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Author Topic: This is all too much for me--how about you?  (Read 3927 times)

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Priscilla

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This is all too much for me--how about you?
« on: April 12, 2007, 02:21:50 PM »
Hi. I am newly diagnosed and trying not to go out of my mind. I am a 33 year old woman, single, no children, and a full time student living in NYC. I have a wonderful doctor who tells me not to worry, but I never envisioned this for my life. I was holding out on marriage and kids for the right time, and now I fear it may never happen. I am afraid that one day I will have to go on meds and everything bad will happen as a result. I am especially scared of this lipo issue. I am too vain for it. I am sorry if I sound insensitive, but I just have to be honest: I feel like I would rather die young(ish) and still beautiful than live with an unorganized distribution of fat and feeling ugly as a result of it.

I didn't ask for this, but I am sure many of us didn't. I became HIV positive through my now ex-boyfriend; we were in a committed 5 year relationship. I was tested before entering that relationship and I thought he was too. anyway, he came to me a few months ago and told me he was hiv positive, and I should get tested. We had remained and still are the best of friends, so when he told me his news I cried for him, and we cried together, but I was torn and angry- and I just knew the next day when I went for my test it would be positive, too. I could have become infected anytime between 2001 and 2006. I don't recall anything resembling seroconversion; I mean, I've had a few colds, but nothing remarkable. My numbers dont suggest anything, either.

 after I heard the dreaded words " you are HIV positive," applied to me, I  painstakingly "managed"  to be drunk a lot and still get my work in on time, and with A'S and B's. But, I have to deal with this. I have had my bloodwork done twice with my doctor in NYC and have 450 CD count and a viral load of 100. my first visit I was undetectable. so now I am worried cause I have a viral load. My doctor said not to worry. But I don't want to be sick. ever.

and I want a child so bad now. The more I read I learn the lower the viral load is the better for pregnancy. will I have to begin life long treatment if I get pregnant? I am in a relationship with a man who is not HIV positive. He knows my status. When I found out my status we were already dating, and had been good friends first for over a year. he wants to be with me, and says he wants to marry me and have a baby. is it still possible for me to have this life? I need the truth. part of me knows ANYTHING is possible, hell--a cure could be closer than I think. Are there any support groups in NYC that anyone can suggest I go to? I don't want to bother my doctor with all these issues, but I need to express my feelings and I don't know where to turn.  I get so ANGRY and I am sure I am devastated. My life has never been easy, and I can't help but feel sometimes like this is the cruelest joke the universe could play on me.

I am happy I didn't quit school, blow my savings, and end my life tragically, like I originally wanted to.  I have cut down drinking to the point where it isn't even an issue. I guess its hard because i have to keep a good face and I do not plan on ever telling my famiy or my friends.

I know this is long winded. thanks for your time.
« Last Edit: April 12, 2007, 03:41:18 PM by Priscilla »

Offline Andy Velez

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Re: This is all too much for me--how about you?
« Reply #1 on: April 12, 2007, 04:16:50 PM »
Welcome, Priscilla,

We're really glad you have found your way to our site.

Obviously you have been struggling with the shock of learning you're HIV positive. To answer you questions in a general and truthful way, I will say yes, absolutely it is still possible for you to have a good life and one which includes safely having your own biological children. And a good long life as well. Great strides have been made medically in making it possible to have healthy and HIV negative children. When you get ready to do that there will lots of support and information for you.

You've taken some of the right steps to make that happen by having your numbers monitored and being under your doctor's care. Having a good working partnership with your doctor is one of the best tools you can have to stay healthy. Gradually you are going to learn everything you need to know about HIV.

As you become more familiar with each of the sections here you can ask questions and of course feel free to bring up anything that's on your mind. You'll find members can be helpful and responsive.

You've raised some concerns such as about lipo. One can't predict as far as that is concerned but I will say that as with many other aspects of HIV, it varies widely. It's certainly not something you need be concerned with at this point.

It's good to read that you are in a loving and supportive relationship. That's another huge plus in staying well physically and emotionally, as you probably already realize.

So give yourself time to continue getting adjusted. Come here as often as you like. You'll be amazed at how much you can learn. And one of these days you may surprise yourself as you offer a reassuring welcome to someone who's newly diagnosed.

Again, welcome.

Cheers,
Andy Velez

Offline xyahka

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  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: This is all too much for me--how about you?
« Reply #2 on: April 12, 2007, 06:48:33 PM »
Hi sweety, well... i am also newly diagnosed. And believe me... i understand you so well, i also fear meds and the lipo thing. I understand you totally, but i want to tell you something... take your time.... listen, i also though in killing myself and though that my life would be just ruins... but you know... life is what we make out of it.

You don't need to have a bad life if you dont want to, but first thing you have to do is... look for help. I have done it and it helped me a lot, sometimes one feels one cannot talk to anyone about it. I went to visit a foundation here, and there was a psychologist there, she is quite young actually but such a good friend. She has heared me, saw me crying not only once, and gave me strenght to stand up and go forward, still when i fall... she understands me cause she knows this is hard. There are people open to help, and people that might have been here before... and you know... today in the blogs in this site i just found a story of a man who has 23years living with this, and i though... wow thats great!! I swear i can do it better!!! and you?

You can still marry, and you can have children, don't do all inmediatly lol, think about it... none wants to take bad decissions in a moment of desperation, make sure it is the right time, with the right person. Don't change your plans in life, cause you can still make them true. This is just a rock more in our path, but hey... we are fighters right? have we had troubles before? i am sure yes... so... one line more to the tiger won't make a difference right?. i am up for keeping on living and making out of my life the most wonderful time i have ever had... and i can do it, cause it is in my hands, same with yours. Don't lose the hope, look above and if you believe in someone out there... ask for help and believe me, you'll get an answer.

Other thing, don't think too much about future... you might loose the chance to make of your present the greatest time in life. Let's go day by day. ok? none expects you to get over this in a week, take your time... put your things in order, and re gain your reason for living, believe me... you can do it. I am still trying and slowly getting out of this traumatic process... and i still feel i can have a life, a good life. My body might be weaker now, but this has certainly made my heart stronger, same with yours. Keep the hope.

When a flying eagle finds turbulence.... the eagle does not struggle in it, it flies higher... where everything is clearer and calmed. Lets do the same. Big hugs from Ecuador.
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline allopathicholistic

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Re: This is all too much for me--how about you?
« Reply #3 on: April 13, 2007, 09:50:57 PM »
I don't want to bother my doctor with all these issues, but I need to express my feelings and I don't know where to turn.  I get so ANGRY

Priscilla, I'm giving you a hug right now. I strongly suggest you open up to your doctor about support groups because he/she might be very well-connected to the types of face-to-face support you're looking for. But if you keep silent, you won't find out. A wonderful doctor? Great!!! There's no law saying we can't ask infectious disease doctors to help with mental health issues too, or at least point us in the right direction. Mental health is important at all times and even more so with HIV. Most likely he/she will give you one or more referrals, and then you act on those referrals whenever you feel you're ready. This is NYC honey, patients asking for information on support groups is a common thing.

When I got my diagnosis in 2000 I was angry too. Now things are much better all around. I didn't tell my family until 2005. In my case, if I told them right away, I'm pretty sure I could have spared myself tons of heartache.

In closing, I'll give you another hug. Ask us anything. We're here for you.  PS. There are several ASO's (AIDS service organizations) in NYC where you can turn to for support. The largest ASO in NYC is named the GMHC, and it's open to HIV positive people of both genders, not just men. It's on 24th Street near 6th Avenue. The GMHC has advocates, many with years of experience and know-how, who will help you figure out how to keep your life together and not let it fall apart just because of this virus. How do I know? I went there and they helped me tremendously and my life hasn't fallen apart, although it has changed quite a bit. I know the GMHC has support groups for women because I read the flyers in the hallways and the flyers for women are usually on pink paper.
« Last Edit: April 13, 2007, 10:05:58 PM by allopathicholistic »

Offline otherplaces

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  • Mutant Super Hero
Re: This is all too much for me--how about you?
« Reply #4 on: April 13, 2007, 11:19:39 PM »

Hey Priscilla,

I'll drop in a HUG too!  Yeah, it's a horribly rough bit of news to receive.  But you know...we adapt and we can move forward.  I'll echo the above posts.  You have much life to live and life to give.  There really is no reason not to believe that.  And yes lipo...it freaks us all out.  But remember that lipo is strongly associated with the older meds.  And if it ever does become an issue there are avenues to deal with it.  Really it's an issue you should just put on the back burner.  Now's the time to focus on yourself, accepting the hand dealt and pushing forward.  My first viral load was 6,000...and that is pretty low w/o meds.  It all varies.  But if you have a VL of 100 without meds it is a great sign that your body is controlling the infection on its own.  You may not need meds for quite some time.  Side effects from the meds will vary from person to person, but I'll just tell you personally that I'm on my first regimen (Atripla) and the side effects are pretty much nil with excellent results.  So yeah, it will all freak you out, but don't get freaked out too much.  Relax and just take it one step at a time.  It sucks and is horrible, BUT you are a strong woman and I have no doubt you will find a level of strength you did not know possible!  We are with you.

Much love,
brian



Priscilla

  • Guest
Re: This is all too much for me--how about you?
« Reply #5 on: April 17, 2007, 12:19:51 AM »
Thank you all for your kind and supportive words, and all the virtual hugs! right back at you. I will take the advice given because if feels as if its coming from the best place possible: love and concern.

Peace out and c'ya on the boards. I am sending out a round of hugs, too!

xo

Offline allopathicholistic

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Re: This is all too much for me--how about you?
« Reply #6 on: April 17, 2007, 06:44:58 AM »
Thanks for checking back with us  :) Just remember, with the GMHC, bring paperwork proving you're HIV positive to them, otherwise you'll have to make a second trip.

You can send me a private message "PM" if you want

Offline kellyspoppi

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  • Posts: 153
Re: This is all too much for me--how about you?
« Reply #7 on: April 19, 2007, 10:30:03 PM »
Hi Priscilla-I saw this on my husbands screen & had to respond. Just so you know, my screenname is kellystiti, his is kellyspoppi(Kelly is our granddaughter)I was 32 yrs old when I tested positive. I had been living in NYC for 12 yrs. and moved back upstate after my 1st husband & I were divorced. I was trying to decide what direction I wanted to take w/ my life when I got the news. My 1st thought was "If I'm lucky I have 3 years." We didn't know what lipo was then, the images I feared wear lesions from ks & emaciated looking people on the verge of death. Luckily, I hooked up w/ a support group right away. Was I blown away to walk in and see all those "normal " looking people. That was 15 years ago this month. My current husband & I met at that support group. (He's been positive 21 yrs.) Unfortunately, they hadn't made the advances in preganancy & HIV soon enough for me to feel comfortable having a baby, but you're lucky to have been born at a time when that is now a much less risky option than it used to be. As for the vanity, I have been that way nmy whole life too. I won't lie to you, I have lipo and my body has changed compltely. But like a lot of things I've learned through having this virus, you are the one that makes things negative or positive. I have started to take a more holistic approach to my well being and even if it doesn't change my body, it's helping my mind. So, hang in there and hook up w/ other people w/ the virus for input & support. The most important thing I can tell you in closing, is that the most important med you can have is a positive attitude. I've seen people w/a good outlook live happier & longer that they ever imagined, including me.  Hugs, Cindy

Offline joyluckclub

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  • Posts: 136
Re: This is all too much for me--how about you?
« Reply #8 on: April 23, 2007, 07:35:46 PM »
Like you, I am in school.  It is not the end of the world.  You will have good days and bad days.  It will get better.  Take one day at a time.  You can still have just about all the things you wanted in life before you discovered you were HIV+.

I hope this helps.
"Honey, be who you is"  Madea.........

Offline tom_1950

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  • Posts: 2
Re: This is all too much for me--how about you?
« Reply #9 on: April 23, 2007, 10:59:58 PM »
I had my first results as well, June 10, 2005 and I was being diagnosed for shortness of breath and loosing more than 10 % weight in 3 months.  Of course the news was a shock, the emotions are endless from self pity to rage to give a f....  I battled with PCP, CMV, and other OI's trying to get the best of me.  My CD4 was 36 with a 3% count and Viral load of 100K.

Spent a lot of time reading the web and hoping to at least live long enough to put my life in order and prepare my wife and family for my passing.  Found religion, guess we turn to what we can.  The doctor and meds within a 6 month time got me back to above a 200 CD4 count and now I am at 440 CD4 with a 26% count and 0 Viral load.  Still have that fear of the unknown, but guess it would be the same with or without HIV.

You will find the strength in yourself and thru others to rise above this and live a long happy life.  You are at the right site for support.

Love and wish the best to be with you, Tom

 


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