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Author Topic: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  (Read 3816 times)

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Offline SecretKeeper

  • Member
  • Posts: 52
THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« on: August 01, 2007, 10:43:39 PM »
This disease fucking sucks!  And if it sucks for me, I can't even begin to imagine how my husband (or anyone else living with this piece of shit disease) feels.  We're not even two months into it and I already hate everything about it.  I hate that our entire lives have been turned upside down because of some stupid virus.  I think I hate it so much because of all of the unknowns, all of the things that make it so unfair.  Don't tell anyone, because you don't know how they'll react.  If it was cancer I could tell the world - everyone would hug me and do whatever they could to stand by our side.  If it was cancer we could have sex without some stupid condom...we could have more kids if we wanted to.  If it was cancer we could cut the motherfucker out! 

I feel so bad.  Sometimes I wish I had it too - that way we could go through everything together.  But then I think of my kids and worry - I know he can live a long long life, but what if he doesn't.  I know there are no guarantees in life - even if he wasn't HIV+, but this doesn't make him live longer - that's for sure.  And I soooooooo worry about his quality of life.  What if when he starts meds they make him violently sick for weeks at a time (which it sounds like that's pretty much a given) - how will he do it?  How will I do it?

And sometimes I just want to scream "WHAT ABOUT ME!!!!"  I feel like I'm just as affected by this dumb thing, but my thoughts and feelings are only partially validated.  I only half count.

Kudos to all of you who are giving HIV the finger and living your lives ... and kudos to everyone who stands by the people we love who are positive.
(The only thing that doesn't suck about it is this website and the information & support that we have found here.)

Offline Matty the Damned

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  • Posts: 12,160
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #1 on: August 01, 2007, 10:49:28 PM »
SK,

Babe, the turmoil will settle down. Adjusting to a new diagnosis is terribly difficult, not just for the infected (your husband) but for the affected (you) as well.

But as you will discover, life continues apace and cares little about the humans and their illnesses. Eventually the daily grind will return and you'll settle into this. I know it sounds easy for me to say, but it's true.

But in the meantime rant away. It's a good release.

Fondly,

MtD

Offline milker

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  • Posts: 4,034
  • Protected phone sex
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #2 on: August 01, 2007, 11:45:08 PM »
Hi Secret,

also you have counseling available for both of you; if this is something that you would like to try we can give you names and phones numbers of organizations that will help you. I see that you are in Iowa?

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline anniebc

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  • Posts: 5,885
  • AM member since 2003
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #3 on: August 02, 2007, 02:05:40 AM »
Wow SK sounds like you really needed to get that off your chest I hope you feel better for it.

Listen to what Matty is saying and trust the word of those here who care and know what they are talking about.

My husband is Negative and I'm positive and I knew from the first day how this would affect him so I included him in everything...Hospital visits, doctors appointments until he felt comfortable with it all...5 years down the track it's not such a big deal anymore.

Talk to your husband and just be there for him, as you are now, believe me things will get better...and when you are having a bad day, well, you know where we are.

Hugs to you both.
Jan :-*

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline LT

  • Member
  • Posts: 56
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #4 on: August 02, 2007, 08:42:50 AM »
Quote
We're not even two months into it and I already hate everything about it.  I hate that our entire lives have been turned upside down because of some stupid virus.

Pretty much any major medical diagnosis would turn your lives upside down.  Would the turmoil and emotional shock be all that much different if the diagnosis had been ultra high blood pressure, or skyrocketing cholesterol, or a heart attack, or diabetes?  All have potentially fatal consequences. All would require major changes to the status-quo of your lives.

Two months is barely a blip on your journey.  Look at some of my other posts for what I call my "Three year cycle of accepting HIV."
 Edited to add: Here's the link - http://forums.poz.com/index.php?topic=13778.msg171248#msg171248

Quote
Don't tell anyone, because you don't know how they'll react.  If it was cancer I could tell the world - everyone would hug me and do whatever they could to stand by our side.

It wasn't all that long ago that the word "cancer" was uttered in hushed tones.  People even looked around to make sure nobody was listening before speaking the word.  That diagnosis made people look askance at you, your family, and even distant relatives.  Many people who you thought were friends took flight.  While that stigma has changed nowadays, I remember in my youth, cancer being viewed much the same way as HIV is now.

Quote
If it was cancer we could cut the motherfucker out!

Not always to case.  Depending on the variety, the location, and how advances things were at the time of diagnosis.  Also how rapidly a person accepts the diagnosis and the radical step of "cutting it out".

I sat at the bedside of a friend who waited too long to make that decision (just two or three months).  It spread, became inoperable, and he died with a rotting, pussy hole large enough you could put your fist in it.

Quote
And I soooooooo worry about his quality of life.  What if when he starts meds they make him violently sick for weeks at a time (which it sounds like that's pretty much a given) - how will he do it?  How will I do it?

After things settle down, and you both become comfortable with things (see my three year theory ... again), his and your quality of life will be what you choose.  If you eventually accept things, it will be just about what it was before he was diagnosed.  If you wallow in the "poor me" attitude, life will be miserable.

You've been reading too many horror stories about the meds.  Yes, some people have miserable experiences, and life threatening allergic reactions.  Most have some diarrhea, that can be moderated, or even controlled by changes in diet, or adding an another med.  Most feel a little tired and dragged out, or maybe even buzzed in the beginning, but that settles down in time.

Concentrating on the "what if's" and "worst case scenarios" will drive you crazy!  Do you constantly worry about asteroids, earthquakes, flooding, landslides, killer bees, bird flu, and terrorist attacks?  All are possible.  But if you put all your mental energy into the "what if's" you'll have none left for just living a normal life.

Quote
And sometimes I just want to scream "WHAT ABOUT ME!!!!"  I feel like I'm just as affected by this dumb thing, but my thoughts and feelings are only partially validated.  I only half count.

This particular forum (Someone I Care About Has HIV) is specifically designed for you to scream "WHAT ABOUT ME!!!!"  We'll help the best we can.  And certainly here, you can meet, and develop friendships with others in the same situation to which you find yourself.

Maybe I'm a little over tired, so my tone might be a little snarky.  Sorry about that!  But I'm a grizzled old veteran of the battle your hubby is just beginning. This coming December it will be 22 years, and we figure I probably got "it" within a year of the CDC's first reports.  I was the 30th person diagnosed in my province, and 15 of the 30 were already dead.  Just before Christmas 1985, I was told not to expect to see Christmas 1986.

Before I logged on here I had just looked at the historical statistics for where I live.  While there are several hundred new diagnoses every year (and sadly the numbers are increasing), the number of deaths has been steadily dropping since they peaked in 1994.  Only two people died last year, and four the year before.  Statistics are probably similar where you live.  Hardly a cause for the bleak outlook you projected.

Remember, it ain't over till it's over!  And I don't intend on hearing any fat ladies singing any time soon.  (Apologies in advance to any Rubinesk women offended by that last statement.)
« Last Edit: August 02, 2007, 08:56:29 AM by LT »

Offline SecretKeeper

  • Member
  • Posts: 52
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #5 on: August 02, 2007, 05:38:24 PM »
 :'( Sorry for my ranting last night - it was just one of those days that everything came to a head and I needed to do a little venting (okay, a lot of venting).  I appreciate being able to get that kind of stuff off my chest, even if it isn't all that logical or intelligent.  I know right now I'm not even close to having the amount of knowledge or experience that several on this site do, but I hope that 20+ years down the road I will be able to share my knowledge and support with others just as those who have that experience now do here.

Deep breath.  Inhale.  Exhale.  One day at a time.  Okay, I'm better now.  ;)

Offline LT

  • Member
  • Posts: 56
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #6 on: August 03, 2007, 08:29:15 AM »
Here's another couple of points that hopefully I can pose in a little less bitchy tone than last night.

I came out in the pre-HIV era, so sex with a condom required a mind set shift for me as well.  My phrase for it is "I had to make friends with a condom."

I kept some in my coat pocket.  Not that I EXPECTED to need them all day, every day, at a moments notice.  More like I'd never have the excuse "I don't have one" to temp me to not play safely.  Sort of a safety net, making them a "normal" thing to have around.  Play with them.  Make balloons.  See how big one will inflate with the vacuum on exhale.

I find that for a lot of people the foreplay progresses to a certain point and then someone screams "Whoa, Halt, Stop, Cease and Desist, Freeze!  We HAVE to put on a CONDOM!" While the words might not be spoken, they are shouted mentally.  The action stops.  One or the other of you fumble for the rubber.  The spontaneity, and mood is broken.

Integrate the condom into the play.  Flavours, colours, textures, the lubes that heat up when you use them.  I find that the mint ones are tingley on the inside, and outside.  I know some people who can put a condom on with their mouth.  Make it fun.

Don't make playing safe all HIS responsibility.  Share the burden.  Maybe you could take over condom duty.  Don't hide them in a drawer.  Put a couple on the night stand as soon as things seem like they might be heading in that direction.  Or maybe do that as part of the "get ready for bed" ritual -- go to the bathroom, brush my teeth, put a love glove on the bedside table.  Of course, if you have kids, that would necessitate the morning ritual including putting them away if they weren't used.

As to the wanting children - all is not lost.  There is always adoption.  You could even go the artificial insemination with a sperm donor route.

I know someone who was so desperate on passing on his genes to another generation that he and his wife went to a specialized clinic (I think in Florida).  The concept went something like this.  HIV wasn't in the sperm, but the liquid parts - the semen which contains some sheded white blood cells.  The clinic separated the sperm from the semen with several stages of washing.  Then proceeded as with normal artificial insemination - or maybe even IVF - I can't remember.  I do recall that it was ridiculously expensive.  I can't vouch for the validity and safety of the process, but he did have a kid by it.

Just a couple of points to try and get your finger off the panic button.  Discuss amongst yourselves, and ridicule at will.

Offline ALH300

  • Member
  • Posts: 69
  • Some days ur the bug other days ur the windshield!
Re: THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
« Reply #7 on: August 03, 2007, 10:32:22 AM »
but I hope that 20+ years down the road I will be able to share my knowledge and support with others just as those who have that experience now do here.


Hopefully in 20 years we won't have to talk about this anymore!!!

 CURE
« Last Edit: August 03, 2007, 10:38:29 AM by ALH300 »
Poz 7-27-07 
First Labs:
07/13/2007 "Friday the 13th" What was I thinking???
314 CD4 17% 9410 VL
10/03/2007
479 CD4 18% 8220 VL
01/03/2008
493 CD4 22.5 % 5900 VL
03/18/2008
432 CD4 14.4 % 11,830 VL
05/06/2008
480 CD4 15.0% 2630 VL
07/16/2008
361 CD4 16.4% 12,830 VL
10/31/2008
362 CD4 15.5% 2500 VL
Started Atripla 11-17-2008
1/16/2009
395 CD4 20.5% undect. VL
5/05/2009
426 CD4 20.3% undect. VL
9/15/2009
422 CD4 22.2% undect. VL

 


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