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Author Topic: Beehive  (Read 12621 times)

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Offline srmn98

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Beehive
« on: December 12, 2007, 04:36:24 PM »
BEEHIVE

Be Educated, Encouraged, Having In-depth Vital Exchanges

Welcome to the BEEHIVE.

A thread to fly in and out of where you can Be Educated and Encouraged while Having In-depth, Vital Exchanges.

Two of us chatted offline and realized we wanted to have a women's thread for delving deeply into topics related to living with HIV.

We want a thread that's got substance regarding issues like politics, activism and funding, but also includes coping, disclosure, meds, stigma, children and goal setting.

A place to rest your wings, share your buzz, even your stinger if you must. A place for can do and candor where we can jointly explore views.

Over time, we hope the honey made here will be sweet enough to satisfy and sticky enough to make you stay.

Sara and Em

Offline srmn98

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Re: Beehive
« Reply #1 on: December 12, 2007, 04:37:19 PM »
Hello everybody. Im looking forward to this new thread. There are lots of things I would like to talk about --  but one that has been on my mind over the past week or so. Its a bit heavy but please keep reading maybe in the end it doesnt have to be.

I had a friend die from cancer last week. From the time he was diagnosed with cancer to the time he passed was less than three months. It was unexpected, quick, devastating. We asked him as he lay in his hospital bed waiting for more morphine Are you in pain ?  Oh yes, he answered, every day.

His words haunt me. They speak deeper than my friends cancer. His words echo many of our physical and mental struggles with HIV but also speak beyond any one individual. His words speak of the harshness of the world of all suffering within us and beyond us. And as I sat in the hospital room with my dying friend that morning, thinking about all of the suffering in the world, feeling sorry for myself, I began to see the world a little differently. My friends friends started showing up, maybe 9 of them in total. They came to support my friend --their friend too, as he lay in his hospital bed. They helped him try to drink water. They held his hand. They told him they loved him. They laughed. They cried. They sat silently. They told stories. And they stayed by his side day in and day out until his last breaths. And still, they stayed together as a make-shift family, to plan a memorial.

The whole experience changed me. Ive been nave. Ive been selfish and sheltered. Ive not always been able to see how giving and loving humans can beI have too often focused on the suffering end of things, on how unfair life and death can seem. How unfair HIV seems. But now I have this new vision of how giving and loving people can be. Yes, the world is full of suffering but also full of love. (I think Hellen Keller said something along these lines --  the world is full of suffering but also full of overcoming it ) So I want to move beyond my personal struggles and find a way to make the world better. Im not saying it has to be something grandiose but just something that will help somebody other than myself.

Day to day, HIV remains a struggle for me. I am often so ANGRY that this virus has taken up a home inside my body. Im tired of it being inside of me, I want to pull it out free myself of its hold.

But Im working on channeling some of this anger and hurt. I have a few different game plans for doing this --- this forum being one of them. Im hoping that through discussions and other peoples experiences we can all have healthier bodies and minds. Ive started doing yoga regularly. It helps mentally and physically helps me feel more relaxed, less anxious, and stronger both physically and mentally. Im a working photographer and am looking for ways to use my art to explore my relationship with HIV. I want to find a role as an activist I want to find a way to disclose openly to friends, family, perhaps even strangers --  but all in time.

To sum it up, what are your coping strategies ? How do you manage from day to day ? How has time with this virus changed you ? Did you get involved with activism ? Was there a turning point besides your actual diagnosis that changed your perspective ?

So Im hoping some of this might be a springboard for you to share some of your stories . So that this thread might find a rhythm, a buzz and a deeper understanding of each other and ourselves.

Thanks,

Sara


Offline emeraldize

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Re: Beehive
« Reply #2 on: December 12, 2007, 05:40:31 PM »
Wow. What a voice you have, Sara. What a clear, passionate voice.

Your post deserves a thoughtful reply and I'm reminded of Tim (thunter)who will sometimes post to say he's coming back later to post in detail.

I'm actually typing with rubber gloves on my hands! I am up to my near-elbows in a chicken-with-head-cut-off-approach to the last projects necessary before leaving Friday morning to pick up my daughter-to-be.

You asked about coping strategies and I have a couple I want to share. And, I'm interested in a strategy exchange --maybe better than cookies, certainly lower in calories!

Anger--oh yes, I've got anger. And, joy, I've got a bunch of joy. Perhaps most important to me, at the silver-lining level, is where I've journeyed as a direct result of contracting HIV.

So, I'll be back, later tonight. Thank you for initiating this thread. Perhaps it should be sub-titled Honeycomb I? 

Imagine a fluted glass with a lovely, sparkly, non-alcoholic champagne poured in it. Confetti. No Martha Stewart matchy-matchy bees on the napkins, or honey on the hors d'oeuvres. Good bread and warmed brie. An upbeat jazz number in the background.

Clink! Congratulations. I've been wanting to sit in an e-kitchen like this for a couple of years.

Em

Later that same evening...

I'm sorry to learn you lost your friend. I'm glad you got to be with him, see the way his friends interacted with him and that you all have each other to lean on.

The gift is that it was catalytic for you. Now you're looking at ways to let your artistry through photography help and inspire others. Fine outcome. Your friend would be pleased.

Coping strategies. My main coping strategy regarding HIV was to get active in it---I hated hiding and being afraid of what others would think. I've not taken out an ad in the NYT, but I'm out with enough family, friends and strangers that it doesn't matter as much to me. HIV is a small part of who I am, but it's become a driving force in much of what I do.

I was diagnosed in August 2003. Soon after, I became and still am active in the Consumer Advisory Board of the clinic I attend. I participated in various community events. Once I realized I was not on a rapid decline and that things were holding, at least for a while, I became and still am a participant in research projects at a local university, MGH and NIH.  I sought employment in the field of HIV and was elected recently to an ASO board.

Within the last two months, after being moved by an article Daschund posted about increases in infection, I was trained and certified to do pre- and post-test counseling. Next up, is some OraSure/OraQuick training and I'll be ready to launch with whatever group needs me. I see testing as an integral part of prevention and it's a way I can put my experience to work.

Thanks in large part to Mouse doing some awareness posting about the ENDA issue, I got active in that which helped me transition to being involved in the HIV Travel Ban issue. I'm typically quite apolitical, but I realize that's not a way to see change occur. I'm learning. Through the variety of people here, I'm opening my eyes and mind to all sorts of areas related to HIV that need attention. I can contribute only a small amount of time, but it's important to me to do whatever I can.

These are ways I cope. At the core of all of this is the premise that I'm optimistically inclined to make the best outcome of being diagnosed positive. I'm just going with the positive part, f the hiv. August 20th was the penultimate in f'd up days, but I knew I'd better stay busy or go mad.

This site is very beneficial to me. I don't attend a support group and I find this keeps me in touch with other positive people. I learn so much here and the site teaches me how little I know. The value of collaborative information sharing is what I find so important here. This is an extraordinary human database.

Oh, and the humor here has made me laugh until there were tears. Humor is a big part of the way I live in the world. It offsets my sometimes too serious side.

It might be age, or HIV, or a combination of both, but I realize how important it is to try to steer clear of situations that will toy with my immune system. Staying away, as much as possible, from stress-inducers is key.

It's ironic to me that I stopped smoking, drugs and drinking 16 years before my dx...in a way, I was never healthier and then HIV Airlines came in for a crash landing. So, I intend to keep things static as far as habits go. I can now justify (cus I'm poz and I dezerv it) downing a batch of Ben and Jerry's quicker than anyone, but I try to balance it with decent, not fanatic-style, eating and as much motion as possible---particularly walking and stair climbing. I add to that as many opportunities to lift things as possible---furniture, 50# bags of salt, and gardening/mowing.

Yoga would be great. It is great, but I haven't worked it in yet. I attended classes pre-dx and it's a great stress reducer. Maybe I'll try again in 2008.

Turning point. It wasn't a switch being flipped, but it began to occur when I realized I was self-stigmatizing. I was buying into the concept of being untouchable and unlovable and was crawling farther and farther from people. I realized I couldn't become more at ease with this acronym unless I scaled it down, backed it down, throttled it, by telling enough people that it just became a simple fact not quiet, protracted terror. And, I also realized I sure as hell couldn't do what's meaningful to me, in terms of helping others with HIV or keeping them away from HIV, if I wasn't able to be out.

Evidently, there's misinterpretation over the start of another venue for communication. This is an open site, a women's forum and an open thread. The goal is to have choice and be able to discuss issues outlined in Sara's initial post. It's simply a different direction than an emphasis on dating and no negative comments were made. I feel free to go to any thread and looking is not lurking. Lurking, to me, carries a negative connotation. There are many visitors to the site who report taking a long time to finally post...they were looking, deciding, envisioning, much the same as window shopping.

I'm bouncing off the springboard and back on task.

« Last Edit: December 13, 2007, 12:11:41 AM by emeraldize »

Offline Ann

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Re: Beehive
« Reply #3 on: December 13, 2007, 07:53:46 AM »

Turning point. It wasn't a switch being flipped, but it began to occur when I realized I was self-stigmatizing. I was buying into the concept of being untouchable and unlovable and was crawling farther and farther from people. I realized I couldn't become more at ease with this acronym unless I scaled it down, backed it down, throttled it, by telling enough people that it just became a simple fact not quiet, protracted terror. And, I also realized I sure as hell couldn't do what's meaningful to me, in terms of helping others with HIV or keeping them away from HIV, if I wasn't able to be out.


Hi Em,

You might be interested in reading this article, which was published last February:

http://www.aidsmeds.com/articles/1667_11327.shtml

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 cjc

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Re: Beehive
« Reply #4 on: December 13, 2007, 08:08:27 AM »
Hello. I think this will be a good thing.I  read your post, Sara. I have watched 2 family members die from cancer and it is a humbling experience.                                                                                          I have a lot of anger but most of it is directed inward.   I just try to ignore it most of the time. I guess my coping strategy is to isolate and keep to family. Not the healthiest way to deal but it's what I manage.            I am not into activism but hope I can learn something about it from you ladies. I cannot be out about my status because I must also consider my family.  I am looking into doing some volunteer work in Greensboro for some local HIV/Aids support services or maybe even taking advantage of some of those services myself.                         Not much else to say, I tend  to stay fairly quiet but wanted to post.   Cristy

Offline wishful

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Re: Beehive
« Reply #5 on: December 13, 2007, 10:16:52 AM »
Wow Sara what an articulate woman you are. I really appreciate this thread i understood completing the reasoning behind. Good JOB...
 Anger: Not much. I came from a home with a lot of lets say challenges. My parents were heroin addicts and my quality of living was really poor: We barely ever had food, we lived without water, without a stove, and i barely had clean clothes on my back. All the while growing up i promised myself that i would never live that way again and most importantly i would never take any kids of mine through that hell. My childhood made me strong, and i believe that it prepared me to live and deal with being HIV positive. When i found out my status i was hurt and sad more than anything else. I wasnt particularily scared because i had some experience with HIV. My mother is HIV positve. She was dg i think in 1995. I found myself doing alot of research on the subject for myself as well as for my mom. I was more hurt bcus at the time i pregnant and in florida , a place where i had no family but moved with my kids father hoping for a better life 1. and 2. a change of scenery would help him to not cheat on me anymore. I trusted him, i loved him more deeply i find now than i even loved myself. We were technically broken up when i became pregnant with our youngest child. I believe that it is bcus of her i am still here and not sick. If i had not became pregnant i wouldve never gotten tested and judging by my numbers when i found out..It couldve been tragic. Although i was tested i believe in the acute stages of HIV, and the immediate rise of my cd4s after starting meds, proved that. i started out at 270 and i am now over 1300. But i really doubt if i wouldve gotten tested unless i was pregnant..She is my lil angel!!!!
When i told my kids father of the test result , he immediately apologized. He claims he didnt know.  :-\..who knows..But with all that on my plate i needed him or at lease i thought i needed HIM there as opposed to anyone else. But he had moved out and was still seeing the girl he cheated on me with and he wasnt about to tell her that. So i was alone in coping with this. My oldest was 10 at the times and our son was 1 1/2. I saw the girl one day at church and to her amazement i was pregnant, i decided to tell her about being positive and where i got it from but of course he denied it. Denied the HIV and also my baby girl. He had told her he wasnt sleeping with me and that couldnt be his baby and that i was only telling her I had HIV bcus i was jealous of their relationship. To my amazement she believed him. So i got help from some organizations and i met someone in my same boat. She needed a place to stay and although i just met her i let her in. We are still friends today although she is back in florida (oh wheni moved back home to Jersey she came with me). So when i got back here I was still more feeling hurt that he abonded us the way he did and left me to deal with somehting so heavy on my own. I dont blame him for the HIV bcus i chose to have unprotected sex with this man KNOWING he had cheated on me. But i do blame him for the abandonment.
Activism: i know i am strong enough to do it. But i think about my daughter who is 14 now and what her friends would think. I am struggling enough with her teenage attitude and i really dont want to add fuel to the fire. Its in my belly tho, everytime i hear someone say somthing negative about AIDS or somebody having the "shit", or any of the hideous names people call it in my community. One day i will, I promise myself .I know i could make a difference.
Disclosure: Wow..im kinda in the same boat as Queen on that one. First of all im scared. Honestly, I cant say i fear rejection bcus he obviously isnt the one for me if he cant deal with it, but i am scared that the one that rejects me will tell everybody and their momma. My town is not that big. Thats my biggest fear and being that people are still so very uneducated about this virus, I know alot of nasty things can and will be said and i would hate for it to get back to my daughter and embarrass her. Im Strong as hell and i know it , i fear mostly for my kids. ANother fear i have is looking sick. I kinda get into a slump where ill start thinkin like damn one day ima gonna go thru the facial changes and things and everyones gonna know anyway. i soothe myself by counteracting that notion with well my kids will be grown by then, i can handle it.( I stay counselling myself..lololo) but thats how i deal. I know this is long but if u have read this far i really appreciate it.

Thanks again for this thread!
Live life to the fullest...

Offline emeraldize

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Re: Beehive
« Reply #6 on: December 13, 2007, 10:40:32 AM »
Hi Em,

You might be interested in reading this article, which was published last February:

http://www.aidsmeds.com/articles/1667_11327.shtml

Ann


Hi Ann

Thank you. Yes! I read that article in POZ and others on the research with great interest. In fact, I hope anyone reading this post takes a look.

It confirms we affect our immune systems. I think at a certain animal level we know this, but I know I tend to forget and need to be reminded of ways to strengthen my immune system.

I had a good example of this(although not truly statistically significant from a trend or med team's perspective) this year. Between my April and October CD4 counts I jumped 200+ and it was after leaving a stressful situation.

Em

Offline ubotts

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Re: Beehive
« Reply #7 on: December 13, 2007, 11:10:24 AM »
thank yoiu for the invite.

I am always willing to talk and share my life with anyone who will listen..
Here I found an ear or a couple of ears..

Excuse me while I get another cup of coffee..
Ive been so tired lately, maybe its due to the change of different meds, maybe its the
rainy weather..I dunno...but I gonna get that cup of coffee, and try to pick myself up
then maybe I will post with a clearer mind..

Ill be back....sip sip..... ;)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline ubotts

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Re: Beehive
« Reply #8 on: December 13, 2007, 11:45:23 AM »
OK had my coffee, lets see if I can do better now..

Sara I am truly sorry for your loss..
I also have lost my brother, my lover of 10 yrs and so many friends from cancer and hiv
or hep c...

I am blessed with being co-infected..I have hiv and hep c..
So when I am tired I really don't know if its the hep or the hiv..

The end of this month I go in for bloodwork, and my last bloodwork, they said my hep c
numbers were though the roof..
So They put me on different meds, but I know for sure, they will want to do a biospy
on my liver to see what stage its in..

If i have to go on inferon...ugh..I dont know if i will do it..
I have to inject myself 2 time a day, 3 times a week for nine months..then wait 6 months later to see if it worked..

My cousin did it and he wasnt co infected..he only had hep c..He was good for a year.
Showed no virus and was very happy it took..

A year later it returned ..he was all bummed out and started to drink again..Not a good
thing to do to your liver....but he was disquested..

His wife also has hep c..She did the whole thing as well..so far so good..time will tell.

I am just wondering, if a person who only has hep c doesnt really stand a chance or
getting cured from hep c..
whats a person like myself to think.....Oy ve..Many more complications on my part.

I have been hiv since 1987 and didn't take meds till 2002 because I  saw what azt, the only drug out then, did to my ex lover...
It was horrible..
I had to watch my ex go from strong and beautiful to a walking skeleton...It was so
hard on me to see this in the 80's when very little was known about hiv..

I started my meds when my tcells were down to 26, and vl was sky high..
I knew it was my time to take meds, weather I liked it or not..

Here I am almost 6 yrs later, and my body has changed completely...
I want to world to know, that we are still living, but the side effects are killing me slowly
mentally and phycially....

I really wish I had a time machine ..I would race to 30 yrs from now to see how far
they came with conquering aids and hep c, then Id bring it back to the year of 2008 and
share and spare everyone with one good pill or vaccine to halt these dreaded disease..

OK..Now who wants to line up and get there dose of no more aids or hep c in the world
as we know it..

OH BTW, I am first OK.. ;) the rest stand in line and ill give you all what you have been wanting for years..

Look at me trippin out here,, Ahh..its nice to dream...isn't it..
For without dreams we would have no reason to go on...

Just my opinion.........wishing and dreaming aren't going to cure us, so take a stand,
speak out and lets get this ball rolling..

I have worked in a hospital after my ex died..I worked on the aids floor..
I had hiv, but wasn't sick at the time, so I figured let me help others who are like myself.
I did that job for almost 2 years, then I became so draining for me..
I would go home and say ..is this what I have to look forward to??? scary...

I met some of the nicest people there and got close with them, and the next day
when I went to visit them again, the bed was empty..Another bites the dust.
And this went on and on, so I had to stop ..I couldn't take losing so many young people in so short a time..

I tried to be an activist, but at that time, I backed off..

Now I know much more than I did in the early 80's and see the change in medicines
that keep us going, which is a miracle in itself..
Now its time to stop the side effects, by speaking up and letting the world know, its
us women to who have problems..
It seems like most men have lipo in there face, while women are different, we get it
in our legs and arms..then the big belly...
Ha.. that got me a seat on the bus one day...They thought I was pregnant :-[..

Anyway..Lets try to get to the heart of this matter by letting it all out and standing up
for one another............OK my little beehives...... :-*

Once again thank you for inviting me into your group...now ill get off my soapbox and
let others speak..ciao
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline englishgirl

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Re: Beehive
« Reply #9 on: December 13, 2007, 05:54:01 PM »
hi ladies
firstly, THANK YOU for starting this thread, for giving me a reason to log back in.
secondly, sara, im really sorry about your friend, but im glad that you shared the experience with us and have gained from it in some way.

in answer to your question posed, i think that em summed up very well part of my response too when she said:
My main coping strategy regarding HIV was to get active in it---I hated hiding and being afraid of what others would think. I've not taken out an ad in the NYT, but I'm out with enough family, friends and strangers that it doesn't matter as much to me. HIV is a small part of who I am, but it's become a driving force in much of what I do.

in my case my unconscious/subconscious coping strategy regarding almost everything that has ever hurt me has been to put it out there. and hiv has been no different. to start with it was drunken disclosures to all and sundry, which obviously isnt a great idea but i dont believe in ever regretting anything you do cos you can always learn from your mistakes.

i was lucky enough after diagnosis that there was a support organisation to go to. i was diagnosed on a thursday, so on the friday i turned up there and just let them do what they are there for. at some point - 6 months in? - i was lucky enough to get a place on a pozzies course based around the expert patients programme, which lasted ten weeks and was ten of us and 2 tutors. the topics covered were around coping, fears, healthy living, and practical stuff too. the programme itself is generic and can be used for/tailored to any long-term health condition. i recommend it to anyone who gets offered anything of the sort. it totally changed the life of one guy who is now a trained tutor himself and is involved in support and awareness work. once ive finished my present uni course im hoping to get trained up too. it really can change people's lives, or rather the way they live them.

one thing that i learned pretty early on was that in a bizarre way after having suffered from horrible depression and wishing i was dead (or at least comatose) my whole life this actually gave me something to fight against. im not saying i dont ever have those feelings now, but i have this contrary part of me that says 'no way im killing myself i'll stay alive and suffer the misery of waking up every morning just to beat this stupid disease and appreciate what i have'. crazy huh? when i compared this with how others on my course felt i almost felt lucky as having something so awful happen actually stopped in some way the feeling of the awfulness of my existence.

i had an experience pretty early on with some other service users which really shaped how i viewed things. a lot of people where i live are asylum seekers and one drop-in session the discussions really brought home to me how desperate their situation is. people who are basically fighting for their very survival as if they get sent back they will probably die very rapidly. that night i went home absolutely distraught. i felt so guilty that because of where i was born i would probably live and they would probably die from the same disease. i felt so guilty and so helpless and just couldnt shake it. i spoke to someone about how i was feeling (an african himself) and he said to me "you need to get over it. life isnt fair that's just how it is. you will only be able to cope if you realise that". i hated him for that, i felt he was so cold-hearted. but after a while i realised he was right. and also that he wasnt saying we should accept things how they are; he was saying that we had to realise that we cant change the whole world and what goes on in it.

im lucky in that because i have been open about my status i have benefited from the support of my friends. obviously this isnt always enough on its own as they have their own lives and troubles and it's a 2-way process, and sometimes we need the professionals whose job it is to be there and help and advise. i was unlucky for a while in that all our local support was decommissioned for a fairly long time, and i realised the importance of having them there. one of the things that i have really enjoyed and benefitted from is trying to get active in changing this. finally services are back up and running and im trying to be as involved as i can, as i get a huge amount from being involved. one of the best things about this whole hiv diagnosis is that it has given me the drive and the opportunity to do things like volunteer work and political activism that i always wanted to do but never got round to in the past. in that way it is almost like being a teenager again - having a cause that you feel passionate about and actually do something about.

for a time this site really helped me when i had nothing else. thank goodness. and in variety of experiences and opinions this is hugely more diverse. unfortunately there has been some time since then when i have been made to feel less than welcome by some comments and PMs i have been on the receiving end of, accusing me of being things that are just not true. im not very good at coping with anything that i perceive as criticism, bullying or nastiness, so i kinda ran away from here for a while. im trying with this post to come back, but i dont know if i feel confident enough to post as much as i used to. im forcing myself to be really open here. i hope it doesnt backfire.

my best escape coping strategy is reading. i read a huge amount. ive always enjoyed it and i still do. i dont shy away from reading horribly tragic books written by people who lived through (or died in) the worst times of this epidemic. reading is one of the only times i cry. im sometimes concerned that i have never cried about 'my hiv' as such. i cry at books, at tv shows, at the theatre. normally at rights being wronged or the pain of others. occasionally i still cry at the pain of just being alive, but not really about the hiv. see for me often being alive is the struggle, not so much the disease itself. maybe as it progresses this will change, and then i will appreciate even more the wonder of being alive. i know that will happen and that makes me happy and of course scared. in a way i feel amazing that i am even capable of feeling like im not ready to die. but also of course im terrified at the realisation that i may well be laid on my deathbed not ready to let go.

ok, im not even going to re-read this before i post it, cos if i do i'll lose my nerve. i'll just post it, no spellcheck or anything, so sorry for anything that doesnt make sense! and sorry as well ive written so much!

thanks again for everything
xxxx
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Offline sunseeker

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Re: Beehive
« Reply #10 on: December 13, 2007, 11:08:27 PM »
 Hi Girls

Thanks for starting this thread.  Sara I have not had much interaction with you in the past but I look forward to posting on this thread.  I have talked with Em in PM and she has given me a lot of advise.  I look forward to posting this weekend  It hard for me to post right now with working 12 hour shifts and tryping all day, so when I get home I need a break.  So Sunday or Monday will be the day that I post.  Thank you again for creating this thread.

Sun

Offline Dragonette

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Re: Beehive
« Reply #11 on: December 14, 2007, 05:27:51 AM »
hi everyone,

it's hard for me to address what everyone wrote b/c this is a megathread like the dating one... so I will address English Girl b/c I have wanted to for some time, but hopefully you will be able to see that by addressing her, I am speaking about myself and in a way all of us.

so Niki, you know we met in person and I really liked you, I hope we meet again soon, and like I told you I would be so happy if you came here. you are a really beautiful person inside and out. so i hope you know that I really care about you, I want to see you happy! can you truely beleive that someone can care about you for real even if they can't go along with you or give you what you need b/c of their own limitations? I hope so!
I dont know what happened with the AMG thing, I only saw the surface of it, i saw you putting yourself out there, perhaps too much out there, by making yourself vulnerable to people who dont want there world shaken. i think most people work really hard to reach their comfort zone or their balance and they are pretty aggressive when they even percieve that their piece of turf is violated or threatened in a way. I felt that I should interven, but while I was thinking out my response things just escalated, as they do often online. That is why the forums are at the same time really supportive but also really draining. Things move here at a much faster and dramatic pace then they do in real life, and when you try to mixe real life with it, well the result can be explosive.

Throughout my own life, i have had pretty much to do this starting out as a foriegner in different places (spain might be next) and not really having the time to do much beyond adjusting and adapting. I have had to work so hard at fitting in that the last thing I could do was protest, even though there are a lot of things that make me upset and angry - at home and everywhere where I lived long enough to know shit that's going on. Like you I can get upset or cry at the drop of a hut which makes me sad numerous times a day by reading or watching the news, reading the forums, and a bunch of other things. I try topreserve myself but i also need to know what's going on, but the helplessness that comes with this knowledge often is too tough on me. i become less and less functional in my real life when it happens and then i have to worry about things like my addictions resurfacing (I am not Amy Winehouse, but I do have my issues).

so, back to the AMG thing, ever since it started, when my one thought was "we have one member here who can't really go anywhere, and not b/c of money". yes, it's just one member, but she represents about 90% of the people who have HIV. and i know she would love to go somewhere, but she can't. so if we're all putting money forward to international travel, why dont we go to her b/c she cant come to us? i checked, and a ticket from Amsterdam to Harare, via London, with British Airways, was around 800 Euro. A visda, at the airport, is around 40$. It is not that expensive. I wanted to suggest that, but I saw that the argument was taking a whole different direction. I saw that you were hurt and I wanted to step in... but I couldn't. when the forums become something like a chatroom, when responses are being shot this way and that, i can't respond quickly enough, and even though i know my English is excellent, it is not instinctively sharp like that. I guess you could say I just shy away. i take what i can from these forums, but they can be limited.

so, i would like to be active, i'd like to do things, i also feel guilty about just taking, but so much energy is invested in daily survival, that this will take a while. i think i will have to be settled down somwhere first. even the women's group i used to see in A'dam, they had a great gathering this weekend, and me and the BF were set to go, but I was overcome with fatigue and from where I live, return, would have cost me 8 hours on trains. i just couldn't do it... i wanted to but i couldn't. but it doesn't mean that i never will...

one of the thngs that i thought of is that if we get a series of articles or programs going about magnetic couples, that could really help with destigmatization of HIV, b/c that is like the biggest taboo, a healthy person having sex with a poz person, to most people that is a lot of things that I am sure i don't need to list it, but at the very least to the most liberal ones, it's something akin to playing with fire. i know my bosses were very surprised to hear that I have a boyfriend. you could almost hear them thinking, "you dip your dick into THAT?!"  ;D. yes, that's what i imagined under the mild pc-surprise. not many people know or accept that poz-neg couples are everywhere, at all age groups, and that people are having kids. and up until 3 years ago, there have been articles in maninstream media (like Details magazine) claiming that the hetero epidemic is a lot of bull, and that hetero infected women at retired crack whores (if you don't beleive me, here is the link: http://www.whatisaids.com/wwwboard/messages/368.html). so we need to work on that.

we also need to work on HIV being a chronic disease and join hands with other organizations. all this seperation of diseases is working to the benefit of the establishment. you shush one subgroup, and the public thinks it's ok... but b/c helathcare is so subjective, and depends on the country, i think we can work on destigmatization better. and one way would be thru women's mags and a range of media from the Guradian to the Sun, b/c prejudice is just across all layers of society, just the posher the people the better they hide it. of course, i am using UK examples here, b/c even after 3 years in the Netherlands, I am more familiar with UK culture! i do see the netherlands as generally much more tolerant than the rest of the world, but i don't know enough, i am lucky and unlucky to make all these judgements from my own experience only.

ok i have busted my arm and have yet to work today. i want to send a big hug to everyone, again sorry that i chose to address one person. this is aidsmeds, every night i think of people i want to write to and i only wrote 1-2 of them. that sucks.

have a great weekend, whereever and however you are
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline srmn98

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Re: Beehive
« Reply #12 on: December 14, 2007, 11:56:01 PM »
Wow thanks for all of your thoughtful responses --  I am so amazed to read one after the other. Im not sure how to respond to all of you everybody said SO much !! I supposed there is no rush. After thinking about it a bit, I have decided Im going to respond kind of generally instead of to each person individually. I dont know how we want this thread to work (suggestions?)  --  but Im going to try to stick to the topics we are talking about instead of responding to each person individually . Although by talking about the same subjects hopefully we are still addressing each other personally ?? And maybe Ill answers some of my own questions .. since you ladies all did so eloquently and thoughtfully.

Coping Strategies:  Sounds like a common thread between us all is either becoming activists or thinking about becoming activists. Im still on the thinking about it end of things, but hearing your stories helps. I too hope to learn something from all of you out there about how I can be more active. And once I figure it out more, hopefully I can help somebody that steps into my current shoes. I like the idea of that time machine. Oh the things we could do, right ? That would be the ultimate tool for activism I suppose you could just keep trying to reach people but then things might get all messed up like Michael J. Fox in Back to the Future and I suppose we wouldnt want that, lol. J So maybe we can start talking about some specific issues pertaining to activism that we are interested among others I think I heard the Travel Ban issue raised and also the issue of how meds affect our bodies. Good topics. Maybe we can inspire each other to make our ways over to the activism forum

Stigma: And to become more active a few of us struggle with moving past the stigma. It is a huge hurdle for me as it is for some of you --- we are all in different stages with this. Some of you have jumped right over this hurdle and some of us have not. Some of us are worried about our children or families and how the stigma might affect them if we step out into the open. I dont know the answers to these questions I havent found the courage to tell my parents. I struggle with what information is private to me versus what is a secret. HIV is private to me and thinking of it this way is the only way I can handle not disclosing to my family. On the other hand, I know that in order effect change in the stigma of HIV some of us women need to step forward and show our faces to the world. I admire the ones who haveRegan, Ann, Zephyr there are more, please forgive me for my omissions. I can only hope I find the courage to join them one day. I feel that these brave women are paving the way for us much like years ago others did the same to change the stigma once associated with cancer. I think that us talking about this is making a difference just our awareness. It is, at least, a step in the right direction.

I understand the idea that HIV can give us something to fight against in a twisted, bizarre way a reason TO fight. My whole outlook on the world has changed drastically in just one year. So I think I understand and identify with what Englishgirl is saying. I wonder if somewhere there was a bit of darkness inside of me that I always used to fight against a sort of hardness deep inside .  But now that has been replaced with a different sort of fight and almost a forced optimism. That sentence probably doesnt make much sense, lol maybe Englishgirl said it better so Ill leave it at that ! J

Im so excited that Im not the only one that copes with reading. I think I have read more books in the last year than I had in a few years combined it really helps. Ive been reading a lot of political books and magazines also. Somehow learning more about what really goes on in the world has helped me cope. Hmmm .. we might need to start a book thread. I think finding out I am HIV positive made me identify with so many of the hardships in this world. Maybe before HIV all of those things were at a comfortable distance from me but having HIV inside my body somehow made me more aware, less comfortable. And when I read, I cry too. Come to think of it, I sometimes cry during TV shows, movies, and music, too. And for me too, it is often when the pain of others comes up. I just identify with other peoples pain differently now. I want to reply to the discussion about asylum seekers, but at the moment Im not ever sure where to start.

Dragonette made a lot of good points one of them being about how serodiscordant couples can be part of the strategy to change stigma about HIV.  Shawn Decker and Gwenn are doing that anybody read his book, My Pet Virus? ? It inspired me it made me laugh, it made me cry and most of all, it made me feel very much less alone.

I could just keep writing but Im getting overwhelmed, lol !! Lets just keep talking and wherever we go, there we will be.

All the best,

Sara



Ubotts I cannot imagine what you have experienced. But Im glad you shared your story with us. It sounds to me as though you were quite active and are ready to be so again. Im looking forward to learning more from you.
Wishful Wow, a 14 year old daughter !  It must be fun even when it is challenging. I understand your fears . Im always scared when I disclose that the person I disclose to will tell other people. I guess you just have to wait until you trust somebody enough . You sound very strong I look forward to more posts from you !
Englishgirl please stick around there was SO much in your post that rang true for me. Thankyou.
Cristy -  Glad you posted would be cool if you could do that volunteer work or make use of the services. I understand not being out with your status because of your family since Im not out with my status either it helps me to be out with it online, even if nobody knows me in real life on this board.
Dragonette- Dont feel bad about responding to mainly one person I think we can all get a lot out of your post and it keeps the dialogue going. So it doesnt suck. ;)
Sunseeker looking forward to hearing from you !



Offline cjc

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Re: Beehive
« Reply #13 on: December 18, 2007, 08:08:23 AM »
Sara and Em,  Hope ya'll are well. I have been picking my co worker's brain about the  Services in Greensboro. He and his Church volunteer at one of them once a month. I just have been trying to do it in a discrete way. I guess I should just flatout ask him but then I would have to tell why and I am scared. I just act like nothing is wrong. Not the best way to deal but my way right now. Hope everything is well. take care. Cristy

Offline courage757

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Re: Beehive
« Reply #14 on: December 20, 2007, 02:34:08 PM »
Hi Beehive,

It is always nice to know there is a place for woman that are HIV.  I am hiv and hcv.  We should have forums relating to the coinfection.  Most people do not realize they have HCV.  Please let me know if there is anyone out there so we can share our stories.  As I always say you are not alone.

courage

Offline srmn98

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Re: Beehive
« Reply #15 on: January 10, 2008, 04:15:46 PM »
Hi Everybody,

Sorry, I think I sort of dropped the ball with the holidays and all of that ---  was travelling off and on for the past several weeks and then work piled up when I got back .... but I'm still excited about this thread and hope we can keep the buzz going !!  I hope everybody had a good holiday season. Happy New Year !!

I had a lot of time to think over the holidays ... maybe too much time. A lot of what has been on my mind lately is children. My boyfriend has a seven year old who is with us not quite 1/2 of the time. I've grown pretty attached to this child over the past year ... it leaves me wondering if I would like to have children of my own someday.

I'm wondering what all of you think about having children ? If your viral load is undetectable, they say the chance of passing HIV on to the child is 0.4%. I flip back and forth between thinking -- hey, that means 99.6% chance that the child will be fine, and thinking 0.4 % -- is that a risk worth taking ? Then I start thinking about adoption as an alternative -- and that has both exciting and scary parts as well. Then, I read an article in the NY Times about aging and HIV and I started to wonder if it was even ethical for me to have a child. (I know, the common concensus now is -- YES, thanks to modern medicine00 we WILL be around for our children)  And then, I start to wonder what having a child will do to my own health. There is so much to think about.

What are you experiences ?  What do you think ? It's just been on my mind a lot lately.

Hope to hear from you gals ...

Sara



Offline cjc

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Re: Beehive
« Reply #16 on: January 10, 2008, 10:59:26 PM »
 Sara, there are several ladies here that were able to have healthy children despite the HIV.     I had my last child before I became positive but he  is such a joy, that I am extremely grateful to have him. If that is what you decide to do, your life will be enhanced a hundredfold. I think you should go for it.    Hope you had a great holiday. Glad to see you back.  Cristy

Offline sunseeker

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Re: Beehive
« Reply #17 on: January 10, 2008, 11:39:12 PM »
Hi Sara

I think about having a child all of the time.  My doctor says there is nothing to worry about due to being undetectable.  But I do worry about that small percentage and the risk it could pose to the baby.  I am planning on talking to my doctor more about this issue in Feb or march when I go back to see him  I have briefly talked with him and he said that he would send me to an ob gyn that specializes in HIV, and before doing anything I would like to talk to that doctor as well.  What scares me more is the after math and how I am going to die the meds that the baby will need to take from my parents.  I am going to be containing New York since she just had her baby and see how she has been handling things since her family is not aware of he status.  I will keep you posted on what I find out.   

On a side note have you heard from Em?  Wondering how things are going with her and her daughter. 

Hope all is well and talk to you soon.


tendai

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Re: Beehive
« Reply #18 on: January 11, 2008, 05:16:41 AM »
i had dropped the idea of having a baby after i was diagnosed.  recently i've started a new relationship and he's negative.  and he wants to have a baby and i keep saying "its too complicated!" My main fear is infecting him. i'm not on meds yet and really hope to stay meds-free for a while longer. He's rekindled that desire to have a baby and a family but i dread the thought of infecting him.  and artificial insemination is way too expensive here, even if it was readily available.  i just dont know... :-\

Offline srmn98

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Re: Beehive
« Reply #19 on: January 11, 2008, 12:15:12 PM »
Hi everybody,

Nice to see everybody again.

Tendai --  I know those lines well -- "its too complicated" --  I say that about a lot of things, lol. :)  I'm not sure, but I think you can go through the artificial insemination for about $500 in the States but I could be wrong. That's if he's negative -- which he is.  But going on meds is what scares me too -- they say I would have to go on them 3rd trimester.

Sunseeker -- definitely keep us posted. I share your worries -- its hard to balance out everything in our heads, isn't it ? My family doesn't know about my status either and it sounds like having a baby would make it hard to hide. I haven't heard much from Em -- I assume she's settling in -- but I'm anxious to hear how things are going.

CJC --  thanks for the voice of optimism. :)  Sometimes that's what we all need.

Englishgirl -- any good reading lately ? I just got back from vacation and read a few different novels. One was "The memory keeper's daughter" -- was about a family that had a child with down's syndrome back in the 60s. Was heartwrenching but good. I also read "The Road" -- which takes place after the USA basically falls apart and almost everybody has died. It's about a father and a son, and their bond/love through the worst of times. I felt sick the whole time I was reading it but after thinking about it for a few days I think it was good. I'm also trying to tackle 'Ghost Wars' which is about Afghanistan mostly -- but I just read that one a little at a time. :)

I guess I'm still trying to figure out how I'm going to live with HIV, not to sound repetitive. My therapist told me yesterday that sometimes grief becomes more difficult in the second year, which is where I now seem to be. The future is uncertain for all of us -- HIV positive or not --  but I do miss the days where I was blissfully unaware. I watched a documentary on PBS last night about children and bipolar disorder. They talked a lot about the drug companies that fund a lot of the research that goes on to determine which medications are effective for children with mental 'disorders.'  It was hard not to think about HIV -- and to wonder what the motivation is for the drug companies to find a cure since they are making so much money off of the drugs. I know that's oversimplified -- and I believe that the scientists that do the research are wholeheartedly trying for a cure -- or for less toxic medications -- but I want to know more about how all of this actually works. I'm terrified at the idea of giving a baby antivirals -- or of being on antivirals while pregnant one day.

Sometimes I feel that my thoughts go in one big circle, leaving me a bit dizzy....  it's kind of entertaining.

Ubotts, Wishful, Em, courage757, dragonette (you and iwishihadacat are tied for my favorite screenname ;) )  --  thinking of you.

Anybody chime in on anything on your minds, k ?

Sara


Offline wishful

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Re: Beehive
« Reply #20 on: January 11, 2008, 12:57:22 PM »
Tendai..Maybe u can go on meds just fo rthe baby's sake..i mean there are many of us here who werent affected negatively by the meds and have negative babies... Me included..Just saying..
Live life to the fullest...

Offline Blessed1974

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Re: Beehive
« Reply #21 on: January 11, 2008, 02:52:49 PM »
Hello all, I just hope this would help a little.  Everybody who has already read my story this is probably just a repeat of what you already know about me.   I have been positive for 14 years now and this will be my 4th child since being positive.  I have all girls ages 16, 13 and twins that are 9.  My last 3 are all negative.  I am definitely blessed (hence the name) !!!   With my 13 year old I was taking AZT (thats all that was available in the early 90's) and with my twins Combivir.  I am currently taking Norvir, Truvada and Lexiva.  My son is due in about 2 weeks and he's doing well.  I've been undetectable since I had the twins and have no complications with this pregnancy except for wanting it to be over.  There was an article I read about the connection between longevity in life span and childbearing that I can't find but if I do I will post it as well because it was very reassuring.

Offline englishgirl

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Re: Beehive
« Reply #22 on: January 12, 2008, 05:17:06 PM »
hello everyone
im afraid i dont have anything much to contribute on the pregnancy stuff as i dont know much about it having never wanted to have children. it's nice to hear all your happy stories tho :D and keep us all posted on your thoughts sara, sunseeker, tendai and anyone else thinking about it.  i do know that if you take meds, dont breastfeed and have a caesarian unless v low vl that there is a less than 1% chance of passing on the virus. of course there are also decisions to be taken re the method of conception (natural v turkeybaster) and i would expect that once you start taking the meds during pregnancy you'd need to continue taking them to avoid resistance issues but im not entirely sure. by coincidence im gonna need to read up on all this in the next few weeks as it will feature in a talk im giving on weds 23rd so if i find anything of interest i will keep you informed.

before i write anything else i want to say a big public SORRY to dragonette and to cristy as i have been UTTERLY CRAP and have not kept in touch like i meant to since we each met. new years resolution is to not be as shit with keeping up with people so i intend to email you in the next few days. if i dont then you have my permission to call me out here for it!

so, i mentioned earlier that im going to be giving a talk soon. it's actually a lunchtime mini-lecture called 'hiv update' at a hospital - so hopefully lots of fit doctors there  ;D - as part of their continuous professional development. have planned out my rough topics just need to fill in the detail. am really looking forward to it. will (i hope) be far less traumatic than dealing with schoolkids, plus it will look good on my cv  ;)

sara, i havent read any good books lately and im going crazy with it. im gonna take a look for those books you mentioned. i was taking to debra (melia) today and she has given me some non-fiction to track down but im also on the search for some fiction - so any suggestions anyone pls let me know. i read the memory keeper's daughter on a plane last year and was BAWLING. if you like that then you should check out 'the lovely bones' by meg rosoff, 'the island' by victoria hislop, 'my sister's keeper' by jodi picoult, we need to talk about kevin' by lionel shriver. two 'teenage' books that i think are wonderful (blessed get your daughters to read them as well) are 'chandra's secrets' by allan stratton and 'how i live now' by meg rossoff.

i'm trying to finish an economics book that is hard reading but v good - 'the bottom billion' by paul collier - google it and read what it's about. v interesting. also i recommend a book that was recommended on the forums some time ago all about the drug companies thing sara mentioned - 'the body hunters' by sonia shah - like a real-life 'constant gardener'

tendai - how are things where you live at the moment? i hope everything is ok.

sara it's interesting that you mentioned your therapist and grief, because i was having a discussion with debra about exactly that topic today. she was telling me about something called enneagrams which involves personality types. i'd get her to tell you more herself but she doesnt have internet at home at the moment, so you'll all just need to google it or go to the library. im gonna do exactly that as it sounds v interesting. we were also talking about elizabeth kubler-ross and 'on death and dying'. i was saying like i felt like i went straight to stage 5 - acceptance - and would never be emotionally functional enough to experience the other stages until basically on my deathbed. my theory behind this was that having been depressed/suicidal/thought i would die young my whole life, diagnosis seemed to actually make the depression less bad and start me living. what was fascinating though was that she said she thought i did show the 'anger' phase. ive been thinking about our conversation since then and ive decided that if i do show anger, it's at life itself not with having hiv. or maybe im actually still in such huge denial that i think all this but im completely wrong! :-\  :D ???

right, enough natter from me

some final questions:
drag- any update on spain?
em - how's it going with your daughter? not to want to invade your privacy too much but i'd love to hear

and finally a message of good luck to blessed for your delivery of your little man. i wouldnt have the energy for looking after one child let alone (soon to be) 5 - wow!  and to all of you who are parents you have my eternal admiration for the job you do - keep up the good work ;D

lots of love to all
xxxx
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"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

tendai

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Re: Beehive
« Reply #23 on: January 14, 2008, 05:12:28 AM »
English girl - things are a bit tight here. the shops have goods (well some goods) but they are pretty expensive. the main problem now is cash. if u have money in the bank and no connections in the bank, u'll have a hard time getting it out. this saturday i spent more than an hour wandering from cashless ATM to cashless  ATM in a vain search for money. then i tried to swipe at the POS in the supermarket and the buggers closed the machine while we were still in the queue.  if i hadnt been with my boyfriend i wouldnt have had money to go back home. dumb of me to expect to get money in town knowing the situation.

wishful - i guess if i have to go on meds for the baby i will do it. anything to have a negative baby. i just pray i wont have nasty side effects, thats the thing i'm mostly afraid of. i mean having a baby without HIV can cause all sorts of stuff to happen to your body and i'm scared that the combination of pregnancy, HIV and the meds would do a number on me. but at least if u came thru ok i guess i might too. its just that i think the meds we use here are different. the only common name i've heard is nevirapine.

sara - i think we'd have to try the do-it-yourself method i read about about using a syringe to inject the semen inside the uterus or whatever. at least that way i can be sure i wont infect him. we actually discussed it and he said it sounded like fun. he'd probably volunteer to do the injecting himself. We were joking about it and he was saying that we could store some of his semen in the refrigerator and if we succeed we'd tell the child one day " do you know you once stayed in the refrigerator?"  He's all raring to go and buy a pack of syringes today..

blessesd - please post the article u were referring to. might actually push some of us into actually taking that step into motherhood. and your story does give hope

Offline Blessed1974

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Re: Beehive
« Reply #24 on: January 14, 2008, 02:39:36 PM »
Tendai (and everyone else)

I found the article I was referring to before.  It was the September 14, 2007 at aidsmeds.com incase the link I pasted doesn't work.

http://www.aidsmeds.com/articles/hiv_pregnancy_disease_1667_13015.shtml

And Englishgirl, thanks for the good wishes and I'm going to definitely look for those books for my girls (they love to read).
« Last Edit: January 14, 2008, 02:47:38 PM by Blessed1974 »

Offline cjc

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Re: Beehive
« Reply #25 on: January 14, 2008, 08:13:24 PM »
Englishgirl, maybe you are not the only one who should apologize. I cannot speak for Dragonette but I get so caught up in my world that often I forget there is more than just this part. I would always love to hear from you and consider getting to meet you as one of the highlights of my poz life. Hope to see you next time you are  this way. Cristy          Good luck to you ladies who are expecting or hoping for a child  some day.
« Last Edit: January 14, 2008, 08:15:12 PM by cjc »

Offline srmn98

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Re: Beehive
« Reply #26 on: January 16, 2008, 11:53:39 AM »
Hi everybody,

Tendai -- I didn't realize you live in Zimbabwe. I'm glad your partner is up for the do-it-yourself approach. It sounds like he has a good attitude about it. Keep us informed.

Blessed1974 -- Thanks for the link to the article. Nice to see something optimistic ...   and keep us updated about your little one !!!!

Englishgirl --  Good luck with your talk. What are your rough topics going to include ?  I'm sorry ... but I'm not sure if you are giving the talk as part of your job ? Sounds interesting that you get the chance to talk to a bunch of doctors !!   Will you focus on research news or social issues or some combination ?

I'm going to try to pick up that book - "The body hunters" at the library this week. Thanks for the recommendation. Also, "the bottom billion" looks interesting -- I had read about it in the Economist -- here's the link.

http://www.economist.com/displaystory.cfm?story_id=9581576

I'm reading through "The Noonday Demon" now. It's about depression, in a nutshell. It's really interesting. I'm trying to figure out how to manage all of these up and down feelings -- and reading about it seems to help. I'm starting to realize that over the past year, I have sort of tapped out of my more optimistic, spiritual side. I've become so pessimistic at times and have lost touch with the part of me that believes in the world. I'm still working through it, but somehow reading this book is helping me find glimpses of who I think I want to be emotionally.  (blah blah blah ... does that sound silly ?  lol  )

Englishgirl said:
" ive been thinking about our conversation since then and ive decided that if i do show anger, it's at life itself not with having hiv. or maybe im actually still in such huge denial that i think all this but im completely wrong! "

I know what you mean. I get angry at things sometimes and am not sure what I am really mad at. It is especially powerful when I read about the world situation or people that are suffering. A news article can leave me angry, or sad--  for days at a time. I think I flip back and forth between grief and anger. I cannot even remember what the middle steps are -- acceptance ? I cannot tell the difference between acceptance and denial. Sometimes I think I'm handling everything pretty well and I must be accepting that I am HIV positive and I must be incorporating it into my life -- and then other days, I get so angry or sad I figure maybe I haven't accepted it at all.

Do any of you ever look around a room, or a restaurant, or wherever you are -- and wonder if you are the only person in the room with HIV ? I've been doing that a lot lately. I always wonder if there is somebody right under my nose that I might be able to connect with -- and then I wonder if they are thinking the same thing. Neurotic, huh ?

Hello to everybody I didn't mention specifically. I'm glad we are keeping this thread going. :)  It's nice to hear your thoughts, whatever they are. And I like the book discussions too -- maybe we should have ANOTHER thread where we do an online book club, lol ! 

Sara








tendai

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Re: Beehive
« Reply #27 on: January 17, 2008, 05:10:02 AM »
Do any of you ever look around a room, or a restaurant, or wherever you are -- and wonder if you are the only person in the room with HIV ? I've been doing that a lot lately. I always wonder if there is somebody right under my nose that I might be able to connect with -- and then I wonder if they are thinking the same thing. Neurotic, huh ?
i do that sometimes when i'm in a crowded place, or on the bus. our statistics say 1 in 4 are poz and i'll be counting four people and saying i'm the 1 in this group, or is there more of us?  Its more curiosity really and i sometimes find myself wishing we had identifying marks or something so we pozzies  can recognise each other in a crowd and if we want to make something of it we can.  i bet we'd be surprised to see some people we wouldnt even suspect.

and sara give yourself time to work out the grief and the anger. i used to get angry but mostly with myself for allowing myself to get infected in the first place, then i'd wallow in misery for a while thinking "why me ,i wish it would go away so i could be normal". then i thought "hey no use crying over spilt milk. mop it up and move on. life can still be good. or at least alright, if u just try." :-*

blessed - thanks for link.  another excuse to get pregnant! i wonder if they mean we should keep getting pregnant as much as possible ;D
 

Offline cjc

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Re: Beehive
« Reply #28 on: January 17, 2008, 08:03:31 AM »
Hello.   Sara, yes I do that. I also run scenarios through my mind where I have to disclose or cannot help people cause I have the HIV. I stopped  for a wreck a couple weeks ago and was worried that if the people were bleeding, could I still help? He was bleeding but not much so I just called the Ambulance and stayed until they came. I worry about that with Robert, too. If he gets hurt, how limited am I in being able to help him. I can't kiss open boo-boo's cause HIV is in my saliva and  what if , by some freak chance, I transfer it to him.    I look at crowds and wonder, am I the only one?  Sometimes I feel like I am hiding and I am to a degree. I get angry with myself because I am limited in ways that are frustrating  or sometimes imaginary.   Sorry for the ramble but seems appropriate. Later. Cristy

Offline emeraldize

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Re: Beehive
« Reply #29 on: January 17, 2008, 08:28:49 AM »
Quick note before dashing out the door. Yes, I run scenarios in my head about who in the room is, isn't, might be...just idle mind play mostly. Especially in the beginning, I used to think about it quite a bit.

I think the notion of a book club thread is a great idea!!!

More later. Have been checking in for the last month and hope to contribute more once life is more settled for me.

Em

Offline BT65

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Re: Beehive
« Reply #30 on: January 17, 2008, 08:52:48 AM »
Just a quick comment-Cristy, HIV in the saliva is too minute to pass that way.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline cjc

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Re: Beehive
« Reply #31 on: January 17, 2008, 02:09:10 PM »
Just a quick comment-Cristy, HIV in the saliva is too minute to pass that way.
         I KNOW, but that's just how my treacherous mind works. Can't pass it through unbroken skin either but I still worry about it.   Cristy

Offline englishgirl

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Re: Beehive
« Reply #32 on: January 17, 2008, 04:39:57 PM »
gonna post more another time when have more time but just wanted to say i LOVE the idea of a book club thread. should we start one in off topic tho so the men can join in? i would be happy to start it as i have just been to the library today!!
sara - im thinking that you & i have similar taste in books as i have read the noonday demon too. i preferred a different book tho - i'll try to remember what it was.

tendai - thanks for letting us know how you are. it sounds really tough there. i know a few people from zim (meant to be going on a date with one this weekend ;)) so i have heard many, many horror stories. my heart goes out to you and everyone else there.

re the 'who else has hiv' - i always take perverse pleasure when there are more of 'us' than 'them' around a table, on a night out, etc. especially fun sometimes is having loud discussions to see how long it takes before earwiggers nearby cotton on what we are talking about and try to hide their shock...  ;D

cristy - your post made me have a happy memory of being sat with you & robert last year. i was gonna say this when i emailed you but ive decided to share it here instead - hope you dont mind - i was so happy when we were sat having lunch with my friend and we were able to just have a chat about hiv things. i wish you, me, and everyone else could always do that wherever we were.

ive been reading up on pregnancy for the talk im doing & have put all the info i found on aidsmap.com onto one huge word document. so if anyone wants to save themselves some research time then PM me your email & i'll send it to you

re the anger - isnt it a shame we dont all live near each other, then we could get together and start a kickboxing club - wouldnt that be a great way to work out anger & frustration and also stay in shape  :D

big love to all, and thank you - im beginning to enjoy logging on again!
xxxx
ACT NOW TO CAMPAIGN AGAINST THE TRAVEL BAN:
http://campaigning.tht.org.uk/cms/cmsloader?WfJVLp&view=11,301,1385,0,-html

http://forums.poz.com/index.php?topic=17352.0


"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

Offline BT65

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Re: Beehive
« Reply #33 on: January 17, 2008, 09:34:58 PM »
There's already a book thread in off topic.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline srmn98

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Re: Beehive
« Reply #34 on: January 21, 2008, 11:11:50 AM »
Hello,

Hope everybody had a good weekend. Mine was sort of busy and really COLD. :)

Cristy -- I hear you. I have similar thoughts. When my mind wanders down that road, sometimes I let it wander. It usually doesn't leave me in a very good place mentally -- kind of leaves me feeling a bit contaminated and sorry for myself. Other days, I am better about catching my thoughts and not letting my fears get ahold of me too much. We KNOW that you are not going to pass on HIV to Robert by kissing a boo-boo, etc. We KNOW these things. Sometimes I understand it is hard to believe, but we need to remind each other when our minds start to spin.

Betty-- I didn't realize there was a book thread, I'll have to check that out.

Englishgirl -- Funny, we must have the same taste in books.  Have you read "Man's search for meaning?" I just started it last night and so far it is gripping. It is written by a survivor of auschwitz. I would be interested in the word document you have put together for your talk -- will you send it to me ? 

Yes, I agree it would be nice if we lived near each other !  Would be nice to put faces to the avatars.

Tendai -- you're right .... "mop it up and move on ... "    This is definitely a big part of my daily struggle right now. Hearing all of your stories helps. How is the pregnancy attempt going ?

It's a little late for New Year's goals .... but I'm making one now. I want to spend this year really being realistic about my HIV diagnosis. I have spent quite a bit of time in my head this last year taking things to extremes ... but I want to learn how to really incorporate the HIV diagnosis into my life without having it become too over-riding or too hidden within. I want to find out how I can have HIV just be a part of me -- something I can live with and accept without being so angry, ashamed and hurt all of the time.  Some of you are already doing this -- and reading the stories of some of the folks on this board that have been around for awhile always helps me out. There is a lot of wisdom here.

Em - sound like things are busy for you ...  I've been thinking about you and hope you are well.

Sara









Offline Dragonette

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Re: Beehive
« Reply #35 on: January 22, 2008, 06:05:05 AM »
Hi there

I am always behind in writing both on the forums and emails for a # of reasons... English Girl I know how it is, no worries! I have just written something on the dating thread that I would like to quote here, b/c I just want to get as many women's opinions on this as possible.

~Speaking of transmission, last week I saw my doc (CD4-350, VL unknown btw), and he said that he thinks that so much evidence is accumulating, that soon poz women who are on HAART and undetectable will not be using condoms with their partners at all. Seriously, the other week there was even an article in Yahoo about that: http://health.yahoo.com/news/healthday/antiretroviraldrugsmaypreventvaginaltransmissionofhiv.html

Isn't that amazing?! so I am not saying we can ditch the condoms, I haven't anyway, but I think we can definatly date neg guys without a worry, seriously. I have never heard - of course this is anecdotal right, but still - never ever heard of a poz woman on treatment infecting a man. That's why when me & the BF had the condom slip, they didn't want to give him PEP, the doc said the risk was just too low. In the comic book "Blue pills", which is a story about a neg guy falling in love with a poz woman, in Switzerland, true story about the author, he quotes the doctor as saying he has bigger chances of being hit by a white rhinoceros than being infected by the woman when their condom breaks. I didn't know this book untila  week ago but someone mentioned it so I googled it: "During a moment of lovemaking, Frederik's condom breaks, and the two spend a night awake, worrying about the consequences. They visit a reassuring doctor the next day who tells Frederik that given the "weak concentration" of HIV in Cati's blood, "you have as much chance of catching AIDS as you have of running into a white rhinoceros on your way out!" "

http://www.calendarlive.com/books/cl-bk-terzian20jan20,0,204486.story?track=rss

They don't tell us that, they they just terriffy us, but now finally there are messages coming from the media that don't clump women with men anymore insofar as transmission risk is concerned. I remeber how shocked I was when they doctors in Israel told me they have one heter couple in which the neg guy doesn't wear a condom b/c he is not scared. I couldn't understand how that happens, but now I see why they were so calm about it. It's like they know the truth but don't really try to get it out there, or what doctors privetly acknowledge (like my own doc last week), the big orgs and government agencies don't want to let the general public know, b/c they truth is too complex. Men probabaly would use even less condoms thatn they do now, I know a lot of guys are scared to death of catching HIV from women, ironically the way to keep women safe is get the men to be scared about their own ass. So we pay the price of stigmatization. That's how Im starting to see it.

OK I somehow wrote more than the usual dating stuff... I'd love to know what you ladies think of this.

BTW book recommendation, "Half of a Yellow Sun", book about Biafra, the Nigerian writer's name is so long that I won't attempt to spell it here, really good and shocking. Highly recommended. Really really good. I just finished a Hebrew book so I can't recommend it here, but usually I read English. I liked Zadie Smith's last novel, On Beauty, so much; I like everything by T.C Boyle, his last book I read was Talk Talk, really good! If you haven't read the 2 Donna Tratt novels already, they are gripping masterpieces (I know its a little old, I rarely buy new books). I'm sure I will think of more...

Lots of love to all,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline srmn98

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Re: Beehive
« Reply #36 on: January 22, 2008, 12:07:26 PM »
Hello Dragonette,

I read the article you posted. While I am optimistic about female to male transmission risks -- I think this article is more geared towards protecting women from becoming HIV positive.

Take a look at this link:

http://www.biologynews.net/archives/2008/01/15/existing_antiretroviral_drugs_may_thwart_vaginal_hiv_transmission_researchers_report.html

It references the same study, but goes on to say:

"There are 33 million people infected with HIV. This study is a highly significant breakthrough because it offers proof-of-principle that pre-exposure prophylaxis with currently available anti-retroviral drugs can potentially prevent vaginal HIV transmission, empowering women throughout the world to protect themselves from this deadly disease, Dr. Garcia said.

More women are being infected by HIV now than at any other time during the history of the AIDS epidemic, Dr. Garcia said. Over 15 million women worldwide are infected. Our findings should provide further impetus to continue clinical trials using oral anti-retroviral drugs as a preventive measure, particularly in areas with the highest rates of HIV infection.
"

I think what they are saying as that women might one day have the ability to protect themselves from an HIV infection by treating themselves with anti-viral medications before and after a possible exposure --  so if their partner refuses condoms they can take some control.

That being said, I am hopeful that one day we will find that women with undetectable viral loads are not able to transmit HIV -- but we are not there today. The model that my doctor and a researcher I have spoken with for looking at female transmission of HIV is the model of an HIV Positive woman delivering a baby. The researcher I spoke with told me that as they become more confident that women with undetectable viral loads do not transmit HIV to their babies during delivery, they also become more confident that HIV is less likely to be transmitted sexually when undetectable. 

For me personally, I know I could not live with the outcome if my boyfriend became HIV positive. So for me, it's just not an option unless more research is done.

Best to all of you -- and Dragonette, thanks for the article -- very interesting !!

:)

Sara





tendai

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Re: Beehive
« Reply #37 on: January 24, 2008, 06:11:26 AM »
hey Drag, thanks for the link.  too bad i'm not on meds and we dont do viral loads here, otherwise i'd be all over someone  ;)

sara - the baby making isnt going too well. we havent even bought the syringes (or turkey basters!). i dont know maybe unconsciously were dragging our feet coz maybe we arent ready yet. and the finances oh my God. i keep saying lets wait till after the elections coz i dont want to be having a baby and then being unable to take care of it properly. i'm a bit pessimistic of our futute here, things seem to be getting worse probably because of the elections. worst case scenario is we break out into civil war and i'm running around clutching a big belly. i dont know.

about the transmission thing. is there any weight to the theory of a neg man urinating and washing his thing after having unprotected sex with a poz partner and thereby preventing transmission to himself? ???

Offline srmn98

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Re: Beehive
« Reply #38 on: January 24, 2008, 10:23:34 AM »
Hi Tendai,

I've been reading up a little bit on your upcoming elections --  its hard to get a clear picture of it all. I can only imagine that things are really difficult and I am thinking about you.

About transmission:  Unfortunately, there is NO weight to the theory of a negative man urinating and washing himself after sex to avoid transmission. Condoms are the only way to prevent transmission if you are having vaginal sex that I know of. (Ann -- this is correct, yes ?)

Tendai --  maybe I should go back and read old threads -- but I'm just interested -- tell us more about yourself ! 

Sara







tendai

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Re: Beehive
« Reply #39 on: January 25, 2008, 05:34:14 AM »
About transmission:  Unfortunately, there is NO weight to the theory of a negative man urinating and washing himself after sex to avoid transmission. Condoms are the only way to prevent transmission if you are having vaginal sex that I know of. (Ann -- this is correct, yes ?)

Darn... :'(

sara what u want to know?

 


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