POZ Community Forums
Main Forums => Living With HIV => Topic started by: Juzme3165 on October 03, 2006, 11:50:44 pm
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Hey bloggers and other intensive users of this site. Let me introduce myself, My Name is Gregory, I live in Pennsylvania and I have been HIV+ since 1978. I found my way here following a link at the bottom of a blog on POZ. Please feel free to ask me questions as you see fit...and after my very poor spelling, poor grammar and typo's in my very first post I most certainly do deserve some wise cracks. I work in healthcare btw. I didn't want to be rude by just intruding into your domain unannounced.
(Why do I feel like I just joined a 12 step group?)
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Hi Juzme and welcome to the forums.
I've moved your thread to the Living Forum, where it will be seen by more people. The Blog Comment forum where you originally posted can be a little quiet.
Um, twelve-step group? If you know where the coffee and donuts are, please tell me cuz I can't find them! :D
Ann
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Gregory,
I gotta say welcome, and hope you find our 12 step comfortable and amusing. We sure do....
Well, since 1978, wow, I have been recounting my experineces here that have happened to me since 1979 with this disease, and few even understand that we were dealing with it long before anyone was paying attention. Now you drop in and things will surely be a tad bit clearer for many here. I must congratulate you on your survival, as I know it wasn't all just a bowl of cheeries.
Welcome...
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Hi Gregory,
Very pleased to meet you! I hope we get to see you more around here.
Welcome to the forums!
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Hello Gregory,
I'm happy to meet you and very happy you found us ;D
Hope you stay around awhile.
Peace,
Kelly
(http://i55.photobucket.com/albums/g142/angels4kelly/bluewelcome.gif)
(http://i55.photobucket.com/albums/g142/angels4kelly/importD16.jpg)
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Welcome man!!!
Alex
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.
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Hello!
Welcome to the forums!
Christine
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Welcome to AM Gregory.. Unlike those 12 step programs, we have no "principles" here.. lol.. Please fill us in on the past, say, - 28 years.. Sounds like a journey of a lifetime...
Love
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1978? That's crazy! I wasn't even born.... oh, nevermind. Welcome aboard ;)
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Wow, so many nice people....for the moment...lol ! I am a severe hemophiliac as I am sure some have guessed. I started a small company to assist others with bleeding disorders like myself. Although I always knew this particular industry was filled with greed I never expected what I have seen.
I guess in all these years I have seen alot. Working in the pharmaceutical industry I think I have seen too much. The service I stared uses huge amounts of its income to provide real services to help people with their real life issues. Government programs restrict providing more than $50.00 of additional assistance to anyone on government funded medical insurance so I developed many relationships and programs to play by the rules...it is never enough though.
Large Pharmacy Benefit Managers now want this small sector, developed to serve the most devastating illnesses, for themselves. It is honestly disturbing. Cut services in order to save money and consolidate to incerase revenue while making deals with drug manufacturers for "rebates" and it will only cost the human dignity of the most vulnerable among us.
So I fight.... alot !
I am also an Episcopal Priest. I was ordained in 2002. Now that was a trip and a half. The Episcopal church was one of the most active in accepting those suffering with HIV / AIDS... I didn't know there was a clause in that acceptance about staying on THAT side of the altar rail. OMG ! The stories I could tell.
I think in many ways I would have been better off if I were gay. Being a straight male with HIV has been quite difficult and lonely. I was not allowed to attend church for many years, had the house I rented burned down, was asked to leave college, divorced and basically left for dead. I was still very open about my status but in recent years I am not so concerned about being open about my status..after all I am not HIV / AIDS it is just a part of my life. Those here understand what a foolishly untrue statement that is. HIV invaded every aspect of my life and left its mark.
I think the worst part has been the isolation in my personal life. My family was not very supportive. I do have 2 daughters but only one has contact with me. I has been difficult.
There is a little more about me.... I need a cofee ! Thx for the love,
Greg+
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Greg,
Very sorry to hear about your trials and tribulations. Wow, what an "interesting" life you have led! (That's a huge compliment, trust me)
And yet, you've survived and thrived, much to the consternation of others. If there's a bigger "Fuck You," in the universe, I don't know what it is.
(Can I say that to a priest???? :o)
I'm anxious to hear your input on some of the topics around here.
Welcome,
John
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Wow. 1978? I was negative 12 years old! (That's right, right? 1978... I was born in 1990. 12 years. Right. Hokay then.)
That's amazing. I'm totally in awe. And it's also pretty comforting in a way, too. That sounds weird. But basically if you can go through all of that for so long and post here today anyway it shows a lot of people that they can, too. :) Weeeee.
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(http://img242.imageshack.us/img242/6982/welcome0kr8.gif)
So glad you found us here!
Hugs
Teresa
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Greg:
'78 eh? So you beat me by a few...but I was just out of high school then! Regardless, WELCOME!!! I haven't been here long but there are some wonderful people with wonderful thoughts..
Hugs,
David
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Ok, Ok, Ok... Yes, 1978, yes before some of you were born !!! Few can understand (I know there are some) the twisted shit I have seen. (Father forgive me I know EXACTLY what I do...+ ).
I just would like to say that I am not a success story in the truest sense. I work only because I founded a corporation that will never fire me...lol. There are many in these forums that are suffering a great deal and I do want everyone to know I lived in desperation for many, many years. Government cheese and all. I also believe so much in what I am doing I have risked everything to try and help others and left myself no safety net and I could end up right back on the cheese line...God spare me! Yet, the devastation of being HIV+ causes a complex destruction of the person who we were before that knowledge was part of our life. Yet we can be reborn from the ashes of that devastation. I guess I am an example that a New Life can be a good life, but I don't want to run the risk of being seen that way at the cost of anther's human dignity because they are not at a place in their life that affords them the superficial pretence of appearing successful. Each person in this community is a real life contributor and none should be taken for granted or judged on the basis of their social status.
The way I found myself here was reading Regan Hofman's Blog, "Greenbacks" and I really admirered her passion. However, her approach is very much from an Ivory tower. When you live on the blacktop with the majority of people your exposed to all the harsh realities of life and POZ Mag has found a comfortable place in the business of AIDS. Regan is impressive in many ways but comon she needs a reality check. (Damn, I wish I could help with that one...I think she would be a great person to get to know for a lot of reasons...lol).
I do think I live doing the things I really believe in and risk all to fight for what is right. Many people don't like me and I am sure they have good reason. I take criticism seriously and am not afraid to examine myself.
I think you guys are great ! I have no idea how to navigate this site yet but I am working on it.
It is ok to say FUCK, btw...lol.
One thing I hesitated to say was that I have never taken drugs for HIV. This has caused a bit of discrimination even among others with HIV / AIDS. I received no support from the local AIDS chapter till I threatened to go public...it was over 10 years after RW funds were available that members of our local AIDS counsel finally ALLOW me into their offices for a fucking intake. (OOOPS, I sense a little hostility...). I have not been ALLOWED to join local support groups for 2 reasons, I am too healthy and might make others feel badly about themselves and because I am not gay. (Gay note: I don't give a damn what you do in your bedroom and when gay men pay me a complement I am just as flattered as when a woman pays me a complement...lifestyle is not the issue at all). Talk about issues within our own community... we can be worse than those who are not infected.
Anyway, each person in these forums has a choice to make about what they are going to do with their experiences and I think the amount of insight one gains from testing + is massive and rare. The question is what will you do with it? The world around us can benefit from what we have learned..and now more than ever before the world we live in needs us to be present and active in it.
Everyone here is a success story in their own right, I am just one among many thousands...so are you! Thank you all fo ryour very kind words of support. Continue the dissection as you see fit...lol. God bless !
Greg+
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Hello Greg,
After all you have been through, there you are in your picture, with a smile on your face. I find that quite inspiring. I know I need to smile more... thank you for yours!!
Welcome!
Kindest,
Andrew
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Hi there padre and welcome aboard. You bring up am interesting point:
I have not been ALLOWED to join local support groups for 2 reasons, ...and because I am not gay.
Even here there is some commotion over this point. Ironically - I feel anyway, that the issue is not so much sexual orientation, but the fact there is so little money to go around and this admin takes such joy in us sinners ( everyone with AIDS) fighting each other instead of taken the fight where it really matters.
Anyway that is called hijacking a thread soooo "welcome aboard!
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Hehehehe.... I was just finding my way around this place and was basicly saying the same thing, so Hijack away ! We let these camera hungry assholes with great PR LOOSE huge amouts of funding at a time when the funding should have been increased. Unfortunatly, we reverberate their BS everytime we say, "there isn't enough money...". There is plenty of money, we just don't have enough of it.
Dude....SMILE, its free !!!
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:o Hello All ! Strange, I was surfing the web perplexed with my own thoughts and I came across my own posts. I reread the thread and was a little shocked at my own observations and comments because they were more true than I realized. I must say, I've since had to remove profiles due to attempts to exploit my health issues by the press and ultimately insurance companies (which seem to be having a hard time beating me in court..lol). Interesting that I've become a bit of a dark figure in the public eye. However, when I previously said things about greed and how it was truly unbelievable to see what it caused people to do...I have since seen a great deal more. I have read many life stories of those who attempted to bring about positive change for the greater good and the struggles it presented to their personal lives. Yet, my experiences are unlike anything I've ever read. Clearly, I have been and continue to try and address outrageous practises of the largest health insurance companies in the country...alone. Apparently I failed to factor in a simple rule that seems to be rather well known...if they can't beat you in court, they will slaughter you in the press. I keep wondering if I should work on that safety net, retreat or just press on. I know I will press on but this world can be ugly, ugly at times. I'm bewildered by all I have seen since I last posted here. How is it that so many who do the most obviously illegal things can point a finger and divert all the attention away from the real issues? Why aren't there more of us fighting? How do we loose more and more funding every year????? I watched as thousands accepted gossip as truth and miss the big picture. I'm amazed and tired from the war. I have been threatened, stalked, harassed, beaten physically, had my home - office and computers broken into and watched as others who stole robbed and plundered financially benefitted from their actions. What is going on when making reports to law enforcement won't even generate a responce??? Are the insurance companies that big? I mean really? Lawyers are afraid to expose the truth...maybe because they know these things might happen to them as well if they attempt to expose this kind of reality IDK...I'm not even sure I should post this....
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I enjoyed reading your story. Poz since '78...wow! I was 2 at the time. I would love to know how you feel physically and mentally after all these years with HIV.
On a side note, I've noticed with many of these older threads that get brought back up that there are many, many names of posters who I've never seen on here since I joined last Fall. Do you guys think this is due to people just moving on to other things and interests? Most just dip in every once in a while? You don't think anything bad happen to those people is what I'm getting at. I'm sure it is that they are busy and don't do the forums much. Just got me thinkin.
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I'll try again. &$^#^#$^ ISP keeps l disconnecting. WELCOME!. Being heterosexual and infected from a blood transfusion 19 years ago I can understand how things have been for you. It seems like the first thought people have ( even some medical "professionals") when they find out your status is that you are either gay, a druggie or a whore. Being labeled "infected" and dealing with the stigma, discrimination, comments, and judgment sure gives a lot of insight into what our gay friends have to go through. God put us here on this big ball of dust, mud, rock and water to help each other, not to judge each other. Insurance companies can be YOUR best friend when they pay the damn bill, but you are only THEIR best friend when you make them a profit. If you are a liability, they are going to do their best to make coverage so expensive that you can't afford it any more. My husband's health insurance ( him only) went from $287.61 per month in 2007 to .... this is yesterday's letter, $1216.72. We know another person that's rates went to over $7,000.00 a month after he got sick. He was lucky he was married to a doctor that worked her ASS OFF to make enough to pay the premiums so he had care through the end. If you are not a liability, they are going to make a percent off the top , one way or the other. Still no meds.... WOW! There may be researchers that would like to meet you if you are one of the eilite controllers. Your DNA may be a goldmine! Thanks for helping others and congratulations on your ordainment.
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On a side note, I've noticed with many of these older threads that get brought back up that there are many, many names of posters who I've never seen on here since I joined last Fall.
Another almost four year old thread that comes back to life.
(http://i812.photobucket.com/albums/zz42/livebythemoon/zombie-thread.png)
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:o Hello All ! Strange, I was surfing the web perplexed with my own thoughts and I came across my own posts. I reread the thread and was a little shocked at my own observations and comments because they were more true than I realized. I must say, I've since had to remove profiles due to attempts to exploit my health issues by the press and ultimately insurance companies (which seem to be having a hard time beating me in court..lol). Interesting that I've become a bit of a dark figure in the public eye. However, when I previously said things about greed and how it was truly unbelievable to see what it caused people to do...I have since seen a great deal more. I have read many life stories of those who attempted to bring about positive change for the greater good and the struggles it presented to their personal lives. Yet, my experiences are unlike anything I've ever read. Clearly, I have been and continue to try and address outrageous practises of the largest health insurance companies in the country...alone. Apparently I failed to factor in a simple rule that seems to be rather well known...if they can't beat you in court, they will slaughter you in the press. I keep wondering if I should work on that safety net, retreat or just press on. I know I will press on but this world can be ugly, ugly at times. I'm bewildered by all I have seen since I last posted here. How is it that so many who do the most obviously illegal things can point a finger and divert all the attention away from the real issues? Why aren't there more of us fighting? How do we loose more and more funding every year????? I watched as thousands accepted gossip as truth and miss the big picture. I'm amazed and tired from the war. I have been threatened, stalked, harassed, beaten physically, had my home - office and computers broken into and watched as others who stole robbed and plundered financially benefitted from their actions. What is going on when making reports to law enforcement won't even generate a responce??? Are the insurance companies that big? I mean really? Lawyers are afraid to expose the truth...maybe because they know these things might happen to them as well if they attempt to expose this kind of reality IDK...I'm not even sure I should post this....
The original poster checked back in and brought the thread back to life from zombieland.
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I enjoyed reading your story. Poz since '78...wow! I was 2 at the time. I would love to know how you feel physically and mentally after all these years with HIV.
On a side note, I've noticed with many of these older threads that get brought back up that there are many, many names of posters who I've never seen on here since I joined last Fall. Do you guys think this is due to people just moving on to other things and interests? Most just dip in every once in a while? You don't think anything bad happen to those people is what I'm getting at. I'm sure it is that they are busy and don't do the forums much. Just got me thinkin.
um well, since you asked.... a few of them have passed on. This is yet another reason why resurrecting old threads is probably not a good idea.
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welcome Gregory
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To answer the question about how I feel... I feel worn out. Half of my days are spend going over legal strategies and a decade of documents. The other half of my days are spent working my normal job and trying to develop a larger business base, manage employees, reviewing financial and so on. Because of a rather ugly breakdown in my family, (interesting that even now family and friends still prefer to emotionally cut ties rather than risk becoming too close and experience the loss of a loved one) my spiritual and emotional health is not the best its ever been. I have limited support. Yet I have done pretty good and still find many reasons to laugh and smile. The notion of support can be quite difficult to explain. A single, hetro male that was a long term non-progressor with a bleeding disorder and who's family is actually hostile and fixated on my death...well lets just say its already beyond rational comprehension. Support groups, therapists, social workers, psychiatrists and the like, if they weren't overwhelmed by the factual presentation could only ask how it was that I've managed to remain a well balanced individual. Not much help there at all...lol.
I think the comment about it being a bad idea to resurrect old threads is kind of ugly. We may have lost some of those who posted here but does that really mean we should forget them or their words? Honestly, the comment promotes denial, denial is the bedrock of many unhealthy and destructive behaviors. Although it maybe difficult to keep in mind that people do still die of AIDS, its a reality that we certainly can not deny and I for one would have to ask why would you feel the need to apply an ostrich approach to such a reality?
Trying to make positive changes in the world around us can't happen if we live in denial of the facts. I fight against this on many levels everyday. Too often we simply accept what we hear or read as fact without fully examining and weighing what we have been fed. It's extremely dangerous. The case in Germany against Nadja Benaissa for not revealing her status to sex partners seems to go right to my point. The fact that it is very unlikely this woman infected anyone ( 1 in 1,000,000 chance to be exact and that is without a condom) is lost in the face of a simple allegation against someone of substantial success. One might even question if they understand that genotypes could provide additional evidence by comparing the two individuals viruses. A person has a much higher chance of dying from an asteroid strike ! Does anyone think this woman's accuser might just be looking for some cash action? I've often thought such situations may increase due to the absolute ignorance and misinformation among the general public.
Oh well, another day and still work to be done.
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What is ugly is when new people come on and start asking those who have passed on or have been banned questions. I doubt anyone who has been a longtime poster here thinks of it as denial
Most likely it's your perception ...and since this is your thread I'll leave you to it.
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It would trouble me more if no one noticed .... I personally pray they just got busy with life but always with the rather sobering understanding that they may have also passed away. The pop culture today would like to say people don't die from AIDS any more but we know they do. We lose funding every year, we are seeing troubling side effects to meds, our own community is often mis or under informed on some very important and potentially life altering developments. I spend most of my time fighting ethical and legal issues in courts which no one ever hears about because at the end of the day these issues equal lives. Katherine Ann Quinlin has been dead a looong time.... Yet that case still echos in my mind regularly. The thoughts and words of our community are important always. Past, present and future posters should know that they are valuable, their thoughts and opinions count and that they will be missed. That's just my opinion. I also understand such reality can be unsettling. To which I can only say, " seize the day!".
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Katherine Ann Quinlin has been dead a looong time.... Yet that case still echos in my mind regularly.
Check your echo...her name was Karen.
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Wait, what? You think that we find resurrecting threads in poor taste because we are in denial, or do not want to think about those who have died? That is crazy talk.
Many of us, I daresay more than you think, carry those souls with us each and every day. And as we walk, carrying those ghosts, we do try to seize the day. Perhaps participating in the forum would offer more perspective?
There are thousands of threads available for reading on this site. I choose to read the newer ones, most often. Mainly because conversing with ghosts is something I come here to stop doing. I talk to them all the time, otherwise.