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Author Topic: anyone responding regularly  (Read 1658 times)

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Offline em

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anyone responding regularly
« on: February 07, 2018, 11:48:51 pm »
I guess I am not good at  this computer posting thing and do not know how it is supposed to work these days

this site has seems to me to have lost the spirit it had when it started of just a bunch of people with HIV hammering away on their keyboards thoughts they wanted to share that revolved around the common HIV they carried

now it seems to be an empty void and has lost its soul

just a sad old mans opinion

anyone else have anything to write about?

My apologies I guess there are other websites now that are more popular and modern and taking everyone's time

I hope I did not scare everyone away babbling incoherently like I do from time to time.

Offline flashdance

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  • Reach out and touch me....
Re: anyone responding regularly
« Reply #1 on: February 11, 2018, 01:14:20 pm »
I am here...but tend to have the same concerns as yourself, em.

I could list a few issues that I care about...

-1- where are my teammates in dealing with HIV? The good doctors and nurses and social workers and case mgrs that were excellent in the 80s and 90s and early 2000s...have retired or moved on...and the replacements.....suck. (that could be my state, Illinois, which strangely was the state to copy at one time of services needed for HIV care)....but now I am thankful I am intelligent and healthy.

-2- Smart and healthy and approaching retirement age....and no retirement to speak of. Currently living in a small rural town...and wondering if my only safe place to head to is back to the big city.

-3- It was hopeful to hear how some long-termers have been have been creating organization to address living long and poz.....but maybe moving back to the gay ghetto...something like this might assist or comfort me.

-4- I have always understood why a young female clock ticks quickly as she approaches 35 and she wants a baby...oh, yeah and a partner, too....and now I am 61 (on Feb 15) and realize MY CLOCK IS TICKING AND I NEED A PARTNER. lol

-5- I am on my 3rd month of a new med, Genvoya, and for the last two months I have had to have other backup sources pay assume payment of my prescriptions...since my Medicaid application was submitted on Dec 12th...and I still sit in February with no coverage, yet. I should be approved...but waiting this long without true coverage? I would be happy to enter a class action suit due to this atrocity.

-6- I would love to have a group of good souls to share great stories about life love and food!!....with other poz peeps....but of course since we value our privacy...it is tough to find a poz face to chat with.
You are never alone...and if you start to feel lonely....search me out...or grab your cat!

Offline J.R.E.

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Re: anyone responding regularly
« Reply #2 on: February 11, 2018, 01:43:11 pm »

I will only speak for myself, but I believe a lot of have just simply moved on, others may have issues that they're dealing with. ( Like aging)....  And that has nothing to do with the forums. Many of us are fully involved with our homes, spouses, and family, and friends. Some of us are just tired !!

Which is why I very rarely post anymore. But, I still read the forums everyday.

I have been positive going on 33 years, I am 66 years old, undetectable, and for the most part as healthy as someone can be in my current situation,  and I have a lot more in my life to think, and talk about than HIV at the moment. I have been with my partner going on 38 years, he's negative, but both of us have our own issues. He is 66 as well.

That doesn't mean, that I won't discuss HIV with anyone that wants to talk about it,  because It comes up in conversations at the bar at least once a week. and I am always willing to put my comments or suggestions out there, and get involved,.. Plus,  It's always easier talking to someone about it face to face, when that situation arises. And you can talk to a person by their name.


At this point in my life, I am MUCH more concerned about the direction this country is heading in, which MAY or MAY not have some future effect on my HIV treatment. I do not trust this current administration. This is what I focus on daily, and there is NEVER a dull day !


I am watching this country spiral in a dangerous and  treachrous way, and for me this is much more important than worrying about something that is at least for me under control. I know some may take that statement as conceited, and I don't mean it to sound that way.

Once again, I am 66 !  How many more years do I possibly have !!...  I am enjoying life !,  life is much too short, and it gets a hell of a lot shorter the older we get. So ENJOY, as best as possible, with family, loved ones, and friends.

As far as the forums go, they will always serve a vital purpose for the HIV community, especially to those who are newly or recently infected, and I know many people have benefitted from these forums.  Myself included, throughout the years.

All message boards, even this one goes through transistioning, and nothing can be done about that. It's the same virus just a lot of newer faces.

Every once in a while, some newcomer gets on here, and may say something that I can relate to easily, only because of the fact that I've been there or done that, and I may put out a post as a result.

Ray
Current Meds ; Triumeq, 20mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 4/23/18

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 3/13/2018,  Viral load remains <40
CD 4 @377 /  CD4 % @ 12
Lymphocytes,absolute--3017

  
 66 years young.

Offline kentfrat1783

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Re: anyone responding regularly
« Reply #3 on: February 11, 2018, 02:49:06 pm »
Hi All,

I still consider myself a newbie in all of this, some days thinking it's a bad dream and other days I try not to think about it. 

I have no idea what it was like back in the 80's and 90's but I have been happy with the care I have received in my area.  That is also very odd for me to say especially with the hospital and physicians I have in my area.  I have thought of going to Columbus and/or Morgantown for a second opinion but I'm thinking I'm getting the best care here. 

I read a lot of the posts on here and respond to some of them but just glad there is a community where I can come and talk if needed.  I'd like it if I had a local support group but the closest one is a good hour away and hard to justify the drive each way for just an hour conversation. 

I'm just having the hardest time moving on with my life.  I've been just moving through the actions lately but hopefully I'll be able to do what I want too soon.  A lot deals with my CD4 number getting to where both my doctor and myself want it too be. 

I'm always here to chat with others and like hearing about others experiences. 

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Ptrk3

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Re: anyone responding regularly
« Reply #4 on: February 11, 2018, 06:07:00 pm »
kentfrat1783:  thank you for continuing to frequent these forums and for your thoughtful and insightful posts.  Please be advised, however, that this forum (Pre-HAART Long-Term Survivors) is exclusively for those who fit that criterion.

I should not even be posting in this forum, but am doing so as a gentle reminder to you. ;)

We all look forward to your continued, vibrant participation in other forums.
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Offline harleymc

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Re: anyone responding regularly
« Reply #5 on: February 15, 2018, 08:11:51 am »
I still check the forums most days but rarely post these days, usually someone has said something similar to what I would have written (and probaly have done it more eloquently).

I've been avoiding some of the threads that complain about how long termers are doing badly because my experience is different, I'm doing well despite having less than 200cd4s. I can't really comment about any of the US issues like insurance and SS and such like as I live in another country.

I'll still wade in if I see mental health issues at play, it's something I've taken on at my workplace as well being on a steering committee shaping our mental health strategy for staff.

But yeah the forums are a lot quieter than they used to be.

Offline Wade

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Re: anyone responding regularly
« Reply #6 on: February 15, 2018, 08:57:53 am »
I agree with Ray and Harley, the forums are still the same only with new people and different issues. Like you guys I have lived with the virus for almost half my life.

Things were very different in the old day when we were diagnosed and some quit their jobs either because they were too sick too often to work. Some just said fuck it and spent their money and cashed in their assets for one last hoha only to find out they had a future after all.

Then there are some of us that kept working and are retired and just dealing with the simple issues of getting older. I've had two total knee replacements in the past few years, because of HIV ? No osteoarthritis and too many years on my feet working.

Different issues and choices for all of us, but we all have one thing in common...
We are all survivors.

Wade
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Offline OneTampa

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  • "Butterflies are free."
Re: anyone responding regularly
« Reply #7 on: February 15, 2018, 02:16:41 pm »
I agree with Ray and Harley, the forums are still the same only with new people and different issues. Like you guys I have lived with the virus for almost half my life.

Things were very different in the old day when we were diagnosed and some quit their jobs either because they were too sick too often to work. Some just said fuck it and spent their money and cashed in their assets for one last hoha only to find out they had a future after all.

Then there are some of us that kept working and are retired and just dealing with the simple issues of getting older. I've had two total knee replacements in the past few years, because of HIV ? No osteoarthritis and too many years on my feet working.

Different issues and choices for all of us, but we all have one thing in common...
We are all survivors.

Wade




"Actually we have many Winners as Wade sums up.  They have Life Lessons Learned, Wisdom Toppings with Sprinkles of Surprises and Laughter served on a Large Plate of Survival."

Thank You Everyone!

OT


:) ;)
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline leatherman

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Re: anyone responding regularly
« Reply #8 on: February 16, 2018, 01:15:15 pm »
Things were very different in the old days
I think that's the biggest difference - the passage of time. What was isn't anymore. What is is something different, evolved.

In the old days, these forums (in their old late-90s - early 00s incarnation) were instrumental in helping PLWHA find doctors; find the newest treatments that might beat their resistance profile; find tricks to get around the side effects; find out who was still alive (many of those here in those days were the lucky ones who had survived the worst years of the deaths from this epidemic); and find support with the (relatively) small amount of people living with HIV (mainly here in the US. others from around the world would eventually join our community)

These days, there are plenty of meds to go around; there's much more knowledge about HIV and treatments; resistance is less of an issue (because these newer regimens are better to handle, so adherence is better); side effects are reduced; and improving HRSA/HAB quality measures (like viral suppression, STD screening, Medical visit frequency, etc) has insured that PLWH have better health care and better outcomes. Ryan White required quality measurement and improvement will only make these trends continue into the future. (well, as long as there is funding)

these days with an ever increasing number of PLWH (newly diagnosed plus those who are living into older age with HIV), often there is peer-support/counseling/education/adherence-counseling available through a clinic's basic services - which wasn't available in the old days and part of the reasons why these forums existed in the first place. Today the needs of PLWH are just different from the needs of PLWH in the early 2000s. The forums simply reflect the times and the greatly changed situation.

---------------------
However, I would point out one issue that has certainly made a difference in the forums. It's a difference most long-term survivors can relate to - some of our brightest, prolific posters have passed away.

Recently I've been helping a (hiv+) friend who is slowly dying of pancreatic cancer ... after surviving non-hodgkin's lymphoma.... after surviving AIDS (pcp). It deeply saddens me to know that yet another friend will soon be gone; but it's not like I, and many other LTSs, haven't been in the position before. I know how diminished the world is by the loss of my friends and partners. The forums, no matter how good they are, are still diminished by the loss of our friends here. :(  sigh



on another, but slightly related issue in a discussion of the forums, I often wonder these days what use there is for the AII? forum (I'm guessing it's the $$$ ;) ) even though there always seems to be a lot of posting there (so, so many posts on the weekend). The answers to transmission questions are pretty straight-forward these days: did you have unprotected sex? did you use a non-sterile needle? then you need to be tested for HIV, STDs, and (based on gender) pregnancy. Your symptoms and guilt don't matter. ;)
(sorry Jim, wade, et al. I'm not trying to put you out of a job. LOL)
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline harleymc

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Re: anyone responding regularly
« Reply #9 on: February 17, 2018, 02:01:31 am »
OT is that an all we can eat buffet?

Offline OneTampa

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  • "Butterflies are free."
Re: anyone responding regularly
« Reply #10 on: February 17, 2018, 01:03:52 pm »
OT is that an all we can eat buffet?

Yes Harley.  AYCE (All You Can Eat) for ALAYL (As Long As You Live).

Best,

OT

 :) ;)
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline OneTampa

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  • "Butterflies are free."
Re: anyone responding regularly
« Reply #11 on: February 17, 2018, 01:07:37 pm »
Leatherman,

Sorry to read about your friend.

Good you are there for him in his final days.

I have been in the same position and understand.

Best to you,

OT.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline Wade

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Re: anyone responding regularly
« Reply #12 on: February 18, 2018, 08:08:31 am »
OT... Thanks for the buffet, your posts always make me smile 
I don't know what we would do with out your holiday posts  :)

@ Mikey, Sorry about your friend.
I know where you're coming from and he is blessed with a good friend.

@ Harley, hope you enjoy the buffet :)
« Last Edit: February 19, 2018, 08:05:43 am by Wade »
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Offline floridartist

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    • Oil paintings of Florida
I am the last one
« Reply #13 on: February 18, 2018, 11:47:53 pm »
Can I say this, an artist, I have so much passion it needs to be controlled, as I do my paintings of the forest I think of the 210 of my friends that died of AIDS in Miami, my last friend David took his life on my birthday, its okay, I am over it, at times I am able to see the canvas through the tears, the music helps to bring me to my knees, and its good for the painting, I am blessed, I am the last one, I survived with only HIV, I have finally opened up to my truth and told all my people, I disclose, I am free, From the Excruciating pain from a surgery that will be completed as soon as possible so I may continue to paint for my lost peoples, I could hardly walk down to my gate, and on the gateposts I put my HIV blood there so the angle of death will pass over my home in the forest and I shall live forever, I think its dry now, I could give it a second coat, then I can continue to stay this isolated mysterious fine artist that lives alone with the deer that walk with the kitty cats that I care for, I'm not afraid to hide the real me anymore, this is who I am, my website might blow your mind, its starting to blow mine, I think I did 500 oil paintings of Florida say what ? and here they all are, I survived from being a 14 year old living on the streets kid that sold his body on the in Syracuse, slipped through life and ended up like this, www.paintingsofflorida.com 
please excuse my grammar and spelling, I ran from the white man school, I did not go to school, they had to finally lock me up where I could not escape, I have a great story that must be told, it mingles with my art, I have all the adventures and the paintings that tell the story's, I have the lyrics of song I write with my guitar, I just have no energy to put it all together, if you have time to do it for me great,  I only have time to paint the story, and write the songs, thats me, I hurt now, and a little more HIV blood, yeah, Im a drama queen too, its the transgender side of me I guess, John and Jonnette fight over each other. so please help my find my balance so I can just do my artwork, and please someone just be here, dont give me a hard time and lets get this great book going about the other Florida, this North Florida www.paintingsofflorida.com, thats me, I hope I didnt break any rules, I dont know the way of life anymore I have been liveing behind a locked gate in the forest for 5 years now, thank you
John , or jonnette

Offline Wade

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Re: anyone responding regularly
« Reply #14 on: February 19, 2018, 08:31:41 am »
Hi John,

Nice to see you posting again.
Your paintings are beautiful and I know that part of Florida well.
The movie Cross Creek was filmed there, a very dear friend of mine worked on the film, pretty sure it was in Ocalla. https://en.wikipedia.org/wiki/Cross_Creek_(film)
He passed two years ago of a heart attack and I still miss him very much.
You captured the misty hammocks beautifully and you have a lot more going for you than HIV. Is your work still on display ?
I sent you my email in one of our PMs a while back, I will give yo another shout.

Hugs,

Wade
« Last Edit: February 19, 2018, 09:07:59 am by Wade »
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Offline floridartist

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    • Oil paintings of Florida
Re: anyone responding regularly
« Reply #15 on: February 19, 2018, 08:41:19 am »
So I wait for you

Offline Wade

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Re: anyone responding regularly
« Reply #16 on: February 19, 2018, 08:54:10 am »
John,
I sent it, you should have it now.
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Online JimDublin

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Re: anyone responding regularly
« Reply #17 on: February 19, 2018, 02:31:30 pm »
Leatherman, sorry to hear about your friend and wishing you strength in this time ahead.

Look this is the LTS section as you all know and I respect this section of the forum and stay out of it but as the topic does touch on the forum I will jump in on a short note. You can all boo and complain later.

Quote
Today the needs of PLWH are just different from the needs of PLWH in the early 2000s. The forums simply reflect the times and the greatly changed situation.

Agreed.

LTS was vastly different than 2000's of course and today the needs of newly diagnosed people are vastly different that 2000's area, damn things change so fast they are different from people diagnosed in the early 2010 area.

The last 10 years or so we have seen WHO guidelines change with start study meaning "treat all" so people diagnosed early can start treatment and need not become sick or damaged in the first place. U=U is making progress, mental support is more and more the case, better peer support on the ground and more affordable less life impacting treatments have come to market. Also travel bans have either been lifted or relaxed, protection or equal employment rights for many locations have been extended to cover PLWH, the list just from the past 10 years goes on and on.

So in short so much has changed and for the better meaning less questions and all of this next to the rise of different faster social media formats and the better peer support networks on the ground.

I also simply think the bulk of people nowadays in developed nations that are newly diagnosed can get treatment and with a bit of care and attention they can get back on the road and move on with their lives. HIV itself is not a roadblock.

Now I'm no LTS and I can't talk to that I would not dare to do so. What I can say is that the experience I had is also thankfully for most people a thing of the past being from the time and policy area that treatment was available but you first needed to have AIDS and sick before you got treatment. It was wrong but sure nobody knew better and the false thinking, debate that waiting was better and any issues would heal once you finally started treatment. I am so glad this thinking has changed and its no longer the experience as I was one that waited or was made to wait until I was sick and well not all the damage healed and its left scares both mentally (as most know) and physically with me.

So seeing the changes even from the last years and the great progress made I am to be honest really thrilled that less and less people need a forum like this, as that also i feel reflects that the majority of people simply are not even experiencing the challenges that I did.

That all said I'm glad that there are still a few people here including members of the LTS group to support the odd newbie that needs a hand to find his/her way forward and to support PLWH in places that have yet to benefit from so much of the progress made in developed nations.

Jim

P.s sorry for the rambling.
« Last Edit: February 19, 2018, 02:41:47 pm by JimDublin »
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Offline floridartist

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    • Oil paintings of Florida
Re: anyone responding regularly
« Reply #18 on: February 21, 2018, 01:06:52 am »
It was like the first HIV positive meeting that we finally got NA to agree to called, Positively clean, i remember we used to say, You cant keep what you have unless you give it away, meaning, helping out the new comers, dont forget where you came from and reach out to the new comers,
thank you for the reminder.

Offline em

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Re: anyone responding regularly
« Reply #19 on: February 26, 2018, 09:21:10 am »
got a lot of responses with this topic and read and reread them trying to think what might be a reasonable response for all that was stated and answered. It seems like everyone had written very heartfelt thoughts.

I got nothing to contradict or argue about here. Or prof text by quoting questionable quips or things I do not agree with. Even though normally I would disagree just for the sake of starting an argument just like everyone else on the internet arguments are more fun  at least that seems to be the accepted norm of what the internet used to be. Now it is a more civilized venue for discussions or maybe not?

maybe later I will think of something to write to add to this. will try to keep it civil and polite with not to many drifty ideas if at all possible. ON the point of the post without pointless tangents   drifting all over the place. 

even though I have had HIV for a long time.  I am still, may always be and as it seems in the past for my whole life been unable to deal with social situations well.
dealing with others has not been my strength

with that said

thank you for adding to this posting, thank you for having this place to write too and read.



HIV I had come to terms with it and expected to pass away a long time ago. I made no long term plans even tried to find peace and enjoy the short ride that has turned into a very long ride that I may have or should have planed better for and not been so ready for the end that did not come when I thought  it might??

I have a picture of a family gathering and I look solemn and forlorn thinking about my short time left on this earth do to HIV . While I was waiting to turn the corner and face my death everyone else in the photo has passed away form other than HIV reasons. My grandparents my parents and my younger brother

Strange how life can turn out

that seems to be enough to bore you with I hope this lament filled message was not to depressing or  much of downer

Having HIV does not put a hold on or prevent other things on your life from moving on

All the best to you

Offline em

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Re: anyone responding regularly
« Reply #20 on: March 02, 2018, 03:03:21 am »
thank you for responding

to bad I go and ruin it by making a response

the things change the website has changed

I hope to see a change in HIV to being and thing of the past some day soon. 

all the best

 


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