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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 144386 times)

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Offline OnlyMeHere

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #200 on: December 30, 2015, 02:32:26 pm »
I'm not "down" on people who enjoy a healthy sex life.  I have not had any type of intimacy/sex/whatever since I was diagnosed 4 years ago, and that will continue as long as I am positive.  That's my choice.  Men think about sex every 7 seconds!  So, if men THINK about sex every 7 seconds.....how many times out of the day do they actually HAVE sex (or look at porn, masturbate, etc).  If the hookup websites and bathhouses would go away....people might just actually go out and do something radical.....MEET FACE TO FACE....have an actual conversation, and see how things go.  Then you can decide if you want to see this person again, or heaven forbid....have another date, and wait on sex to see if you are compatible and actually love each other.  I'm assuming everyone got the same memo......"go out and screw everyone until you conquered the city"...........I guess I missed that memo

Offline Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #201 on: December 30, 2015, 02:41:13 pm »
I'm not "down" on people who enjoy a healthy sex life.  I have not had any type of intimacy/sex/whatever since I was diagnosed 4 years ago, and that will continue as long as I am positive.  That's my choice.  Men think about sex every 7 seconds!  So, if men THINK about sex every 7 seconds.....how many times out of the day do they actually HAVE sex (or look at porn, masturbate, etc).  If the hookup websites and bathhouses would go away....people might just actually go out and do something radical.....MEET FACE TO FACE....have an actual conversation, and see how things go.  Then you can decide if you want to see this person again, or heaven forbid....have another date, and wait on sex to see if you are compatible and actually love each other.  I'm assuming everyone got the same memo......"go out and screw everyone until you conquered the city"...........I guess I missed that memo

When you came to the forum I assured you that you would get support and brutally honest opinions on your post … You need an attitude adjustment . You seem to be in conflict with everyone from your doctor to the community you live in.

I hope you stick around and learn from our members who have been there and done that. Most all of your post reek of a person who has not fully come to terms with living with HIV.
This is meant as constructive advice … if you don’t do the work to accept your diagnosis and the challenges that come with it your future looks bleak. Take it from someone who has been there… there is life after HIV.
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Offline OnlyMeHere

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #202 on: December 30, 2015, 02:49:05 pm »
I had typed out this long response to you, but I'm realizing it takes 2 to argue, and I'm not going to do it with you.

Offline Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #203 on: December 30, 2015, 02:56:07 pm »
I had typed out this long response to you, but I'm realizing it takes 2 to argue, and I'm not going to do it with you.

I promise you I am not trying to argue with you. You came here for support and help and we cant provide that if we do not respond to what you share in an honest way.

Im not judging you … you sound just like I did years ago and many here have the same issues you are going through so you are not alone.
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Offline Gruff

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #204 on: December 30, 2015, 04:06:22 pm »
I'm not "down" on people who enjoy a healthy sex life. 

I have not had any type of intimacy/sex/whatever since I was diagnosed 4 years ago, and that will continue as long as I am positive.  That's my choice.

If you really examine those two statements of yours with a critical eye...it sounds to me like you're saying you've made a choice, and it's not a healthy one.

Sex is a normal, natural part of the human existence.  The sex drive is hardly different than any other innate drive for survival.  Yes, you can choose to deny yourself - throughout the ages, countless monks and nuns have tried to do exactly that.

But understand then, that much of your disdain for the rest of the world, and perceived lack of a support system,  has to do with the fact that you resent others enjoying what you, for whatever reason, have denied yourself.  And that makes it hard to find the support you're looking for: not because they have sex or sleep around, and not because you choose not to - - but because you choose to be resentful that others haven't taken the same bitter road that you have.

In other words...it sounds like it ain't them that's the issue....
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Offline OnlyMeHere

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #205 on: January 02, 2016, 09:52:55 am »


If you really examine those two statements of yours with a critical eye...it sounds to me like you're saying you've made a choice, and it's not a healthy one.

Sex is a normal, natural part of the human existence.  The sex drive is hardly different than any other innate drive for survival.  Yes, you can choose to deny yourself - throughout the ages, countless monks and nuns have tried to do exactly that.

I've made a choice not to have sex anymore!  Sex may be a normal, natural part of human existence, but that does not mean that I must partake.  I do not resent anyone who chooses to have sex.  That's their choice, just as it is mine not to.  You act like I'm committing some sort of crime by making a conscience choice not to have sex.  Where is the support in that?  Not wanting to transmit this horrible disease?!  I'm getting perceived as an asshole because of MY choices.

Offline ReginaD1984

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #206 on: January 06, 2016, 12:00:56 am »
I've been positive for nearly 5 years and recently reached undetectable status. The biggest struggle is finding love, every man I meet runs away after I tell them about my status. This is doing major damage to my self esteem some days I can barely find the will to live. Not protecting myself years ago is ruining me now, I don't think I will ever find anyone who cares for me. I am beautiful, great career, but I feel like a walking plague.  :'( :'( :'( I try to stay positive but it's so so hard when I have constant reminders every time I take a pill or get rejected. I'm at the end of my rope here!

Offline chwhyoche

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #207 on: January 09, 2016, 10:12:34 pm »
Regina, big hug to you!   I commiserate with you!  This meeting a partner, who is good, kind, loving, with mutual attraction, and is stable, was hard before and near impossible now. Even the men I've met on here have been a bust.

I miss my husband.  I hoped he would live a long time.  I enjoyed being married.  I enjoyed having someone I loved and who loved me. 
I feel very low today.
« Last Edit: January 09, 2016, 10:16:30 pm by chwhyoche »

Offline lioness

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #208 on: January 25, 2016, 06:09:14 pm »
Today was having a great discussion with my friends till a topic rose on HIV. I got really pissed of en wanted the topic changed but the more I wished for a change the more the discussion went on. One guy commented those who get HIV nowadays are stupid, reckless and should their own fault. It felt like a Pearce in my heart. It reached a point where it had come to a point where people were goggling to see which country had highest infection (we r students from different countries. I felt like walking away coz I wasn't participating but decided to get glued to my phone as if surfing.

After parting I rushed here coz this is the only support group I have. I really feel stressed and wonder if I will ever tell anybody about my disease

Offline CaveyUK

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #209 on: January 25, 2016, 06:17:31 pm »
Today was having a great discussion with my friends till a topic rose on HIV. I got really pissed of en wanted the topic changed but the more I wished for a change the more the discussion went on. One guy commented those who get HIV nowadays are stupid, reckless and should their own fault. It felt like a Pearce in my heart. It reached a point where it had come to a point where people were goggling to see which country had highest infection (we r students from different countries. I felt like walking away coz I wasn't participating but decided to get glued to my phone as if surfing.

After parting I rushed here coz this is the only support group I have. I really feel stressed and wonder if I will ever tell anybody about my disease

Funnily enough, I was thinking about this today - if the subject of HIV had come up amongst friends who are negative and don't know about me (ie. nearly all of them) pre-diagnosis, I would have weighed in about how remarkable the modern meds are and how its a chronic condition rather than a terminal illness yada yada, but weirdly since diagnosis I'm almost afraid to say anything in case, for some bizarre reason, I 'give the game away' about my diagnosis! The mind does strange things....

I thought about it as I am going to see a singer soon live - John Grant -  who happens to be HIV (my tickets were bought pre-diagnosis) in concert in a few weeks, and a guy at work was saying how great the bloke was and how he had his last album, and then said 'Was reading about him on the weekend. Didn't realise he was American, and gay and...', and I was waiting for the 'and he has HIV....' so my mind scurried as to how I would respond, hence the above thoughts. Luckily, his phone rang just at that point :)

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Offline RobbyR

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #210 on: January 25, 2016, 06:46:20 pm »
My biggest challenge is as a still young guy, dating and playing, having HIV is just an annoying barrier when it comes to that. Yea I'm undetectable, but let's face it most guys don't even know what that means. Usually about once or twice per week, I can be chatting with a cute guy, and inevitably, they'll ask about status, and when I tell, they'll either just stop chatting or blow me off because of it, which is dumb, because there's tons of worse stuff like hepatitis or stds but whatever.

There's a few who are ok with it, but its touch and go. And being hiv positive is just an annoying ever-present barrier to fun casual dating. Like I'll be chatting with a guy I like or, is cute, and I know that if things progress enough, hiv status will always come up one way or another, and it's in the back of my mind how to tell them about it and always worrying about rejection because of it. I like to think I am a nice guy, decent looking, and have a lot to offer even as a friend, but hiv is just something there that plays with your head. For the most part I don't think much about it, but just when it comes to dating or hooking up, I wish I didn't have to deal with it. They need to find a cure! But I'm grateful for what we do have.
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Offline chwhyoche

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #211 on: January 28, 2016, 04:01:21 pm »
About 4 years ago, I unexpectedly bumped into my 6th grade teacher after 30 or so years.   We only talked for minutes at the gym we both were going to at the time, BUT for those minutes she happened to get on the topic of HIV.   She knows I'm living in the SF bay area now.  Anyway, she started going on and on jokingly about "You know how THOSE people get it.  You know how they get it ...."  yada yada UGH.  I couldn't believe she was being such a bigotted bitch.  I don't even know how she jumped to that topic.   I guess due to the area I live in.   I felt so uncomfortable and it was the end of my illusion that my 6th grade teacher was so awesome.  I even saw the hate and ignorance in her eyes.   Couldn't believe the conversation.   Actually it made me grateful for HIV, that I'm not stuck in that mindset anymore. 

Offline jckent

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #212 on: February 02, 2016, 06:15:26 am »
My biggest problem is my employer.
I am meant to be on the road a lot.  But i have such bad diarrhea, i often can't risk driving far.  Also the tiredness after a day's driving just wipes me out.

I carry two pairs of spare trousers in the car always.

My employer won't make any changes saying basically its my job, like it or lump it.
I pretty much live on Imodium, which is killing me.

he doesnt know im HIV. just that i have a condition that means i can be extremely unwell and am receiving treatment.  If i told him about my condition fully, my life would be even more unbearable.  he has make his view quite clear in the past about such things.
I thought when i was diagnosed a month ago. taking daily tablets and worrying about the health side would be my greatest worry. but its not.
I also have been told i must be considerate of other members of staff, thinking im getting special treatment.
 i know this may sound like a rant, but in my area there is so little support, there is no where to turn for help.
ok rant over.
« Last Edit: February 02, 2016, 06:25:50 am by jckent »

Offline CaveyUK

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #213 on: February 02, 2016, 04:32:12 pm »
My biggest problem is my employer.
I am meant to be on the road a lot.  But i have such bad diarrhea, i often can't risk driving far.  Also the tiredness after a day's driving just wipes me out.

I carry two pairs of spare trousers in the car always.

My employer won't make any changes saying basically its my job, like it or lump it.
I pretty much live on Imodium, which is killing me.

he doesnt know im HIV. just that i have a condition that means i can be extremely unwell and am receiving treatment.  If i told him about my condition fully, my life would be even more unbearable.  he has make his view quite clear in the past about such things.
I thought when i was diagnosed a month ago. taking daily tablets and worrying about the health side would be my greatest worry. but its not.
I also have been told i must be considerate of other members of staff, thinking im getting special treatment.
 i know this may sound like a rant, but in my area there is so little support, there is no where to turn for help.
ok rant over.

I know you think this is just a fact of life and is more of an issue with stigma (and it is, in a way) but from your description it sounds like med side effects. If it continues, talk to your HIV doc about alternatives.

Some of the more recent drugs have very good side effect profiles, so you shouldn't have to put up with uncontrollable diarrhea or fatigue.
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Offline jckent

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #214 on: February 03, 2016, 02:33:36 am »
Hiya Caveyuk
I actually had both of these ( diarrhea & tiredness) before i was diagnosed.  It's what prompted me to be tested in the first place.

The meds I am on have had zero side effects.
 I'm on triumeq .  I'm getting my first post med results today.

Thanks anyway.

Offline Jim Allen

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #215 on: February 03, 2016, 07:14:40 am »
Hiya Caveyuk
I actually had both of these ( diarrhea & tiredness) before i was diagnosed.  It's what prompted me to be tested in the first place.

The meds I am on have had zero side effects.
 I'm on triumeq .  I'm getting my first post med results today.

Thanks anyway.

Hi jcKent,

Not quite sure where you are located?
But sorry to hear that your having work issues at the moment.

I just wanted to chime in that like yourself my fatigue and other issues where not related to the meds as I had the issues, a number of them building up long before I starting the meds.  Specifically My fatigue was so bad it was like hitting a brick wall or 30th wave.

However when I started taking my meds I did get a lot better, it took a few weeks at first to feel any change but I slowly gained some needed weight and in the months following that, I then slowly but surly got better.

I'm currently on the same regime as you after switching from Tivicay/Truvada and  it working well for me, and I have my energy back and my other issues have mostly long settled down as well.

So give it and yourself some time.

Jim
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Offline jckent

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #216 on: February 22, 2016, 08:42:01 am »
Hi all, going on from my last posts.
Last week i had to resign. someone had started a rumour i had Aids. no one wouldtalk to me.
so i stood up and said i have colon cancer to all the staff as someone has said i had aids.  a member of staff stood up and shooted at me it wasn't them. (it was).
i stormed out very stressed. this person out a complaint in against me, saying she now feels scared and threatened by me. my employer was saying maybe i shouldn't be a work, because she cant work with me. and the company cant really afford for me to be ill.
i actually had no choice but resign.
it is sad in this day and age such bullying and bigotry still exists.

normally everyday. I am a totally balanced normal married guy. loving life.

Offline Wade

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #217 on: February 22, 2016, 09:14:10 am »
I am sorry to hear this .  She is the one who should have a complaint filed against them, not you. I don't know where you are located , but as far as I know it is not a crime to be working while living with HIV.

Sending you my Best , Wade
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Offline Jim Allen

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #218 on: February 22, 2016, 09:46:48 am »
Hi,

I'm really sorry to hear what has happened.

I can't believe that after being subjected to bulling & harassment though means of exclusion and finally rumors your employers response is you are the one that who should not work as he can't afford for you to be ill/sick. 

It's shocking for him not to act when you said you were sick and also not to act when you were subject to harassment, his final mistake is in essence forcing you out.  Really sorry you had have experience "constructive dismissal" .

Not sure where you are based but if it was me (UK in the past / now ROI )
I would be claiming my resign was under "constructive dismissal" "constructive dismissal. This is when your employer makes it impossible for you to carry on working so you resign" Than I would be seeking legal advice and checking with citizensadvice to be honest as he made no adjustment when you told him you were sick and provided the doc's note despite the request being reasonable again employers are required to do so where I am based, i'm not sure where you are based and finally he did not act on the harassment and said he can't afford ill employees meaning you. Where I am based HIV is protected as a disability in the work place.   

Your employer has acted disgracefully.
Wishing you all the best

Jim




 
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Offline Beaner61

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Me in a nutshell:  Mid-50's, diagnosed last summer. I live in the US. On Stribild, VL got to undetectable within the first month of treatment.  My CD4 is up to 711, and may climb further yet.  So in many many ways I am very lucky.  But...

My biggest challenge?  Something of a tie.

Fear that I will lose my job (for whatever reason) and not be able to pay for meds, or else will have to exhaust all my financial resources (I have a son in college).

Loneliness. I live in small city in an otherwise very rural area.  I don't really have any friends nearby, and not that many long distance friends either.

Thanks for "listening."

Offline Jim Allen

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Hi

Welcome to forum.

Glad you have decided to change from lurking to posting and that you are doing well with the treatment.

Hope to hear more from you on the forum.

Jim
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Offline floridartist

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My biggest challenge is food, I'm getting tired of eating, and all the preparation of it all, It gets to a point that I don't know what to eat so I don't eat, then the domino effect kicks in, first the hunger, then the weight loss, then I'm  basically too tired to do anything, (fatigue) or even want to go food shopping, when I finally cant stand the hunger I go to the store, Then I don't know what to buy, so I get the basics, Ensure Plus, Milk, bread, fruit, frozen foods, simple stuff. And this goes on and on month after month year after year and I'm tired of it, its my biggest challenge of all challenges. After all said and done, there is hope, I like to eat out,  I could do it every day, The flip side of that is, I don't like to eat out alone, so that's my story, Thanks, John   
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Offline leatherman

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My biggest challenge is food
figuring out what to eat is always an issue. Probably 1/5 of what my partner and I talk about on a daily basis is what to eat for dinner. (the rest of our conversation is about how happy our dogs make us, his frustrating job and my advocacy or yard work projects, how much we love each other, and what to watch on TV) But I certainly remember eating alone, or eating when I was all aidsy. Anything simple and quick (you know, chips take no prep time and instant mashed potatoes are done in 90 secs. LOL) because dinner-for-one is a hard task. I'm sure there are plenty here that can sympathize and empathize with you.  ;)

However, I don't know that food is much of a part of the challenge of living with HIV - except in the years waiting on disability when I was horribly poor. I had to go to church pantries and kitchens for food because my cupboards were bare. Oh and food has off-and-on been an issue with the meds. In the old days you had to take some with food and some without, some 2 hrs before and some 2 hours after meds. It would get quite confusing and I used to have a chart on the fridge to remember what was the med "side dish" with what meal. Personally, my easiest-to-remember-to-take regimens have been the ones that required taking the meds with food - it ensures that I eat dinner, as at least one meal a day.

Hopefully, you'll figure out what to eat tonight ;) I don't know what I'll be eating this evening because I haven't asked my partner yet to get a clue about what to make. LOL  ;D
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We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Alternis

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I just recently got diagnosed so maybe it wasn't much a of a challenge compared to other member.

In terms of relationship, I can handle being alone well. Ever since I broke up 2yrs ago, I already accepted my fate as forever alone guy. So not being in a relationship is not an issue for me. Although it can be lonely at times, but I'm such a hermit (I don't even own any FB or social media OR dating site/apps lol) living my own unsocial life. If someone took an interest on me, I can just said that I'm poz and we'll see from there (recently I met someone and we had a crush on each other and when I told him, he suddenly had to move out of town so yea lol).

I won't tell my parent. Ever. I never told them about my illness before since I knew my parent had to struggle with their own illnesses. My mom passed away last year to complication and I don't know about my dad but it's best for him to not know about my condition.

In terms of coping up with my status, I think I'm coping up well. My family (including me) had always subjected to illnesses. Me taking a 2x1 medication everyday is nothing compared to what my mom has been through with taking like 3 or 5 x3 for 5 years. I'll live and be grateful for today's medical advances.

Now. My biggest challenge is my resistance of drugs. My body resist most of the drugs known to human. I develop severe allergic to penicillin, ibuprofen, or any NSAIDs. I even develop allergic reaction to any generic pills sold. I will see my doctor this Friday noon because suddenly I develop allergy to my arv regimen (after taking the new truvada regimen). This is a challenge before whenever I got unusual illnesses (that's why I got to the critical point because the doctor can only treat me with therapy and not medication as I will develop allergy to them) but this... I need this med. Hopefully the doctor has something to counter my condition.

Another challenge is my dream life. I'm relatively young (28 y.o) aiming to be a full professor while living my academic tenure now. I planned on getting a scholarship for my PhD abroad but this... this changed my life so much I don't know what to do now. Sigh...
Heading a center of research, everyone just seemed to push me to go for the scholarship application but I somehow doubt that they would take someone poz. As for my co-worker, well, I just said some shit about me having la-di-da illnesses and they will believe that (like I said, I have a record of having many unusual illnesses and some even reach critical condition so they will believe anything I said). I know they will chop my career when they found out I'm poz so yea. That's why I can't even think on applying scholarship right now because they will need me to be truthful of my status and then everyone will know that I'm poz. Not to mention how to cope up living with HIV abroad, the cost of medication, insurance, etc.

But eh, that's for me to handle. I know I can handle anything well so I believe I'll have some alternative route to this dream life I planned on living AFTER I successfully deal with this allergy I have lol

Offline Mzchurchgurl

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I need a real man I'm a woman of god and I'm trying to DAT someone with HIV I feel lonely I'm from chicago hit me up

Offline rookie72

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I was diagnosed 2 months ago. It took a while to get my blood results back and have only started meds just over a week ago.
I actually had a number of days in row where I didn't even think about my HIV status.
That was until I was prescribed Genvoya. Now I have this pill every night that reminds me of the night I got infected.  That's my personal challenge.

Offline benlovesblue

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6 months into the diagnosis, my biggest challenge is surviving it self.

I also worry for future career change since here in Malaysia, we DO NOT have any non discriminatory law against NOT hiring a poz.  :-[


Offline Skot

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The most devastating component to this virus is the isolation and loneliness . Heterosexual women treat me like I am deadly poison . No support for heterosexual oriented people . I am 53 and live in a rural community .  I have no friends ,family or children . I predict that I shall die alone . Things could be worse ...

Offline CaveyUK

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The most devastating component to this virus is the isolation and loneliness . Heterosexual women treat me like I am deadly poison . No support for heterosexual oriented people . I am 53 and live in a rural community .  I have no friends ,family or children . I predict that I shall die alone . Things could be worse ...

53 with no friends, family or children. Feeling isolated and hetero women don't 'get it'

Obvious possible solution.... move somewhere more metropolitan. Try to stimulate interests and build a circle of friends. Don't try and rush for a relationship - many hetero women are okay with HIV, but it's all about fishing to find them.

Living in an isolated rural community with no friends sounds like it as much of your problem as HIV is, to be honest...

Just a thought
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Offline Skot

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I live next to Mount Shasta . I have lived in cities and things were the same as far as dating went ... I went on some dates and had great chemistry with some . Everytime I disclosed my status it ended abruptly . I have yet to meet or even hear of any female "Bug chasers" . Why is that ? . I am done with cities and the drugs ,crime , traffic , insanity and am fortunate to be here in the mountains in a tiny log cabin . I have my art and am surrounded by beautiful scenery . It is more lonely for me to be in a city and see people doing things together .  Living here I am not reminded of what it was once like to be human .love

Offline Jim Allen

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Sorry to hear you have isolated yourself. Personally my take on dating  has always been that it is challenging, HIV does not make much difference. It also depends on the delivery of the disclosure, that took me a few attempt to get it right and i get laid just fine.

One thing from your post stood out, that is the bug chasers part, why would you want to be with a Bug chaser to start with? Personally I don't think its a very  romantic idea or something to build a relationship on.

Jim
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Offline s0nie

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ANGER, not that I am infected, or that my life may be shorter than it may have been, or that I may have to suffer some illness that others may not experience. Anger that I have not yet found my bliss. What I am meant to do with my life, what I should do with my life, how I can make a difference in the world. I want so much to feel love and experience love. I want so much to be Christ like and do the right things with my life. Its length does not matter but its substance does. I feel that I have a clock ticking that now creates a timeline that I need to follow. I have no problem with my mortality, I have no fear of death. But I have a fear of living, a fear that I will not live life to its fullest. That I will not be able to love as much as I can. That I will not be able to be loved as I would like. I fear that I will not be able to make the difference in the world that I want to make. Not that I want to be known as Gandhi, or King, or Einstein, I just want to make a difference in the world that is important.
This is beautiful and I feel the same.Thank you for sharing Peter. I had a mental breakdown many years ago. It was very stupid thing thinking back on it. But slowly but surely time has made it go away.  I know things will be a struggle as time goes on but I have to just do the best that i can. Many times i eat things that are not good for me and fatigue hits me hard. I I haven't had any relationships for a long time. I don't have any friends. My family doesn't know. For a long time i asked myself why me? Why me? But i've stopped being angry at myself. I want to smile more and make people smile while i still can. I want to love and be loved.

Offline Nathionk

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #232 on: August 04, 2016, 03:17:01 am »
The biggest personal challenge for me is just waking up and looking at those pill bottles... It's a consent reminder that I made a stupid life altering mistake, and I have to live with it forever, and most times living with it forever seems worse than just stopping meds and letting it take its course. The biggest part is realizing I deserve what comes to me regarding my status, whether it be rejected partners, a boyfriend dumping me because of getting diagnosed with it, and recently my neighbor posting all over Craigslist lies about me not taking medicine and to stay away from me. My biggest challenge is myself.
Diagnosed 11/2015
11/2015 - CD4 135 VL 670,000
01/2016 - CD4 900 VL 190
05/2016 - CD4 720 VL UD

Offline CaveyUK

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #233 on: August 08, 2016, 04:00:07 pm »
My biggest challenge is myself.

I'd agree with that. Have you sought any help for the way you are feeling? Seems like that would be a good thing to do.

We have all made mistakes which is why we are here. Hell, everyone - HIV or not - makes mistakes. Put it down to bad luck, cosmic karma or just one risk too far...whatever you do, there is absolutely no point in beating yourself up about your status anymore. It is what it is.

But the future starts with a blank slate. Live your life to the full, enjoy life and make the most out of every day.

I know that the stigma makes things tougher but try to rise above it. You are taking a pill to control a chronic condition. Before too long everyone takes some daily treatment for something....you've just got a head start.

But certainly look for help for the mental side of things. You don't need to deal with that crap on your own.
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Offline Rick Day

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #234 on: September 16, 2016, 12:20:16 am »
Hi, everybody! This is my first post here. My first post on any forum in dealing with me being an HIV positive man.

My biggest personal challenge is informing my parents about my status. They know I'm gay, but they're very conservative. I told my sister (my only sibling) a few of months ago. I knew she'd be accepting. We talked about how to tell the folks. She reminded me that one of my cousins, the only other gay man (out) in my family, has a partner who is poz. Mom and her sister love that man. So my sis suggested that I tell my aunt first, and get her advice on telling Mom. (Dad will be extremely difficult.) I'm just still very nervous, even to tell my aunt!! And this is unusual for me.

The immediate family is spread out in north Alabama. We only see each other on holidays and birthdays. Dad is one of those guys who keeps things in. Mom is someone who ignores those issues that deal with sexuality. Aunt is a theatre gal, but also ultra-conservative.

I'm not asking for advice (won't turn any down!). I'm posting this mostly to express myself in public, a way of "getting it off my chest" kind of a thang. Who knows... I might wake up tomorrow and decide to tell the whole family right away. (Nah. Won't happen.)


I look forward to making some new friends and network a little. All y'all have a great day!!
I found out that I am poz in Oct 2009, but I did not seek treatment until Jan 2016. Within 7 months, I became target not detected! (How awesome is that!?!)

I am treated through the 1917 clinic in Birmingham, AL, which is partially funded by the Ryan White Foundation. The clinic is part of the UAB Health System.

I am taking Descovy and Tivicay daily. My HIV clinic CRNP started me on Truvada, then switched me to Descovy right after it was approved and released. (She said it is supposed to be a better version that removes the long-term effects that some have experienced with Truvada. Plus, Descovy is a smaller pill!! 😉)

Offline Rick Day

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #235 on: September 16, 2016, 12:33:46 am »
ANGER, not that I am infected, or that my life may be shorter than it may have been, or that I may have to suffer some illness that others may not experience. Anger that I have not yet found my bliss. What I am meant to do with my life, what I should do with my life, how I can make a difference in the world. I want so much to feel love and experience love. I want so much to be Christ like and do the right things with my life. Its length does not matter but its substance does. I feel that I have a clock ticking that now creates a timeline that I need to follow. I have no problem with my mortality, I have no fear of death. But I have a fear of living, a fear that I will not live life to its fullest. That I will not be able to love as much as I can. That I will not be able to be loved as I would like. I fear that I will not be able to make the difference in the world that I want to make. Not that I want to be known as Gandhi, or King, or Einstein, I just want to make a difference in the world that is important.

Wow!!! That's a perfect description about how I feel. Especially a fear of not living my life and not making a difference. Like you, I'm not afraid of my mortality. But I see it now. I know my time is limited on this Earth.

What will I leave behind?

How will I impact the world around me??

What's my legacy going to be???
I found out that I am poz in Oct 2009, but I did not seek treatment until Jan 2016. Within 7 months, I became target not detected! (How awesome is that!?!)

I am treated through the 1917 clinic in Birmingham, AL, which is partially funded by the Ryan White Foundation. The clinic is part of the UAB Health System.

I am taking Descovy and Tivicay daily. My HIV clinic CRNP started me on Truvada, then switched me to Descovy right after it was approved and released. (She said it is supposed to be a better version that removes the long-term effects that some have experienced with Truvada. Plus, Descovy is a smaller pill!! 😉)

Offline msdana

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #236 on: October 20, 2016, 01:29:49 am »
I hope you get better soon. I feel you.

Offline Jim Allen

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #237 on: October 20, 2016, 02:55:37 am »
I hope you get better soon. I feel you.

Welcome to the forum.

Perhaps you can open a new topic and introduce yourself to the other members.
Are you living with HIV, how are you getting on, what kind of treatment are you on?

All the best.

Jim
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Offline RossH

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #238 on: November 12, 2016, 11:48:44 am »
I've only had this since April 2016 but I'm tired of it already.  I never really had much of a fighting spirit and have struggled with depression all my life.  It's worse now. Just getting through the day is a major effort due to fatigue and just not feeling well.  Some days I stay in bed all day.  I'm on Triumeq,  Effexor XR 150 Twice daily, Klonopin 3x/day  and Trazadone 1-2 at bedtime plus a BP meds lisinopril and Toprol.  I'm angry that I didn't take care of myself to keep from getting this. I'm not sure why I'm still here.  But I'll stay as long as God wants me to regardless.

10/28/16 VL 46 CD4 1423
5/16/16    VL  62800. CD4 882 34%
Triumeq started 6/15/16
7/13/16.   VL 52. CD4 718 40%
10/28/16  VL UD CD4 1478 43%
3/1/17       VL UD CD4 930 41%

Offline Gokhan_Tr

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #239 on: November 25, 2016, 08:26:35 am »
I think it's showing a positive attitude no matter what I feel, and feeling suspicious if everything is going well or if I am getting worse everyday even though my doctor says everything is going great.

Oh and being super super careful with other people as if I will hurt / infect them.

PS: I know I need psychological support and I am seeking for it yet I haven't found any good doctors to lean on.

Diagnosed @26.02.2016
VL: 15.000 - #CD4:261 - %CD4: %31,6
Started Stribild @14.04.2016
@16.05.2016 VL: 29 - #CD4:660 - %CD4: %33,5
@11.08.2016 VL: Undetectable - #CD4:669 - %CD4: %38,3
@11.11.2016 VL: Undetectable - #CD4:820 - %CD4: %33,5

Offline Still Unbroken

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #240 on: November 27, 2016, 05:13:00 am »
Dan, I hope things improve for you soon.  Personally, I'm afraid -almost paranoid- about missing doses.  I've only been on meds for 5 months, but I haven't missed any so far.  I felt so crappy when I had that nasty PCP a while back and do not wish to repeat that experience.

As to the biggest personal challenge, I guess it's not getting overwhelmed by all this.  I'd not had any health concerns until a little over a year ago when I found out my HIV status.  It's was a shock to find out that I really wasn't as invincible as I've always felt I was.  I try not to think of any of this as permanent, although I know it is.  It helps keep me from dwelling on it all.  Take care.

David

 Dan, my partner and were both diagnosed as poz a few months ago. We have both always been in good health, not on any medications and rarely went to the doctor. This past May everything changed for me. I started going down hill fast and felt like my body was shutting down. I was very scared and couldn't figure out what was wrong with me. I had to stay in bed all day in order to find some relief and comfort I really thought I was going to die. When we were diagnosed we also were in shock, I too always felt invincible, my mindset has always been stuck at age 23 LOL a 23 year old mind in a 53 year old body! Taking the meds every day were new for both of us, but we are both loyally taking them. I do not want to miss them or forget them and end up feeling as bad as I did in May.

Offline bigsur123

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #241 on: January 06, 2017, 12:38:14 am »
It probably sound shallow but dealing with lipoatrophy has been my biggest challenge. I handled the other symptoms and side effects, the uncertainty about the future, the clinical trials, the medical bills, my partner being ill, etc with less difficulty. Because I've kept my HIV infection a secret from practically everyone the lipo stressed me out. When coworkers pulled me into their office and asked if I'm feeling okay, when family members made comments about how thin I am, when strangers made rude comments it all felt like a personal attack. I'd have to quickly think up an excuse to cover up the secret. It suck when you catch people talking about you behind your back. Part of me would like to just tell people and be done with it but I have my partner's feeling to think about. It's not my secret is our secret.

So if it is such a big secret why am I posting photos? Because I felt the need to share my lipo experience with other people who are going through it. Because I'm not ashamed of having HIV. Because if people find out about it they will just have to deal. My partner was not happy when I posted my lipo photos but since doing so I've received emails from over 300 people from literally around the world thanking me for doing so. He has since conceded that I did the right thing.

Sorry what are Lipo photos and how would I see them?

Offline Heartbeat

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #242 on: January 11, 2017, 12:10:08 am »
My biggest challenge is taking my meds on time, I never miss a day but i also keep taking them at different times, The other challenge is disclosing my status to my family to date I've been living with Hiv for a year and only 3 people know my status. I know for a fact my family will support and stand by me but i don't see the point of putting them through the pain and heartache :-X :-X :-X. Lastly it's the side effects of the meds the vivid dreams, back pains and hot flushes.

Offline Jim Allen

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #243 on: January 11, 2017, 04:02:38 am »
@Heartbeat

Welcome to the forum, glad you found us.

Perhaps you can open your own introduction thread and introduce yourself it will give more members an opportunity to reply and support you.

Sorry to hear about the challenges, that said wild dreams etc. normally settles down once you body adjusts. That said if its bothering you and persists you could always talk about a possible switch.

As for disclosing well that one is very personal and different per person, overall I have to say as living with HIV nowadays is very manageable and live Simpy goes on so to speak the value of disclosing when not needed looses it worth somewhat.

Take it easy.

Jim
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Offline newbie2016

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #244 on: January 13, 2017, 07:16:42 am »
emotions and the secrecy
Secrecy, amazing how often you can be caught in your tracks hiding information,such as illness related,doctor,specialist appointments
Emotions well that has been emotionally exhausting

Offline dallas nk

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #245 on: January 14, 2017, 10:25:31 am »
My biggest personal problem is depression and fear..fear of the future for myself and children. I have four small children who I would love to see grow and become adults. Also, knowing that if co-workers find out, etc., I would be "black-balled" and possibly fired. Unfortunately, most don't know the facts about HIV and they're afraid that if you "touch" them they will get it so the stigma is real and we suffer for it. I'm a woman and that makes it EXTRA hard. Its also hard to keep this secret from family and friends. I'd recently told my mother (after long careful thought) and I was so surprised at her response!! My fear was unfounded because she was more supportive than I'd hoped.
09/20/2016-diagnosed cd4 41 cd%5.8 VL 34990
11/2016-post-poned treatment while awaiting to qualify for ARV study- cd4 29 cd%? VL?
12/2016-started treatment (Triumeq) this late because found out didn't qualify for research study
1/24/2017- cd4 233 cd%15 VL<40
4/27/2017 cd4 206 cd%18 VL <40
07/24/2017 cd4 227 cd%20.6 VL <40
10/31/2017 cd4 191 cd%23.9 VL 70
12/7/2017 cd4 248 cd%22.5 VL <40
1/30/2018 cd4 220 cd%27.5 VL <40
4/17/2018 cd4 295 cd%29.5 VL <40
8/9/2018 cd4 310 cd%31 VL <40
11/15/2018 cd4 293 cd%32.6 VL <40
02/12/2019 cd4 347 cd%31.5 VL <40
10/09/2019 cd4 380 cd%31.7 VL<40
01/30/2020 cd4 337 cd%37.4 VL 70(started Biktarvy)
06/05/2020 cd4 306 cd%38.3 VL 20
07/31/2020 cd4 235 cd%39.2 VL 20
08/28/2020 cd4 248 cd%31 VL <40
12/02/2020 cd4 329 cd%36.5 VL 160

Offline gpath

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #246 on: February 11, 2017, 05:07:00 pm »
Hello dan I actually first time in forum.. i'm totally deafness from birth, i living with HIV for 13 years.. i feel improving better because my 1 medicine name odefsey    since 1 years before i had 3 medicines for 5 years, cause bone make less and less. My Dr is woman, she really care about my health. my living is work part time job , i m alone and lstay at home. i lost many friends ..and some deaf  did speech hate to me from online. i can't report  to other state. we r different states..
i'm hurting lot . seeing my therapy one time day a every week. she understand my emotions.. she and i working on change.org about hate speech...  does it will help change.org for hate speech. i have long story. i report law enforcement on person from missouri  hate speech against me.  law enforcement won't help it at all...i really angry about hate speech online.. sweetdeeam...

Offline Jim Allen

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #247 on: February 11, 2017, 08:08:13 pm »
Hi

Welcome to forum sorry to read your having a rough time.

Great that your on the new meds and doing well on them, I do however hope you engage with the world again and get out of your home to enjoy it, perhaps some therapy to help you vent and move onwards could help. 

Not sure I understand the hate speech issue as I have not seen it so can't really comment directly on that, I do however hope you can work towards/on a more positive life, no pun intended. Personally I know for sure there are plenty who say both hateful things about my gender and also my disabilities and in some instances slanderous (defamation of charterer) things about me personally online. Up to them to waste their time doing that, I would and will not waste my time, energy or life on them.

Anyhow hope that you can find a solution that brings you peace in life.
Looking forward to seeing more of you on the forum and if you post your  introduction thread in "living with HIV"  I am sure more members will be able to talk to you and perhaps help. 

Jim
« Last Edit: February 12, 2017, 04:06:56 am by JimDublin »
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Offline abrokenman

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For Me, considering if I stay on My meds at this point - because what's the point!

I'm at the point to let the chips fall where ever they fall. 
You put One foot in front of the other

Offline Ptrk3

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Sadly, the "chips" will fall only one way, if you stop your meds:  eventual sickness and death and, quite often, not in a pleasant or quick manner.

The point of taking meds is to stay healthy and alive and to do our part to stop the spread of this virus.

Yes, it can be challenging at times. Many of us have been where you are, so I understand your feelings completely. I do not minimize them.

Please continue your meds and, if necessary, seek support and guidance from professionals, if you think you may be depressed.

Continue, too, to seek support from your peers on these forums.  It does get better, maybe not "easy," but better.

Take care of yourself.
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