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Author Topic: scared shitless  (Read 17041 times)

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Offline angelofdreams

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  • Posts: 89
  • dreaming away
scared shitless
« on: July 15, 2006, 06:16:49 PM »
recently been told i am possitive, its so extremely scary i think, not knowing what will happen.
did anyone else feel like that and if yes, how did you got over it
To live would be a awefully big adventure

Offline cflas

  • Member
  • Posts: 40
Re: scared shitless
« Reply #1 on: July 15, 2006, 06:36:02 PM »
Dearest Angel:  I can't imagine anyone, when first learning they were HIV+, didn't, at some level, fall apart.  I'll never forget the day I learned of my status:  I had an 11:45 a.m. appointment. I arrived by 11:15 (always be prompt, my mother told me) and by 11:30, his entire staff (of five) each left the office in a mad scramble to leave he and I alone. (I had been seeing this doctor for ten years before the HIV test, we were good friends, hung out together, but still...). I just knew, when the last person raced out of the office what my status was going to be.

He brought me into the exam room and said, "I have some bad news" and then he told me.  I cried.  And, then he said, "while this is not the news you wanted to hear, I also want to tell you that you will never, ever be alone."  He told me of the strides in medications, alternative therapies, and the potential for HIV to become a chronic illness (that was thirteen years ago this week).  He has managed my HIV care for the past thirteen years and I would walk in front of truck if he asked me to. (Only kiddin')

The fact is that HIV is the trap door you never expected. It's the mine in the mine field.  But it also can be incredibly enlightening.  You will begin to (hopefully) treat yourself better.  You may begin to understand 'unconditional love'. But it will be a roller coaster...

One of the things I've learned is that, not right now, but at some point you will be able to begin to teach people about this disease, you will begin to share this part of yourself.

Also, you will need to learn so much about how to care for yourself and how to advocate and partner your own care. So, I suggest that you stay with these people here. I've only been here for a short time, but each of them will give you good, sound advice. Some of them will piss you off.  Many of them will make you laugh.  But that's what happens when you join a family...welcome to the family. 

My thoughts, prayers, and blessings are with you. chris

Offline angelofdreams

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  • Posts: 89
  • dreaming away
Re: scared shitless
« Reply #2 on: July 15, 2006, 06:45:26 PM »
 :) :) :) :) :)
thanks chris, i wish my mother ever told me to be on time for that meeting, lol
when the hospital called me to come over to see them i virtually forced the poor woman to tell me what was wrong on the phone because i was to busy with projects and meetings,
dumbest thing i think i have done.
one thing you learn VERY fast is that it turns your life upside down,
from living 18 hour days at work to 2.5 hours,
i always used the words "to live would be a awefully big adventure",
i guess i was right
To live would be a awefully big adventure

Offline Teresa

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  • Posts: 1,753
Re: scared shitless
« Reply #3 on: July 15, 2006, 06:56:46 PM »
Hi Angel,

We found out May 5, 2006 that my hubby was HIV+ and I am HIV-. I know how scary it is. The first thing you need to do is take a deep breath...lots of deep breaths.

I am so glad that you found us here. I dont know what I would have done, how I would have gotten thru the first couple of weeks without the people here.

Hubby was really sick and thats how we found out. They just started running test to rule things out and thats how we discovered it. The dr thinks he has had it for alot of yrs because his CD4s were so low and his viral load was so high. He wound up in the hospital with meningitis. But once they got everything under control and started his HIV meds hes doing great. He doesnt have any of the side effects yet (keeping fingers crossed), has gained his weight back and is feeling great.

I hope you read the lessons here at AidsMed. They really helped me and I'm sure they will help you.

What you are feeling is perfectly normal. Just take deep breaths. We are all here for you.  Ask questions, tell us how your feeling, there is always someone here for you!

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline angelofdreams

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  • dreaming away
Re: scared shitless
« Reply #4 on: July 15, 2006, 07:00:24 PM »
hey Teresa,
yeah, been looking trough the lessons, thank god i god a laser printer, (and yes, i am printing every lesson i found of), you could call it madness
To live would be a awefully big adventure

Offline manchesteruk

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  • Posts: 630
Re: scared shitless
« Reply #5 on: July 15, 2006, 07:07:43 PM »
Hi Angel,

Sorry to hear about your new diagnosis how long ago did you find out? Are you waiting on your first set of labs for CD4 counts and viral load?  I think the most important thing is to not try and rush things it takes time to get your head around everything.  I found knowledge is power with HIV but don't overload yourself at the start because there is SO much to learn.  Also another important thing is to get yourself a good doctor who you think you can have a good relationship with and most importantly trust.  Hang in there it gets better I promise!

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline angelofdreams

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  • Posts: 89
  • dreaming away
Re: scared shitless
« Reply #6 on: July 15, 2006, 07:12:56 PM »
yeah,
should get them in few days, ( and god knows i dont have any patience)
Unfortunatly the one doctor i have trust trough my life is in belgium,
have been thinking of moving back, even though it would really mess my life up
To live would be a awefully big adventure

Offline Robert

  • Member
  • Posts: 2,644
Re: scared shitless
« Reply #7 on: July 15, 2006, 07:28:39 PM »
Hi Dreamer...

Just keep dreaming.  You have a long road to hoe.

First things first.  Like Chris and Teressa said, learn all you can.

Secondly, take it very slowly and one step at a time.  Disclosure right now (or non-disclosure) is right at the top.  It is very important who to tell and who not to tell and when.  Once you've told someone, even if it is your closest friend who has sworn his alligence to you till hell freezes over that he will tell no one,  it's no longer a secret and you should just assume everyone knows.  Different people react differently to this strange little bug and you never know how it will set them off. 
Disclosure is one of the lessons.  Take heed.

And don't worry about your Dr. in Belgium.  It's not like he needs to be at your beck and call.  As long as everything is under control you will only need to see him 3 or 4 times/year and that is just to go over your blood tests, talk about medicines, etc.

Like I said, don't rush into anything.  Just take it one day at a time.  And you'll see how this HIV virus need not take over your life.  Just a stumbling block.  That's all.

robert

..........

Offline angelofdreams

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  • Posts: 89
  • dreaming away
Re: scared shitless
« Reply #8 on: July 15, 2006, 07:33:31 PM »
hey Robert,

thanks for that,
unfortunatly i have found one hell of a big block,
it up to a extend does rules my life for the moment,
specially now i have found out that i might not be able to do my job because there is a likely chance i wont be allowed to enter the US
To live would be a awefully big adventure

Offline david25luvit

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  • Member since March 2005
Re: scared shitless
« Reply #9 on: July 15, 2006, 07:41:20 PM »
Hey Angel....Sorry about your recent diagnosis!  I dare say no one "handles" it well.  And of course it takes time for it all to sink in too.  I'm glad you found us and am confident you will find this place a great source of information and big time support.  Welcome to the family, good buddy! :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline David_CA

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Re: scared shitless
« Reply #10 on: July 15, 2006, 07:44:54 PM »
Hi Angel,

I found out back in March I was poz.  It was traumatic, to say the least.  I'm not in this 'adventure' alone, as my partner found out a couple of days earlier that he was poz as well.  Both of us are in great health and aren't on any meds yet.  I know everybody else says to take it slow, but I wanted to know the results (CD4 and Viral Load) ASAP!  To me, wondering and worrying are much worse than knowing.  The suspense was killing me.  It was truly a relief find out my numbers, although they weren't as good as I'd liked them to have been.

That first month was a blur.  I don't remember much of anything.  The next month was better, as was the next.  Finally, I feel as normal as ever, with a little help from Prozac (to help with the anxiety and panic attacks I was having for the first time in my life).  I have a great support system consisting of my partner and about 6 friends.  This has helped immensely.  

I'd say relax and do what makes you feel the best.  If knowing your numbers will help you, then do it.  If taking time to let it sink in helps, then do that.  You're in this for the long haul and that damned HIV isn't going away anytime soon.  I guess what I mean is it's necessary to make peace with this, accept it, and try not to allow the bitterness and anger to take over.  I know a few that have, and they are miserable people.  Ask questions here if you have 'em.  You've found a great place for support and information.  Take care.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline ImagineFL

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Re: scared shitless
« Reply #11 on: July 15, 2006, 08:24:53 PM »
I was going to an Oncologist when I found out.  We did routine blood test to see how my liver and kidneys were functioning.  I was set to move to Florida on October 26th, 2004 and my last appointment with him was the day before that.  In this last set of labs, he also told me that I should be tested for HIV.

When I was called to the exam room, it seemed to be longer then usual until he came in.  I can still see everything clearly in my mind... the door opening slower then usual and the look on his face.  I immediately lowed my head and started sobbing. 

When I first started visiting this site, I was a mental wreck.  I have learned that everyone here has been affected by this disease somehow and this is a great place to unload, learn and give support.

There is a song on the radio by Tim Mcgraw called Live like you were dying  I love this song and it has so much meaning to me.  I try to live my life to the fullest these days.

He said,
"I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin 'bout the options
And talkin 'bout sweet time..."
I asked him,
"When it sank in
That this might really be the real end
How's it hit you
When you get that kind of news?
Man, what'd you do?"

He said:
"I went skydiving
I went Rocky Mountain climbing,
I went 2.7 seconds on a bull named Fu Manchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denying."
And he said,
"Someday I hope you get the chance
To live like you were dying."

He said,
"I was finally the husband
That most of the time I wasn't
And I became a friend a friend would like to have
And all of a sudden going fishin'
Wasn't such an imposition
And I went three times that year I lost my dad
I finally read the Good Book, and I
Took a good, long, hard look
At what I'd do if I could do it all again
And then...

I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fu Manchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denying."
And he said,
"Someday I hope you get the chance
To live like you were dying...
Like tomorrow was a gift
And you've got eternity
To think about
What you'd do with it
What could you do with it
What did I do with it?
What would I do with it?

Skydiving
I went Rocky mountain climbing
I went 2.7 seconds on a bull named Fu Manchu
And I loved deeper
And I spoke sweeter
And I watched an eagle as it was flying."
And he said,
"Someday I hope you get the chance
To live like you were dying
To live like you were dying
To live like you were dying."


I wish you well, Angel.  Remember that we are all here for each other.  It will get easier to deal with as time goes by.

Love ya!
Patrick

Offline angelofdreams

  • Member
  • Posts: 89
  • dreaming away
Re: scared shitless
« Reply #12 on: July 15, 2006, 08:33:09 PM »
because of years working as event manager for corporate clients i have come to the point that mentally i feel ok,
being used to be in control of everything is a major difference, i dont have any control over being ill at all.
am trying to found out how or when i got hiv and even that i cant figure out,
anyway,
thanks for all your support guys, really does make a difference hearing it from people who have been there themself instead of from a doctor or supportworker


xxx
To live would be a awefully big adventure

Offline clarke

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  • Posts: 169
Re: scared shitless
« Reply #13 on: July 15, 2006, 08:50:02 PM »
We found out Valentines Day, 1994.  We had been married 3 1/2 years, and out son was 7 1/2 months old.  I had been getting sicker and sicker and forgetting extremely important specifics in the job I had at that time.  I was also on Lithium for what was thought to be Manic/Depressive.  The Litium was actually doing something with the virus in my brain, and wreaking havoc.  When I finally got to the hospital, I had to have the guard get me to the elevator, and hit the button for me, I was so "out of it".  After a week of doing everything but stick a flashlight where the sun don't shine, they gave me an HIV test (which came as a positive).

I called Jane from the hospital to tell her, and 2 weeks later during a follow-up with an HIV specialist, I asked how long before I got AIDS.  He asked "weren't you told in the hospital?  You have AIDS".  Btw, I had ARD (AIDS Related Dementia) when diagnosed.  My manic/depressive stuff was being caused by the virus already, it was just exaberated by the Litium. 

It took me almost a year of 1,000 mgs. of AZT daily to "recover", but I have serious short term memory loss amongst other problems left out of all of this.  And, I used to have an almost photgraphic memory (I used to take apart/rebuild engines, do high end math in my head, stuff like that).

Jane was also tested HIV+, but our son "escaped" having this virus, but he has to watch us live with it (he's 13 now).

Offline Quarter Horse

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  • Posts: 77
Re: scared shitless
« Reply #14 on: July 15, 2006, 09:29:06 PM »
Angel,
I found out Aug 24, 2004. In the almost 2 years since, I have learned to love myself better than ever before...it just takes time. Listen to what the other people have said in the above threads, and take a deep breath. You will be in my thoughts.

Brian
In three words I can sum up everything I've learned about life: IT GOES ON.

Robert Frost

Offline cflas

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  • Posts: 40
Re: scared shitless
« Reply #15 on: July 15, 2006, 10:58:08 PM »
Angel:  As you can see, we are circling the wagons on your behalf.  There is so much stuff to share and I'm pretty lame at laying it all out on the table. I work much better responding to questions as, I suspect, do all of us.

I had an interesting, somewhat Karmic, the-convergence-of-the-force-over which-we-have-no-control: Literally, I was pumping gas into my truck, when I glanced over at the pump (sort of cruising this guy, but not really if you know what I mean) one lane over.  He turned around and I practically had a hard attack!  Turns out he was a former roomate whom I hadn't seen in, probably, 15 yrs!  Well, he had someplace to go, and I had someplace to go, but we cancelled the original plans and decided to go out to eat.  God, I hated this guy when we lived together. He was so much more pretentious than I ever was.  But we had a great time reminiscing about our time together, the arguments, the feathers flying all over the apartment. 

I got his number and we'll have dinner again sometime.  But what I find strange is that  neither one of us mentioned our HIV status.  (we never sexually involved).  I don't know if he is, and I never mentioned mine. 

I don't know why I brought this up unless it's to suggest that the world keeps spinning and our circles of love and friendship are ever changing to remain the same.  Again, my thoughts and prayers are with you. chris s.

Offline allopathicholistic

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Re: scared shitless
« Reply #16 on: July 15, 2006, 11:09:23 PM »
Angel, we're here for you. ....Just don't do what I did: I was so terrified that I did NOTHING for 5 years. that's a horrible stupid thing to do. Finally I was forced to take hiv meds when I almost collapsed twice in the summer of 2005. Here on this site you'll find excellent advice, educational stories from others, warm support, science news, loads of laughter -and much more

Offline otherplaces

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Re: scared shitless
« Reply #17 on: July 16, 2006, 12:22:14 AM »

Angel,

I was scared shitless too. Sometimes I still am. But when people say to you, 'it gets easier', it ain't no lie...it does. So my firend, hang in there, we're with you. Welcome to the forums. You've come to the right place.

much love,
brian

Offline DingoBoi

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Re: scared shitless
« Reply #18 on: July 16, 2006, 12:28:12 AM »
welcome to the forums.. i posted a blog actually just now http://blogs.poz.com/bailey/ that actually tells a bit of how I got here myself.

This forum saved me and provided the support i so desperately needed.  So, while it is with a bit of sadness that we welcome you, you truly have found the best support site on the web.

Hope to hear from you soon.

- Bailey

Offline frenchpat

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Re: scared shitless
« Reply #19 on: July 16, 2006, 03:18:04 AM »
Angel,

what you tell us rings a bell:
working long hours, big responsibilities, high stress - but damn good at controlling everything... I was like that too!
Then this day came when I was told, had to tell my boyfriend and felt just incredibly numb. I went to work, travelled abroad for work and kept it all to myself for nearly a month, didn't go to the doctor or anything. Then fell apart.

It's been now four years and i've come to the point where I need meds, but overall I am ok. Mentally, physically, even spiritualy (never my forte ::)), I am making progress, getting stronger. I am learning a lot, I am receiving a lot (from people here in particular) and I've learned to give more. The funny thing is that I sometimes feel happier than I've ever been  in my life, and then ask myself how that can be.

So yes, things will get better it is true, and no, it is not the end of the world, because you have a lot of life left in you. And you've found this great community.Come here often, I'll do my best to help.

Pat
People have the power - Patti Smith

Offline Charlie

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Re: scared shitless
« Reply #20 on: July 16, 2006, 08:53:58 AM »
Oh yes, & you would be a strange person if you were not, everyone deals with a diagnosis differently. How you get through it is up to you but you have come to the right place for support & information....


Take Care

Charlie xxx


http://uk-charlie.co.nr/
« Last Edit: July 16, 2006, 08:58:36 AM by Charlie »

Offline bobik

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Re: scared shitless
« Reply #21 on: July 16, 2006, 09:02:30 AM »
Hey Angel.

Sorry to hear what you're going through. I think one thing is very important. Big decisions about your job don't have to be taken now, they can be taken in 3 or 6 months time too. Making decisions when you're scared shitless is probably not the good moment!

If you happen to be in Belgium at the end of september, it would be nice to see you when we come together in Amsterdam. Seeing some of us might make you feel a bit better!

Coen
Coen Honig at Facebook

Offline Rob - Dublin

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  • Posts: 51
Re: scared shitless
« Reply #22 on: July 16, 2006, 04:00:39 PM »
Hi there,

I'm in Ireland and found out in May that I was poz. I'm sure we all go through a similar initial phase where we ponder death, loss of job and lots of other things that really do leave us scared shitless. But, after a very short time I took myself aside and realised that from now on there was going to be me and this new found friend (I've gotta call IT a friend cause I've no choice but to get on with it!) and I have to fit it into my life. I have to work with it and make sure that I run my life and not let it run it for me.

Everything has settled down well and I just get on with life and at the same time try to look at life as an enjoyable experience like it was b4, but just differently.

Like the other guys said, if u want to talk or want a mate, just ask. And if u are at a loose end you could always swim the channel over for a chat. Ah shit, I keep forgetting you have planes there too!!

Take care

Rob
14 Dec 2005 Tested Neg
21 Jan 2006 Infected
09 May 2006 Tested Poz
29 May 2006 CD4 551  (33%) VL 21,000
10 July 2006 CD4 632  (34%) VL 24,500

......when i'm good, i'm very good - when i'm bad i'm even better......

Dream as if you will live forever - Live as if you will die today.....

Offline dazedandconfused

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Re: scared shitless
« Reply #23 on: July 20, 2006, 08:15:10 PM »
I'm completely freaking too! My b/f found out not too long ago. I'm negative but he is now poz. This came at a bad time for us when we were already having troubles. I love him dearly but I was already trying to find a way to end it and now life takes this shit on him. I feel like a giant heel saying "Well, this is it for me. I'm outta here"

Offline purplerain

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Re: scared shitless
« Reply #24 on: July 21, 2006, 11:25:48 AM »
Hey Angel I just found out myself on June 20th so trust me I understand what your going thru.  I go back and forth from feeling numb about it all 2 just freaking the fuck out.  I can say that thru it all the people here as well as the lessons have been a great support and I'm not sure what I would have done without them.  Some of the best advice I have got so far was 2 TAKE A DEEP BREATH, then take another. After that take 2 or 3 more. Trust me it works
 
I wish U nothing but the best.
Hang in there bud and take care of yourself
HUGZ JAG

Offline nvgreene

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Re: scared shitless
« Reply #25 on: July 21, 2006, 11:46:43 AM »
I know for me, the initial shock was the hardest, but what I didn't watch for was the months after.

I had decided initially that I was going to keep living my life, just make some changes, I was not going to let HIV destroy me. I never thought about how it would affect my day to day though, the months following I was in a deep depression, and no one said anything to me. All my friends knew I was depressed, but never cared to say, "Hey you're not doin so well." So when I finally realized on my own, I set up a support system, I disclosed to very certain people and asked that they keep an eye out for me.

So when it happened again, my friends would call me up, or take me out to a movie or something, just so I felt like an active part of society. I really found this helped me get through it, everyone processes things in their own way, but I know it's not something that is not gotten over in one day.

Oh, I find that knowing too much, too soon is not good. The week I tested poz, I started researching meds, TOTALLY freaked me out. Take it slow, have an open communication with your friends and especially your doctor.

I'm rooting for you and know that everyone else here is too.
J
07/08/05

Offline Gilles

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Re: scared shitless
« Reply #26 on: July 21, 2006, 11:54:36 AM »
I found out this March right before  my finals at the university....my then bf pretty much left me....so I had to deal with virus plus the fact that I couldnt get a hug from somebody I most wanted from....first two weeks were the hardest...but then I became working freak...spending 8-10 hours in library to revise and read endless law cases for my degree.  All I can say is that no matter how hard you will try...things won't improve in a week....everything takes time...and I promise it will get better....its only now, after 4 months, that I feel better...

One advice would be that no matter how much you think it is end of the world....you don't know it untill some time has passed so be patient and try to keep your head sane.....
« Last Edit: July 21, 2006, 12:22:33 PM by Mr.Scruff »

Offline water duck

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Re: scared shitless
« Reply #27 on: July 21, 2006, 12:48:06 PM »
Angel Hi,

Just came upon this thread, i did read your post on the Amsterdam, two days later on the 17th july, where you was asking how many have said they are coming, which i find strange, now my question is answered.
If you are unsure who you want to share or talk about HIV or is afraid of big gathering, please rest assured, things will be supportive and good for you, we did had a mini gathering aready. AND HIV is the last thing we talk about.

I often wondered how come it took me two years to find this site - to find the support and understanding necessarily to help me have a control over this virus.

So please give it a thought or two of coming. And when you want to be left alone, all you need is to say it , you will have it, we shall all be there for you and you know why ?? We are positive !!

Siang

Offline angelofdreams

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  • dreaming away
Re: scared shitless
« Reply #28 on: July 21, 2006, 10:06:14 PM »
I found out this March right before  my finals at the university....my then bf pretty much left me....so I had to deal with virus plus the fact that I couldnt get a hug from somebody I most wanted from....first two weeks were the hardest...but then I became working freak...spending 8-10 hours in library to revise and read endless law cases for my degree.  All I can say is that no matter how hard you will try...things won't improve in a week....everything takes time...and I promise it will get better....its only now, after 4 months, that I feel better...

One advice would be that no matter how much you think it is end of the world....you don't know it untill some time has passed so be patient and try to keep your head sane.....

to reply on mr.scruff his post, i am glad i did not had a bf to deal with last month when i found out , knowing myself i am not the most sensible person and probably would have been to afraid of telling him.
i can relate to the workinghours,since finding out i have been doing minimum 80 hour weeks and they are getting longer, silly actually, could just go to a movuie or for lunch instead of sitting in the office in this weather.
funny enough i am feeling ok with that for the moment, only time will tell
To live would be a awefully big adventure

Offline angelofdreams

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  • dreaming away
Re: scared shitless
« Reply #29 on: July 21, 2006, 10:09:27 PM »
Angel Hi,

Just came upon this thread, i did read your post on the Amsterdam, two days later on the 17th july, where you was asking how many have said they are coming, which i find strange, now my question is answered.
If you are unsure who you want to share or talk about HIV or is afraid of big gathering, please rest assured, things will be supportive and good for you, we did had a mini gathering aready. AND HIV is the last thing we talk about.

I often wondered how come it took me two years to find this site - to find the support and understanding necessarily to help me have a control over this virus.

So please give it a thought or two of coming. And when you want to be left alone, all you need is to say it , you will have it, we shall all be there for you and you know why ?? We are positive !!

Siang

hi siang,

is not the fact that i am unsure about it or talking about it, it was just curiosity  from my side,
it wuld not have mathered to me how many people will be there, i was considering to come along if i could get some things arranged, ( canceling some previous booked thing).
to be honest actually looking forward to a few days away from home
To live would be a awefully big adventure

Offline aztecan

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  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: scared shitless
« Reply #30 on: July 28, 2006, 11:34:49 PM »
Hi Angel,

I hope you don't mind my throwing in a few comments. You have already had very good advice about educating yourself.

Be good to yourself. Take things a day at a time and don't get crazy about not being in control. The more you learn, the more in control you will be.

After more than 21 years living with this bug, the only advice I will offer is to get up each morning, look out the window and greet each day, whatever the weather, whatever it may bring.

If I have learned anything, it is not to take any day for granted and to live it to its fullest.

Welcome to our family here. I am glad you found us and I look forward to hearing more from you.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AldousOrwell

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Re: scared shitless
« Reply #31 on: July 30, 2006, 06:40:34 AM »
Hi Angel

Ditto to most of what the others have said. I live in London and tested poz in Oct 2002 and went on meds on Aug 2004.

You do ironically need to look at the positive side. You live in the UK. It is at the cutting edge of research and care. If you can't work you will get Incapacity Benefit and Income Support and Mortgage Interest ( but only after 9 months for this one). Don't try to work too hard as your health must come first. 

If you are still waiting for your results they may come back as quite concerning at first but this is nothing to worry about. The Viral Load readings sounded really weird to me when they talked of hundreds of thousands. They won't recommend meds, which have improved much just in the last two years alone, until your CD4 is below 250. In my case I put up with a few niggling ailments sorted with antibiotics and creams. I went on meds after getting shingles which made work difficult. It can be passed to pregnant women as chicken pox so I did not want to go around the office asking who was preggers, not to mention those I breathed over on the central line tube.

Once on meds you can expect your Viral Load to drop to tens of thousands at first then hopefully less than 50, yes 50 five oh. This was in my case and after only three months.

The important thing obviously is drug adherence. I meet a guy in my clinic from my pub quiz team. Neither of us had disclosed so it was a big shock bumping into each other. He is very healthy and has only been taking two meds for 15 years. His advice was and I quote" I'm very anal about taking my meds on time each day" I told him they were not suppositories! Anyway it filled me with great hope.

The facts are that in Britain you are currently 70% likely to snuff it through something unrelated to HIV, based on all those on meds. For us newly infected it is getting less likely each year.

I saw that THT replied to your other posting eventually. I hope you get good support at the Thames Valley group.

Take Care Aldous 

Offline jack

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  • fomerly the loser known as Jake
Re: scared shitless
« Reply #32 on: July 31, 2006, 09:54:11 PM »
in time the pain will subside. I found the best way to get over "it" was to work my ass off. Plan as if you will live a normal life span.

Offline RobT

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Re: scared shitless
« Reply #33 on: August 01, 2006, 01:53:16 AM »
Angel-
I remember when I was told about a yr ago of my HIV pos test result. I was so scared. I was not sure what wud happen. I had to tell my bf 1st, whom was surprisingly understanding and we have been together since. My bf was the 1st to know besides me, then I told some of my friends, who r HIV + as well. One of my friends told me that to take it easy and reassured me that life will continue despite this little hiccup. After spending a good remainder of that day in church, I came home and went to this site. 2 forum members on this site kept assuring me that things will improve and it only takes time. Every now and then, I have my 'bad' days, but they have improved since. I am still scared, as I am sure a lot of ppl on this site r, but I feel that I am a stronger person now.
HIV, despite it being what it is advertised to b, has taught me 2 b more truthful and I try to work on that daily. It has also taught me to take better care of myself, although I do get depressed that I cannot do the things that I have b4.
Hang in there, u will b fine. Take a deep breath and if u need to relax or go on a vacation, please do. U will b just fine.

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

06/27/2006
Viral Load 42
CD4 409
CD4%age .21
Next appt.-08/01/2006 (results/Hep A/B vaccination)


Current meds: Atripla
VL: undetectable
CD4: 630

Offline angelofdreams

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Re: scared shitless
« Reply #34 on: August 01, 2006, 06:42:57 PM »
wel guys, here it is,
my first results,was to be very honest a bit exited :) :)
i know i should take it more serious but it's the only way i can relax
VL------>>>> 465,807
CD4---->>>> 490
%------>>>> 23

any toughts on them??

xxxxx
hugo
To live would be a awefully big adventure

Offline Joe K

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Re: scared shitless
« Reply #35 on: August 01, 2006, 07:12:23 PM »
Hello Hugo,

I can't remember anything more frightening than getting my first labs, like the numbers were somehow going to dictate whether I lived or died.  Back in 85, we did not have all the count or viral loads, as many of the tests had yet to be developed.  But the effect the numbers can have on the mind are another story.

So before I comment on them, let me share a little experience.  Numbers are great as a snapshot of where we are, but only become very meaningful, when combined to show trends.  Our bodies are ever changing during the day and it's not unusual for our numbers to fluctuate during the day, so my first advice is to get your blood drawn the same time, each time, so you remove one possible variation from the equation.

The other part involves how you view numbers.  Hugo, numbers are indicators of your health and to be really used properly they need to be combined with your medical history, how you are feeling, your mental health and well I think you get the idea.  Yes numbers are useful, but they are only one indicator of your health and so I hope you can accept that and not become a slave to those numbers, nor let the stress of each new set, send you up the wall.

Concerning your numbers, they look pretty good, however your Viral Load is a pretty high.  Have you reviewed these numbers with your doc yet?  My guess is they will have you wait for a month or two and then repeat the tests, so you can start developing that trend that I mentioned.  In the meantime, just relax and go with how you feel.  That's the best indicator you have, because in my 22 years of being poz, I worked for almost 6 years with a CD4 count of less than 200, yet I felt great.

As I said, learn to accept that there are many indicators to your health and that by monitoring them, you will be able to identify issues with your health.  Your numbers are there to help you and not to enslave you.

Hugo, you're fine so put this to rest and resume your life.  Yes, easier said than done, but we all have to start somewhere.  BTW welcome to the forums.


Offline angelofdreams

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  • dreaming away
Re: scared shitless
« Reply #36 on: August 02, 2006, 03:05:28 PM »
hey,

yeah, i have had a look with my doctor but she doess not seem to be that concerned, she goes on more about me smoking then anything else, what seems ironic because she works her way trough probably 25 a day.

just hoping i can keep my CD4 count as high as it is now and i'll be happy

xxxx
hugo
Hello Hugo,

I can't remember anything more frightening than getting my first labs, like the numbers were somehow going to dictate whether I lived or died.  Back in 85, we did not have all the count or viral loads, as many of the tests had yet to be developed.  But the effect the numbers can have on the mind are another story.

So before I comment on them, let me share a little experience.  Numbers are great as a snapshot of where we are, but only become very meaningful, when combined to show trends.  Our bodies are ever changing during the day and it's not unusual for our numbers to fluctuate during the day, so my first advice is to get your blood drawn the same time, each time, so you remove one possible variation from the equation.

The other part involves how you view numbers.  Hugo, numbers are indicators of your health and to be really used properly they need to be combined with your medical history, how you are feeling, your mental health and well I think you get the idea.  Yes numbers are useful, but they are only one indicator of your health and so I hope you can accept that and not become a slave to those numbers, nor let the stress of each new set, send you up the wall.

Concerning your numbers, they look pretty good, however your Viral Load is a pretty high.  Have you reviewed these numbers with your doc yet?  My guess is they will have you wait for a month or two and then repeat the tests, so you can start developing that trend that I mentioned.  In the meantime, just relax and go with how you feel.  That's the best indicator you have, because in my 22 years of being poz, I worked for almost 6 years with a CD4 count of less than 200, yet I felt great.

As I said, learn to accept that there are many indicators to your health and that by monitoring them, you will be able to identify issues with your health.  Your numbers are there to help you and not to enslave you.

Hugo, you're fine so put this to rest and resume your life.  Yes, easier said than done, but we all have to start somewhere.  BTW welcome to the forums.


To live would be a awefully big adventure

Offline AldousOrwell

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Re: scared shitless
« Reply #37 on: August 02, 2006, 07:57:06 PM »
Hi Angel

I'm no doctor but do work in the NHS and go to a support group in London and we compare notes.

The CD 4 is similar to a neg person. The VL is high as expected as I warned. But they won't put you on meds until the CD4 drops to below 250.

The % is a bit low so you may get niggling complaints. You must avoid unprotected sex with such a high VL but then so should all pos people.

They will wait to see if your CD4 fluctuates before prescribing meds. Hopefully your % will go up. Over 30% is simillar to a neg person. It's a trade off. ARVS will knock your VL down to almost undetectable but once on you must stay on them, must like a transplant patient must take anti rejection meds.

The important thing is my communicate well with your doc. I smoke about 10 a day, it reduces stress for me, which I argue is more of a health threat. Even though my Dad died of Lung Cancer.

The money saved on ciggies will pay for a nice holiday mind.

 We are both lucky

Aldous

Offline nehusker4nu

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Re: scared shitless
« Reply #38 on: August 02, 2006, 08:09:17 PM »
Hi guy.
I completely understand how you are feeling. I was feeling the same way, but realized that since HIV has been around so many new medications have been discovered. Pepole are living long "normal" lives with HIV because of it. Just be positive about your disease and research, and explore it more so you can understand it more. I believe the more we learn about our disease and the more we know about it, "WE CAN FIGHT IT."

Keep your head up high and always remember that others are out here with it, going through it, living with it along with you. We are out here to help support you.  ;)

Always and Forever

Rob
nehusker4nu@yahoo.com

 


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