagnosis has been helping other people to look ahead and live - we all have to realise that we are "living" and that's a great thing - the HIV issue should not stop us. And it's now become a big part of my life to go out there and support other people with HIV to live. It's a great inspiration for me to read posts on this forum, especially from other women. I've actually got some major gynae problems and it's great to see that other women out there are posting about these - you can do an internet search and barely find anything about gynae issues for women who are HIV+. When I get a bit more brave about posting, I'll join in on these topics. Unfortunately, I'm cripplingly shy and sustiva doesn't help....I have to constantly fight with myself to leave my bed (where I often just want to stay) and get out there.
So, take care all of you and I hope to post more soon.
Nicola x
PS Melia - know you're on a Greek island, so are you safe and well with the terrible fires right now?? It seems very bad out there right now.
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Hi Nicola~
Welcome to the Forums. I loved reading your post about all that you've done for people like us. I wish I could find someone like you in the US, I am having the shittiest day, haven't even gone to bed yet. Ugh! Its 7am here now. I hope to see you in the threads, don't be shy, be bold, lol!
~Cindy
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Hi Cindy,
Thanks for your message but most of all, thanks for telling your you story above, which encourages others (like me) to do the same. What's great is that we are all women and we all have stories to tell. And sharing them make us all stronger I believe.
Nicola x
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Nicola
Welcome! You might want to send Melia a PM as she should be back in the UK now. She no longer lives in Greece. You and she have a lot in common as teachers of English...and, being English!!
Looking forward to you shelving the shyness, pretending we're all your students, and having a go at posting with us.
Our growing group thankfully has a wonderful sense of humor, curiosity and kindness.
Em
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More thanks and welcomes to all the latest new ladies here.
A special welcome from me to Nicola - fellow lady UK-er and teacher - hello there! :) I'm glad you posted your story here. I actually meant to pm you the other week but kinda got sidetracked with all my moving/travelling. So I'll get onto that soon...btw, is that your cat in your avatar? Because if so, we also have black cats in common...I have 2!
As Em already mentioned I'm actually living back in the UK now (moved back in July), so I'm not affected by the terrible fires over in Greece. But thanks for thinking of me and asking.
I'll be in touch soon...
Meanwhile, keep those introductions coming ladies!
Melia :)
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Hello Ladies
I just read your stories and let me say I Think You LADIES are WONDERFUL!
Thank-you so much for sharing and giving me HOPE.
And Thank-you Cindy for suggesting that I check this out.
Quick Into
I'm 36 years old and I've been living with HIV since 11/7/2003
I'm on my second set of Antivirals
Reyataz,Truvada,Norvir
VL-undectable
CD4-843
Life is Good
I hope that one day I will have the courage to share my story; until then
THANK-YOU AGAIN TO ALL THE BEAUTIFUL,CARING,AMAZING WOMEN THAT HAVE
YOU LADIES ARE GRRREAT!!!!!!!!!!!!!!!! ; :)
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Hi Ladies,
Your stories are so inspiring, I feel like the villain here because I never disclosed to my husband until recently about my status. I don't even know if I should be telling my introductory story here, but I've just taken my dose of stocrin(sustiva) and it makes me think alot less straight than I usually would, so I will go right ahead.
I was formally diagnosed in April 1998 in the 4th month of pregnancy with my son. The news still came as a shock after years of hearing rumours about a guy I had been dating when I was 17 and at college, that was in 1994. I had gone through depression, denial, and more denial until the nurse called me and told me I needed to come to the clinic. Then she told me the news, I could not even cry, I just sat there wondering about my baby. She told me that it was OK to cry, and never let anyone (most likely she meant the doctors) tell me I had AIDS, I was HIV+ (up to that time I never knew there was a difference).
I had to force myself to keep eating, I got so depressed but there was nothing they could or would give me for the depression because of the pregnancy. I was immediately put on AZT which surprisingly had no side effects. I told no one, no one at all. I just wanted it to go away. I believe if I hadn't been pregnant at the time that I would have tried to hurt myself, but God knows best. My son tested negative and I finally told his father six months later when I found out that he was cheating on me. He also tested negative, and he left to be with his new love.
I met my husband couple months later but could not tell him. I could not get the words out, I know it was not right but I was hurt and afraid and I thought it best never to tell another person. Soon I was pregnant again, we were using condoms but one time, just one time it came off during sex. This pregnancy was not like the first because the nurses where cold towards me because it was the second pregnancy while being HIV+. I delivered my daughter with the midwife telling me that there were places for people like me, she didn't touch me not once. I was left there on the bed for hours without being cleaned up, they took the baby to be checked and brought her back hours later. Thank God she also tested negative.
About four years ago I started to get sick, I was short of breath, couldn't walk even short distances without using an asthma inhaler, and I wasn't asthmatic. I got weaker and weaker, but yet no one asked me anything, not my family, not my husband (we weren't married at the time) until I got into a car accident, not very serious but serious enough for me to go to the doctor. My CD4 count at the time was 127, they never told me the viral load. I was started on Zerit, Stocrin and 3TC. I decided then to tell my mother, because I was sure that I was going to die and I wanted to be the one to tell her rather than have a doctor do it. A year or so later the physical changes started, my belly got huge, I lost weight from around my legs, hips, thighs and buttocks and also got an extra chin. Still my husband never asked anything, and still I didn't say anything, I just stopped having sex altogether, started going to church and used that as the excuse why we shouldn't have sex until we were married. Then we got married and I had no more excuses. I told him a month or so ago and at first he was in shock, then he was angry that I had kept it from him for so long, now we never talk about it. He just goes on as though it is not there. But one day he got drunk and told me that if any of his friends asked him how he was doing he would have to say that he wasn't good because his wife was dying of AIDS. It hurt when he said that, but still I wanted him to say what was on his mind, to get it all out. I still don't know how to talk to him but I am beginning, after 13 years, to come to grips with this disease. I am now 30 years old and I feel that there's more to life than being HIV+. I've started going back to school and despite the mood swings, the side effects from the meds,and temporary memory lapses, life is beginning to look up. I don't have that guilt - well that much guilt cause there's still some, I just need him to go and get tested if he hasn't already, I'm afraid to ask and he just refuses to talk about it. But I've said enough for now so I pray that God bless you all, and as the Psalm says "I shall not die but live..."
G
still taking Zerit/Stocrin/3TC
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Hi G~
Welcome to the Forums. I'm glad you've reached out and posted, because you've had a difficult journey. I was quiet about my status with my family and friends initially, and now I know the benefits of speaking to those close to me. My husband never told me he was pos, he was my BF at the time, and I tested pos in '93 at age 24. People often ask why I went ahead and married him, stayed with him, continued to have him in my life. I loved him more than anything and I knew we needed each other. He died in '96.
Please know that telling your husband even after all this time, is a step in the right direction. I hope you'll continue to post in the threads here, esp the Dating thread. Its really not about dating at all anymore, its a "journal" where we all put our thoughts onto the screen. I think you'll get a lot of support here.
Hang in there.
~Cindy
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Hi G
Thanks for telling your story. It made me sad and think a lot. I just have a quick question, with all this lipo, why are you still on zerit? Isn't there a possibility to change? I know it is the #1 drug for causing such trouble. Maybe you can look into changing it with your doctor.
I wish you all the strength, and like Cin said, please stick around!
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Good Morning G and Welcome.
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Hi G
Thanks for telling your story. It made me sad and think a lot. I just have a quick question, with all this lipo, why are you still on zerit? Isn't there a possibility to change? I know it is the #1 drug for causing such trouble. Maybe you can look into changing it with your doctor.
I wish you all the strength, and like Cin said, please stick around!
Hi Dragonette
Where I live it is a free clinic, where the meds are given free of charge by the Government, therefore we really have no choice in what meds we get to take as long as they keep doing what they are supposed to do. I was told that the only reason a med is changed is if you become resistant. So for now I have no choice but to continue the zerit.
Thanks guys for welcoming me, it's so good to have others to share with and relate to.
Blessings
G
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Hello ladies. I guess it is my turn. I am choosing to not disclose my name here...not right now anyway. I am 29 and I was just diagnosed a couple months ago, though it feels like yesterday.
Someone said earlier in this thread that they did this to themselves. I feel I did the same thing. After leaving my first husband, I started dating a man in December of 1998. Though there was nothing serious about our relationship, we continued to see each other almost exclusively. We even moved in together after knowing each other only a few months.
In September of 1999, he and I were temporarily apart (something neither of us wanted or decided) when I started receiving calls and letters from my local health department. I was terrified. It was like I had a bounty on my head and I knew it couldn't be good that they were looking for me. I finally reach them and they tell me that I have had contact with someone who tested positive for HIV. Since before I left my first husband, I had been less than angelic so narrowing it down wasn't easy. I didn't try for long. I just wondered how I would tell this man I had grown to love. I knew I had to. He deserved to know. I just couldn't find the words.
A couple weeks later, he came to me and told me that we had to go to the health department together to be treated for another STD. He was so mad. He blamed me even though I was sure it wasn't me. I decided to hold off on telling him.
In October '99, I went for another test and to talk with the lady who treated us for the STD. She also does all the HIV counseling. As we were talking, she asking me if my guy and I were still together and how he was holding up. I assumed she meant the STD and started telling her he was still angry and that I wasn't sure why he blamed me. She looked confused and asked me how it could by my fault when I was negative. The light bulb went off for both of us at the same time. She realized that I didn't know until that moment who my contact was. I tried to get her to confirm but she wouldn't. I know her job prevented that. She really thought I knew already.
I went home to him and told him who I had been talking with and asked if he had anything to tell me. I guess he could tell from my expression that I knew. He started to cry. I asked him why he wouldn't tell me and told him how I had been trying to tell him for a month that I was a contact and I wasn't even positive. I asked him why he didn't think I should know. He told me I did deserve to know and that he was glad I figured it out because he couldn't bring himself to tell me and that was why he hadn't touched me in so long. I replayed the last few weeks in my mind. I was so wrapped up in figuring it out and trying to tell him, I didn't even realize that he had not made any sexual advances toward me...not even a kiss. After a long silence, he asked me if I wanted him to leave. I told him that I was not scared of him, that I loved him and that we could prevent transmission since we always used condoms anyway.
I guess over the years, I just became more complacent about it. I stopped getting tested before the year was out. Within a couple years we became lax with the condom use. I am not sure where my stupidity stemmed from. I guess part of me thought I was immune. I lost the fear of it to a dangerous point, even after watching him flirt with death, low cell counts and disability because of it. His health has greatly improved. He has been undetected for years now but has never been the type of person to talk about the things that affect him the most, including this.
This past August, I missed a period and took three home pregnancy tests, all positive. He was elated. He always wanted kids. We had even discussed it. The happiness was short lived. I started bleeding less than 3 days later. I kept hoping that it was nothing, that I would be able to go to term. The pregnancy clinic personell were not as hopeful. She commented on how light the urine pregnancy test was reading. She explained to me that they drew blood for HCG levels and would wait to see if they were up or down from the emergency room reading. I guess she assumed I was positive since I was referred to this clinic through my husband's specialist. When I told her I had not yet tested positive, she asked if I wanted to have the test done. She said they had plenty of blood drawn to order it so I agreed.
It took 4 days to get my results back since I my appointment was on a Thursday and they only open for a half day on Friday. The following Monday I made the call from work to get my HCG levels. Not the best idea to call from work as she not only told me that my HGC levels were down by more than 100 but that my HIV test was positive. I almost lost my mind. I barely heard her when she said that she was sending off for the Western Blot confirmation test. By the time of my follow appointment the confirmation was back. No doubt about it. I am positive.
August was a really hard month, so was the first part of September. Once again I felt like a wanted woman. The health department lady was calling me constantly. Appointments were set up with the clinic my husband goes to and tension over the miscarriage was weighing down on my marriage. I cried a lot. I worried a lot and we fought a lot because of it. He would tell me that the stress I put on myself would kill me if I didn't manage it. I would get defensive and yell at him that he didn't know how I felt.
Things are finally getting better. I am having more good days than bad lately. My husband and I stilll don't talk about it much. I think his way of dealing is to ignore it whenever he can. I can't do that. I have lived my life as though I was positive since that first contact from the health department. It stays on my mind.
Now that I have been diagnosed officially, I look back and think that I have actually been positive for around 4 years or more. That is when I started having health problems....swollen glands in my neck, a rash appearing on my face, arms and sun exposed areas. At the time it was at its worst, it was thought to be Lupus but it could not be clearly diagnosed. Now I wonder if I could still possiblity have Lupus or if it was just the affects of HIV settling into my body.
Anyway, I am really glad to be here. Since I have not disclosed to any family and only 4 of my negative friends know (the 4th was told today), I will probably look here for most of my support. I have always needed people to identify with me and my situations. I am sure from all that I have read, I will find that here.
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Confused, Im so glad you found these forums! You have been through alot. Sending you a cyber-hug! :)
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Good Morning to you all.
Am new in this forum and have been so encouraged and inspired by the posts I have been reading here for the last one week.
It has been about three weeks since I received my results and have since known that I am HIV+.
Part of my story : http://www.visajourney.com/forums/index.php?showtopic=91398
Since getting the news,I have been shocked and devastated because as many have said,this was the last thing I have ever thought would strike me..it never came close to my mind..BUT here I am..
Naturally I am a strong person with a very positive attitude towards all situations but this one is beating me up.Much as I try I find it hard to accept this reality yet I have to live with it..
I am so happy to have found this forum and knowing that many HIV+ people have are living healthy lives encourages me the more.
I have done a second test whose results I am yet to receive in a weeks time.My doctor explained that the first result was fully confirmed but somehow I wanted a second one for full reassurance.
During my next visit,I will be able to learn my CD/VL...all this terms are new and I do not fully know what they all mean or at what levels is it safe or dangerous.
Currently I feel superb except for the bouts of worry which is giving me a mild headache..an attribution to much thinking.
I have not been able to break the news to my family.Deep in me I feel a need and desire to talk to someone,to share my feelings and hope for the future but on the other hand I encounter a deep fear to do it. I am yet to find a social support group but will do so after my second results..
I hope to be able to make new buddies in this forum with whom I can identify,encourage and get a better focus for my future..I live in Phoenix Az...just in case there are members from this area..
Thanks to you all and have a great day
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Hi Sep~
Welcome to the Forums! I understand that you're overwhelmed right now, and that there is a lot for you to learn about how to best take care of yourself being HIV+. Just remember that keeping regular doctor's appointments, adhering to your meds (if and when they are prescribed) and reaching out in this Forum are all going to do wonders for you!
I beat myself up a lot and searched for answers when I was first diagnosed, and again later after my husband died. I was never satisfied because I couldn't find the answers. I finally accepted that I was HIV+, and that I owed it to myself to take good care of ME.
Have you clicked on "Lessons" here? Scroll to the top of this page, and its in tiny black print on the upper left, I believe. There is a ton of info there about everything, you could read for hours. Educate yourseld on CD4 (t-cell) results as well as your VL. That's a start, and just by virtue of being in the Forums, you'll gain invaluable knowledge. Knowledge really IS power, and you will do just fine.
I hope to see you in the threads!
~Cindy in Maryland
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Thanks Cindy,
You are right! Just by finding out that people are living happily for long lives gives me a different outlook and a better understanding.
I have decided to do my best into dealing with the reality.
Certainly the information on this site is soo valuable and am sure I will find much more ..There is so much for me to learn and I will look into the lessons area.
Good day..
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Hi Sept
I read your entire thread from that other forum, I am so sorry you have to deal with immigration issues as well, on the other ahnd I am so glad to hear your husband is supportive. You sound like a beautiful & strong person.
If you post on the living with forum, there are some members who dealt with visa/green card issues, I am not in the States, so I can't advise any with that. Also what you have been told, a good immigration lawyer.
My heart is with you. Please stick around and keep us updated
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Dragonette,
My gratitudes to you.
Each new day brings me joy and a reason to be greatful inspite of what has befallen me.
In my thoughts I tell myself that this is not the end of life but a beginning of a new era that I have to deal with...much as I try to be strong, of course there are waves of really bad moments when I cry my heart out...
I will be very much remain part of this family and will keep you posted.
Yes,the immigration thing is probably what brought the feeling that my end was coming but am believer of miracles...Anyhow,while hoping for the best,I will also prepare myself for any possibilites..
Thanks
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One more thing I haven't thought of yesterday, maybe the local Aids supprt organization (ASO) will be able to advise, at least here in Europe a good part of the people diagnosed are immigrants. It might be worth a shot and also they might no of someone else in your condition or of a good lawyer specializing in that. I think it's worth shooting in all directions.
Another thing, Canadian laws are not so harsh and maybe if your husband is American and has a profession which is required you could relocate there? Just a thought...
Good luck to you,
Hugs,
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Dragonette,
Thank you for your valuable thoughts.
That is a wonderful idea and I will definitely give it a trial.
After hooking up with ASO which am yet to,I might probably get someone who knows how to go about it...or at least some advice.Am waiting to get my second results as well as detailed info about the level of my infections and then I can go from there.
Have a good time.
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Ok, well where do I start... I must admit this is my FIRST time openly introducing myself as someone living with HIV. It's not easy for me.
I'm a 25 year old mother of three who was diagnosed just this past July. I stumbled upon my status when I became pregnant and along with all the other blood work an HIV test is part of the procedure. About two weeks after my test I was called into the doctors office to come in and discuss "some of my test results". I automatically got nervous but HIV never crossed my mind. I thought maybe I had anemia, diabetes or even a yeast infection or something (I've had al of these with pregnancy in the past). I was worried but not too worried. I began to worry when the doctor asked one of the nurses to join her in the room with me. At that point I knew something was seriously wrong. My diagnosis came as a complete shock. I still have no clue who infected me or when.
My first reaction was just complete shock. I don’t think I spoke to anyone that first day. Then I was numb for about a week. Then I went through a phase where I just cried and cried, doing nothing but thinking negativity. I was sent to a specialist whom would deal with my now high risk pregnancy. There I found out that my CD4 was 750 and my VL was 560. I guess those are good numbers to start with. I was immediately put on Trizivir 2x a day and assured that if I take the right steps there is a les then 2% chance of passing HIV to my child during birth. Because of my pregnancy my CD4 count continues to drop (which I’m told is normal and it should get better after I deliver) but my VL is undetectable, thanks to the meds.
I have not told ANYONE of my diagnosis yet. I know my family won’t handle it well and I fear the reaction of others. People have attached a horrible stigma to HIV. I think I’m still in a stage of denial in many ways. I’ve never really spoken about HIV and go out of my way to not think much about it. What makes it hard is that I don’t know anyone else with HIV. Even my pharmacy makes me order my meds days in advance because they don’t have them in stock. I was told “I’m the only person in my town on HIV meds”. That’s a very isolating feeling. I guess this is my first step to actually admitting my diagnosis to myself, and reaching out to get to know others who are living with HIV as well. Thanks all for taking time to read this. I look forward to meeting and learning from you all!!
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I was told “I’m the only person in my town on HIV meds”. That’s a very isolating feeling.
Hi grl,
They should not have said that to you and if they are not the only pharamcy in town how would they even know that. I live in a 190,000 people city in a country with lower HIV rates than the US, and there are about 600 patients in my hospital with HIV. So I find that hard to believe, unless you are living in Utah or some deeply religious place.
Anyway, welcome to the forums. I hope you will find them a source of comfort and help. In the past weeks there has been an increase in the women that write here, and I think they will continue to grow as more women feel that they can express themselves here. Wow, with 3 kids and 1 on the way you certainly have a lot on your plate. Must be awful hard work, but I wish I had kids myself... your numbers are good and I hope they continue in this way. I don't know how I was infected myself, so you are not alone in this awkward position.
All the best for now,
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I guess their statement goes to show the ignorance that is out there in this world. I live in a small town, but even with that being said I find it hard to believe that i'm the only person with HIV living here. I've learned to take the ignorant comments of people with a grain of salt. Especially now days.
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That's right... their problem, not yours. I never understand why people like that even work in the health field.
Take good care,
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Hi girls,
i am a newby to posting but I have been on and off viewing for awhile and i think it is time to get my story out. I have been hiding alone to long.
I had been sick for along time with strange things like my thighs going numb and weakness in my legs when walking. I was able to get through work but was exhausted all the time. If I spent a day out shopping etc. with my kids I was totally out of it for days after. I saw all kinda specialists who came up with all kinda crazy diagnosis's then one day my blood work came back showing my white blood cell count low. i was sent to a cancer specialist who with out telling me ran a HIV test. You guessed it I was HIV+ and since i had no risk factors no other doctor including a infectious disease doctor ever even mentioned having a HIV test. Needless to say I was not only surprised but insistant that there was an error. After he argued that the test was correct and that maybe my husband of 10 years was cheating on me he sent me right over to a new infectious disease doctor who specialized in HIV.
All the way over in the car all i keep thinking was if i just turned the wheel it would be over and know one including my two kids would ever know. The only thing that saved me that day was the fact that my kids had just lost their father(my X-husband) to ALS the year before and I just couldn't do that to them. They were still grieving the loss of their father how could i take their mother.
The doctor wasn't in when i arrived but he had the most wonderful assistant who stayed with me for hours just talking me down. When the Dr. arrived he arranged the appoints for myself and my husband. Then I had to go home to tell my husband who is the love of my life. It was the hardest thing I ever had to do. At first he was just in shock and then he got scared that maybe he had contracted it before we were married and gave it to me. I knew he would never cheat on me so that was never an issue.
Well when the test came back I was still positive but he was negative. How could that be we never used protection. The only thing anyone has been able to come up with is when we were on vacation out of the country I got sick with food poisoning and the hotel doctor gave me a shot. Or it was at the hospital when i had an operation, who knows i will never know how.
The good thing is they finally found out what was wrong with me. My t cells were 68 and the doctor explained that if they hadn't found it then i would have ended up in the hospital by years end and may not have survived.
This all happened Jan 06 and now my t cells are up to 250 and except for the side effects of the meds like the inflated belly etc.I am doing much better. I did have the courage to tell my kids (my son was 22 and my daughter 17) I also told my best friend and my mother. All of which have been very understanding. I have still to this day never met anyone who is positive. I was lucky that my doctor put me in a study right away so i haven't even had to go to the pharmacy for my meds. But the study is ending now and I'm going to have to go to the pharmacy and I know I should feel lucky that I have insurance and access to good meds but I am really having a hard time with it.
My husband and I are still together. We rarely have sex now I don't know if it is because I feel scared of giving it to him or if it is him. I wish I was as strong as some of you girls who are just right out there with it. I feel as though I should contribute in some way but how can I when I live in fear of anyone knowing.
Reading all your story's has been really been uplifting and helps put things into prospective.
Anyone from South Jersey?
Thanks for being there,
Roses
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Welcome to the forums Roses! Thanks for sharing. That's a huge step.
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Well this is the 2nd time I've read this forum, but the first time i couldn't share my story; but anyways hear goes.
My name is Paulette, I'm 37 yrs old and i was dx: on 11/7/2003 I'll never forget that day, i thought i would be dead within months, i didn't know what to expect, because i never knew any women or men that were poz, so i thought. At that time. Because I've been married since i was 18 never had a lot of sexual partners, . my first marriage lasted 5yrs, my second lasted 7 years, and after him i was about to give up on men all together, So tired of giving my heart only to have it broke again, well the good thing is that i have three beautiful daughters from the 1st and 2nd marriage. life was good stayed single for about a yr, dated but no sex. well in April of 2001 i meet the most beautiful man in the world, he was raising two kids on his own because his wife of 9 yrs had died in Jan 2001. so we started dating and yes we had sex but we were safe with condoms, all the way til we were married on July 13, 2001. i know things went fast with this one, and things were great we had five kids together and he had a good job, and sold drugs on the side i found this one out after we were married, i was angry, but hell i loved this man and we had an agreement as long as he didn't bring them in to our house i was fine with it, but that shortly change and then my meth addiction begin. we were very sexually active , some time we would make love four or five times a day, in late 2002 i got really sick, swollen lymph nodes in my neck and groin, went to the er and told them the truth about my drug use and they said i had a respiratory infection and a kidney infection;( probally because of smoking meth) they sent me home with meds and it took about 2 months to get better. well then 2-13-2003 my house had been raided by the DEA, Sheriff's, Police, DFACs, and my husband and i were taking to jail for poss of meth and pot. we made bail but by that time my three daughters 2 went to my mom's and the 3rd went to live with her dad, his kids i went to her mom's and the other to his first wife's mother/father. well after that my mom and his first wife's mom had meet at dfacs to sign papers for the kids and it came out that his first wife had died from PCP in 1/2001, my mom was provided a copy of her death cert. and when she showed me i was in disbelief, for why would he lie about how is first wife die. so i confronted him and he had to admit that she was poz for the last 9 yrs of her life it was there in black in white , he couldn't deny it any more. I remember he turned ghostly white when i asked him about his status that cold day in Feb2003, he assured me that his 1st wife and him had been safe since she found out three months into her pregnancy with their son, who was born neg and is till neg to this day. and that he had been tested in 1/2001 when she died and he was neg. i was so stupid to believe him so we stayed together and the drugs got worse because now we could do them any time we wanted for the kids had been taking away from us , depression set in i would beg him for us to get tested and he refused and we would argue about it, my mom and my ex wouldn't let me see my kids because i wouldn't get tested, not because i didn't want but by this time my husband became so controlling and wouldn't let me out of his sight and kept me high most of the time so i wouldn't think about it. well he went to jail for a probation violation and at last i was free to go get tested but that was the last thing on my mind i was so far into my addiction that was the only thing i wanted. well in 10/29/2003 i was busted again meth and was sent to the local jail , my mom had me busted because she was worried about (I love her for doing that today; back them i could have killed her; but she was only acting out of love.) well when the jail asked me who my spouse was i gave his name and then they put me in a special pod, i didn't know why until they had come to do blood work and asked me sign a form to have an hiv test done.( you see they already knew mu husband status but couldn't tell me. they knew my status before i did) well about a week later they came and took me to medical and the jail doctor told me you have hiv and my vl- was 58,000 and my CD4 was @511 and he wanted to run more test. you can imagine i was so angry at my husband and all i think about was death, i confronted him by mail seeing that he was in jail in another county, well he wrote back that he had just found out a couple of months ago but didn't know how to tell me, which come to find out that was bullshit, he knew his status before his first wife had died and hear say says he known since 1993. i don't know who gave it to who in their marriage but i sure as hell knew who gave it to who in our marriage. my last test was 5-2001 and i was neg that's 2 months before we were married and like i said we used condoms up until our wedding night. and i remember showing him my clean bill of health and he said because of his wife's death that we got completely checked out and was clean as well (my bad; should have demanded to see the paper's but i was in love)
Any i stayed with him til 7/2004 when he went to jail again and then i ended in the hospital in ICU with renal failure. the last time i used any street drugs was 7/8/2004, the doctor told me my hiv wouldn't kill me that my drug use would, so i prayed to God to remove the cravings and he did luckie for me. in Nov of 2004 i filed criminal charges against my now -ex-husband and won they only consider it reckless conduct to knowingly infecting someone with HIV , he was sentenced 10yrs do 5, and now only after serving two yrs is up for parole; this man has done this to me and is a con-sumate liar and a sex fiend and will only continue to this again. come to find out he expose his virus to two other women before me, but they are afraid to get tested or the bring charges up one him.( which is sad, i guess if they don't know they don't have it in their mind.) And just so you know i have gotten my girls back and this Jan 3rd i will be celebrating my 2nd anniversary with my forth husband who is neg and yes he know my status, but chooses to look beyond my disease, i guess you can say that I'm luckie to have found such a man to love me for me. my two sets of labs have been grreat Undetectable and 843 ,and now the same except my CD4 is up to 880. I'm very open about my status, and i speak at women's substance abuse programs in my area , the last i spoke was on Thurs and my story prompted 6 out of 20 to get tested to know their status. I would have like to have seen more but 6 out of 20 isn't bad. i want to say hey and thanks for being here for me to share. Good luck to you all and i look forward to reading your post.
I hope this finds everyone of you courageous , beautiful, Strong women in the best of health and happiness.
I'll keep each of you in my prayers.
May God bless each and every one and forever keep you in his eternal love.
Paulette
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wow, I am kind of breathless right now...
But very, very glad to find a happy ending.
Thanks for all your wishes Paulette i certainly wish the same for you. Glad to know you are doing so well with the new & recovered family and your health!
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Paulette~~ that is an amazing story!!
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Thought I would bump this back up since we have had some new ladies join us since Melia started this thread...
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Thanks Queen..! You ladies have a wonderful weekend!!!! i will talk monday!
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I thought I would post an article done about me from another site to help ya'll know me a little better.
So, what’s a girl do with her Barbie® doll? For Wendy she couldn’t find much to do with her first one.
“After I cut her hair, I didn’t really know what to do with her.” Being a tomboy, Wendy preferred
climbing trees, riding a bicycle and digging dirt. She admits that she was a shy, meek child who had very
few friends growing up. Born in Fort Bragg, North Carolina, Wendy lived on various military bases with
her parents. Her father was an officer in the Army and his travels took Wendy and her mom to Hawaii,
Georgia and to the Dallas/Forth Worth where she has been living since 1981.
As a teenager, Wendy and her friends frequented a Denny’s Restaurant. There was another group who
hung out there as well, and this is where Wendy met her future husband Michael. Their tables were near
one another and it wasn’t too long before Wendy and Michael began dating and eventually took to living
together. It made sense to make it official since they had a child together and were in the habit of
calling each other husband and wife. So with a little coaxing from Wendy’s father they were married
by a Justice of the Peace in 1993. “There was no honeymoon. We hardly had two nickels to rub
together.”
Before Wendy and Michael married, Wendy gave birth to their son Justin on January 29, 1993. Justin
was Wendy’s second child. She had another son, Aaron, born September 11, 1989, from an earlier
relationship that lasted briefly when she was 16 years old. “Aaron grew up calling Michael, ‘Daddy.’”
Today, Aaron lives on his own.
At the age of 20 and pregnant with Justin, Wendy learned that she was HIV-positive. Back then,
Dallas county hospitals were some of the few that tested pregnant women for HIV. Ironically, it was
fortunate for her that they did mandatory testing of pregnant women, otherwise chances are Wendy
would not be alive to talk about her life today. Because of Wendy’s known positive status,
Michael had been tested and it was found that he too was HIV-positive. “Michael was bisexual. I
knew he was when we met. That never bothered me. When I am in a relationship even if I am
attracted to other people, I am fully committed to the person I am with. I assumed the same would be true
for whom-ever I married”
Wendy never imagined that Michael could be HIV-positive. “It never occurred to me. It wasn’t something that
touched my life. It wasn’t a reality to me.” Wendy says that many of Michael’s friends were
gay and some of them were positive. “Likely, he knew he was HIV-positive when he met me.
But he never admitted that to me.” Wendy never questioned him, and neither did she blame him for
infecting her. Her thoughts about her infection, “I loved him. What was done could not be undone.”
As far as Wendy knew, Michael was faithful to her throughout the first four years of their marriage.
She says he began seeing other men and even introduced her to one of them. “I did not think that
any other man would want me. I was HIV-positive and had two children. I was a housewife. The kids
and my marriage were my life.”
Unfortunately, when Wendy gave birth to Justin, the doctors didn’t offer her any treatment to keep
Justin free from HIV. Not much was known about the virus back then, and preventing transmission
from mother to child was a feat back in the early days of the pandemic. Not only was that a barrier
to keeping Justin safe from HIV, they also did not perform Caesarian sections. “He was infected,”
Wendy says. She describes Justin as a “sunny, loving, beautiful child.” Because of HIV, Justin was
smaller than the average healthy child. His growth was stunted and his learning abilities were not up to
par when compared to healthy children his age. “He needed more help than Aaron did.” Justin needed
speech therapy and Wendy was told that his heart was abnormally large, which the doctors said was
common in HIV-positive children.
Justin remained fairly healthy for the first three years of his life. His t-cells were high, but during his third
year he began to fall ill. It was found that Justin had an infection around his heart, “They started
giving him gamma globulin treatments to help him, but it would only work for about a week. Then he
would get listless and pale again.” Justin’s heart was beating abnormally and the doctors had to treat
him with heart medications. “We practically lived in Children’s Medical Center for the last three or four
months of his life.”
Sometime in March of 1997, tiny Justin had had a heart attack. His last words where, “Help me momma. I’m stuck in the mud.” CPR was performed on him and shortly thereafter he was placed in ICU.
Wendy sat in that room with him for a week with hopes that he “be taken off the machines that were
keeping him alive.” Sadly, Justin lost his battle with HIV and died on April 4, 1997. He was only four
years old. An autopsy had been performed and it was found that he had an infection between the
pericardium and his heart which destroyed his heart muscle.
After losing her youngest son, Wendy’s battle continued. She turned her focus onto her husband’s
well-being. In 1998, Michael had been experiencing chronic lung infections. During a stay in the
hospital he was prescribed 8 Bactrim a day for 2 weeks. “Taking that many Bactrim killed most of
his liver function.” Wendy says, “We trusted the doctors with everything back then.”
In 1999, Michael suffered a stroke and lost most of his function on the right side of his body and then
became incontinent. “He went on disability and I took care of him at home,” which comes as no
surprise since Wendy had graduated as a Medical Assistant back in 1990. And although she never
actually worked in the field, she received hands on experience taking care of Michael until the day
he died. Michael passed away at the age of 30 in 2001. Now it was time for Wendy to focus on
herself. “I really didn’t cope with my diagnosis at first. I was ashamed and scared. I didn’t tell anyone.”
And she kept this secret for nearly a year until her brother found some paperwork mentioning HIV. He
turned to her parents in fear. In intervention style, Wendy’s family confronted her about being HIVpositive.
“After that, everyone important to me knew.” Wendy was relieved that her family knew.
“It was difficult hiding my status. We where living with my mother. I don’t like lying about anything.
I never have.”
She believes her CD4 count was in the 400’s when she was diagnosed. “It’s difficult for me to
remember the details back then because I was in denial.” She does not recall a viral load from back
then, most likely due to the fact that there wasn’t any test to measure for a viral load. She says,
“Hell, back then I didn’t even know what those numbers meant and that it was important to keep
track of them.”
Wendy experienced shingles twice and had pneumonia three or four times over the years,
as well as wasting syndrome. “For a while I had trouble walking. It was never diagnosed why,
but I would frequently fall because my legs would suddenly be paralyzed.” She also suffered with
dementia and cryptosporidium along with irritable bowel syndrome. She says, “Most of my problems
were years ago when I was underweight.”
Not too very long ago, Wendy decided to take an unsupervised drug holiday, which didn’t prove to a
be a wise decision. Her last CD4 count was 21 and her viral load was over 750,000. She’s been back
on meds for nearly a month now and she’s seen her CD4’s rise to 77 and is undetectable. Currently
she is taking Norvir, Truvada and Reyataz. “I’ve had problems with vomiting with this combo and
the Reyataz makes my eyes yellow sometimes.”
Fortunately, according to her doctors she has no signs of liver damage. “But, I haven’t decided
if I trust them yet.” Her lowest CD4 count ever, was 3, and the highest was about 800. “On
meds, I usually have no trouble maintaining an undetectable viral load.”
When talking about stigma and being discriminated against because of her status, she states, “When
you are around people who don’t know your status and the subject of HIV comes up, you can hear
some pretty stupid things.” Wendy never felt discriminated against because of HIV rather she
was treated differently because she was a woman.
She received HIV services from a clinic in Dallas where she was one of the few women who went
there for care and treatment. She says that the only ASO’s available in her area where run by gay
services and the majority of clients at the clinic where white gay men. “Many men embraced me,
but some treated me rudely or even with hostility.”
Wendy doesn’t count on a cure for HIV, but says she has hope. “Because HIV mutates, I don’t know
if they will ever be able to cure everyone.” But still she wishes for one.
Wendy loves reading thrillers, suspense and horror books. Dean Koontz is her favorite writer. She
enjoys Pop music, Rock, old Country and some Disco. “I’m fairly eclectic, but I really hate Rap.”
She claims to be a picky eater and has some food phobias. “I think I could live on chicken and rice.
My favorite food is Chinese. Moo goo gai pan in particular.” Anything artistic such as painting, drawing and
photography are things that Wendy is taken in by. She toyed with starting her own HIV website. “I
made up several free sites and eventually bought www.winiroo.com.” However, she never did much
with the site because it was too time consuming and expensive. “But the site does link to my free pages.
” Although she hasn’t edited the free pages in a while, and some of the links are dead, she believes there may be lots of useful HIV links available.
I asked Wendy if she were given the chance to turn back time, would she do it. She said, “I’d be
tempted to but I don’t think I would. Changing things in my past would change who I am today.
The struggles and heartaches I’ve endured have made me who I am. I am happy with who I am.”
The most important thing in Wendy’s life is, “living happy and feeling secure.” Her biggest fan is her
boyfriend Billy. “He adores me.” They met each other through a heterosexual HIV social group in
2003. “He is my best friend and the nicest most caring man I’ve ever met.”
Wendy advises the newly diagnosed to, “Try to stay in the moment. Don’t live in the past or the future.
It’s tough to do, but every time you get there, you get to truly live. Be optimistic. Take charge of your
medical care, be assertive and get informed in your treatment. Doctors can and do make mistakes.”
She goes on to say, “Celebrate your life. Allow yourself to be silly sometimes, it will lengthen your
years, and brighten your life. Take care of your body. Eat right, get plenty of rest and eliminate as
much stress and drama from your life as possible.”
And last but not least, “If you have been given an expiration date that doesn’t mean you have to
keep it. An AIDS diagnosis is no longer a death sentence.”
The message she has for the HIV-negative world is, “I am the face of AIDS. I am your mother, sister,
daughter and the girl next door. I am not dying, I am living and I will not be ashamed.”
Today, Wendy, 35, does secretarial work for an insurance agency. But what stands out most about
Wendy’s character is that every Friday, in spite of her own illness, she cares for an elderly gentleman
who is mentally ill. This remarkable, nurturing, caring and compassionate woman, who has courage
and dignity in the highest of realms, certainly beats that of Barbie® on any given day. Truly, Wendy is
an inspiration, and someone to be looked up to. So Mattel®, where’s our Wendy doll?
Patricia Steen
Senior Writer
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((((((((((WENDY))))))))))))
Where is that Wendy doll?
Thank you for sharing your story.
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LOL
she made me sound more like a saint than I am.
I'm not rotten but I'm certainly no saint.
She is a sweet woman. I think she did a good job of turning some questions into a story.
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Wow, Wendy, I am teary-eyed and smiling all at the same time, after reading your story. It stirred up a lot of memories for me, our paths have a lot of similarities.
Thank you for sharing with us.
~ Cindy
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Wendy
That is a wonderful story. I will buy 10 of you. Just let me know how much and where I can find them. xoxo Sunseeker
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*BUMP*
I wanted to bump this thread since there are a lot of new ladies here in the threads. Most of us from the Dating Threads are in here.
This thread tells how most of us got infected, how we are dealing with it, whom we have shared with outside of this Forum, etc.
I am Reply #22. :)
~ Cindy in Maryland
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dearest melia, i hope this not inappropriate but i use as an excuse 1st timer on the forum as well possibly lost. i would claim synchronicity but it may be slight narcissism both having mel in our name :) I'm not sure if it was for women only and apologize if so, i just wanted to tell you that you are a braver woman than i am man and feel ridiculously humbled (i know the ridiculous thing, I'm still a work in progress) with love and respect mel
PS the Greece thing also caught my eye as there is a lady i respect who teaches Theosophy and with my add brain i think ageless wisdom of the masters.......psps and teacher please forgive my grammar and punctuation ::) okay i know i should have been paying attention where's spell check? oh i see it best wishes in all your pursuits
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Rockonwood, yes, this particular part of the forum is for ladies only. Please don't post here again. Thanks. :)
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Hello, my story is a little different then the rest of the amazing stories I've read here. I hope you don't mind me posting here. I don't have HIV. I have a beautiful 2 year old that is positive. Here is our story.
I've had a lot of problems with endometriosis and ovarian cysts. I always wanted children but it just wasn't happening :'(. I did IVF and got pregnant twice but lost them. After the last loss there were complications and I had an emergency hysterectomy. Once I recovered my husband and I agreed we wanted to adopt. We never specifically looked to adopt a special needs child, it was just meant to be.
In August 2006 I got an email from the adoption agency saying we had jumped through all the right hoops and could begin the search for a child. I was so excited to be starting but didn't expect things to happen for awhile. I planned to work part time once we had a child but was still under contract full time as a travel nurse till November (we ended up moving my niece in to help till my contract ended).
Well September 8, 2006 I got a call from the adoption agency. There was a premature baby boy in NICU (born August 30, due date was November 22). He was coming in through the agencies "pregnancy services" program, but unlike the normal procedure of birth mother choosing the adoptive mother, this birthmother refused to look at information and make a choice. That left it up to the agency to decide. Besides prematurity and low birth weight 3# 3.5 oz (which can cause many problems) it was known that the birthmother, had no prenatal care, did drugs, and was Hep C and HIV+. There had been an initial test done which was negative for HIV, Hep C, and drugs when the baby was born. The agency didn't know anything more at that time, but asked if I would consider adopting this child. They said that because I am a nurse (ER then OR never NICU or ID) I was their first choice. My husband's initial response was no. I explained to him that mother to child transmition doesn't always happen and the fact that the initial test was negative was a very good sign that the child would most likely be negative. The HIV was not his only concern, because he felt that if I loved a child then lost it I wouldn't be able to handle it and unfortunately not all babies make it out of NICU. After talking about it we agreed to concider adopting this baby but asked for more information on his medical condition before starting the adoption process. In my heart I knew this was our son but, I also knew it would take longer for my husband to realize it ;).
The next week was filled with road blocks. The adoption agency wasn't able to give me any more information. They said that because the baby wasn't ready for discharge the Hospital was dragging their feet on releasing information to non family members. I was finally able to talk to the Nurse Manager of the NICU. Unfortunately that didn't help. She wouldn't give me any information because I wasn't a relative. I explained to her that I thought we would be adopting, but needed to know if his condition was one that we could handle. She finally agreed to let us come Saturday with someone from the adoption agency to find out more about the baby.
Saturday September 16 we went to the hospital and met his nurse. Mary said she would guide us after we scrubbed. We thought she was taking us to talk with the neonatologist, but instead she took us to an incubator. Inside was this tiny baby, with huge soulfull eyes. One look and that was it. My husband looked at the case worker from the adoption agency and said "start the paperwork, that's our son" 8). We named him Lucas.
Lucas was so frail that first day we could only touch him by reaching through small openings in the incubator. He was being feed through a tube. He weighed 3# 3.5 oz the same as his birthweight 17 days before. We told him he had a mom and dad who loved him and he had to get stronger so we could take him home. My husband has an odd sense of humor and called the incubator his "cooker". Before we left he told Lucas he wasn't done yet and needed to stay in his cooker awhile longer to get stronger and we would be back to see him tomorrow. The next day Lucas' feeding tube was gone and we were able to bath him and teach him to drink a bottle. It's hard to believe what a struggle it was to get him to drink an ounce.
I wish I could say it was smooth sailing from there, but it took another month before we could take Lucas home. We came close to losing him twice :'(. First due to anemia, then aspiration pneumonia. Before they transfussed him for the anemia they tested him again for HIV & HEP C (he was just over 1 month old). Once again he tested negative. I remember when he was so critical with the pneumonia one of the nurses asking how we could be adopting him. She wasn't being cruel, she just said she wouldn't have the strength/courage to adopt a baby who might be pos. I said he had tested negative twice and we just prayed it would stay that way. If he tested pos. we would just deal with it like we got him through those critical illnesses while in the NICU.
The first week he was home he did fantastic and gained 1#. His pediatrician is very nice and very honest. She said she had no other pos children. She knew we were told he didn't need retested for awhile but she didn't want to take any chances. She knew a PID and wanted him to see Lucas. We went to see him and he said he really didn't think Lucas was pos. Lucas had no enlarged nodes, spleen or liver and was gaining weight like a champ, plus having tested neg twice. However, since we had made the trip, he would run the tests. We all got a nasty suprise when Lucas' VL came back at ~100,000. We returned for a retest ~ 2 weeks later. At that time he had moderately enlarged spleen, liver and lymph nodes. His VL was >500,000. We started him on his cocktail and he soon became undetectable and fortunately his CD4 has always been "normal". The enlargements all went away. He has been undetectable for ~ 18 months now 8). He had his final Hep C test and that is still negative. :)
Besides delays from prematurity and HIV, Lucas has mild Cerebral Palsy. When he started crawling (10.5 months) he crawled for 2 days, then went to the elbow on the left side and would drag the left leg. He gets Early Intervention, Speech Therapy, Occupational Therapy, & Physical Therapy. His progress is nothing short of a miracle in my opinion and yes I know I'm biased. He not only walks, but climbs and does the stairs and he just turned 2 August 30th. He loves playing with puzzles, playdoh, books & crayons.
Well that's about it. I'll always be thankful to Mary, Lucas' nurse in the NICU that first day. I think she knew he needed parents, and that if we saw him we would fall in love at first site. If she hadn't taken us to Lucas before the Doctor, we may have let fear keep us away and what a tragedy that would have been. I can't imagine my life without Lucas. Being his mom is such a blessing. That doesn't mean he's always perfect, he's 2 after all, but it's never dull ;D. Well thanks for reading :).
Lucas' mom
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Hey Lucas' Mom, that was a great story. It made my day. I'm glad you're here and I look forward to hearing more from you.
Luv,
Betty
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Yes, it certainly was. Being HIV positive and adopted I can certainly relate in many ways. He is such a blessed child to have the opportunity to live a wonderful life. I hope you post here often! I would love to see more pictures of Lucas. Do you have a blog or myspace account? I have a 4 year old and a 2 year old (both neg).
Jen
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I'm sorry I don't have a blog or myspace page. I barely have time for this. I love showing off my beautiful boy, so you may regret asking for pictures. I'd love to see your little ones too.
Lucas' mom
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