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Author Topic: glad this forum is here!!  (Read 8186 times)

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Offline Lis

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glad this forum is here!!
« on: April 05, 2007, 10:19:00 AM »
I would like to thank all involved in starting this forum...

Today I'm making the long drive with my husband to the ID doc.. I always amazes me how nerve wracking this still is for me... I know the drill, all to well, and yet i think i would rather do ANYTHING then sit in front of him and go over the list of "how its gone in the last 3 months) All along knowing that nothing will change..

my insurance has changed and i have to go to a differant lab to get blood drawn... the problem there... Its the same company that the clinic i work for uses.. thus... I know many of the employees, thus... so much for confidentiality... OH well!!


thanks again for the new forum!!

lisbeth

poz 1986....

tendai

  • Guest
Re: glad this forum is here!!
« Reply #1 on: April 05, 2007, 11:05:31 AM »
u can say that again... ever since my doctor said i have to start meds i feel like telling everyone and be damned so it wont matter who knows whether its my co-workers my family etc. problem with these places is u never know who u will bump into.  like my doctor says i have to go the government run OI clinics coz the meds are cheaper there and i am dreading it. i can imagine the crowds, queues and the waiting etc. makes u wish they'd build underground facilities known only to POZ people who need to use them. not these public hospitals and clinics. i work in a clinic and when i go for my bloods its the same staff. so i just grin and bear it and act normal. i mean noone will say to my face "what? u have HIV?" or anything like that.

Offline mscaramelle

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Re: glad this forum is here!!
« Reply #2 on: April 05, 2007, 01:22:54 PM »
Wow, was this forum here yesterday? cause I didn't see it.   Terri in Canada here.  I get my tests done at the hospital clinic and its not just for infectious diseases so I walk in proudly.   I have been positive for just over a year.  My ex-fiance purposely infected me, and now come to find out, 3 others after he took off.  So, I pressed charges and he has been in jail for over a year.  Anyways, I just wanted to say that I too am glad there is a forum here for just women.   

Will definately check in later!

Mscaramelle

Offline Lis

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Re: glad this forum is here!!
« Reply #3 on: April 05, 2007, 05:49:30 PM »
well.. things at the lab were pretty funny... I had to help the tech order the proper tests.... HEHEHE.... perhaps that is JUST the medicine i needed!!!

All is well.. I wish for F#%k sake they would stop telling me to get a mammogram... I told the doc again today that i wouldn't treat even if i had cancer... GEEZ... he still doesn't get it!!

lis
poz 1986....

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: glad this forum is here!!
« Reply #4 on: April 05, 2007, 06:02:59 PM »
A mammogram is something they haven't insisted on for me... yet. Do they recommend we start them earlier than hiv negative women? (cuz I know you ain't that much older than me, Lis, if at all!)

Wondering...

Ann
xxx
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Lis

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Re: glad this forum is here!!
« Reply #5 on: April 05, 2007, 06:11:41 PM »
Ann,

They want ALL of us.. poz or not to start at 40.... (I'll be 41 in a couple weeks)  so Im a couple behind according to them..

poz 1986....

Offline Christine

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Re: glad this forum is here!!
« Reply #6 on: April 05, 2007, 06:18:59 PM »
Hi Lis,
I was just going to ask how your appointment went today, then I read your post.

Isn't fun sitting there, while people question everything- talk back and forth. I let them go for awhile, then I pipe in. Purple top...lactic acidosis on ice...

Christine

Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Lis

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Re: glad this forum is here!!
« Reply #7 on: April 05, 2007, 06:27:24 PM »
LOL at christine...
I sat there until i heard him bitch X3... then I asked for the test book.... LOL.. shame on ME!!
poz 1986....

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: glad this forum is here!!
« Reply #8 on: April 05, 2007, 06:30:43 PM »
Ann,

They want ALL of us.. poz or not to start at 40.... (I'll be 41 in a couple weeks)  so Im a couple behind according to them..



Ah, well according to those guidelines, I'm over four years overdue! I think the guidelines may be different in the UK - I'll have to check. Or maybe not. I hate the thought of getting my boobs squished in that vice-like machine! :(

Thanks for the info, Lis.  :-*

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jody

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Re: glad this forum is here!!
« Reply #9 on: April 05, 2007, 06:47:09 PM »
I don't want to be a "budinsky" as I know this is a forum for women to discuss issues prevalent to women on their own...Growing up with a name like Jody many folks assumed I was a woman and I still get mail occasionally to Ms. Jody....Anyway best of luck with your new safe place and here's wishing you much support, love and info going around...As Saturday Night Live's Linda Richman used to say: "Go ahead, talk amongst yourselves"

Jody  :) 


P.S....I won't bother you again !!!  ::)
« Last Edit: April 05, 2007, 06:50:02 PM by Jody »
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Lis

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Re: glad this forum is here!!
« Reply #10 on: April 05, 2007, 07:04:10 PM »
I love you Jody.... butt in whenever you like!!! (god I miss your face  :-* )
poz 1986....

Offline IzPoz

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Re: glad this forum is here!!
« Reply #11 on: April 05, 2007, 11:20:49 PM »
Ah, well according to those guidelines, I'm over four years overdue! I think the guidelines may be different in the UK - I'll have to check. Or maybe not. I hate the thought of getting my boobs squished in that vice-like machine! :(

Thanks for the info, Lis.  :-*

Ann


Getting a mammo done isn't a big deal really.  At least for me.  Then again, I'm not that well endowed, so the machine doesn't have much to squish.  I've had a couple done already, and I'm not even 40, lol.  Even had sonograms, and I personally think those are worse (all that gel, yuck!!).

However, I hear they are considering changing the guidelines to women over 50, or something like that.  Just food for thought.
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.

Offline sweetasmeli

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Re: glad this forum is here!!
« Reply #12 on: April 06, 2007, 07:46:15 AM »
A mammogram is something they haven't insisted on for me... yet. Do they recommend we start them earlier than hiv negative women?

They want ALL of us.. poz or not to start at 40.... (I'll be 41 in a couple weeks)  so Im a couple behind according to them..

Does anyone know if this is just a US thing or a UK thing too?
Still a few years to go for me but just curious...

Melia
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline penguin

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Re: glad this forum is here!!
« Reply #13 on: April 06, 2007, 03:47:14 PM »
melia -
uk screening protocol remains the same (ie, every three years for women >50) sometimes, where there is considered to be a high risk, like family history -  or if symptoms, like lumps etc need investigating - women will be offered earlier/more frequent screening, either via mammogram or alternative imaging. They chose 50, as this is avg age most uk women experience menopause - they aren't as effective in younger women cos the density of the breast tissue makes it harder to detect problems (& incidence of breast cancer is lower anyway) In post-menopausal women, glandular tissue involutes (er, kinda folds inwards)& the proportion of breast tissue made up of fat increase. This makes the results of the scan clearer & easier to interpret.

interesting study presented at 2005 AACR showed that pre HAART, hiv+ women had decreased incidence of breast and uterine cancer - approx 30 and 40% respectively - possibly due to changes in hormone levels, and/or hiv's presence limiting the uncontrolled cell growth that happens in tumour development...unfortunately, this has kinda levelled out since combo started being used. Bit on this here, can't seem to find the proper study results..

kate

« Last Edit: April 07, 2007, 02:00:46 PM by penguin »

Offline sweetasmeli

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Re: glad this forum is here!!
« Reply #14 on: April 07, 2007, 11:01:36 AM »
Thanks Kate ;)
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline cordelia

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  • Posts: 8
Re: glad this forum is here!!
« Reply #15 on: April 07, 2007, 01:39:14 PM »
Hi All,

Regan from POZ here...

I am so excited about this new forum - just wanted to drop in and say hi. I posted a new blog this am and referred to this women's forum - so hopefully we'll get more gals to join in soon. Of all the positive people I talk to, women seem to be the most isolated, overwhelmed, or, often, both.

On the subject of mammograms, the only hilarious part of my visits to my HIV docs over the years have been the moments they've asked whether I want them to give me a breast exam. As most of my docs have been gay men, I always say yes, for kicks. One doctor (I was one of his first women patients) said mine were the first he'd ever touched! Needless to say, I made an appointment with my OB/GYN and got "properly" examined.

My new tactic, as I drink so much Diet Coke and have cystic breasts, is to skip ahead of the mammogram and get a sonogram. It's another good diagnostic tool and it doesn't feel like someone's slamming your breast in a car door. Repeatedly.

Early detection equals survival - both for breast cancer and HIV...I might have to do a coin toss to determine which is more nerve wracking: waiting for results of breast tissue biopsy or awaiting results of HIV test...I might even throw the Pap smear in there for a run at the money...but the point is, we should (those of us who are already positive) get mammograms and Pap smears at least annually.

Being a woman can be hard. But, hey, at least we're not grown men being targeted by the NYC Department of Health...who plan to push circumcision as an HIV "prevention" tactic...I think pitting removal of the foreskin wins over a little ole mammogram when it comes to painful procedures that can possibly keep you healthy...

; )

Regan

Offline penguin

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Re: glad this forum is here!!
« Reply #16 on: April 07, 2007, 01:59:20 PM »
hello, Regan  :)

Melia/Ann - some more info here about UK NICE guidelines for screening (incl women < 50) & other risk factors

Kate

Offline stronggirrrll

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Re: glad this forum is here!!
« Reply #17 on: April 10, 2007, 09:55:43 AM »
Hello all and glad to see everyone here!  I've been poz for 17 yrs, but became full blown in 2002, had 3 lonely t cells and a vl of 500,000.  I am very out and open in my community about having Aids.  I've spoken at my son's school and our community college.  I've been in Poz mag twice, once after I first got diagnosed, about pets and us guys, and the other last year, about us and our finances (yes, I'm the one who maxed out all my credit cards because I didn't think I'd be around to pay! :o)  Theonly thing that always makes me feel alone in this fight is that I'm gay.  I've been with my partner for 15 years, she's negative, and I used to think that I got left behind. :-\  I'm waaay over that now, I am an Aids Peer Counselor for our local Health Department and I used to feel like the "Aids Poster Child" since I was open about my status/lifestyle. 

I know that it is different for everyone in 'coming out' about your status. Belive me, the more people close to you that know, the more people that can be in your support system!

Take care everyone and know that there is always someone thinking about all of you . . . .(me!) ;D
"If I bring forth what is inside me, what I bring forth will save me."

tendai

  • Guest
Re: glad this forum is here!!
« Reply #18 on: April 11, 2007, 07:46:51 AM »
[quote author=stronggirrrll link=topic=10969.msg139459#msg139459 date=1176213343

I know that it is different for everyone in 'coming out' about your status. Belive me, the more people close to you that know, the more people that can be in your support system!


[/quote]

i do the coming out on a 'need to know' basis.  i cant bring myself to tell anyone of my status if their knowledge of it has no significant benefits to me or them.  its not everyone who's supportive. some people just arent comfortable around it. i was about to go into a relationship with a guy and when i told him he said " sorry about that but it wont push me away from you". and guess what? i  havent heard from him since then.

Offline swede_dish

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Re: glad this forum is here!!
« Reply #19 on: April 12, 2007, 04:26:31 PM »
hello! I think this forum is a wonderful idea! I will definatly be frequenting this board!

Love to you all,
Swede
"I married a German. Every night I dress up as Poland and he invades me. "
-Bette Midler

Offline 2Live

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  • Posts: 2
Hello everyone out there - I'm incredibly happy to know there is a section for us here.  I have to say since finding out im + for 4 mo. has incredibly been draining on all aspects (spiritual/mental & physical).  I never thought this would happen (but who does).  I let my guard down w/ someone I truly trusted in a committed relationship with for 3 yrs. & he has transmitted this to me & he does not know yet. I havent had the courage to tell him.   But I know he has this & am afraid he will not understand upon me telling him. I think he's a carrier who still does not know he has it b/c he does not have any symptoms.  That's so scary.  I found out b/c one day going to the dr.'s for a routine physical, they told me my WBC was lowon my blood test & I did not think anything of it.  1 mo. later I find out Im +.  My life has now changed in a blink of an eye, literally.  I went through the bouts of side effects from the meds. (truvada/norvir/reyataz). lost alot of weight due to vomitting & diarrhea. Now I'm better but in the last 2 mo. my hair is thinning & falling out at incredible rates. It's very obvious & it's starting to affect me b/c Ihave to go to work in a corporate setting _ I really cant where a hat (smiling) @ work.  Is this temporary or will I end up becoming utterly bald??? Glad u guys are here. God Bless all out there in the fight & the struggle to persevere w/ this "+" journey.

Offline zachysmom

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Re: glad this forum is here!!
« Reply #21 on: July 06, 2007, 03:09:54 PM »
About the hair loss, I had something similiar to that, I starting having hair loss and/or thinning after I  had my son.
Doctor said it was normal for hair loss in post pardom. However I continued to have it well after the 6 months "normal" time after delivery. I can only atribute it to meds. Try hair thickening shampoos, gels, creams, whatever might work. That's all I can do. Bumble and Bumble makes a hair thickening spray that works pretty good for a temporary fix, But it's alittle pricey.
Good luck
Nicole
From Russia with love,
Nicole

Offline Queen Tokelove

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Re: glad this forum is here!!
« Reply #22 on: July 06, 2007, 09:51:48 PM »
I love this forum too. Great idea, whoever came up with it. I wish it was as active as the other threads but I comment when I can. My doctors keep mentioning the mammograms to me and I'm 38. I thought it was suppose to start at 40....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Blessed1974

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Re: glad this forum is here!!
« Reply #23 on: August 26, 2007, 07:30:14 PM »
Hello all :)  I was surfing the web last night and stumbled upon this site and I just wanted to say hello and that I'm glad there is a website for us women!

Offline Queen Tokelove

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Re: glad this forum is here!!
« Reply #24 on: August 26, 2007, 10:06:33 PM »
Welcome to the Forums, Blessed. We have an Intro thread here as well when you feel ready to introduce yourself to the rest of the ladies.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Paulette

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Re: glad this forum is here!!
« Reply #25 on: September 22, 2007, 03:00:39 PM »
I was reading over the other post and from my experience;
always do monthly exams that's how i found the first lump at the age of 33, which turned out to be an infected lymph node, and on my last mammo they found two more lumps which they are monitoring. our yearly paps are also important, because i was told by my doctor that because of me being positive that it increases my chances of the big (CA), which i was dx: with cervical ca. 10/2006 they took it all out but the ovaries(thank-goodness for that)

and like most I'm so glad that i found this sight just for women, i feel safer on here than on some of the others.
Thanks Again Ladies :)
I have HIV; it doesn't me;)

 


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