Healthy with HIV -- "Four years to grow claws mother, Jungle Red!"

[AndyArrow]

I have always been sort of neutral about the LTS forum.  I absolutely LOVE this forum but didn't feel so protective of it as some others on here.  There a couple of reasons for this I suppose.  When I first joined AIDSmeds I was reluctant to post on this forum since I wasn't sure what I had been through qualified me as being an LTS.  Heck, I'm not that old!    Philly, told me that anyone who was at the point where they were taking Fuzeon was an LTS (how I hated those needles!!!)    The other big factor in my feelings was that I had never felt stigmatized anywhere on AIDSmeds before now.

There is another post on the Living With forum which has a title very similar to this one.  I have read through it all and I know that the OP of that thread while being tactless didn't mean to be rude. 

(Side note if anyone doesn't get the "Four years ..." quote let me know and I'll be happy to explain.)

The OP was infected relatively recently and he was just seeking reassurances. Ok, I get that so please let everyone understand that I am in NO WAY mad at the originator of the other thread. He wanted to know that beyond taking a few pills and some blood work his life was going to continue on the same path.  He wanted reassurances that this wasn't scary. 

That's when it hit me ... I was SCARY!    I was this BIG SCARY MONSTER with war stories and battle scars.  He didn't want to hear about what I've been through ... what I'm still going through.  I was the old man (metaphorically speaking here!) telling the young kids what life was like before cars & TV.  He was never going to go through what I went through.  He couldn't nor did he want to relate.

So, now I get it.  I'm not neutral anymore.  I've been told I might scare the little kids.  Nobody has to listen to me here but the LTS forum is where I will tell my tale of woes  ... or to plagiarize my "trials and tribulations" if I have any.    To everyone on here who as asked non-LTS not to post here, I now understand part of why you are so protective of this wonderful safe-haven. 

Again, I'm not angry with the poster of the other thread, but I am grateful that I have a place to play with all the other BIG SCARY MONSTERS! 

AA

[rondrond]

re: claws..jungle red...

'The Women?'



yes, I googled

[Being Swiss]

We'll need a movie-forum sooner or later!!! I'm with you!

[aztecan]

Andy, my dear, welcome aboard.

Just about all the things I post would scare the kiddies at some point.

They don't want to hear that life with HIV/AIDS isn't always a bed of roses.

In some ways, they are correct. They will never see or live through the things we did. For that, they should be grateful.

I don't wish it on them, either. But that doesn't lessen the impact the last 30 years have had on my life.

So, here is where I usually post things. I feel at home here.

Besides, I hate explaining who Bette Davis was!   

Oh Bruno, a man after my own heart. I am an old movie buff.

And if you think your photo makes you look like a ghoul, I will have to post a new one of me. I can do a flawless impression of Jabba the Hut!

HUGS,

Mark

[Being Swiss]

Besides, I hate explaining who Bette Davis was!   

She once asked one of her directors (I think it was William Wyler) whether he wanted her to walk up the stairs or if Max Steiner (the composer) was going to do this for her. In spite of all the dirty things she is supposed to have said (they're probably true!), this is still one of my all time favourites. - If you're interested in what she knew about Clark Gable's penis, let me recommend that hilarious and informative biography by Lawrence J. Quirk: "Fasten Your Seat Belts".

Hi Big Scary Monster, AA!

I used to write in a number of forums (political, for students of literature, gay and so on), and since I never felt at ease being just an anonymous "bit" in this virtual world, I wasn't able to hide my person with all its problems, anger, and happiness behind a mask. Maybe I know what you're writing about. My experiences were more or less the same: A left-wing (!) user once accused me of considering my homosexuality and HIV  a virtue, a merit. He then told me to .... - think of another word for "leave"! - the forum. - I still write in a Swiss lesbian and gay-forum from time to time. A question I've got used to: "Are you the one with AIDS?". One among roughly 25'000 in Switzerland! And why explain the difference between being positive (B3) and actually having AIDS (according to the WHO)? - It's just discrimination. And it happenes in Aids-forums, too - also did in that German forum. Kids don't want to know what we've gone through. They don't even want to know what they might have to expect; so many long-time effects we're still learning about. - That's why I always felt more comfortable among LTS (what's the difference between just being postive and being LTI, by the way? Is Fuzeon really an important factor - or is it that "big scary monster"-effect? ).

Bruno - another Ghoul
LET'S GIVE THEM A GOOD SCARE!

[aztecan]

I know I probably shouldn't have, but I couldn't resist responding the newbie whining that he might have to start meds.

I was probably too blunt, but the deed is done and was right in step with Nick and Auntie Doxie and some of the others.

Anyway, it may well be a bumpy night.

HUGS,

Mark

[Being Swiss]

Hi Mark!

I've just read it - and I entirely agree with you! Let's enjoy the night! It's one of the greatest in "All About Eve"!
Wish I was able to use such effective and true words in English.

Bruno

[AlanBama]

Hi AA, I hear you my friend.   We're kind of like the Addams Family.....everybody likes us, and thinks we're kinda funny (in a weird way) but they don't really want to know too much about it all....

I just don't have it in me anymore to post encouragement to someone who is frightened about their once a day pill regimen...I've done it for a long time.  I don't mean to be unsympathetic to them, really I don't.
It's just that their reality and mine are so different, the two only converge at this website, and really nowhere else or in nothing else in my life.

I don't like growing older, I don't think any of us do.   I'm trying to do it with some dignity, and being a LTS makes that tough.   Especially when you are poor and reliant on 'the system'....I am already in the donut hole for 2009.   What a crock.   They just don't have a clue what it's like to be on Medicare....

Oh BTW, I fell down my stairs yesterday; have been quite unsteady on my feet lately, and I knew I needed to be more careful...but had my hands full, in a hurry, etc.   I caught myself, but dislocated my little finger on the left hand....I had it x-rayed and they popped it back into place (it looked frightful) and it's in a splint now, so it's hard for me to type.   See, this is the kind of shit they don't have a clue about...I fall, am thankful I caught myself and didn't break a hip or a wrist...but I am kind of embarrassed to post about it....here, I feel ok with it.

While we're on the subject of old movies, why does Blockbuster online have "The Women" classified as a "VERY LONG WAIT" ?  guess a lot of queens are trying to see it.  I've seen it lots, but can always use a refresher....the new version was kinda cute, with Carmen Electra in the Joan Crawford role....

Right now, I have "Cabin in the Sky" with Ethel Waters and Lena Horne to watch.....

hugs to all you old folks,

Alan  

[aztecan]

Alan hon,

I'm sorry about the finger, but I'm glad you didn't fall and break something.

If we're the Addams Family, I guess I would be Uncle Fester, but with glasses and a beret!

HUGS,

Mark

[anniebc]

Some friends and I have been talking about this topic, this is what one of them had to say..I thought it well said and well written and wanted to share it with everyone here...because I think it needs to be said...The sentences in bold are my doing because those are the ones that got my attention and made me sit up and listen.


"We LTSrs are marginalized. The arrogance of the newly infected is contagious, and those with the money to stave off the effects of HIV beyond the viral, will never understand. Money can't buy you extended life, but it can get you the best drugs, the best lipo correction, the best doctors. Money can save you from the ongoing and soul crushing humiliation of food stamps, subsidized housing, disability, medicare, food pantries, credit card/student loan lawsuits, and all the other things that, on an almost weekly basis, make you wonder out loud why you are not dead yet.

And don't think that just because a person has a job, that all is well. Health insurance plans that include HIV meds often do so at a pretty hefty co-pay. And if a job is lost, COBRA is available, for often the price of rent in the suburbs. And for those on Medicare, but who try to make something of themselves, there is the "donut hole" where thousands of dollars are required out of pocket before coverage resumes. And if one manages somehow to make it through the hoops and get disability, the return to the workplace once health is restored is difficult.

Of course it is illegal to refuse to hire someone due to a pre-existing condition. But most companies carry a thirty to ninety day "probational" period, during which time they can fire at will (and Georgia, USA is an "at will" state in perpetuity). The red flag of a thousand (or three) dollar insurance hit does not go unnoticed by the financial department, especially in smaller companies. I can't tell you how many friends have suddenly found themselves unemployed after making a few month's worth of medical claims.

HIV, for many of us, is a road - slow or fast - to almost absolute destitution. There are those who have great talents and who are entrenched in supportive and magnanimous companies, who do not feel that fear. They are fortunate, especially in the current economy. Money, or amazing insurance, can indeed make HIV a manageable, treatable, non-issue outside the psychological.

I get that. And perhaps I would be of some assistance to those whose financial levels at time of diagnoses are not good. But honestly, I am holding on to fraying rope myself here, and do not think another situation where I fight humiliation and despair is a good idea right now. I do not have the spiritual energy to fight that fight right now, nor the means to change/end the life I have. So staying away is one of the few things I can do that is actually a positive for my well being and survival."

I have posted this as Member of the forums and friend of the Author.

Hugs
Jan

[AndyArrow]

Ron -- Yes, its from the original The Women.   Which has one of my all time favorite lines and it's given by the big JC.  I always find it funny when people talk of the big JC in religious terms since for me it will always mean Joan Crawford.  Anyway the line is:

"There's a name for you ladies but it isn't used in high society outside of a kennel." 

Mark -- I adore Bette Davis ... second only to Judy!.  I do love my musicals.

Bruno -- The fuzeon, which was a real pain the .... well I was going to say ass but since I couldn't inject there, oh how much easier that would have been!  More a pain in the upper leg & stomach (hard to navigate around the feeding tube I had there at the time) Anyway -- The fuzeon was more I think about med failure and having to resort to a rather drastic med on top of all my other problems.  I used to a BIG SCARY MONSTER with a 15 inch feeding tube sticking out of my stomach. 

"Fuzeon, now with more big scary monster effect" -- How about that for their new ad campaign?

Alan -- you poor dear.  I'm so sorry to hear about your finger.  I cringe a little each I read the line about them popping in back into place!    I didn't see the new version of The Women, can you believe my mother saw the new version but never saw the original.    Once playing celebrity Taboo with my family my one sister didn't know who Ann Miller was!  I would swear I was adopted ... but I look a little bit too much like my mother for that.  Enjoy "Cabin in the Sky".   

Jan -- Thanks for sharing that with everyone!

[BT65]

Andy, thanks for starting this thead.  People who aren't LTS'ers don't understand why we don't like noobs to post here.  All one has to do is go over to 'living with'  and read some of the posts of the noobs to see why we don't like it.

Mark, I haven't read the thread yet where you "chastized" the noob starting meds (hee), but I'm glad you did.  They don't realize how good they have it with the meds of today.  Sure, long term use of anything gives side effects, but not as drastic as the side effects of the old ones.

Oh Alan, I'm so sorry about your finger.  Please be careful from now on.  Sometimes when I stand up, I almost fall over (doesn't that sound ridiculous). 

Jan, thanks for posting that.  I wish the noobs would read that, and this entire thread, before they go posting in this particular forum. 


Edited to add:  I should have said the "newer diagnosed" instead of noobs.  My mistake.

[Being Swiss]

Hi AndyArrow!

If it's  any comfort to you: Roche, Basel, (they produce Fuzeon and had also promoted Invirase and Viracept,  two of the first PI's) not only announced they'd have to stop research in HIV, they won't even build that beautiful tower (a weired something) we had all been looking forward to (I don't know much about the legal situation in the U.S., so I post the link instead of the picture):

http://files.newsnetz.ch/bildlegende/19053/RocheturmNah.jpg

For those who are interested in the gay history of Basel: The shore of the River Rhine, which yo can see on the picture, was a popular hunting-ground in the days of milk and

Bruno