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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 68886 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....
12/28/2015  VL ud  CD4 462  40%
06/08/2015  VL ud  CD4 647  39%
10/21/2014  VL ud  CD4 378  44%
06/12/2014  VL ud  CD4 725  37%
03/14/2014  VL 29  CD4 597  35%
11/14/2013  VL ud  CD4 595  37%
08/12/2013  VL ud  CD4 557  33%
04/22/2013  VL 43  CD4 430  31%
01/16/2013  VL ud  CD4 524   34%
09/28/2012  VL 59  CD4 471  31%
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02/27/2012  VL ud  CD4 503  28%
11/25/2011  VL ud  CD4 765  32%
06/17/2011  VL ud  CD4 660  29%
11/03/2010  VL ud  CD4 654  31%
07/15/2010  VL ud  CD4 507  27%
03/25/2010  VL ud  CD4 741  23%
11/19/2009  VL 59  CD4 704  24%
08/17/2009  VL 89  CD4 493  18%
05/06/2009  VL 105 CD4 545  17%
01/26/2009  VL ud  CD4 585  16%
11/26/2008  VL 247 CD4 338  13%
06/28/2008  VL 3,308,049  CD4 444

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 »
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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.
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
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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.
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Online JimDublin

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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.
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Online 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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Online JimDublin

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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."

Online JimDublin

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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   

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
leatherman (aka mIkIE)

All the stars are flashing high above the sea
and the party is on fire around you and me
We're gonna burn this disco down before the morning comes
- Pet Shop Boys

chart from 1992-2015
Isentress/Prezcobix

Offline Alternis

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  • Posts: 10
  • Da Robur, Fer Auxilium
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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  • Posts: 1
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

  • Member
  • Posts: 28
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

  • Member
  • Posts: 5
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.  :-[


 


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