Newly Poz and Pretty Lost

[alantalbot]

Hello,

I am a 30 year old male living in California.  I have HIV.  I did a confidential rapid test and it was positive.  That was a few months ago and I have not been able to function since then.  I had a very mild seroconversion but then started getting all kinds of weird symptoms which are still continuing...neuropathy-type stuff in my legs – it comes and goes but it’s still there.  Some other things as well.  I don’t know if I’m a rapid progressor but it sure seems like it.  I come here every day to read the forums and have read all the info on this site and on thebody.com.  It has been very helpful and I know you guys are very supportive of each other here.  Anyway I am worried that I have a very nasty strain of virus – usually P.N. isn’t supposed to start this early in the course of HIV.  Ugh.

I am educated and have a job that does not offer health insurance.  I have private insurance but it is horrible, I have to pay a very high deductible before they will pay anything.  All the stuff about the ‘unthinkable consequences’ about the budget cutting in California has gotten me that much more freaked out.  I don’t make much money, but I’m not poor, yet I can not afford the cost of having HIV.  ADAP is being cut too…$1700 a month for meds?!!!  Who can afford that?!  I have a boyfriend who is an awesome guy and I know he’ll leave me if I’m poz, and then I will be more suicidal than I already am.  My family will disown me.  My job will fire me for missing work to go to various medical appointments.  I am not sure what to do at this point.  Maybe it’d just be quicker and easier if I let this thing go and take its course.  I guess I have too much nerve to commit suicide right now but I have panic attacks every day.  I can not imagine living the rest of my life with HIV.  I just look at all the people around me who are neg and it is so saddening.  I can’t re-do the past, I know that.  Yet I don’t want to die a horrible and prolonged and painful death or become destitute.  Ugh, I don’t know what to do.  Advice would be appreciated.
Thanks.    

 

[komnaes]

Hi Alan, welcome to the forums.

I guess most of us will ask first whether you already have a confirming Western Blot test. You only mentioned a confidential rapid test. If that is all you have you should follow it through with a WB.

I don't live in CA anymore so I will leave it to the others to chip in, but no matter how hard it's it has to be ways to get you the medical attention needed. To let it "runs it course" is definitely not an option, the fact that you're not dealing with it is definitely making you panicky. And while you have no one to really talk about your worries and concerns now, that's maybe why you're expecting the worst - your bf will leave you, family will disown you, etc.

I don't know which part of CA you're at now but I am sure there are plenty of support groups, which at least should be able to give you some bearing so you can start processing all your concerns and fears one by one.

We have all gone through the initial stage - and things do really get easier. Many of us have come out of even more dire situations. So please don't give up!

Wish you the best, Shaun

[alantalbot]

Thanks Shaun - some good advice there.  I'd rather do something about my situation
instead of nothing..... And yes, fear is a big, big issue right now.  I haven't gotten
a WB yet, but I'm sure I will.  I'll look for support groups and see what I can get going
here.  HIV is a huge thing to swallow.....and I was the LAST person on the planet that
anyone would've thought would get it.  It just goes to show that HIV can hit literally
anyone nowadays.  I was looking at the stats for LA County and California as a whole.
Tens of thousands in LA County alone (I think 14,099 was the last number).
It's pretty frightening when you think about it. 

[komnaes]

Hey Alan,

Well, the way I see it is anyone who has a sex life can get HIV, as simple as that. It's an infectious disease and those bugs don't have a mind of their own deciding who and when to infect (provided of course that when proper protection is not used). So don't make it harder on yourself by moralizing it.

Right now, really, get a WB confirmation test and take it from there.

Hugs, Shaun

[Robert]

alan

you like to worry and that's not good.  The first thing you have to do is get officially tested for HIV.  June 27 is National HIV Testing Day. Do yourself a favor and get tested.  Once you get that result then you can start looking into support groups and treatments etc.

By the way, the cut-off point for ADAP assistance is a $50,000 annual income (California).  So you just might qualify.  You're right, California budget problems are hitting everyone hard but I'm thinking that financial assistance for the meds will not be touched.  More than likely, other ADAP assistance programs (dental, counseling, support groups, food and housing assistance etc) will be adversely impacted.   

But before you worry about any of that, first you have to get that confirming diagnosis.  Don't fuck around.  Just go and do it.  Confidential rapid tests just don't hack it.   

robt 

[Inchlingblue]

I know these sound like cliches but: take a DEEP breath and take this one-day-at-a-time. Despite the budget cuts in CA, they have not to my knowledge instituted a waiting list for ADAP (I check these things periodically) so it's quite possible that you would qualify for some sort of assistance with meds etc.

It's important to stay calm and look at the Big Picture: this is treatable and there is help, financial and otherwise. Try not to let your fears and anxiety get the best of you.

You'll begin to find your way. Confirm the test and if you have HIV, find a local AIDS Service Organization. Find a good experienced HIV doctor; The American Academy of HIV medicine (www.aahivm.org) is an excellent resource and you can ask people on these forums who might be able to recommend one. Find out what your numbers are, you might not even have to go on meds yet.

Hang in there and keep us posted.

[alantalbot]

Thanks Inchblue and Robt.... makes me feel better already.  I sincerely hope that the
budget cuts don't get rid of everything.  Maybe there will be cutbacks, but hopefully not complete
elimination.  Fingers crossed.   In the meantime I will get the WB test and make
that my starting point.

[Ann]

Alan,

You REALLY need to get a WB test done - this is NOT negotiable as you cannot be diagnosed with hiv without the confirmatory WB test. In fact, you really shouldn't be posting in the poz portions of these forums until you HAVE been confirmed as hiv positive.

False positive results happen on the rapid antibody tests all the time. Sometimes it's due to an underlying autoimmune disease that the patient is not yet aware of. It's imperative that you get a WB done and find out what is going on. You may be assuming you're hiv positive when it's actually something else making you feel unwell.

Get that WB test done ASAP. Make an appointment TODAY!

Good luck and let us know what the results are. There's not a lot of point in discussing the ins and outs of hiv infection with you until we know whether or not you're actually hiv positive.

Ann

[mecch]

You pose a lot of challenges but your first challenge is to confirm that you are HIV+, and, if so, confirm the state of your health - your labs.
Good luck!
PS - don't keep your bf out of the loop. He should support you, or not, and if not, so be it.

[antibody]

i'm in the same boat. i don't mind telling you how much i take home. this week i grossed $771. and had $355.05 in deductions. ie; child support and state and local, Federal taxes, union dues and health insurance for my son. i do not pay for health insurance for myself as of yet. i'm on ADAP and Ryan White program pays all my appointments and labs. I am scared to think about any cuts to these programs. It's probally true i can afford health insurance. i just don't think i would be able to afford the meds if i get dropped from ADAP.

[Dale Parker]

Hey Alan.  Please re think telling your boyfriend and family.  I had the same fears as you have.  Both my parents died in 2003 and my older sister is my next of kin.  Her husband is very homophobic.  When I got tested my numbers were really low so I thought it best to let my sister know my situation.  I told her everything except for what the disease was.  When she asked what I had I really didn't want to tell her. I was afraid her husband would ban me from them.  Even though my sister said that his views were "blood was thicker than water and family is everything to him." I didn't believe her.  Boy was I wrong about him.  He has been so supportive of me that every time I think of how he has helped me out I cry.  It was his kindness towards me (our relationship was strained prior to this) that made their kids knew that there was something wrong with me.  Our life style still disgust him but he would kill for me because I am part of his family.  
       I know that every family may not be as accepting of the situation but they will most likely come around in time.  As for your boyfriend if he really loves you he will be supportive.  I know of many couples where one is poz and the other neg. They have been that way for years and have a great sex life.  He may need just as much support as you.  
       Please do the WB test and find what your status and numbers are before you do anything.
Wishing you all the best,
Dale

    

[alantalbot]

Hey anti, well...you and I have about the same income.  I have an absolutely rotten health insurance policy - with a $4,000 deductible.  I guess if I get PCP and the bill comes to $200K for a 2-month hospital stay, they pay $196K of it.  But if I fall down some stairs and break my ankle and the bill is $2,000...I have to cough that up.  And I pay $74 a month for this policy...which, to date, has never paid for any medical services I've had because I've never met the deductible.  Maybe it is time for a new
policy??

I went for my western blot test today at the AHF (Aids healthcare foundation) clinic.
I definitely recommend them to anyone who lives around the LA area.  Anyhow, they are very
nice and most of their patients don't pay a cent.  The ones who work obviously do have to pay,
and if you have insurance, they happily bill your insurance for the full amount.  The people who do
work but who are underinsured/not insured are NOT expected to pay that much.  It's on a sliding
scale.  For me, the cost was $35 for the office visit and $8.99 for the western blot test.

ADAP....well, I don't think it's gonna be as bad as the news reports have made it out to be.
I sincerely hope that's the case, anyway.  I don't think they're gonna nix it because too many
people's lives would be jeopardized.  Maybe the co-pays for some of the drugs would be
increased for those whose income is higher, but those who make even $35-40K can not be expected to pay for the drugs on their own at $1500+ per month ($1500 is a full paycheck!!)
Perhaps the pharma companies will pick up some of the slack?  Shit, no one asked to get HIV....it's not a disease for the wealthy....most people who have it are not wealthy.  What really needs to happen, ADAP or no, of course, is that our healthcare system needs overhauling.  Until that gets done.....nada!

[alantalbot]

Hi Dale - I thank you for your most thoughtful reply.  I have told my bf about the western blot and he already said "we'll deal with it together."  I cried and hugged him and said thank you. 
My family, unfortunately, couldn't deal with this.  They don't know I'm gay - I had to stifle it from them for so long. If they found out I got HIV, they would just be sad and disgusted.  I'd have to tell them
that I was assaulted or that I had hetero sex in order for it to really wash, and even then....
I'm ashamed enough as it is and still quite angry with myself...but I'm slowly letting go of that a little more everyday as everyone does.  I have had many panic attacks and periods when I can't sit still. 

I'm still coming to terms with having HIV.  If you knew me, you'd probably be shocked and appalled that I even got it.  I came out only a few years ago and my sex life has been so limited.
I'm very careful...well, I have been, about who I've gotten together with.  I let my guard down
once - and only once - and it happened (well, I'll know for sure next week.)  But, I will admit,
there was a period over last year/early this year when I went on a sexual rampage due to
depression.  I moved too fast and it has burned me forever...I look around at the stuff in my apartment and think "jeez, I bought that when I was infinitely HIV-negative."  I got together with a guy who I thought I could really connect with...but it just totally backfired.  Actually, we've exchanged a few emails since then - I know, it's crazy - and if I do test poz, I will definitely tell him. 

I can totally appreciate your family situation.  A gay lifestyle is something that
straight people can not usually fathom - the sexual/intimate components anyway.  What feels
totally natural to us is disgustingly laughable to others.  I'm a very straight-acting gay guy
and I really can't relate well to the flamers!!  So I guess there are varying degrees.

Yeah, you are right, my bf is sensitive and he needs a shoulder to cry on.  Actually,
he is a doctor too (but he graduated overseas and he doesn't practice medicine at all now.)
He seems all in favor of a serodivergent relationship and we always play safely.

Anyhow, I'll let you know the result of the WB and my first set of numbers.   Thanks
for your kind words Dale.

-Al

[alantalbot]

Elisa came back negative.  They're going to do WB just to be sure.  Actually, in the clinic where
my doc practices, they usually stop after the Elisa is neg.  But for some reason they want to
do the WB.  Why, I don't know.  Any particular reason??

[Ann]

alan,

They're probably doing the WB for your own peace of mind since you had that previous positive antibody result. It's unlikely in the extreme that your WB will be anything other than another negative.

Ann

[a2z]

Elisa came back negative.  They're going to do WB just to be sure.  Actually, in the clinic where
my doc practices, they usually stop after the Elisa is neg.  But for some reason they want to
do the WB.  Why, I don't know.  Any particular reason??

Hopefully this will turn out to be some pretty great news for you.  I know a lot of us would love a second chance to be neg.

Crossing our fingers for you.... please let us know either way.

[alantalbot]

The WB came back neg.  Jeez, those rapid tests.....as I'm sure everyone here knows, once you test poz on that, you can feel your blood turn cold and your world fall apart because it's almost for sure that you've got HIV.  They need to do some major improvements to improve the specificity of rapid tests.

I'll be staying around here for sure.  During this whole ordeal and scaring myself shitless, I have
found a new calling, and that is to be part of the cause of stamping out this stupid virus.
Luckily I live in a big city (Los Angeles) where stuff is happening, so I'll lend whatever weight
I can.  NOBODY deserves this stupid thing.  Nobody...except maybe Jeffrey Dahmer.

And to anyone out there who is also scared shitless about going to get tested, JUST GO AND DO IT.
Don't screw around (literally or figuratively.)  Regardless of the outcome, just go and do it.
If you're in the Los Angeles or surrounding area, go to the Aids Healthcare Foundation, www.aidshealthcare.org  They have great doctors and physicians assistants and nurses there.  You don't have to pay a cent if you're unemployed and if you are employed with no insurance, you still don't
have to pay (but I think they help you get on Medicaid or some other program.)  Even if
you end up poz, like I was 99.999% sure I was (based on all my symptoms) they will
take good care of you.  I still have a string of health issues that I have to resolve - and the clinic told me my blood pressure is at the 'low hypertension' level - so my battle isn't over.  I'm actually going back to the clinic next week to get tested for all the hep viruses and tb and whatever else...they're doing it all.  If I didn't get HIV from the hookup I had, the bastard coulda given me some other stuff.  So, I need to find out if he did.

Another reason to get tested - if you have a job, you need to perform well.  No employee,
even senior-level employees, is indispensable.  The job market in the USA sucks to high hell
right now - everyone's looking for a job - and you could easily be booted out (like I was, for
horrid performance over the last 4-5 months because I was obsessing about having HIV).
I already got two warning letters for non-performance...and I did my job very well for over 4 years.
If you do have HIV, most employers will be sympathetic to the fact that you need an adjustment
period while you get your life restabilized.  You can just tell them you have a health issue and
a letter from a doc is often good enough (and the doc doesn't have to say what the condition is.)

The lesson for me, though, even over and above testing, is this: keep your pants on until you know for sure.   I didn't keep mine on, ended up having a rotten
hookup despite the fact that he was droolingly handsome, and I was this close from suicide as a result of thinking I had gotten HIV from him.  Most people are asymptomatic, but I wasn't.  Every single symptom I had pointed right to it.  I thought I seroconverted for sure - the timing worked out perfectly (my flu was about 3 weeks after the encouter and I had all the symptoms of a bonafide seroconversion and more too.)

Even if a person says "I'm neg", don't drop your drawers until you know their status.  And if they're poz, all you have to do is take the necessary precautions.  If they hedge or won't answer the question directly, OR (in my case) if they tell you in an email that they're "clean and safe", DON'T trust them.  And I was too wimpy to ask him in person because I thought he might take offense and blow me off.  Trust me, it's better to be blown off.
I don't know whether he was clean or not...he could easily have been poz and the virus just never made
it into my system.  He sure as hell wasn't "safe" though.  

Positive until proven negative.  And never assume...because when you assume, you make an ass out of u and me.  

Don't even bother asking them in an email about their status.  Even if they reply back "Yes I'm totally STD free", that's still not good enough.  Or if someone says "HIV-, STD free" in their ad, that isn't good enough for you either.   There are so many fucking liars out there, with the attitude of "I have HIV, so you can have it too."  The reason: they identify with the aggressor (the person who gave it
to them).  It's a humongous psychological problem that is beyond therapy.  

If you're hosting, ask them before you get into anything physical.  Sit down with them
and talk for a few minutes or more and lead up to their status.  If their eyes start darting or the conversation goes awkward when you bring up HIV/STDs, offer them a soda or Snapple or water, talk some more, and see where that goes. If you don't hit it off with them, show them the door nicely, they are not worth your time.  If you hit it off, let them stay and watch a movie, snuggle, kiss gently, pet, rub, whatever...and you can do it in bed too!  But if they're dodging even basic questions about their sexual health, there's no reason to get physical until you know their status. Even if they're drop-dead gorgeous and you can't wait to find out about their sexual prowess.  There are other drop-dead gorgeous, honest guys out there.  Be patient and you'll find one.

If you're looking for love and a relationship, like I was, a person who is not straightforward is not one you want to associate with.  Hot gay guys are a dime a dozen in most cities...find another one to hook up with who will be open and honest.  And if they're poz, just be sure you double up on the wrappers.  Or keep your underwear and the contents inside intact until you know what you need to do to stay safe.    And if someone goes in your back door without permission, and/or condomless, you say these 3 little words: "Okay, we're finished!", and either leave or kick them out of your house.  

If you use Craigslist or similar sites, don't go overboard on them like I did.  SLOW DOWN.  If you have a rotten time with one guy, give it a week before you go back and try to find another one.  Getting on
a sexual rampage is the worst thing you can do.  I found my
boyfriend on Craigslist.  He's a truly amazing guy and I love him very, very much.  I hadn't
gone on Craigslist in a couple months because of depression over HIV.  I popped in and
posted an ad on a Friday.  On Sunday we had our first date and a month later, we were
boyfriends.  

Bottom line: Most people out there do not care.  They may not knowingly infect you with
a bug, but if you do get it, there's a 99% chance they'll already be gone and out of your life
by the time you're diagnosed. So a quick hookup is definitely so not worth it.    
Yes, a boyfriend can infect you and vice versa...it's a sad fact but it happens every day...and those circumstances are a little different.  Sure, hookups are great fun and a nice part of life.  We all need sex.  But if you value yourself, you gotta make sure you stay safe (and I'll be the first to admit that I was a big self-hater for a long time.)  Someday this stupid thing will be long gone and there will be a nice, easy vaccine or a quick round of meds to take to wipe it out.  Until then, be safe.

No one told me any of this stuff.   I never visited any HIV/AIDS websites before I came here.
I had to find it all out on my own.  The germs and bugs are just too widespread and they're too easy to get.   Germs don't discriminate...most of them will take up a nice new
home in anything that has living cells.   Who knows, I may have Hepatitis B as a result of hooking with this guy.  I'll find out next week.

Ok, like I said, I'll be around.  I've already gotten to know some people by PMing and email
and you guys are a great, great group of people.  Have a nice weekend.  My thoughts
are with all of you.  And thanks to everybody who replied to this thread during my hour
of need.  Your support was really, really, really appreciated.  

LJP*,
-Al

*Love, Joy, Peace

[Miss Philicia]

I don't care how you're intending to use the words "dirty" and "clean" -- people here will find it offensive.

[BlueMoon]

Congratulations on the result.  I suppose the length of your post is a reflection of the relief and exuberance you must feel right now.

I think you kind of missed the real lesson, which is to play safe regardless of whether you think you know the other person(s) is "clean" or "dirty" (ouch!).

[alantalbot]

***I just updated my post above; hopefully it is less abrasive now.***

Yeah I'm sorry guys - I didn't quite know how to get around that.  Any suggestions?
I'll happily modify it, since the policy on here is not to delete posts.  I guess I could just
cut out my story and say "WB was negative, good luck to everyone on here, thanks for
the support" but maybe I should have just done that?  Also, I was faced with the inevitable problem, that text posting on the internet leaves out a lot of the essential elements of communication.  While I am generally sensitive to others, I can also be kind of "slapdash" at times and my true feelings come off as sarcastic or insulting. Any message board veteran knows how easily stuff can get out of hand - and how much offense can be taken - just from someone's text-based posting online.  

Yeah, on the one hand I'm relieved.  But I did not feel exuberance when writing that post
and I am in no way trying to get kudos or trying to belittle anyone else on here.
It was kinda something I told myself that I would do, either way, poz or neg.  If I'd
tested poz, I'd have said the same thing basically.  I just wanted to express the fact that
people can never be too careful.  I'll admit that, even though I came out neg, I did a very
stupid thing that I could easily have avoided, and it was brought on by ignorance, self-disrespect,
carelessness, assuming what I shouldn'tve assumed, trusting someone who obviously
cared nothing about me, and so forth.  Lots of people lurk on these forums and read the
threads.  I sure did, and for months!!  I know I'd appreciate reading this kind of info if
someone else had posted it....so that's why I posted it.

Anyhow, I again apologize for the use of 'clean' and 'dirty'.  As one of my good friends (who is poz)
says, "Those words should only be used in reference to taking showers."  I think that's
true too.  And yes Bluemoon, everyone should "play safe".  But there are other factors in the
equation.  The underlying thing here is...trust.  The 'T' word.  Sure, accidents happen - condoms
slip or break.  But there's more to getting/not getting HIV than just playing safe, and the common phrases
"don't hook up with people you don't know" and "always use condoms" are often breezily dismissed.
Hence, my wanting to share my own experience.  

[BlueMoon]

No offense taken here on the phrasing, as I'm sure none was intended.  I think really the words are euphemisms used to avoid speaking the dreaded letters HIV.  "HIV status", or just "status" in certain circles, works just fine.  In addition to HIV-positive and HIV-negative there's at least one other status, "positive and undetectable".  So go ahead and be specific, you won't offend anyone.

I was half joking about the exuberance.  It was a gentle dig about the post length.  You are right though that it needs to be said, about testing and about making assumptions of honesty.  I'm glad you found out the easy way.