POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: newbernswiss on July 31, 2007, 02:38:04 pm
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What is the one thing that stresses you the most being HIV+. :'(
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Since you asked for one:
HIV winning, and me loosing....
Bob (who, along with others, have a long list)
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Right now its the loneliness and isolation, but I am changing that!
~Cindy
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HAVING TO TELL FAMILY N FRIENDS THAT IAM HIV..
I CAME OUT OF THE CLOSET WHEN I WAS 19..TELL MY MOM I WAS GAY
YEARS LATER, I HAD TO COME OUT OF ANOTHER CLOSET..BEING HIV POS..
THE STIMGA IS WORSE THAN THE DIEASE ...
I HAVE HAD, PEOPLE THAT KNEW ABOUT MY HIV STATUS, PULLING THERE CHILDREN AWAY FROM
ME, AND WENT TO A FAMILY THANKGVIVING DINNER, THE TABLET WAS SET WITH BEAUTIFUL
CHINA, MY PLACE SETTING, WAS A PLASTIC PLATE WITH PLASTIC UNTENSILS..
I THOUGHT I WOULD DIE.......I COULDNT JUST UP AND LEAVE BECAUSE A FRIEND HAD TAKE ME
TO MY FAMILYS HOME....THERE WERE NO BUSES AROUND AND I DIDNT HAVE ENOUGH MONEY TO
TAKE A CAB HOME.............SO I SAT THERE LIKE I HAD LEPROCY..THEY MIGHT AS WELL, PUT ME ON
A DESERTED ISLAND................THAT WAS JUST ONE OF MY WORST DAYS..........
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Definitely telling my family was the hugest stress, and one I lived with for an entire decade. I kept telling myself that it was not causing me any stress and was in complete, deep and utter denial about it. Finally I removed the issue from the plate and told them, but still I am cognizant of the fact that telling them in '93 and '03 represent wildly different scenarios. At least by '03 more people were familiar enough with HIV to know I was not facing imminent death.
Today the stress is mostly what I call "long term battle scars" in that I think my mind is fucked residually from it all. I've spent the last couple of years in therapy seeking to correct this and manage it.
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Quote Philly: "Today the stress is mostly what I call "long term battle scars" in that I think my mind is fucked residually from it all. I've spent the last couple of years in therapy seeking to correct this and manage it. "
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This statement comes closest to what I feel is LONG TERM HIV stress for me. Philly is right on target. Its called POST TRAUMATIC STRESS SYNDRONE. I am starting to come out of a LONG LONG period of time in which I barely functioned. Grief and mourning are my two biggest HIV stressors. Fear of the unknown a close second.
The rest is just what we deal with everyday....... bumps along the road.
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This statement comes closest to what I feel is LONG TERM HIV stress for me. Philly is right on target. Its called POST TRAUMATIC STRESS SYNDRONE. I am starting to come out of a LONG LONG period of time in which I barely functioned. Grief and mourning are my two biggest HIV stressors. Fear of the unknown a close second.
The rest is just what we deal with everyday....... bumps along the road.
Well, all I can say is that you've been exposed to the stress much longer than I have so I can only imagine.
::hugs::
I wish someone had warned me that this PTS would happen but I guess they thought I'd be buried by now.
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What is the one thing that stresses you the most being HIV+. :'(
22 years ago, I would have different answers to that question. Today, My biggest stress factor, is knowing that someday, I may not be able to work. Keeping busy, has always been a part of my life. Without work, my healthcare plan goes out the window. So,...maintaining work and my healthcare, is something I think about often, and it can get stressful at times,work can be stressful at times,.. but I try to keep it under control as best I can.
Take care------Ray
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Oops. I thought this was in the Living With HIV forum. Careless clicking!
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People and institutions who tell me that I should be stressed about having HIV; and HIVers who believe that having the bug gives one a free pass on living recklessly, so I should behave that way, too.
I'll raise my hand for being a member of the PTSD Club, but it's from living through all of the death when I was in my teens and 20s and avoiding testing.
When I went off meds 96 weeks ago, I fgured that I would be off for a few months, then back on. When I got labelled an LTNP six months later and agreed to stay off meds for research purposes, I started having "til the next shoe drops" thoughts for several weeks. Then, I reminded myself that whatever will be will be, knowing that I can influence positive outcomes only by caring for myself to the best of my abilities--and that includes keeping an optimistic outlook.
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I agree with Philly and Bear. It's long term battle scars here too. Too many people lost, too many times of being on the brink of death and watching my kid and some of my family wringing their hands.... Other than that, which I handle with therapy, just normal every day "hardships." Watching my mom die, wondering if I'll have enough money to make it through the month, etc.
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I think it is a combination of PTSD, brought on more by what others have suffered rather than what I have been through, and, as Redhotmusclbear said, waiting for the other shoe to drop that causes me the most stress.
Having to tell someone they have just tested positive is next on the list.
HUGS,
Mark
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Finding a partner :-\
My family wasn't such a problem , the situation was critical so no need /opportunity to hide it.
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quote Joemutt: "Finding a partner"
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Thinking about this quote brings up lots of memories.....about fearing that I would be alone and sick with noone to help me because.......I am HIV positive and I have AIDS. At least that was one of my fears. Luckily I found a sweet natured, good cook who loved me and was HIV positive himself. I did not develop AIDS but my partner did.
I hope you find a partner Joe.
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The only thing that stresses me is waiting for the blood results each couple of months.
I can honestly say that my day to day life is stress free thankfully. But the minute the blood is out of my arm and I know that someone somewhere is going to have more information than I do about my health then I get wound up - I think it's the control freak in me!
And of course the coming week is that particular time again - bloods tomorrow and the results in a week - maybe that's why I'm responding to this thread now!
Emma
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Actually mine is the feeling of being trapped in so many life situations because this disease is in control and I'm not. There are days that I want to work and can't because the stress of the job may make me sicker. I can't change locations because I have to make sure I'm close to the best medical care available. I can't love for the fear that by loving I may become a burden. There are so many people that believe that if you don't like your life that it's up to you to change it but in our case we have to consider the change very carefully because it could be a change that could kill us. Don't get me wrong I thank God every day for the life that he allows me to live but curse this this disease because it keeps me from living my life to the fullest.
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Just Joe,
I truly know how you feel. I also feel trapped due to HIV. I find myself not taking chances as I would do when I was HIV negative. Examples: changing jobs/careers, moving to another location or state. I'm the most worried about health insurance. I have good insurance for me and my partner so I don't want to lose that. Thanks for you post.
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If I have a stress, it's MONEY. Going from not ever worring about money to watching every dime and nickel is my stressor. I had a shrink once tell me, don't worry about things you can't fix, it's energy spent unwisely. I guess I live by that. As the saying goes, " what will be will be."
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I'm with you Rodney.....I worry quite a bit about money. Being poor and "in the system" comes with quite a complicated set of "issues".....there's the shame, the guilt, the jealousy that pops up for others who seem to have so much more....
But lately, I think my biggest stressor has become the actual clinic visits themselves. Some of you may remember that I kept my "private" physician for 18 years, thanks to GA Ryan White funds paying the insurance premiums.
That all ended this year, I am getting my healthcare at the Univ. of Alabama at Birmingham 1917 AIDS clinic. This year, they have been overwhelmed by new patients (I can't say much, I am one of them!) Birmingham is one hour away from me. I left my apartment at 6:15 this morning; spent the first half of the day in the dentist's chair, then the hygenist's chair.....then back into the "oven on wheels" (It was 103 in B'ham today) to grab a quick lunch (hard to do when your mouth is numb!).....then back to the clinic, to line up at the pharmacy to get my HIV meds...then more waiting to get my testosterone shot...then more waiting before my psych visit. Then, it's back into the oven to drive over to B'ham AIDS Outreach, to get assistance with gas vouchers. More heat, more waiting...... After today, I feel 5 years older. I'm just not sure how much longer I can keep all this up, and that scares me sometimes.
Just needed to vent a little bit this evening!
tired hugs,
Alan
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Thinking more about it, I also stress the one and only doc we have here will actually retire before someone else comes along to take his place.
For most of us, that would mean a six-hour roundtrip drive to Albuquerque to see a doc there with little or no local assistance should something happen.
I used to do this back in the early 90s. It never failed that I would have to head down south (to Albuquerque) in the middle of a snow storm during the winter.
It was just damned inconvenient, especially if someone develops a problem he wants a doc to look at that can't wait two or three months.
While I love living in the hinterland, there are times when it is a pain and, yes, it does cause me stress.
HUGS,
Mark
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Not knowing what to do to help myself. I read books, articles, blogs on being hiv +, what next, etc. I've read many of the books and articles that believe HIV and AIds are unrelated. Even if that's true, what does that mean and what's next? I would still be HiV + with or without the potential for AIDS.
I think what tresses me out the most is that I will never date again. EVER. I think hopefully in the back of my mind, but then I think I must be crazy to think that it could happen. Not only am I hiv+ I have other Std's that get in the way also. It just sucks. They are treatable stds for th emost part, but require a great deal of time off of work and pain. At the moment I am hoping to have something done in January which seems like a long way away. There are creams that can help but nothing that will permanently kill it all. So when I think about all of it combined with being positive it's an easy trap to get down. So I do my best to not let myself get there.
So in the mean time, I have no one to talk to face to face and would love that. I don't even care if it's a man or a woman. Just a person. I did have some online friends taht I've shared with, but that has died down and also, it's not quite the same thing as having a human sitting in front of you.
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Steinway, don't mean to bust your bubble, but HIV and AIDS are related. It's not a myth, it's a FACT.
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Echo : isolation and loneliness
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I have no issue with HIV itself, only social reactions. For me I have it and that is that. Being an avid global traveller I must admit being confined by legislation is my greatest stress. Twice in my life I have been turned away from achieving very important and strategic moves that would have furthered my life in a way I had planned it to be prior to my infection. Many more little situations have come and gone but they were not as painful. A well cultivated career meant travel, adventure and freedom for me. After my diagnosis I worked hard and had the chance to work abroad (USA and Vietnam). Both jobs would have advanced my career enormously yet both job offers were declined due to either legislation or remoteness. It was the greatest let down I went through as I was so close to reaching what I worked towards. I learnt to avoid these situations and downgraded my ambitions and my career until I fell apart 4 years ago. I did so because I was forcibly living a life working in a conservative job just to make good money. I only ever felt trapped during that time because I went against my nature - I was rotting inside and going nowhere in terms of adventure. After much strategizing and some degree of acceptance, I found a job that takes me abroad 4 - 5 times a year and feeds my desire for travel and adventure. It is not what I hoped for as the desire to live amongst different cultures has not subsided to this day and this job is the closest I can get to that. I am well aware that being long term HIV I need to be realistic about drug access and that social attitudes differ from country to country. In short I guess my strong nature is in opposition to the confinements that a HIV status creates and that does not change with time. I'm p#$$ed off more than stressed but you got to make do with what you can get away with. As for dating..... being single is not much of an issue now and does not stress me out. Ive come to the conclusion that HIV does not determine love or how you relate to others - it just comes down to emotional intelligence and compassion. I learnt to avoid situations /people not capable of showing that so Im not missing out on anything :) That does not mean I do not think how nice it would be to share my life with someone as I stilll hope to meet a guy I fall for and one I feel at ease with.
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:'(Well said hudstar