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Author Topic: Is this ever going to end?  (Read 5217 times)

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Offline Stone

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Is this ever going to end?
« on: June 01, 2010, 07:22:31 AM »
I just found out that another friend of mine has tested positive.  He has a lot going wrong in his life and now this is added to the mix.  It is just so damn unfair!  I know the party line is to always take precautions and consenting to unprotected intercourse is consenting to becoming HIV positive but why must the price of a lapse in judgement be so high?  I have been watching my brother become victim to Lipo and have his self esteem go totally down the drain.  I have listened when he has told me that he feels like a bio hazard and doubts he will ever date again.  Now it starts with someone else.  I am just so unbelievably angry and there is nothing I can do about it but watch it happen.  Again.

Offline Moffie65

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Re: Is this ever going to end?
« Reply #1 on: June 02, 2010, 03:23:38 PM »
For someone who has been living with this bug for 27 years now, and has been near dead three times and once dead; I find your post severely disturbing. 

You project nothing but hopelessness shrouded in anger, and what we do with that is to turn it in a positive direction.  If indeed you are angry and really want to make a difference; learn everything you can about HIV on this site, and then use the search function here to find an HIV service organization in your area, and get busy making a difference.  There is no other way to take care of your pain than to get involved in making a difference.  It has worked for me through watching many my friends suffer and die excruciating deaths, when nobody in society, government, health care or anything else gave a damn.  All they wanted to do in the beginning was to shuffle us off to Cuba and total isolation from the general population. 

So, the only advice I can loan you is to take that anger and get busy.  Time is wasting.

In respect,
Tim.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline mecch

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Re: Is this ever going to end?
« Reply #2 on: June 02, 2010, 03:44:38 PM »
I just found out that another friend of mine has tested positive.  He has a lot going wrong in his life and now this is added to the mix.  It is just so damn unfair!  I know the party line is to always take precautions and consenting to unprotected intercourse is consenting to becoming HIV positive but why must the price of a lapse in judgement be so high?  I have been watching my brother become victim to Lipo and have his self esteem go totally down the drain.  I have listened when he has told me that he feels like a bio hazard and doubts he will ever date again.  Now it starts with someone else.  I am just so unbelievably angry and there is nothing I can do about it but watch it happen.  Again.

I too dont like your negative attitude.  HIV is unfair but lots of unfair stuff comes up in the crap shoot of life.

And why is your brother getting Lipo, now??  He should be working to prevent this with his doctor.  Far as I know, almost all current HAART combos in rich countries are low on lipo, to non existant.

If he feels like a bio hazard he needs professional help.  Furthermore, he can always date another HIV+ guy, for crissakes.

If you are angry there are constructive things to do to funnel your anger.  Think for a minute or two about what they might be, and report back to us.  If you dont report back anything, I hereby accuse you of laziness! And being a Debbie Downer.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: Is this ever going to end?
« Reply #3 on: June 02, 2010, 04:21:15 PM »
Hi Stone . I'm really sorry the people you love are having a tough time at the moment .

I think the guys here are showing you a little tough love . If I were you I would rise to the occasion and tell these rascals what you are gonna do to make things better for the ones you care about . Now what do you have to say ?   

Offline Stone

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Re: Is this ever going to end?
« Reply #4 on: June 02, 2010, 08:40:54 PM »
Wow!  Sorry that I didn't realize that finding out someone was HIV positive is such a wonderful thing that there is no room for getting upset.   I am grateful for the advances that have been made.  I am well aware that if this was 1985 problems like lipo and dating would be non issues because my brother would have died by now.  I came to this site thinking that perhaps, if only for a minute, I could just vent and take a break from always being the cheerleader.  I sincerely apologize for offending anyone as that certainly was not my intent. 

Mecch, please read my earlier posts.  There is much more than "dating someone else who is positive for Christsakes" involved with my brother entering the dating world again.  As for the lipo he has changed to Atripla which his ID doc said is less likely to cause lipo than his previous regimen but alas the lipo is continuing.  His viral load, T Cell, etc counts are where they should be so he is not inclined to mess with the medications too much despite the physical appearance implications.  As for learning about HIV, I have done nothing but learn about this disease since my brother and his late partner were diagnosed with it.  Not only have I been all over this site and others but as a nurse I have attended multiple continuing education courses. 

Take my anger and do something with it or I will be deemed "a Debbie Downer or LAZY"?  Lets see, I am an advocate for patients that walk into my ER who have had funding for their medication cut off, I find for them and educate them on available resources, I educate them on the importance of med compliance, and above all I educate my coworkers.  I currently am looking into becoming an Infectious Disease Nurse Practitioner with an emphasis on HIV and AIDS but so far the only program I have found is in California which is a bit difficult due to the fact that I don't live there.  Finally I have volunteered to deliver food to folks that can't get out due to advanced AIDS or cancer.  That enough for you? 

I had just received the news when I made the original post.  I posted it in this forum thinking that this was a place where people that have dealt with the same issues and emotions could relate and offer some support.  Apparently I was wrong.   

     

Offline Matty the Damned

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Re: Is this ever going to end?
« Reply #5 on: June 02, 2010, 08:43:15 PM »
Wow!  Sorry that I didn't realize that finding out someone was HIV positive is such a wonderful thing that there is no room for getting upset.   I am grateful for the advances that have been made.  I am well aware that if this was 1985 problems like lipo and dating would be non issues because my brother would have died by now.  I came to this site thinking that perhaps, if only for a minute, I could just vent and take a break from always being the cheerleader.  I sincerely apologize for offending anyone as that certainly was not my intent. 

Mecch, please read my earlier posts.  There is much more than "dating someone else who is positive for Christsakes" involved with my brother entering the dating world again.  As for the lipo he has changed to Atripla which his ID doc said is less likely to cause lipo than his previous regimen but alas the lipo is continuing.  His viral load, T Cell, etc counts are where they should be so he is not inclined to mess with the medications too much despite the physical appearance implications.  As for learning about HIV, I have done nothing but learn about this disease since my brother and his late partner were diagnosed with it.  Not only have I been all over this site and others but as a nurse I have attended multiple continuing education courses. 

Take my anger and do something with it or I will be deemed "a Debbie Downer or LAZY"?  Lets see, I am an advocate for patients that walk into my ER who have had funding for their medication cut off, I find for them and educate them on available resources, I educate them on the importance of med compliance, and above all I educate my coworkers.  I currently am looking into becoming an Infectious Disease Nurse Practitioner with an emphasis on HIV and AIDS but so far the only program I have found is in California which is a bit difficult due to the fact that I don't live there.  Finally I have volunteered to deliver food to folks that can't get out due to advanced AIDS or cancer.  That enough for you? 

I had just received the news when I made the original post.  I posted it in this forum thinking that this was a place where people that have dealt with the same issues and emotions could relate and offer some support.  Apparently I was wrong.   

     

Oh simmer down.

Moffie (and to a lesser extent that Swiss fella) are merely pointing out that your perception of what having HIV is like is different to the actuality for many folks.

Our lives are not mires of shit and woe. They can be (and usually are) fulfilling, rich and worth living.

MtD

Offline Stone

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Re: Is this ever going to end?
« Reply #6 on: June 02, 2010, 09:01:01 PM »
Matty,

Way to miss the point.  I am fully aware that the lives of people that have HIV are not "mires of shit and woe" but there are negative changes.  I have emphathy for folks dealing with the negative changes.  I worry about about the yet to be fully realized effects of the medication.  My heart breaks when a patient receives the news that their rapid HIV came back positive and further testing is needed.   And yes, sometimes I get angry about it.  I get over it, but I'm pissed for a while.  It's like the only people that can have emotions here are folks that are HIV positive.  I in no way am insinuating that I know what it is like to be HIV positive because I have not a clue but believe it or not being on this side is no picnic sometimes either.   

Offline mecch

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Re: Is this ever going to end?
« Reply #7 on: June 02, 2010, 09:05:39 PM »
Ok man sorry to be so cranky, really.
But since you want some support, why dont you explain again why your brother feels like a biohazard and doubts he will never date again.  Put that information in this post.

Since he's undetectable, on what grounds is he a biohazard? He may feel that way but its not realistic.

Now that you have shared what you do do, I certainly dont think you are lazy.  

Now you have a right to a dark passage and gloomy anger with this bad news about your friend. Nobody goes out and celebrates a serocoversion.  

However, look at what you insinuate about your friend:

"I have been watching my brother become victim to Lipo and have his self esteem go totally down the drain.  I have listened when he has told me that he feels like a bio hazard and doubts he will ever date again.  Now it starts with someone else.  I am just so unbelievably angry and there is nothing I can do about it but watch it happen.  Again."

You insinuate he is doomed to repeat your brother's unfortunate physical and emotional challenges.  And why?  

It just doesn't make sense to a lot of us to assume the doom and gloom you are assuming awaits your friend.

I guess that's what we were trying to say.  Also it won't help your friend at all if you project the sadness and anger you feel about your brother onto your friend's situation.

Well, maybe the anger at the world and the virus and fate.  

But I do hope that when the dark cloud clears in your head about the bad news, you do look for a positive outcome for your friend.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Is this ever going to end?
« Reply #8 on: June 02, 2010, 09:09:14 PM »
  It's like the only people that can have emotions here are folks that are HIV positive.  I in no way am insinuating that I know what it is like to be HIV positive because I have not a clue but believe it or not being on this side is no picnic sometimes either.   

Of course you have a lot of clues what it is like to be HIV+. Dont sell yourself short.  You have a right to your emotions and in these threads too of course!

Just don't assume such a negative outcome. You're a nurse, you've had all these courses to boot. Its 2010.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Matty the Damned

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Re: Is this ever going to end?
« Reply #9 on: June 02, 2010, 09:14:02 PM »
Matty,

Way to miss the point.  I am fully aware that the lives of people that have HIV are not "mires of shit and woe" but there are negative changes.  I have emphathy for folks dealing with the negative changes.  I worry about about the yet to be fully realized effects of the medication.  My heart breaks when a patient receives the news that their rapid HIV came back positive and further testing is needed.   And yes, sometimes I get angry about it.  I get over it, but I'm pissed for a while.  It's like the only people that can have emotions here are folks that are HIV positive.  I in no way am insinuating that I know what it is like to be HIV positive because I have not a clue but believe it or not being on this side is no picnic sometimes either.   

Yeah, well if I sounded excessively assholish I apologise. I appreciate that being close to the virus can take a toll on negative folks.

For the record I agree with most of the advice that Heidi has given you.

Regards, :)

MtD

Offline Stone

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Re: Is this ever going to end?
« Reply #10 on: June 02, 2010, 10:12:24 PM »
OK I can see how my original post appeared to be projecting negativity from my brother onto my friend.  Perhaps I should have made more of generalization rather than listing specific symptoms.  It's just that now that my friend has contracted the virus I worry.  I am a nurse.  That is what we do.  We worry.  Will he have a bad reaction to the meds?  Is the strain resistant?  His family hasn't accepted that he is gay.  What are they going to do with this?  I have yet to find anyone come out of a diagnosis of HIV unscathed by something.   

As for my  brother?  He thinks that just because he has this virus he is a biohazard.  I have talked to him six ways from Sunday trying to convince him that he is not but I think he still carries with him the lessons from the 80's.  He won't date because he would have disclose and if things didn't go well and his status got out it would destroy him financially.  He lives in a backwards town and the discrimination would be swift and severe.  I think this forced secrecy also adds to the biohazard feeling.  It is as if he needs to be ashamed and hide.  It is unbelievably hard to watch.  He is successful, nice looking (if I do say so myself), and fun to be around but can't see it.  I guess that is what I was railing at the Gods about in my original post.  It is just so damn hard to watch people you love hurt and be powerless to prevent it.   

Make no mistake.  I have fine tuned the role of the cheerleader and have a poker face that has fooled many.  I am a total PollyAnna when I talk to them.  That's why I made the original post because I just needed a minute to blow off some negative energy.       

Offline mecch

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Re: Is this ever going to end?
« Reply #11 on: June 02, 2010, 10:49:27 PM »
Yeah cool for the blowing off.

Now I remember your brother's situation.  When you ask him where he sees himself in 5 years time, whats his response.  He's been in this rut for quite a while, right?  Isn't there any way he can rally and see dating as a challenge - and even maybe see putting this over on the town as a challenge. As in, "OK, I'll be discrete and those fools will never need to know, but I'll be damn if I can't live my life again cause of them."   How did he manage to stay discrete with is last lover?  

How bad is the lipo by the way - and what kind?

As for your friend.  I haven't heard of someone not being able to find a tolerable combo.  I've switched through 4 now.  Two gave me rashes. The rashes never got horrible but the doc switched me saying I should have no rashes.  

As you know, if your friend has a resistant strain, its not necessarily disastrous.  

Maybe he doesn't need to tell his family yet, or maybe he can tell them and let the chips fall where they will. I hope you continue to be a support and maybe he can rely on his friends to fill the family's role, if the family isn't up to it.

Finally, yeah HIV does leave its scars, past, present and maybe future.  

For what its worth, my shrink told me the breakup of my longterm relationship was much more scarring and heavy for me than my HIV diagnosis. Which is to say, life comes with ups and down. I don't think its a river of tears however.

Oh, and my ex had an HIV diagnosis a few years before we broke up, and he used some doom and gloom arguments to really manipuluate his family and myself.  I bought it hook line and sinker.  Just saying.  Its not the road you want to take in this day and age.  Especially considering what you mention, that the doom and gloom was once very real indeed.
« Last Edit: June 02, 2010, 10:52:04 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Stone

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Re: Is this ever going to end?
« Reply #12 on: June 03, 2010, 01:11:25 AM »
When I ask my brother about the future he only identifies working as something he will be doing.  He tried to date someone but when he started thinking about intimacy he got scared and ran.  I am encouraging him to try to expand the area that he is looking for potential partners so there is less risk of information leaking back.  I think he is considering it but he is still nervous.  What makes this harder is that I see him WANTING to date now but not doing it because he is so scared.  His last partner was actually the person that gave the virus to him so this was not an issue at that time.

As for the lipo, it is affecting his legs, butt, and now he is developing the fatty deposits in his arm pits and his abdomen.  His arms are also affected somewhat but not to the extent of his legs and butt.  We have talked about some of the recent drug advances in this area but being in health care I am not a big fan of trying the new stuff right away.  I prefer the "you go first" method.  Medically his doing great.  Looking at his labs alone you would never guess that he has HIV.  I, selfishly I guess, just want him here lipo be damned

I recently got a first hand look at what AIDS looks like without medication.  I had a patient come in that was diagnosed two years ago and is not / has not been med compliant.  They had PCP, fungal infections on their skin that covered at least 75%, KS lesions, and wasting.  I felt so bad for the patient but at the same time couldn't help but be thankful that if my brother had to get it he got it after medication was available.

As for my friend, I am just standing back prepared to provide support and information when requested / needed but waiting for him to tell me what he needs.  Right now he is still trying to adjust to the diagnosis so I am just giving him time.  He is going to be fine, he has a good attitude and a lot friends at the ready to provide support when he hits the bumps so it is just this first part of the journey that is going to be a bitch.

     



 

Offline Moffie65

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Re: Is this ever going to end?
« Reply #13 on: June 03, 2010, 01:22:34 AM »
Stone, I sincerely apologise for my incorrect assumptions, which led me in the wrong direction.
 I honor your work, and have always had a very high regard for Nurse Practitioners, as they and they alone are probably most well educated in HIV of any practitioners in the field of medicine.

I'll give you something.  Look up HIV and Nurse Practitioners in New Mexico.  Most of the Ryan White medical care in that state is performed by Nurse Practioners.  Nice place to live also.

Again, I am sorry we got off on the wrong foot. 
Tim.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Hellraiser

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Re: Is this ever going to end?
« Reply #14 on: June 03, 2010, 10:08:12 AM »
Do you have the same reaction when someone tells you they have cancer or diabetes?  The problem with the disease is mostly on your side of the fence.  Most of us are taking control of our disease and treating it.  It's a single celled organism, not your own body eating you alive from the inside.  It's also (with HAART) controlled for the most part and the medication is not nearly as bad as you seem to think it is.  People testing positive is not good, but life isn't over from that point on.

Offline Stone

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Re: Is this ever going to end?
« Reply #15 on: June 03, 2010, 04:31:38 PM »
Hellraiser,

Yes I absolutely have the same reaction when someone tells me they have cancer or diabetes.  I want only the good things in life for people that I love and it hurts me when things happen to them that cause them to suffer pain and anxiety for ANY amount of time.  As I have explained earlier, I am well aware that having HIV does not equal the end.  Just as cancer or diabetes does not always equal the end.  Getting to the other side sucks rocks however and there are complications that are now in the life of someone who has one of these diseases that were not there before.  Why is it so hard to understand that I feel bad for someone because of this? 

Offline Stone

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Re: Is this ever going to end?
« Reply #16 on: June 03, 2010, 04:46:39 PM »
Moffie,

No worries.  As was pointed out to me, I can see how my original post appeared to be projecting my brothers situation as an inevitable result on my friend.  In retrospect I should have used more general terms.  I made the post in the heat of the moment and was just sort of exploding 

The HIV NP is something I have been looking into for a while but I can't find a program that is either online or closer.  I used to think about moving but now that I have gotten older realize that I don't want to be away from friends and family.

Thanks for the tip on New Mexico, I am going to dig a bit deeper into their colleges and see if there is something that will work.  Thanks again!       

Offline mecch

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Re: Is this ever going to end?
« Reply #17 on: June 03, 2010, 04:48:58 PM »
Why is it so hard to understand that I feel bad for someone because of this? 

Its not hard to understand.  Some of us merely pointed out the projection of one person's situation (your brothers) onto another's - your friends.  And your own projected fear and sadness onto others.  We are not the heavies nor cold heartless people for doing so.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Stone

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Re: Is this ever going to end?
« Reply #18 on: June 03, 2010, 04:56:47 PM »
Mecch

I was speaking to Hellraiser there.  I have attempted to clarify my statements, taken responsibilty for being too general in my initial post, and acknowledged how the original post could be misconstrued.  Yet I am still being called out.  I don't know what else I can say.

Offline Matty the Damned

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Re: Is this ever going to end?
« Reply #19 on: June 03, 2010, 04:59:29 PM »
Its not hard to understand.  Some of us merely pointed out the projection of one person's situation (your brothers) onto another's - your friends.  And your own projected fear and sadness onto others.  We are not the heavies nor cold heartless people for doing so.

I think Stone gets it, Heidi. So it's probably time to put the stick down and step away from the dead equine.

MtD

Online Miss Philicia

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Re: Is this ever going to end?
« Reply #20 on: June 03, 2010, 05:04:48 PM »
Mecch

I was speaking to Hellraiser there.  I have attempted to clarify my statements, taken responsibilty for being too general in my initial post, and acknowledged how the original post could be misconstrued.  Yet I am still being called out.  I don't know what else I can say.

Eh, don't worry -- I should have spoken up yesterday because when I read your first post I totally "got" that you were venting under quite understandable circumstances.  I guess it's just hard for some to pick up on these things without visual body language.
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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Re: Is this ever going to end?
« Reply #21 on: June 03, 2010, 05:07:47 PM »
Ah Ok.
As long as you dont think i am, or this forum is, heartless to well meaning HIV- members.  I remember from all your posts a feeling I got that you bear this all rather heavily, as you yourself confirm, and that you are a big worrier.  
Me personally just hoping that there is some joy in you and your bothers lives together, thats all.

MY BROTHER is a huge worrier and so I'm projecting a bit of fear because I don't want to tell him about my seroconversion - he saw me go through too much trauma in my history with HIV+ boyfriends! And he is like you a constitutional worrier so now I am worrying about his worrying, so I guess I worried about yours too. Take that as a tender feeling towards you, not a critique!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Stone

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Re: Is this ever going to end?
« Reply #22 on: June 03, 2010, 06:07:31 PM »
Ah Ok.
As long as you dont think i am, or this forum is, heartless to well meaning HIV- members.  I remember from all your posts a feeling I got that you bear this all rather heavily, as you yourself confirm, and that you are a big worrier. 
Me personally just hoping that there is some joy in you and your bothers lives together, thats all.

MY BROTHER is a huge worrier and so I'm projecting a bit of fear because I don't want to tell him about my seroconversion - he saw me go through too much trauma in my history with HIV+ boyfriends! And he is like you a constitutional worrier so now I am worrying about his worrying, so I guess I worried about yours too. Take that as a tender feeling towards you, not a critique!


Thanks for your concern and no I didn't take it is a critique.  I am a big worrier and as a nurse sometimes have a little too much education.  The problem is that I am the stewardess for my friends and family.  By that I mean that if I don't appear worried then they don't worry.  This works well when I am trying to reassure them about things but it also means that I have to swallow it when I am falling apart.  When my brother's partner was in ICU I knew how it was going to end based on his condition and the rapid organ failure that he was experiencing.  I couldn't let on however and walked around with a smile only providing the encouraging information while swallowing the bad signs.  When the inevitable happened, I felt like I had been hit by a mac truck as I was exhausted from carrying all that shit around with me for 10 days.  I guess I just wanted  a break from being the stewardess when I made the orginal post.  I will be more careful in the future.

My brother and I have a wonderful relationship and there is more fun than pain.  I am greatful that he is healthy and other than the lipo has no issues with the HIV.  It is just hard to listen to this person that used to be so cocky and sure of himself say that he is a biohazard and is "old, skinny, and balding" and no one is going to want him ever again.  It is hard to watch him just work, eat, and sleep unless I drag him out somewhere.  He is getting better on some of this stuff but it is taking a long time and he has miles to go. 

Online Jeff G

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Re: Is this ever going to end?
« Reply #23 on: June 03, 2010, 06:16:16 PM »
Your relationship with your brother is touching . Many people myself included don't get that kind of support from a sibling .

I hope you are not afraid to come here and vent . The way you handle youself under pressure is to be admired .

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Is this ever going to end?
« Reply #24 on: June 04, 2010, 09:20:55 AM »
Thanks for the tip on New Mexico, I am going to dig a bit deeper into their colleges and see if there is something that will work.  Thanks again!       

Western New Mexico University in Silver City has by far and away the most advanced PRN program, probably in the country.  I wish you luck in your pursuit.  :)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline xman

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Re: Is this ever going to end?
« Reply #25 on: June 13, 2010, 10:30:29 PM »
would you please inform us which meds your brother took in the past and how long he's infected? this would explain some of the current side effects he's experiencing. thanks.
sign the petition launched by the aids policy project addressed to the nih aimed to increase the money needed to find the cure:

http://www.aidspolicyproject.org/petition_for_the_nih

we can make a difference and we need to fight. please support them! it doesn't cost you anything. they need it now more than ever!

Offline Billy B

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  • Posts: 374
Re: Is this ever going to end?
« Reply #26 on: July 10, 2010, 11:39:44 PM »
Stone- I can empathize with your brother's view about intimacy and dating. I felt damaged and defective when I would think about dating. It took many years to understand the fact that I was still a good person despite the bad thing that had happened to me.
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
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