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Main Forums => Living With HIV => Topic started by: CalvinC on June 16, 2006, 02:29:07 pm

Title: Your reactions to testing poz: the first three weeks
Post by: CalvinC on June 16, 2006, 02:29:07 pm
Hi

I have just finished my first three weeks as newly diagnosed. What a rollercoaster. Today is good.

I am wondering about how other people took the news, how they shared it, and most of all, what they FELT.

For example, (for those of you who don't know my story, posted elsewhere on aidsmed), my GP told me in his office. I took it well, and was in a bit of a daze. I had a lunch date with a close friend / colleague, whom I told, as I was so distraught. Then I went to a friend's house and burst out crying. But I kept my life going as it was: I kept working as normal, working out at the gym, seeing people, meeting obligations, and so on. The hardest part was that a few days later, I told the guy I was dating (as I couldn't reach him sooner), and he has as much abandoned me. I wept, and wept, for the loss of both him, and less so, it seemed, for my health. I am doing my best to come to terms with it all, but losing him was quite the blow. I am working on my anger and disappointment, and hope to move soon to forgiveness.

But each day is like a rollercoaster: one minute it's ordinary, another it's despressing, another I'm thinking about the lost guy, then about how I've lost myself, then I'm okay and happy and looking forward to the future, then ...then....then....You get the idea.

When do I get to get "normal"? How long did it take you to get a semblance of a more routine emotional life?

cal
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Blixer on June 16, 2006, 03:45:45 pm
Cal,
I just passed the 5 month point of my diagnosis.  Like you, I was told by my GP in her office.  After being told on the phone the Friday before that the test was negative, I got a call the following Monday asking me to come to her office as soon as I could after work.  I knew something was up and I actually kind of had it figured out.  Like you, I took the news pretty good initially.  I cried a bit on the drive back home but did pretty good. I called a firend who had been diagnosed almost exaclty one year earlier and we talked for a while.  Then I called my best friend and told him.  But that night, just as I was about to drift off to sleep, panic hit. I was up, pacing the house and in tears, feeling so abandoned and lonely.  That night I logged onto The Body site and began doing some reading.  That led me to this site.  Over the next weeks it was very much a roller coaster. It was always there in the front of my mind. I didn't feel like I could tell anyone (I did reveal to everyone I had been with in the past six months).  Some of them I had considered friends and several of them expressed initial support, but then just kind of faded away.  So I can understand a bit of what you are saying with the guy you are dating.  Give him some time. He may come around.  And if he doesn't... then move on. You have your life to live.

Over the next few months I had a really bad bout with anxiety that lasted a couple of weeks.  Then I got through that.  Basically, at 5 months I don't think about it nearly as often. I've opened up to the people who are most important to me and told them.  It took me two months to get to that point though.  And they have been supportive.

Time will help, and I hope you are getting in to see a good Infectious Disease Doctor.  The Aids Services Organizations (ASO) can also help direct you to resources if you need/want anything like a support group or counseling.

It is a roller coaster, but I'm finding the ups and downs begin to smooth out some and I'm told that eventually it will be smooth sailing again.  Not that you ever forget about it, but that you adapt and move on.

Title: Re: Your reactions to testing poz: the first three weeks
Post by: MoltenStorm on June 16, 2006, 04:09:53 pm
Hi Cal,

I just passed my 2nd month mark after finding out I was positive. I had a similar situation to yours in that I was newly dating a guy when I found out. He stayed with me during the beginning and cried with me (the first 3 days straight). It wasn't until about a month later that he decided he couldn't handle dating someone with HIV. By 3 weeks, I was back to a normal emotional state with only a few moments of fear or sadness popping up every now and then. During those three weeks, I would cry periodically. Most of the time, my emotions were stable.

I went out and purchased a few books on living with HIV, and I began to read them. I also signed up on this forum shortly after. I focused on getting the ball rolling as far as meeting my case manager, doctor, etc. Life got back to some resemblance of "normal" rather quickly.

It wasn't until I got my first test results that my emotions took another plunge. They weren't as good as I'd hoped, and it really brought the situation home for me that I have HIV.

2 months out now: My emotions are back to normal. Life is continuing on. I'm getting back into things, and I'm taking it day by day still.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: blondbeauty on June 16, 2006, 04:39:25 pm
Panic. Thats the word. I wasn´t sad I was scared to death. I felt sick, weak and about to die the following minute. The next day after my diagnosis I had to flight Caracas (very depressing city and hotel). Imagine the flight...I was like a zombi.
Now its 8 months from that and I feel completely different. I feel stronger than ever before, I feel in control of my life (its just a silly feeling but a good one), I feel special, I feel transgenic, I feel as if I was a scientific experiment every time I have an appointment with my Dr...Weird feelings but not bad at all.
The first three months it was my first thought in the morning and I needed sleeping aid and meds for  anxiety.
Now I sleep deeply and happily and I think of it every day but I forget it most of the time.
You will feel much better with time.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: TugaMan on June 16, 2006, 05:38:57 pm
I found out in the hospital, at 6 a.m, after 6 hours of blood tests and waiting.
I started to shiver.... and feeling dizzy. Then, as my sister was driving me home, i had to tell her. She somehow "knew" already, due to the symptoms in the 3 weeks before.
Then I had some weeks taking bromazepam to help me sleep.... and during the day i couldn't stop thinking that i was HIV+ and would die soon.
After the first appointment with my HIV doc i started feeling better.
Things went a bit "down" again in the next month when i was counselled to start taking meds, due to my VL. And then, it went OK again after the first results of the blood tests, after starting meds.
Nowadays I feel fine, i live my life normally and don't think about "it" constantly.
The thought is always there, but not in a self-destructive way...
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Matty the Damned on June 16, 2006, 05:39:14 pm
I don't really recall the first 6 months after my diagnosis. Well it's patchy. I was pretty well wasted for most of it.

MtD
Title: Re: Your reactions to testing poz: the first three weeks
Post by: allopathicholistic on June 16, 2006, 06:29:02 pm
I am wondering about how other people took the news, how they shared it, and most of all, what they FELT.

I was dating someone for about 2 weeks and it was time to get another hiv test (i had tested neg 2x prior). was pretty sure it would come back neg again but it didn't ... That day I shed a few tears on the street. I looked up to the sky in confusion but not anger. I was in a fog of confusion and pretending an 800 pound gorilla that was clearly there simply wasn't there. I think some people call that "blocking" something out mentally. ? I told the guy I was dating over the phone and he showed up at my door in half an hour - that meeting was one of the most poignant moments between us. He acted pretty normal. He didn't cry, so I guess that's why i didn't cry. We had a +\- relationship for over 3 years. Now we're just friends. So, in a nutshell, what I felt was fog, confusion, make-believe. It took me 5 years to take sensible action and by then my tcells were decimated down to 42
Title: Re: Your reactions to testing poz: the first three weeks
Post by: david25luvit on June 16, 2006, 06:32:16 pm
Calvin...  Interesting question.  I found out two years after David and I got together.  He had been positive for
years and that particular morning was having some bad "side effects" from the med's I had convinced him to try.
I had to take the test twice....as the first one came back "inconclusive".  After I left the doctor's office, I wandered '
around for hours trying to figure out how I was going to tell David.  I knew he would blame himself and the last thing
he needed at that moment was something else to deal with...  Finally I called a friend to come get me and take me home...Didn't realize I had wander so far from the doctor's office.  The first three weeks was spent taking care of
David trying to convince him it was no body's fault and working full time.  It wasn't until David died that I actually had
to face my own illness.  Looking back now, I am amazed at how well I kept it together but of course after David died
I did try to commit suicide.  Funny, I hadn't thought of this in a couple of years or so..........
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Sdgirl on June 16, 2006, 09:32:51 pm
It will be 4 months for me on the 21st of this month.

I found out at a clinic…I went because my boyfriend was in the hospital and the doctors did not know what was wrong with him.  When I was finally able to talk to someone and ask if they had done a mouth swab on him in the ER they said they did and it had came back “inconclusive” and they took blood to confirm the results.  I knew right then that I needed to get tested.

My first physical reaction was to start shaking, quite violently actually.  I looked like I was convulsing.  That lasted about 5 hours.  Within the first 4 hours of being told I was positive, I had been to see my doctor, had blood drawn, went to see a counselor and went to an organization called Christie’s Place who help women infected and affected by HIV/AIDS.  No tears, no drama…………..I was ACTION GIRL!

Actually, I still have yet to cry.  I’m sure it’s shock.  I am the one who consoles my friends.  My mantra is “I’m fine, really, I’m okay”.

Funny thing……all throughout my 20’s and 30’s I had relationships and casual sex.  I can count on both hands the times I used a condom EVER.  Not so much as one STD.  My only worry was that I wouldn’t get pregnant. 

I don’t blame anyone, it’s just as much my responsibility to protect myself.  My only crime is having sex with someone that I loved and trusted.  Shame on me.

But for right now………………“I’m fine, really, I’m okay”
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Life on June 16, 2006, 11:08:52 pm
"OH YOU GOTTA BE FUCKING KIDDING"

Annual routine checkup with my gay GP in Snowmass Village.   Beautiful day.  Hugged my husband goodbye and said I was getting my results from labs and such.   Dr. Mike sat me down and said your HIV tests was pos.   I turned white as a sheet,  felt faint and felt life as I new it was over.   My life with my husband would be cut short.   

After the news I drove down to Williams College where he works.  Asked him to come outside and I looked at him, then hugged him and said "I tested positive".  Within seconds, he whispered in my ear "Eric, this changes nothing,  I will never let go.  I am probably in the same boat to".   I went to work for .5 hours and told my bosses that I felt ill.   Went home and called my ASO.  My doctor immediacy hooked me up with Dr. Ben out of Denver who actually called me that same day and talked me out of all sorts of bad thoughts.   

During that first two weeks I told my family, Mom & Dad and had re-established a bunch of support people that I have leaned on in the past.   I talked with all my friends I knew who were HIV.  Had dinner with them and Will.   Lost 16 pounds during those first two weeks.   But also established one hell of a support system for me.   William tested pos 1 month later....   One ride I thought I would get off of (suicide) if I could not live the life I wanted to.  I probably hiked 200 miles those first 3 weeks last September trying to figure everything out.   No thought of being on-line or anything like that for the first 3 months of diagnosis.   I wanted only to trust my doctor and have just face to face time with people in my life.  Thought about that for awhile (suicide) and knew I would hurt to many people.  So,  here I am.  One day at a time.  On meds and doing very well....   Not a two week time frame I care to go back and visit very often..  Am I comfortable about HIV at the 10 month mark?  Most people probably would say to me "no" esp those who know me from the boards.   My mind constantly is reminded of a time long past and to this day, it still Fucking Sucks! :'(  But,  I am a slow mender.  I stay active and I will most likely fall off a cliff (unintentionally) before I die from this....
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Matty the Damned on June 16, 2006, 11:56:52 pm
My GP told me over the phone. Yes, I know that's forbidden but I'm special and not bound by the rules that cover puny mortals. I had 15 minutes of panic and then I rang my "pharmacist." ;)

MtD
Title: Re: Your reactions to testing poz: the first three weeks
Post by: DingoBoi on June 17, 2006, 12:19:33 am
xanax and wine were my company the first three weeks.   I don't remember much of it at all.

Title: Re: Your reactions to testing poz: the first three weeks
Post by: sdcabincrew74 on June 17, 2006, 12:24:30 am
um, well I was in the hospital with PCP and MAC.  So I do not remember much, once I started remembering all I thought about was dying.  Now, all I think about it living....
Title: Re: Your reactions to testing poz: the first three weeks
Post by: JohnOso on June 17, 2006, 03:38:17 am
It wasn't so much the HIV diagnosis that got to me.   It was the news that my CD4 count was 13.  It shocked me, and it shocked the hell out of my doctor too (well, he didn't let on that he was shocked at the time, but told me as much later on).

I wasn't prepared for that.  I had been sick with PCP, but by "blind, dumb luck" (my doctor's words) I somehow made it through that without going to the hospital.  I had some friends from work come over and start IV's on me, and give me liter bags of saline to rehydrate me.

That day in the Planned Parenthood office when I got told I'm HIV poz? -- I'd been preparing for that day for a long time.  Made me a bit dizzy, but then I was dizzy and short of breath from having pneumonia anyway.

Take care,
John
Title: Re: Your reactions to testing poz: the first three weeks
Post by: bobik on June 17, 2006, 03:53:12 am
I found out because I found KS on my leg. Being an HIV nurse I could diagnose myself. It was confirmed by a dermatologist who is a friend of mine and hugged me when he told me. That did help.

I remember telling everybody immediately. I called up all my friends,at that point I needed everybody to know because I didn't want to be explaining things later on.

Things were different then. I had Aids and I had the death sentence, there was no HAART yet. I think because of my wonderful love of my life I could handle what was going on. Telling my family was the hardest thing because my sister in law had aids as well, she was diagnosed some days before me. For my family it was all a bit too much, I think. Karin died 8 months later.

2 weeks after my diagnosis I went out again. I also went back to work pretty soon. When I think of that right now, I am not so sure if that was a good idea. Taking care of people with aids when I needed to be cared for...

I remember making travelplan. One trip a month at least. The idea to make the best of what would be the rest of my life. I still live like that, 13 years later and it feels good.

Coen

Title: Re: Your reactions to testing poz: the first three weeks
Post by: otherplaces on June 17, 2006, 04:30:21 am
It's friday night. It's late and I've been drinking a bit, so I might as well contribute to this thread....:)

I was worried about the person I'd slept with from the very next day. So it was a long road for me to the diagnosis. I don't know why. It was 'low risk', but whatever. Perhaps somehow I knew. When I got sick 2 weeks later I was beside myself. I saw an hiv doctor who told me not to worry. I'm sure based on my risk level. I continued to worry and actually ordered a private pcr test. That was a bad idea. Those people are horrible to deal with. The test came back a week and a half later than it should have. I called them every day for a week to see if the results were in. It's hard to even fathom how I handled that stress level every day. Then I called one morning before I went into work. They said they wanted to retest me. After pushing them they said the pcr was pos, antibody neg. Then I walked into work like everything was okay. That was surreal. I called my doc who told me to come in that afternoon and to never talk to the private testing people again. So then I had another week to wait on my doc's VL test. Then I went and saw my therapist and broke down crying. Over the weekend I flew down to Nashville to stay with a friend and get away from my hell in Chicago. I flew back on a monday. Took the train into downtown to transfer, but stopped to eat breakfast. My doc called right after I finished eating and told me the news....positive of course. I know that's a no no, but he knew I'd been waiting forever. So there I was in the middle of downtown chicago, people everywhere, and the world was swimming. Took the train to the bus home. Then went to see the girl I had dated right before all of this...not the one who infected me. Joy of joys she lives in the same building as me. I guess we were still friends then. She was never put in any risk and all tests had shown I couldn't have gotten it from her unless she'd been infected while we were dating. Anyway, I knocked on her door and told her the news. She didn't even hug me. She didn't hold my hand. I told her I was going to tell the girl that infected me to get tested and that if she had slept with anyone in the window period she should tell me because I'm getting ready to totally fuck up somebody's world and I have to be sure before I do that. She said she hadn't...which I believe.

Geez, this is a long story. Anyway, some friends came over and hugged me and I cried and stuff. I hardly see those people anymore which makes the memory of their support really not that comforting. Then I went and saw my doc who told me I was going to live to be an old man. I didn't believe him. I'm not sure if I do now, but I think I'm going to live alot longer than I did that day.

The 3 weeks after the final diagnosis were exhausting. I couldn't sleep at all. I might sleep for two hours but then I'd wake up. Of course the nightmare was my life. I couldn't escape at all by getting some sleep.

This all being 10 months ago it still makes for quite a bad memory. But I survived. Maybe things could get worse than that month of hell. But right now, as long as I have my health, nothing will be worse than that time. I definitely feel like a much stronger person now.

Well, that's the quick version of my story if you can imagine.

brian
Title: Re: Your reactions to testing poz: the first three weeks
Post by: cubbybear on June 17, 2006, 04:59:03 am
I had a feeling I was HIV positive before I was diagnosed.  I knew I did a lot of self destructive risky behaviour after my first relationship fell to pieces, and someday I would pay the price.  I ignored my coughing, struggling to breathe, constant fainting in the shower, and finally a nice full body rash that I ended up going to the ER for.  The ER Doc I had asked me what I thought was wrong and I said I really wouldnt be surprised if I have HIV and PCP and god knows what else.  She was pretty surprised I had guessed right, and sympathetic when she acknowledged that my bloods tested positive for HIV.

I wasn't surprised by my diagnosis, the first thing that raced through my head though was whether or not I had infected my partner.  (thankfully I didn't!)  The following couple of weeks in hospital was spent thinking about my future, if I was going to see my next birthday or not, if I was going to waste away to a shadow (I already lost 60lbs at the time).  I cried a lot, but I wasn't afraid of dying.  I just didn't want to, though I laid in hospital waiting to die... but thanks to the meds it never happened and I got stronger.

Today I generally don't think about it, but like most people I have a bad day now and then.  I mostly forget about being HIV until my mobile phone alarm goes off to tell me to take my meds, and usually within minutes of taking them I forget I have HIV again, unless I am having a side effect night courtesy of Sustiva, though nowadays, that's pretty rare.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Rob - Dublin on June 17, 2006, 06:34:35 am
Hi Cal,

Im five weeks on now. I got HIV from a casual fuck in January 06 having been ultra careful for the last 10 years. I have a boyfriend for 10 years and we have a relationship that gives me a daily buzz. I am lucky, he has been great and my HIV has cenmented our relationship even though it does not stop me feeling guilty for bringing it into our lives. (I feel a little like Prince Charles and Princess Diana when she said there was 3 in their relationship, but hey at least my HIV is bette looking than Camilla!)

I have only told two people (outside of here) and feel it is enough for me. I work as a lawyer and have my own law firm and I am making some plans to look at a five year plan in work (dont know if that is necessary cause I feel great).

Nothing has realy changed for me. I feel gr8, am doing all that I did before the diagnosis and want to keep an active life for as long as I can.

I made a conscious decision that I would have a positive attitude to my new partner (HIV) and decide to involve it and build it into my life. However, it is my life and while I am ok about having it live with me, I wont be too happy if it becomes bossy with me about how I live my life.

Take care,

Rob
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Dachshund on June 17, 2006, 08:45:14 am
I had just ended a twelve year relationship when I finally tested. After testing I blew off going in for the results...that is until a county health official called and said they were sending the shefiff if I did not come in for the test results. I can honestly say my first thought was "dear God please let my ex be negative" I'll deal with the rest. Thank God he was. The rest of my story is like everyone else....no better,no worse.

Peace,
Hal
Title: Re: Your reactions to testing poz: the first three weeks
Post by: jordan on June 17, 2006, 10:23:11 am
Here's my story.  The only person I have shared with so far is Jeff.  ;)

Last december (dec 2005) I noticed that i had this lump on my neck while shaving.

I didn't think anything of it because sometime I get an accumulation of liquid because I get stressed (don't ask me why...I'm sensitive by nature).
 
Well it didn't go away....and I was just going to ignore it, because no one could really see it - it was just something I could 'feel'.
 
well I went to the dentist in Jan 2006 for my 6-mos. cleanup and then the hygenist checked for swollen lymph nodes (apparently for oral cancer).
 
at first she didn't even feel it, but after she told me what she was doing...I said "oh you mean this"
and she felt and she's like "yeah go to your doctor and get it checked"
 
so after that, I went back and forth thinking 'it would just go away' finally I went to the doctor he sent me to a ENT specialist who said it wasn't going to go away and they had to do a biopsy to determine if it was benign or malignant.

I had to drive myself to the hospital and go under local anthestic because I had no one to drive me - horrible experience. I couldn't tell anyone because I didn't want to worry anyone if it wasn't anything.
 
well after a week the doctor called and said it was Karposi Sarcoma which is some form of cancer seen in aids patients.

he then sent to me to another doctor where I submitted to an HIV test that came back positive and from that moment in Feb of this year I've been taking Sustiva and Truvada.

I remember sitting in the doctors office and when he came in he simply said "as you probably already know your test came back positive."  I started crying because all I could think of was Rock Hudson (for some reason) and dying.  And the funny part is I was putting on a brave face until he mentioned my family and my mom and then I lost it.

an intern was also in the room that day with the doctor, and the guy quitely handed me a kleenex and I remember him touching my should to comfort me ...for a moment I felt a sincere warmth...and then I remember thinking this guy is probably thinking I deserve this and that's what he deserves for being so careless.  In reality I don't know how it happened or with who.

Then I remember thinking....great I stopped drinking (sober 2 years in July) got rid of my cheating ex-boyfriend and now this happens.  I might as well just start drinking again, run up my credit cards and just go crazy.  However, I found myself going through the motions, keeping up appearances as I've always done, because no one knows about me and I can't tell the truth because I don't want my family to have to deal with having a gay son and now a gay sone with HIV.

I don't know what's going to happen or when the cat will be let out of the bag.  I can only hope that I will be able to continue to support myself and live each day and enjoy each moment.



Title: Re: Your reactions to testing poz: the first three weeks
Post by: Benc7 on June 17, 2006, 12:04:22 pm
I was diagnosed in May of 1990. My doctor was surprised at how calm I was.  I got re-tested at a local clinic just to be positive...and I was.  The doctor there was surprised at how calm I was.  I had tried to get tested several times before, just after the test became available, but my doctors  dissuaded me: "we can't offer you any treatments, we don't know how this information will be used, if this gets out you may lose your job" etc.  All these concerns were valid in the 80's. So, when I finally did get tested I was prepared.  What I wasn't prepared for was the reaction of my partner and friends who were devastated.  I was calm then and I'm calm now.  We all die, if not from HIV then from something else. It's the living that counts.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Jeff64 on June 17, 2006, 12:34:54 pm
Hi,

I was a little shocked...a little sad...

I was more concerned that I tested positive for Syph. I mean, WHO GETS THAT?

I am to this day struggling with the fact I am HIV poz...It is weird knowing you have something that there is no cure for, but the same goes with cancer and herpes, I suppose.

Jeff
Title: Re: Your reactions to testing poz: the first three weeks
Post by: CalvinC on June 17, 2006, 12:44:21 pm


These are great stories; thanks all for sharing so much in depth.

What I get from all of them, especially the detailed ones, is that my experience is not that different, and that your experiences follow a pattern: some disbelief at first, but then acceptance; some friends/family rally, others eventually drift away. Benc7, just above, summed it up nicely: It's the living that counts. And I feel that that is what we've all decided on--your stories are testaments to that. Thanks ever so much for making me feel less alone.

I have an excellent GP, a specialist who is world reknown, great friends and family, and so on. The only thing that threw me off, as I mentioned, was the ex who has never really said goodbye; he just went away. My GP advises a wait-and-see approach, so I'm not on meds and may not likely be so for a couple of years (as I appear to have become poz in the last year). I'm in good hands, and on this list, in good spirits.

cal
Title: Re: Your reactions to testing poz: the first three weeks
Post by: David_CA on June 17, 2006, 12:50:25 pm
Wow, you know, I almost can't remember the first three weeks.  It was March 3, 2006 when I found out.  It was a Friday.  My partner called for my results (drug store mail-in test).  I knew by the fact that he was holding to speak to a person that I was HIV+.  I was kind of shocked, but not really surprised.  I thought I would get a call saying there was a mix-up (denail).  I was pissed as hell at myself.  I felt dirty and tainted.  I was scared.  Mostly there was this feeling that something was happening that I didn't understand... like I was convicted but didn't know my sentence yet.  I was very stressed and tense.  All the bad feeling lessened over time.  What's weird is that everything else I did those first few weeks is kind of a blur.

What really changed things was at my last appt when my Dr. prescribed Prozac for anxiety.  It started helping in a few days.  Now, two weeks later, I feel great; I feel like I always did.  I guess I was suffering from the beginning of depression.  There are some side effects, but they're not bad so far. I guess my point is that sometimes we need a little help getting adjusted.  I think my denial wasn't so much about HIV but more about it not bothering me.  I repressed the feelings I needed to deal with.  They've been dealt with now, and the 'help' (Prozac) is doing its thing.  I'm not really bothered by it lately.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: bear60 on June 17, 2006, 05:17:38 pm
Its been so long I dont remember the 1st 3 weeks.  I do remember thinking I had about 4 years to live, since that was what we were up against then.  So I was worried about things like a will and such. My doctor even told me he would help me get on disability. I am still not on disability. That was 1989.
My biggest problem through out this whole thing has been a feeling of being "dirty" and that I cant have sex anymore. I think I go without sex for months at a time and never think much about it.  But sometimes I wish I could turn back the clock and it would be 1980 again. Ah well. Guess not.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: cmhjeff on June 17, 2006, 09:20:42 pm
Jordan you know I love you already but I'm so happy to see you sharing your story with the great group of people here.  Come on everyone join me in welcoming Jordan into our littlr AIDSMEDS family!! ;D
Here's my story.  The only person I have shared with so far is Jeff.  ;)

Last december (dec 2005) I noticed that i had this lump on my neck while shaving.

I didn't think anything of it because sometime I get an accumulation of liquid because I get stressed (don't ask me why...I'm sensitive by nature).
 
Well it didn't go away....and I was just going to ignore it, because no one could really see it - it was just something I could 'feel'.
 
well I went to the dentist in Jan 2006 for my 6-mos. cleanup and then the hygenist checked for swollen lymph nodes (apparently for oral cancer).
 
at first she didn't even feel it, but after she told me what she was doing...I said "oh you mean this"
and she felt and she's like "yeah go to your doctor and get it checked"
 
so after that, I went back and forth thinking 'it would just go away' finally I went to the doctor he sent me to a ENT specialist who said it wasn't going to go away and they had to do a biopsy to determine if it was benign or malignant.

I had to drive myself to the hospital and go under local anthestic because I had no one to drive me - horrible experience. I couldn't tell anyone because I didn't want to worry anyone if it wasn't anything.
 
well after a week the doctor called and said it was Karposi Sarcoma which is some form of cancer seen in aids patients.

he then sent to me to another doctor where I submitted to an HIV test that came back positive and from that moment in Feb of this year I've been taking Sustiva and Truvada.

I remember sitting in the doctors office and when he came in he simply said "as you probably already know your test came back positive."  I started crying because all I could think of was Rock Hudson (for some reason) and dying.  And the funny part is I was putting on a brave face until he mentioned my family and my mom and then I lost it.

an intern was also in the room that day with the doctor, and the guy quitely handed me a kleenex and I remember him touching my should to comfort me ...for a moment I felt a sincere warmth...and then I remember thinking this guy is probably thinking I deserve this and that's what he deserves for being so careless.  In reality I don't know how it happened or with who.

Then I remember thinking....great I stopped drinking (sober 2 years in July) got rid of my cheating ex-boyfriend and now this happens.  I might as well just start drinking again, run up my credit cards and just go crazy.  However, I found myself going through the motions, keeping up appearances as I've always done, because no one knows about me and I can't tell the truth because I don't want my family to have to deal with having a gay son and now a gay sone with HIV.

I don't know what's going to happen or when the cat will be let out of the bag.  I can only hope that I will be able to continue to support myself and live each day and enjoy each moment.




Title: Re: Your reactions to testing poz: the first three weeks
Post by: RobT on June 17, 2006, 11:40:00 pm
When I found out that I was diagnosed as pos. , I initially called my bf in London to tell him about my heartbreaking news. I knew that he had to know, since we r both engaged to get married. I then told the majority of my small amt of friends so I can at least form some sort of support. That day, I walked into my test, thinking I was healthy as can b and wham...I got the pos result. I was floored. I was given a list of HIV specialists in my area and called each one while drinking coffee. It was stressful, but something I knew had to b done. That day, I spent about 3 hrs in church just weeping. I was so stressed and I cud not imagine how gr8 my outlook on life has been b4 then. I went home, still crying and my sister somehow knew what was up. I guess that I eventually told her and it was our own little secret for the next couple of months.
I continued my best to maintain my normal prospective and outlook on life. I called my bf on a daily basis, telling him how sorry I was. That was when I decided to go thru a multiple of tests all confirming the same. I was distraught and angry, but I knew that I cudn't change what my results were.
My bf finally visited me that August and I felt so ashamed that I cud not even sleep in the same bed that he was sleeping in, which was mine. I spent a few nights staying up l8 cuz I cud not sleep, but things did get back to the normalty of what my life was supposed 2 b. I began to get a lot more sleep as usual and working out, which cleared my head.
I was distrught and frightened for days on end cuz I heard of all the opportunistic infections and I guess I was expecting the worst case scenario.
My life was settled down after that and I still workout at the gym, get my sleep, and have not told many ppl-except only a selected few.

RobT

9/27/2005-1st test results
Viral Load >1,000,000
CD4 204
CD4%age 18
CD4/CD8 ratio .23
11/24/2005- Sustiva/Truvada
04/18/2006
Viral Load 140
CD4 402
CD4%age .21
CD4/CD8 ratio .39
Next appt.-06/27/2006 (lab results)
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Eldon on June 18, 2006, 01:33:48 am
My Healthcare provider from blue cross / blue sheild told me in the parking lot at my job and I could't beleive it, I demanaded for a retest. I cried when I told my Family and they cried with me.

Eldon
Title: Re: Your reactions to testing poz: the first three weeks
Post by: J.R.E. on June 18, 2006, 03:18:10 am
Hello,

I tested positive a couple weeks, after the passing of Rock Hudson, back in October of 1985.

I already had a feeling that the test result was going to come out positive, as the person whp passed this on to me, had later notified me, that he was indeed HIV positive.

I was angry ( I could have put my fist through a brick wall. I felt alone, hurt, very anxious,And those final images of Rock Hudson, were coming to my mind. I remember that very well.

I remember wondering at that time, where my relationship ( with my current partner of 26 years) would end up. Fortunately, we are still together, and doing very well. He is HIV negative. It was a tough road, but we both conquered it, and I couldn't have done it without him.

I remember testing several more times, before 1999, and having to give a little comfort to  those giving me the positive test results. They had no idea, that I had already tested positive years before.


Ray
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Markmt on June 18, 2006, 04:21:02 am
Quote from: CalvinC


When do I get to get "normal"? How long did it take you to get a semblance of a more routine emotional life?

cal

Hi Cal, I did not read other posts but I will read all replies when I have more time as I am sure it will be very interesting to learn how others reacted.

As to your question, Being that i had a complete blood count (excluding HIV) and all came normal, then re done the tests a month later (including HIV) and doctor wanted to visit her clinic for results, that's when my heart sank. Luckily I had my partner to share to initial emotions and shock who was very supportive, but I still had that feeling of fear and confusion.

I went to the doctor with my mum (she insisted on coming with me) and she was the first to know. Luckily the doctor and his assistant gave me a good explanation of what the process is and have calmed me down. I think whoever gives you the news has an impact of how to react from there onwards.

 Initially it was a mad search for information on internet and was reading all I could get (that's very tiring itself) I also bought the book 'First year with HIV". Until finally I hit on this forum which was a real blessing to interact with people which probably has been the best wealth of information not only in a technical sense,  but in the every day running of living with this condition. Today (after 2years and 4 months) I am really comfortable with my meds results and who I am) I am sure the same will be for you,

hug,

mark
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Gilles on June 18, 2006, 07:58:32 am
I have been diagnosed 3 months ago....I feel better but certainly not back to normality. Mornings are worse keep thinking how happy I was before the diagnosis and how quickly my life has changed. One minute I feel normal and later sad again. Hope this will go away soon....
Title: Re: Your reactions to testing poz: the first three weeks
Post by: PeteNYNJ on June 18, 2006, 12:24:30 pm
I found out Oct of this year (right before Halloween)

I first did the Home Access test because I had an unsafe experience and just had a feeling.  It came back poz.  They told me over the phone before work and I just went numb.  Went to work, had a Halloween party (which included lots of skeletons and ghost - that was good for the old spirit), and made a doctor's appointment.

My doc was caring, retested, told me I would be ok, and gave me the name of a few support organizations.  I was more upset when my test for Gonnerhea and Clamydia came back positive as well.   30 years of life without an STD then I get like all of them in one shot.  I felt pretty dirty but I got over it. I told my friends and family shortly after finding out. 

It has been a rollercoaster.  I cried a few times, more because I felt like I was the only one in the world with this.  That is why it is important to be on here and talk to other's who are in the same boat.

It has been about 8 months and I feel basically normal, changed forever, so I guess a new normal.   
Title: Re: Your reactions to testing poz: the first three weeks
Post by: newt on June 18, 2006, 01:56:33 pm
Finding out I was HIV-positive, it was not an interesting moment.  My doc was surprised I wasn't surprised and surprised I was so level about it all.  I went back to work, then went to gym, then went home and had bareback sex with my HIV+ boyfriend.  It was really hot.

Later, different matter, took along time to get over the vague "Is it worth it" feeling, some months into treatment.

- matt
Title: Re: Your reactions to testing poz: the first three weeks
Post by: Tim on June 18, 2006, 01:59:57 pm
My boyfriend, Ryan, was diagnosed at age 20.  He was still living at home and had no job, no insurance.  For nearly 2 months, I was the only one he could talk to about it.

His reaction was to go into nearly total isolation in his bedroom with only cigs and tons of booze where he’d drink himself into literal oblivion at least 5 nights a week while chatting with me either online or on the phone.  The only time he’d leave the house was to get more cigs or booze, or when I’d go and take him out for a weekend of dinner, movies, clubbing, mall-watching and motelling, again with lots of drink.

His immediate reaction was, “How could this happen to me?  I haven’t been very promiscuous and I’ve always been safe (condom) except with my committed partner, even then only after negative testing.  Then again, there was that one time, six weeks ago, drunk.  The boy wore a condom but, unknown to me, took it off and re-entered me.  My life as I know it is over. I’m toxic. I’m poison.  No one would ever want to touch me again.  I’m going to die.” 

I was now his committed boyfriend and I wouldn’t leave him.  He vacillated 180 degrees, emotionally, with me, sometimes within the same sentence.  One minute he loved me and wanted a lifetime together, the next minute he wanted me out of his life. 

Upon his first revisit to the doc for the report of his blood analysis, he was sitting on the gurney when the doc told him his numbers and how it had already begun to enter his brain.  He literally went into shock and I had to jump up quickly to catch him from falling onto the floor and I held him ever so tightly and lovingly.

His isolation and nightly drunks lasted from the end of May until nearly the following March.  Unfortunately, for me anyway, he could not reconcile his being poz and me being neg.  He was convinced that he’d eventually infect me and he could not live with that.   That March he abruptly disappeared from me.

He started HAART six months after diagnosis and quickly saw a nice rise in his CD4 and drop to undetectable VL within 3 months.  Four years later, his CD4 holds in the 700-800 range and his VL remains undetectable.  He’s had occasional moderate side effects from meds to this point.

He’s still on his original meds, Trizivir.  I am fearful that lypo may set in on him soon.

To your point, it takes different spans of time and different approaches for everyone to get over the initial shock and roller coaster ride.  But, you will find your equilibrium and life will go on.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: naftalim on June 19, 2006, 05:32:27 pm
I tested poz in May 2005. Being straight, it seems to me a bit more difficult, as this issue would have been on the far periphery of my social circle. I had a bad flu in April of 1999, went to a Doctor, he said my initial test came back weak positive and then subsequent tests were negative, so as far as I knew, I was HIV- No follow up test was scheduled.

As the years went by, I had many tests and many different wrong diagnosis, such as Hepatitis, Sarcoidosis and then finally Chronic Fatigue Syndrome. I even had surgery to remove a Lymph Node. So basically, I was dealing with INCOMPETENT doctors. Luckily, as far as I know, I have not infected anyone, though I had a girlfriend for a while with whom I had unprotected sex.

Finally, in April 2005, I got night sweats, thrush, and lost weight, so I looked up these symptoms on the Internet and went to my Doctor and asked for an HIV test. When he told me I was positive, I thought that I had just contacted it, until an AIDS counsellor I met a few days later told me that I was probably infected since 1999.

I have told my sister, but not her kids, and some of my close friends. All have taken it well and been very supportive.

So, I am in a study and doing well., VL has been <50 for several months now and CD4 is 249. Mentally, I have my down moments, but they are mostly moments.
Title: Re: Your reactions to testing poz: the first three weeks
Post by: CalvinC on June 19, 2006, 05:42:44 pm
Being that i had a complete blood count (excluding HIV) and all came normal, then re done the tests a month later (including HIV) and doctor wanted to visit her clinic for results, that's when my heart sank. Luckily I had my partner to share to initial emotions and shock who was very supportive, but I still had that feeling of fear and confusion.

How odd, Mark. That is my scenario exactly. But when my GP told me, we were walking into his inner office, and he put his arm around my shoulder (was not looking into my face) and said, "I'm afraid I don't have good news for you." I felt it incumbent upon me to play it a-okay, and I wanted to reassure him how difficult it must have been for him to tell me.

I am looking back on those three weeks now (this is my fourth) as a strange sort of pugatory. How in the heck did I get through all that, what with the ex dumping me etc? I think I'm beginning to know: I'm strong. Stronger than I knew.

Cal
Title: Re: Your reactions to testing poz: the first three weeks
Post by: dario on June 21, 2006, 06:24:11 pm
I discovered that I am +  in the first week of January 2006.  Probably I got infected in mid November 2005. I felt completely lost and overwhelmed.  I cried like a baby.  Ironically I was more scared of telling it to my family and friends rather than the wreckage that this virus brings to the body.  Telling my parents that I am gay is already a problem.  Adding that I tested positive is even more scary.

Eventually I managed to tell just a few friends (not more than 6) who I know I could trust.  They have been a big support.  Indeed I feel that my relationship with them has grown deeper and now I realise that they are truly good friends.  Now I've started worrying about what could happen to my health.  I spend hours wasting my time on the internet searching about "vaccines", "new drugs", "breakthrough" etc ... At the end of the day I end up discouraged.  The only thing that helps me is the cautious optimism of the doctor.  He keeps telling me that although there is no definate cure things have changed a lot since the 80s. 

anyway, the only thing that helped me in the first month is hope
dario