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Social Stigma and Hep C
   I want everybody to try to be honest with themselves, with this one:  when you find out a person has Hep C, which one of these type of thoughts first comes to mind:

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1. They look like a drug addict

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2. They dont look like a drug addict

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3. They must've caught it from a transfusion, because they dont look like a drug addict

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4. Who knows how they caught Hep C, there are many ways to get it
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You got some good discussion out of that poll. I didn't take it because I really don't look at people as drug users, this or that. But it is true I have had some rather strange comments made to me about how I got it. I did have a transfusion in 85, but who knows and finally it is irrelevant. I love the last post of Hector's about being adults...I think it is worse to dwell on what others may think of us than whether we judge ppl with Hep.C-cause obviously we really suck if we are busy thinking about that, with one another. And Shayne's Eleanor quote made the whole thread worthwhile! That was great!
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148588 tn?1465782409
Destroying your liver with daily abuse of good scotch is more socially acceptable in this country than having done one stupid thing 40 years ago. This is why the movers and shakers in the boardrooms of this country have developed 'compassionate care' programs to help keep HCV patients off transplant lists. After all, who wants to wait in line for a new liver behind one of 'those' people.
(The above is my speculation and should be taken as such. Compassionate programs also probably have to do with tax write offs for a product needed by an uninsured/underinsured population.)
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233002 tn?1316031566
I stopped caring a long time ago after my life changed so dramatically. I was not a drug addict , rather the most rarefied of geek. Hep C did not care. it did not ask to borrow my mind, it took it. If some fool wants to think less of me because the model they carry with them for Hep C's propagation is confined to addiction and IV drugs, I will not bother them with a different point of view.

After all it is not like there was a time before Hep c had been identified that blood products form multiple people were deliberately mixed together to create a product that  was distributed by the medical community to the general population to protect the individual from Hepatitis.
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446474 tn?1446351282
Hi.

I am glad to see you say that your statements are speculation on your part so I wanted to give you the facts because I know you are someone who is open and willing to learn as much as possible of hepatitis C.

First, the fact is that the largest group of patients suffering with liver failure and are waiting for liver transplants in the U.S. have liver disease caused by hepatitis C. So they are the largest group of liver disease patients receiving transplants.

Secondly, persons that are active alcohol and drug users can not be listed for liver transplant in the U.S. They are excluded. Period testing for alcohol and drugs are performed on all listed transplant patients to monitor compliance. So no one is waiting behind an alcoholic drug addicted transplant patient.

As far as compassionate care/expanded access programs for hepatitis C treatment. It is a non-starter. In fact the only HCV drug that has expanded access is Telaprevir for use in "countries in which telaprevir is not yet commercially available and who are not eligible for enrollment into a clinical study of telaprevir".
http://www.clinicaltrials.gov/ct2/show/NCT01508286?term=%22Expanded+Access%22+%5BSTUDY-TYPES%5D&recr=Open&rank=72

To view all "Expanded Access" [STUDY-TYPES] | Open Studies follow this link.
http://www.clinicaltrials.gov/ct2/results?term=%22Expanded%20Access%22%20[STUDY-TYPES]&recr=Open

Cheers!

Hector

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163305 tn?1333672171
I'd like to add one sad fact to what to Hector's comment above. Anyone who uses marijuana will be excluded from the transplant list.
This sadly happened to a man in Southern California, whose doctor prescribed it for him, for his pain. Despite this fact, he could not get a transplant.

To repeat what Hector said, hep C is the number one cause of liver transplantation in the US.
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When I was in the hospital, I probably saw 10 different nurses/techs doctors.
When finding out I had hep c EVERY single nurse immediately said,"How did hi get that?" Before anything else. One even skipped that part....her first words were just, "Let me guess...heroin?" -Thank God I was not riba raging then and too anemic to "set her straight."I was born in '83 so a blood transfusion could have been possible and have frequented nail salonand had tattoos.  I did get my virus from drugs, but was appalled that she just came out and said that.

As for the poll...none of the above. The first thing out of my mouth when finding out someone is positive would be,"have you had a biopsy," as I would be genuinely concerned for their health.

As a younger hcv -free person I knew the modes of transmission because I liked to read medical stuff. I do think more people (myself included and those nurses) assume most young people caught it from drug use....because that's what the medical info has told us. Unless someone had track marks had to toe (with very apparent scarring not related to repeated bloodwk. for medical reasons) I would never ever assume they were a drug addict based on their appearance.
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This whole deal reminds me of phych class in High school...we were learning about the 'Belief system'.....These are all things that we learn from about 1 7 years of age that sets up our whole belief system for life. We were discussing if it is at all possible to change ones belief system once it has been created.

We were asked to write on a piece of paper what we thought an alcoholic looked like. I wrote,'A homeless man with a dirty face, long stringy hair, dirty ripped clothes and bad teeth.  He had paper had around his whisky...'

Even knowing that alcoholics can be doctors, lawyers models and the guy next door this was the FIRST IMAGE that came to mind. It was very interesting. I think the thing to do in these situations is to have knowledge override these 'beliefs.' It is okay and human to have a first reactive thought. you cannot stop those if you tried. But it is good to have your brain weed out the nonsense!
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408795 tn?1324939275
"Before anything else. One even skipped that part....her first words were just, "Let me guess...heroin?" -Thank God I was not riba raging then and too anemic to "set her straight."

Unfortunately that is a fairly typical response as I had almost the exact same thing happen to me when I went in for one of my liver biopsies.  Some people are idiots, even ones who work in hospitals!!
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*that's 1 TO 7 years
  
(And the homeless dude is holding a paper BAG)

You would think all of my auto corrects would have forced me off my lazy butt on to the computer now!
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You should have heard her tone too! It was sooooo snotty. she thought she was a genius showing off in front of the lab people.
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The most striking thing about this poll was that "one person "  actually voted that they believe they can tell an HCV " transfusion " person from a HCV" drug addicted" person??
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1280753 tn?1367761532
...that's exactly what i was thinking will.....does it really matter? i was born very good looking and no one questions why; why him and not me....????

ahhh, well that's what i think....i guess the very good looking people get HCV too....like me...
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179856 tn?1333550962
I looked better when I was on them than now that I'm not.............go figure.

Boy we haven't done such a great job educating the new people have we?
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The new people are educating themselves just fine-it is the population outside of the hep. community that the information about transmission and stereotypes.
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2059648 tn?1439770265
I agree with your posting on the issue.
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446474 tn?1446351282
First, Let we say I have never had a nurse ask me anything about my hepatitis C, liver disease or liver cancer. Their job is to take care of my needs that day. They aren't my doctor who is managing my medical treatment. Do they ask all patients how they got their disease? Its none of their business frankly.

If any person (admin, nurse, social worker, etc.) at the hospital that I have been going to for the last 10-15 years ever said "Let me guess...heroin?" I can tell you with absolute certainty they will be either disciplined or fired and not be allowed to work with the hospital's patients. It is our own responsibility as patients to stand up for ourselves and others to make sure we never allow anyone to disrespect us because of our illness. Just look to the history of the AIDS movement if your need an example. They were discriminated against in every way imaginable. But they refused to put up with that type of ignorance and poor treatment. They didn't say "whoa is me, gee why is the medical system treating us so poorly when we have a life-threatening illness?" They fought back and demanded to be treated with the care and respect we all deserve as human beings. If we had more people with hepatitis C who refused to be treated poorly we would be better off than we are now.

I would encourage anyone who is discriminated against because of their disease to report that person to management. They should not be allowed to interact with patients needing care. Put them behind a desk shuffling papers, out of sight and out of mind, fine. But they should never work with patients again until they can prove that they can provide humane care. People's prejudices whether (racial, religious, sexual orientation or cause of illness) has no place in a health care setting.

Hector
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Agreed. And very eloquently stated.
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2059648 tn?1439770265
I have been discriminated against all my life.  I can see it and smell it.
Changes are made by the answers you give and how you respond.  
Beating people up because they asked a question that might be discriminating...hmm.  I recently had someone behind the medical counter ask this question.   Is the person your with OK with this.  I just smiled and
and kinda chuckled......  and said, yes because they love me.
Have a Great Evening All
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163305 tn?1333672171
Hector's absolutely right.
Their conduct is far from professional and should be reported.
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Yes, I should have reported her. I have no excuse for not other than feeling like death that whole weekend so I didn't care at the time. All I cared about was living. I do not want her to disrespect any other patients. I go to this hospital weekly for bloodwork so it will be very easy to say something. Right now I just know her as being dark haired and with glasses...hopefully they have a list of everyone who worked with me from the ER to admittance.
I think the other nurses that asked were curious. She was straight obnoxious though.

Now that my head is more together I will make sure this does not get by me again. Even if I'm to weak. ..I'm sure hubby will throw some punches on my behalf. This has to stop.

Laura
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1669790 tn?1333666195
Good for you Laura.   We shouldn't tolerate this disrespect from the staff while coming to their office for treatment.  I understand your not feeling well and wanting to let this slide.  I had a similar situation at my hematologist's office with a nurse who had very sloppy techniques, touching their gloves to the floor, etc.  I asked them to change gloves and later talked to their supervisor who thanked me for bringing it to their attention.  It is the right thing to do and likely not the first time its happened.  Bring your hubby for moral support.  
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179856 tn?1333550962
The most striking thing about this poll was that "one person "  actually voted that they believe they can tell an HCV " transfusion " person from a HCV" drug addicted" person?? ."

The new people are educating themselves just fine-it is the population outside of the hep. community that the information about transmission and stereotypes. ."

Apparently the new people in here do need a bit of learning it appears to me. The stigma is practiced in here just as well as outside obviously. If we can't get insiders to understand how can we get outsiders to?

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446474 tn?1446351282
I didn't mean to single you out. Anything I say, I apply to myself as well. I understand that we may feel caught of guard when feeling weak, vulnerable and depended on others in a medical setting. But for myself if I don't like the way something has been done than when I feel better I will follow up on it. Make my opinion as a patient known. That goes for appreciation too. I always write letters to let my nurses and doctors know how much I appreciate their help when I am going through something difficult. I also tell them face to face and let them know that I would be happy to write a note to their boss letting when know what a great job they did taking care of me. When someone does a great job I think they should be recognized for it as well. As a department manager this was my same approach to promote job satisfaction and to promote improvement in job skills. Unfortunately people tend to only voice their criticisms while taking for granted the things that are done right.

As you may know I have had countless procedures over the last number of years including a number of evasive procedures such as my localized chemo treatment. Many of them are not pleasant to undergo. But with the help of numerous folks I have gotten through them all. From the techs that setup the OR, anesthesiologists to the surgeons and interventional radiologists. They have all been kind and helped to make me feel relaxed before and during the procedures. I know I have been very lucky and had exceptional care. I don't take that for granted. And I feel very sad for those who have had lesser qualities of care. For the last year they have kept me alive with my cancer and will, to the best of their ability, keep me alive for the next 6-9 months until  I receive a life saving transplant. How do you thank someone for keeping you alive? I haven't really figured that one out. I just know I am grateful and live every day knowing that tomorrow is never guaranteed.

We all do the best we can. I just think we can always do better if we try harder. The only way I know for us folks with illnesses to be treated with dignity and respect, is to demand it. If we don't do something about it who will? We can grip among ourselves, but we are just preaching to the choir. By interacting with others when appropriate, we can educate them to see that we are like all ill people; in need of care and support which is why we are seeking medical attention.

Cheers!

Hector
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2059648 tn?1439770265
I agree with your last comment on this issue.
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179856 tn?1333550962
It's sad Cheppie many people got HCV by experimenting with drugs when they were just kids and they grew up to be mature members of society. The stigma ***** and we certainly can't have it in here or we're all sunk!

:)
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I just feel sorry for the person who has it. My first response would be oh crap and then I would ask if they were going to treat it.
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Well, my Treatment Doctor happens to be an Internal Medicine Doctor, and an Addiction Psychiatrist, and I remember her telling us, if a person injects I.V. drugs, for a month, then there is a 50% chance they will have Hep C, but if they continue on to become addicted, and inject drugs for a year, then they have a 90% chance of contracting Hep C.
   Back in the 90's, when she was doing intake work, at a methadone Clinic, she began noticing that most of the addicts had Hep C.
  I go to a Hep C Support group, at her Clinic, and there are many people who attend these meetings. Some are Hemophiliacs, who sometimes even come from other States, to talk with my Doctor, because she is willing to treat people that other Doctors arent willing to treat, because of their health, etc.
   When I first attended the meetings, I said to myy husband, lots of those older ladies in there looked very square, and two of them are nurses, you dont think they were Wild Childs' of the 70's, do you?  And my husband would tease me back, saying they were still wild, and that a bunch of them kept winking at him, etc.
   I know it may be "wrong" for me to think these things about my peers, and my curiousity doesn't stem from meaness of spirit.  In fact, I really enjoy making people feel good about them-selves, and enjoy helping out animals, and the environment, etc.
  I am just interested in Human Nature,  Psych, and Sociology, etc.
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So ? what are you saying here? what was the purpose of this
poll? IT DOES NOT MATTER WHAT PEOPLE LOOK LIKE!
OM good God!
As long as I've been here I've never seen this' anything like this!!

HCV does not care and neither do I. I still don't know how some of
my close friends got it , because it just does not matter!!!
Re:
Hemophilacs , your doctor is a good doctor however , I would like to know what the heck makes her so special than say..... some of our other hepatologists
and hematologists? treating a person with hemophilia takes, more than just
a MD , it takes all three on board.
It's not easy, not at all.  Hemophilacs have been treating for a while now,
nothing new.
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1747881 tn?1511918860
"it is pretty rare for people to reinfect, after Tx, even people who actively use according to stats"

"Hahahhh.  Where do I get this stuff?  Like I have told you guys over and over agian, form my Most Beloved Doctor, Dr. Diana Sylvestre. She is an Internal Medicine Doctor, and an Addiction Psychiatrist"

"I got my Stats from her Lectures, concerning reinfection"

"Well, my Treatment Doctor happens to be an Internal Medicine Doctor, and an Addiction Psychiatrist, and I remember her telling us, if a person injects I.V. drugs, for a month, then there is a 50% chance they will have Hep C"

?????????????????????????????????????????????????????????????
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179856 tn?1333550962
I'm pretty sure HCV is like pregnancy, you can get either on the very first shot.
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Hugs back atcha Keith
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  I am SO glad you dont discriminate against people.
In a Society where I see so many homeless, disabled people sleeping on the streets, I sometimes feel surprised that more people dont help them out, by giving them money to stay in a motel room, for the night.
   When I was pregnant and homeless, many good people did give us donations, and I was able to stayin a motel every night,and subsequently, I got back on my feet.
   But I also still feel the discrimination, here in my own home town.  Although I have been clean and sober, for almost 13 yrs now, my own mother and three sisters will still not speak to me.
    By reading the comments and results of this poll, one would get the impression that there was NOT alot of Social Stigma, concerning Hep C.
   It might also be the area I live in,  the San Francisco Bay Area.  I know that people are continually practising Classism. They check out what kind of car I drive. What symbols are on my clothing. For Instance, I was lucky enough to find a discarded pair of shorts, that had the NorthFace insignia on them, and I noticed people were more friendly to me (if they didn't see my crappy car)
   They look at what kind of shoes I am wearing, what kind of hair-cut I have  (I cut my hair myself, to save money, so I cll it my CaveWoman Look)  Classism and Stigma are alive and well, at least here, where I live.
  
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Internal Medicine Doctor? Thats what my gp is but i wouldn't want her treating my Hep-C
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I am really surprised that the people living in SF would be prejudice or judgemental.  I lived there for several years and thought just the opposite since such a diverse community lived there.  I have lived all over the US and I thought that the people of SF were the most laid back and caring people I had ever met.  JMHO

Jules
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163305 tn?1333672171
Honey, truth be told, most people don't give a hoot about what anyone else is wearing.

Years ago I recall fussing about what I was going to wear to meet someone. Then I thought, 'what were they wearing last time I saw them?'
I couldn't remember.

Money, clothes signs of material wealth do not make a person kind, caring and compassionate.
It isn't what makes them feel good about themselves.

What values are important to you ?
Those are the attributes to aspire towards.

I've found if I can focus my mind on kindness, it helps me feel better about myself.

It's not what you wear, it's how you feel, inside, about yourself.


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2114467 tn?1358213856
We all know that people are judgmental.
We are our own worst critics.
People are usually more concerned about themselves, than you.
Love and respect yourself.
Love and respect others.
Be grateful and communicate that.

If people in the health field are not able respect clients, someone needs to know. I don't want them to be fired, I want them to be educated.
Cheers,
C
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2038871 tn?1329801810
Im very honest when it comes to telling people how I got hep C. First of all I think we have to be for ourselves and what they think does not really matter to me because if they want to judge me then go right ahead....what matters is the fight and trying to make people aware and knowledgeable of what could happen if they make bad choices in their life(which I did) but what matters is what your doing now and helping prevent others by educating them. I have also found that most people dont care until it happens to them but that is the way our society is in general..."it could never happen to me ."
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I know many people who dress, drive, and live in fancy homes. and the truth is they don't have a pot to **** in, they are in hawk over their heads. Always thought SF was more liberal and caring. Guess i'm lucky to live in the midwest, frankly we could give a sh!t less what you wear or drive.
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163305 tn?1333672171
I'm sure you meant hock not hawk, so I won't take offense :0

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  Well, I dont live in San Francisco, I am across the bay, in a much smaller town, and I have lived in my home town, my whole life.
   So the people I feel are judging me, are people I went ot grammer school with, and high school with, and some of them are my FaceBook friends, but they dont even awknowledge me when they see me in town, etc. Alot of the people I grew up with, are very affluent, and havent been affected too much, by the decline in our economy.
   In all fairness to them, when I was in my twenties and early thirties, I was a pretty loud and obnoxious drunk, and then a Crankster Gangster. I have changed, and forgotten that I used to do horrible things, like floss my teeth onn the bus, while talking about my Hep C, etc. I am not proud of the fact that I used to show up at our local coffee shop, tweeeking my brains out, with my head shaved, wearing a bath-robe, or worse, a pair of mens boxers, thinking they "passed" as shorts. I was pretty delusional, thus, the shaved head...I kept thinking I had "worms" in my hair : (
   Years later, I did watch some 20/20 show where someone did come back from a trip from South America, and a Doctor did find some weird looking worm, under the persons scalp..aaaghhhh.
   But yeah, some parts of San Francisco may be less judgemental.
I usually find, when I travel out of The Bay Area, like thru Nevada, that the people in the really small towns, are alot more friendly
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163305 tn?1333672171
If you show through your actions that you are not the same person you once were, some people will gradually come to accept that you have changed.
Some never will.
Things you have done and forgotten, they perhaps, have not. And it may not have been your shaved head or weird clothes. It may have been your vibe or your actions.

My best advice is to focus on awareness of your self and kindness to all.
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Yes, exactly.  That is what I strive for, and I dont neccesarily expect kindness back, that's not what it's all about. I do it for the simple act of doing it, to ease someone elses pain, if only temporarily.
    And I have also been surprised and touched by the kindness some of
my aquaintences have shown me, in the past, when they knew I was going thru a rough time, when one of my family members was ill, etc.
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446474 tn?1446351282
The Bay Area is not San Francisco folks, don't get the two confused. It is like saying Hoboken is NYC. Forgetaboutit Frankie!

I live here in the city of San Francisco not Oaktown, Oaklawn or some suburb mall town. I've been here for about the last 30 years and SF is the most opened mind city in the US. I am from around New York City. I've been all over this country and SF has largest variety of people, food, things to do, micro climates just about anywhere. It is pretty too. Go to any country in the world and mention the Golden Gate Bridge. They have all heard of it.

SF=Live and let live.

jules2551 is more accurate in her assessment in my opinion. And as far as hep C or whatever, no one bats an eye about how you got it. This is the city of Haight Ashberry, The Fillmore West, Love-ins, Tune in, Turn on and drop acid and all. Gee, people took drugs in the 60s? I'm just shocked, DOH!

Personal pot use is pretty much legal. I wish those damn High School kids would stop smoking it on the city buses cause I'm always getting a contact high.
It is legal to walk around on the street naked. Unfortunately it is always the last people in the world that you want to see naked (must be a law of the universe that Newton forgot about) that decide they just need to take their clothes off. I personally think its fine to be naked, but there outta be a law against ugliness. They could use some serious gym time too. It is really a crime against nature (or anyone with 20-20 vision) with some of these exhibitionists. I mean their bodies look more like a surrealist sculpture than a body of a man or woman. Lucky being in San Francisco we have karma here. Otherwise known as payback in most places. When that SF fog rolls in they freeze their tootsies and a few other parts off. ha ha

From the US News and Travel Report:
'Why go: With a reputation as one of the world's bohemian capitals, San Francisco is a city of unabashed open-mindedness and fierce uniqueness. Frequently referred to as the most European city in the States, San Francisco is both laid-back and cosmopolitan. '

Love it or leave it!
Hector
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Yes, definitely,  Hector is right. Luckily, they built a subway here, called Bay Area Rapid Transit, only we just call it The Bart Train, so I have been traveling to San Francisco since I was 9yrs old.
    As a teen, I spent many happy hours, roller-skating in Golden-Gate Park, and as an adult, I enjoy the free concerts also put on, at Golden Gate Park, such as The Summer of Love, etc.
   There is also great food there, and museums, tons of different events, etc.
The Bay Area is just a rough term, that Ithrow around, to keep myself my where-abouts anonomous, since I do live in a much smaller town~
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OMG, I am still cackling! You are really hilarious, Hector.
I lived in SF. for 20 years and am in Oakland for 5. It is true, S.F. is a very open place and lovely. "Oaktown" is not as pretty but I find the people much the same. I have just recently mentioned to acquaintances that I have Hep C (though undetected) and no one bats an eye, except to tell me about a family member or friend that has it.
I sometimes long for the experience of real seasons, but I have to agree SF and the bay area is a great place. When I lived in SF, I was a city snob too, but Oakland has humbled me and helped me see the error of my ways (the belief that the East, North and South bay revolve around Planet SF. :-)
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  I have always loved Oakland also. As a child, many happy hours spent at Childrens Fairy-Land, and Lake Merrit (and I took my kids there also)
   I also think ol' Jerry Brown did a pretty good job, at beautifying the area, around 20th and Broadway, the way he put in some old-fashioned looking town-houses, along with those cobble-stoned streets.
   Anyhow, The Fox is now putting on some good concerts, and there is  the new Rudys' Cant Fail Cafe, which makes that area much more lit up at night, and safer.
     I wasn't so thrilled about Laney College being so close to Oaksterdam, since I dont want my kids to smoke it, but I guess we have this problem in all the towns thru-out America. Our kids are either gonna smoke it, or choose not to~
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2114467 tn?1358213856
I grew up in San Francisco. One learns to be accepting of different cultures and ideas early on; it's the exposure.
There are people all over the world with similar experiences. They learn to live and let live.
Okay, so my point is this, no one can make me feel bad about myself, other than me. If someone is mean or rude to me I make choices.
I am human and i can be judgemental too. I take note of my thoughts, and try on different points of view.
That said, all should know that, San Francisco is the best city in the world.
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317787 tn?1473362051
WOW!
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2059648 tn?1439770265
Hector, SF is exactly what you said it is : ). Beautifully put. I was born in
the  Bay Area.  I have a picture taken at Fort Point with the Golden Gate
in the back ground.  Its an amazing picture.  I will post it when I'm UND.
I think I was 18 at the time.  It will be interesting if you can guess the year.
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>>>>   I want everybody to try to be honest with themselves, with this one:  when you find out a person has Hep C, which one of these type of thoughts first comes to mind:<<<<

I guess I would say, That looks like it could be MeWithC.......
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