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Author Topic: By way of introduction  (Read 33694 times)

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Offline confusedme

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  • Posts: 74
  • wishing away reality
Re: By way of introduction
« Reply #50 on: October 12, 2007, 04:22:06 PM »
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.
08/13/07 - Diagnosis confirmed
08/30/07 - T-cells 400, VL 6,500 (Baseline)
11/30/07 - T-cells 428, VL 9,950

Offline HealthyMomma

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  • Posts: 128
Re: By way of introduction
« Reply #51 on: October 13, 2007, 10:11:07 AM »
Confused, Im so glad you found these forums! You have been through alot. Sending you a cyber-hug!  :)

Offline sept2007

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  • Posts: 6
Re: By way of introduction
« Reply #52 on: October 20, 2007, 01:20:43 PM »
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
Second test results confirmed +ve on 30 Oct
HIV I
VL 2890    CD 630   Advised to take multivitamins

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: By way of introduction
« Reply #53 on: October 20, 2007, 01:36:24 PM »
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
« Last Edit: October 20, 2007, 01:39:46 PM by MOONLIGHT1114 »
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline sept2007

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  • Posts: 6
Re: By way of introduction
« Reply #54 on: October 20, 2007, 01:51:51 PM »
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..
Second test results confirmed +ve on 30 Oct
HIV I
VL 2890    CD 630   Advised to take multivitamins

Offline Dragonette

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  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: By way of introduction
« Reply #55 on: October 20, 2007, 03:18:50 PM »
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
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline sept2007

  • Member
  • Posts: 6
Re: By way of introduction
« Reply #56 on: October 20, 2007, 04:23:44 PM »
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
Second test results confirmed +ve on 30 Oct
HIV I
VL 2890    CD 630   Advised to take multivitamins

Offline Dragonette

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    • NotPerfectAtAll
Re: By way of introduction
« Reply #57 on: October 21, 2007, 05:47:28 AM »
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,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline sept2007

  • Member
  • Posts: 6
Re: By way of introduction
« Reply #58 on: October 21, 2007, 08:57:07 AM »
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.
Second test results confirmed +ve on 30 Oct
HIV I
VL 2890    CD 630   Advised to take multivitamins

Offline Nygurl225

  • Member
  • Posts: 63
Re: By way of introduction
« Reply #59 on: October 21, 2007, 09:47:36 AM »


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!!

Offline Dragonette

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  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: By way of introduction
« Reply #60 on: October 21, 2007, 10:46:25 AM »
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,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Nygurl225

  • Member
  • Posts: 63
Re: By way of introduction
« Reply #61 on: October 21, 2007, 11:24:36 AM »
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.

Offline Dragonette

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  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: By way of introduction
« Reply #62 on: October 21, 2007, 12:35:48 PM »
That's right... their problem, not yours. I never understand why people like that even work in the health field.

Take good care,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Roses

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  • Posts: 2
Re: By way of introduction
« Reply #63 on: October 21, 2007, 01:18:01 PM »
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



 




Offline BT65

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Re: By way of introduction
« Reply #64 on: October 23, 2007, 05:59:31 AM »
Welcome to the forums Roses!  Thanks for sharing.  That's a huge step.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Paulette

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  • Posts: 112
Re: By way of introduction
« Reply #65 on: October 27, 2007, 11:46:24 AM »
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
I have HIV; it doesn't me;)

Offline Dragonette

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Re: By way of introduction
« Reply #66 on: October 27, 2007, 01:23:52 PM »
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!
« Last Edit: October 27, 2007, 01:26:34 PM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Nygurl225

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Re: By way of introduction
« Reply #67 on: October 29, 2007, 12:24:07 AM »
Paulette~~ that is an amazing story!!

Offline Queen Tokelove

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Re: By way of introduction
« Reply #68 on: November 16, 2007, 03:49:36 PM »
Thought I would bump this back up since we have had some new ladies join us since Melia started this thread...
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline wishful

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Re: By way of introduction
« Reply #69 on: November 16, 2007, 04:33:06 PM »
Thanks Queen..! You ladies have a wonderful weekend!!!! i will talk monday!
Live life to the fullest...

Offline Winiroo

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Re: By way of introduction
« Reply #70 on: November 16, 2007, 06:08:15 PM »
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

Offline Dragonette

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Re: By way of introduction
« Reply #71 on: November 17, 2007, 04:51:14 AM »
((((((((((WENDY))))))))))))

Where is that Wendy doll?

Thank you for sharing your story.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Winiroo

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Re: By way of introduction
« Reply #72 on: November 17, 2007, 12:03:34 PM »
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.

Offline MOONLIGHT1114

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Re: By way of introduction
« Reply #73 on: November 25, 2007, 01:33:52 AM »
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
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline sunseeker

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Re: By way of introduction
« Reply #74 on: November 25, 2007, 11:39:52 PM »
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

Offline MOONLIGHT1114

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Re: By way of introduction
« Reply #75 on: July 19, 2008, 04:25:02 PM »
*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
« Last Edit: July 19, 2008, 04:27:54 PM by MOONLIGHT1114 »
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline rockonwood

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Re: By way of introduction
« Reply #76 on: August 27, 2008, 09:16:16 AM »
       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

Offline BT65

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Re: By way of introduction
« Reply #77 on: August 27, 2008, 09:18:01 AM »
Rockonwood, yes, this particular part of the forum is for ladies only.  Please don't post here again.  Thanks. :)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline #1 mom

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Re: By way of introduction
« Reply #78 on: September 05, 2008, 05:21:21 AM »
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
Amy

Offline BT65

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Re: By way of introduction
« Reply #79 on: September 05, 2008, 10:18:09 AM »
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
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline jennynyc7

  • Member
  • Posts: 146
Re: By way of introduction
« Reply #80 on: September 05, 2008, 03:03:47 PM »
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
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline #1 mom

  • Member
  • Posts: 114
Re: By way of introduction
« Reply #81 on: September 16, 2008, 01:43:55 AM »
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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« Last Edit: September 17, 2008, 02:45:55 AM by #1 mom »
Amy

 


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