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Author Topic: You are just lucky; why is that not me ?  (Read 5811 times)

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Offline em

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You are just lucky; why is that not me ?
« on: June 20, 2009, 08:50:28 PM »
Always darkest before the dawn ?

But has anyone ever asked just how dark darkness can be?

The darkest darkness one can even begin to imagine the depth of darkness one can feel while isolating themselves with fear.  Then try and fathom adding  another layer and then another and  multiplying the levels of darkness and that is what self imposed isolation and solitude through voluntary exile into ones own fears .  This is what waiting for AIDS to take your life can be if you let it .

After a while the darkness can become your home your hiding place

the place you feel the best

When others are suffering and in need how can someone who has been there help them

A while back I saw a guy I knew from the homeless shelter I lived in .  He was in power wheel chair he kept running his chair into me and staring at me wanting me to say something I guess ?

All I could think was you let AIDS put you in that chair you let yourself look week so others would help ?

I felt like turning on my impression of  takleberry from the police academy movies of which never teach to a first grader I almost got one of my relatives expelled from first grade because on the play ground he started getting in everyones face saying you will do it now mister in his hardest drill sergeant voice . Ya they did not think that was funny in the first grade public school.

I did not want this guy. thinking why is he still up walking around as far as I know he has HIV longer then ME ? I surely did not want the super market calling security saying two people with AIDS are arguing in isle 7?

SO I left the super market thinking I had betrayed them for not having a civilized conversation. while staring at there skin and bones body sitting in power wheel chair. I was thinking is that how I am going to be in month OR  thinking to myself maybe the angry gruff personality everyone used to hate is the very thing that kept me from going down this person path.

this was years ago

just a thought incase anyone might be curious about an experience of living long term with HIV might be like

Not to worry it is just story only fiction stuff like this does not really happen right wink wink nudge nudge .


I do not know if I had mentioned this one yet ,
I had mentioned to a very near and dear friend about my being HIV +. I had said I had no idea how long I had this virus and they should be checked . they had said a few years back someone they had worked with they had spotted them walking around looking very sad forlorn lost with out seeming to have any real direction they were going. the friend of mine had said hello. Why so down. They had asked for a smoke and my friend had said they had one left and were willing to share it with them. Then the person had said to tell the truth I am just really upset sad and overwhelmed because I just found out I am HIV +. The person I new had said they felt a stone in there gut and just walked away went home. then later they had said they had nightmares about sharing a smoke with someone who has HIV and that they may have caught it. So they went to doctor the doctor had said there was nothing to worry about but if you like we will test you anyway. the test came back negative . I had thought well at least one person who had been intimate with me once apon a time I know for a fact I did not pass what I have now to them. That only means they might have been lucky I may have already had the virus just lucked out and did not pass to them. They had also said they had seen this friend of there's a month or so later. They had a far away distant look to them and appeared to be walking an moving but looked vacant. while they  were describing them to me my first thought was anti depressants and psych meds. They at the same time I was thinking that had said they had thought the person was on heroin and who needs people like that in there lives right. I just thought wow two people thinking about the same situation and drawing opposite conclusions . HIV has led to me being less judgmental and open minded but also not very forgiving of those who do assume the worst of others then try to tell me what my problems are while ignoring how rude they themselves are . this has happened to me on may action were people have said I was disrespectful when I did not cower in fear at there condescending tone and patronizing manor. They had become convinced that I was trying to be and was rude and disrespectful for not yielding to there superior will and justifiable views ( at least in there mind they were ) even if truth like beauty is subjective and in the eye of the beholder ??? truth is what the person in the place of authority wants it to be, not what it is >
Manipulation is bending the truth tactful misrepresentation is using the way you want things to sound to achieve your ends . Being manipulative and telling the truth well those two are never the same thing . To bad to many people especially those in charge or places of authority  do not can not and will not ever see the error in there own way of thinking ? those who do see it are not the ones who make high rank cause they do not get noticed most of the time .  ( just an observation on how the world works even if it is how the world works so unjustly and unfairly but that is how things are as sad as it may be.
    I have been told I am disrespectful to angry all the time and Mr. Negative . Then I take the meds and see the shrink I am afraid to leave my residence and even if I leave I am to afraid  to cross the street. People yell things in my most angriest of moods I would never think of I feel so lost.

    I guess it is like the bible school story about the old man young man and the mule sometimes no matter what you do you can not please those around you. I am not going to retell the story I am sure there are lots of people out there is you do not know the story just ask around and I am sure some one else nearby to you will know the story .

    I hope and pray some way some day just to be happy . I know with perseverance and heart filled with a song and mind filled with hope that place as unattainable as it may seem has been mine in the past and some way will be mine again if not in the real world then in at least in my dreams. To dream the imposible dream .

Maybe I should title the above a message in bottle from a person lost in sea of inhumanity ?

That song from  the radio for some reason keeps playing over and over again in my mind ( its to late to apalogize )

Thank You
All my best to you


« Last Edit: June 22, 2009, 04:00:29 AM by em »

Offline smalltown66

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Re: You are just lucky; why is that not me ?
« Reply #1 on: June 24, 2009, 05:27:38 PM »
Maybe you feel you have a negative attitude sometimes and you feel others see you that way. I think at times we all feel that way and some more than others. But I want you to know how positive your perspective on living with HIV is. Just reading your thoughts in this post tells me you are a very caring a loving person. You have lots to share, and today you touched my life. Believe me your  attitude about life can help others immensely.  I just wanted to let you know I relate to how you feel .

Sometimes I just want to exile my self to a lonely world of solitude where I don't have to deal with the ignorance and judgementalism of others. When I find myself going negative, I try to find someone less fortunate than me and help someone in a more difficult situations than I. Deny oneself to help others, it is miraculous how it make you feel yourself . It lifts you up to help others in their low times in life.

Thanks so much for sharing your feelings with us all today. Please know you have made a difference today.

Lifting the weight of the world sure is easier with others with the same goal.

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #2 on: June 24, 2009, 08:47:28 PM »
I had written about ten pages on

essay on absolute darkness

over and over thinking about how dark the solitude would be to find oneself absolutely isolated and driven so far down nothing could reach >

I burned it in my fire place to keep warm last winter cause I needed to ?

All my best to you

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #3 on: July 08, 2009, 09:58:36 PM »
Old memory about a time almost forgotten by myself

I was just reaching for a small cup to have something to drink and I found the cup I used to use to take my DDI with >

DDI  I hear every onse and a while they still prescribe it . they are large tablets that are bigger then alcaseltzer and my ID doc said the best way to take them and the most effective is too chew them up and coat them in your mouth before swallowing to help digestion of the medicine . they tasted like I heard someone on an after school specail about AIDS described the taste like shoe polish ?

never having tasted shoe polish I do not know what it tastes like . Me I used to grind the tablets in cup and ad a small amount of water and swallow very fast to aviod the taste . I had to do this twice a day every day for I think it was three years ?

Some times  I would mix apple sauce with them to make it diferent . It was still unapetising and unpleasant almost disgusting I had thought flavoring them would be a way to make taking them easier  but back then I had hope a cure would be found and then I would have a life again and it would be well worth it >

that was some were around 15 years ago ?

then there was before that AZT then after DDI there was AZT and 3tc and lots and lots of other drugs and when by chance my health would recover  Iwould be angry at life for making me suffer so and the docs would prescribe sych meds ? no matter what I do I loss ?

so now I am having a hot summers night cold drink from the cup I had spent years taking medcine from hopfully some day some time I will be toasting the life I used to know while welcoming in the new life of ecenomic and social growth that makes not only myself feel hope  faith and fullfilled;  also  everyones elses  lives as well .

all my best

I hope that one of those new vaccines shows promis for a drug free end to this viral infection of our society

were do I think I had gotten HIV

I had told my first ID doc I had thought I may have gotten HIV though the health care I had received and ofcourse being a man of medicne and thinking they ca ndo no wrong he had said that is highly unlikly even though I had known better but did not want to crush his world being how he was helping me to stay alive and helping so many others like myself.

then there was this nurse in hospital who was giving epi shots to patients to give them heart attcks becasue it turned on her boy freind who was an orderly ?

you can not make stuff like this up ?

I oculd go into detail all the places HIV could have been and could have crossed contaminated . but then you like me would become a shut in afraed to go out into the world >

that is not what I want for anyone , that is what I do for me cause I do not want anyone who finds out they have the virus to somhow some way think they caught it from me ?

even though there are so many other waysto die in this world living without have ing a life is the long slow painfull way I have chosen for myself ?

do not go down this path it is just to boring for words >

if you do find your self like me . remmber they can not take your dreams and dreaming is always therefor you to enjoy .

all my best

I recall the first time I had seen Jennifer Lopez on in living color about twenty something years ago . I had turned to my ( signficant other ) and said she is your long lost sister look what she is wearing and the way she is dancing she stands and holds herself just like you .

My wife had said that is rediculious ny parents had no other children. I had said that you know of ? she got mad and told me to stop making up stories .

I was just dreaming the way I do and I guess to some that is crime far worse than anything else >

being creative and even day dreaming  is a crime what kind of world is this we have allowed our society to become >

I could share more on my lif eand the people and places and things I have done but like when I came home form the military and my god father had said. what do you want to do with you life > I had said maybe write some meires of flights of fancy and dreams > He looked at me and said YA like anyone wants anything you have to write ? get a reel job ? I had thought ya like moching of women like you do ?

sorry must go and take care of stuff

all my best

Then again there was this time way back when I had heard this women I knew who had siad she loved this song with willie nelson and Julio Anglases to all the girls I loved before ?

maybe some day at carioce I could sing that one ??

just change some of the lyricks to make the song way more tragic >
to all the girls I loved before who came and wnet through m door >

to bad HIV came along and cut the party short ?

to all the girls I loved before <

than after it came along the best was gone and all tha was left was this empty place only my dreams could fill >

to all the gilrs I loved before?  and to all the girls I could have loved but never had the chance cause HIV and AIDS shut the door ? maybe weird all yankovick might like that one for his next album ?

to bad writting lyrics with out musical acompaniment is almost imposible ?

O well life goes on with out me ?

( just a giglio )

sorry like I had said writting music lyrics alone is not the way to go >

then again

quoting lyrics >

to dream the imposible dream >

onword and upword I go > I am I don caoyote the lord of lamancha am comming to carry you on ?

to dream the implausible dream ?

my quest to make it to the bar
no matter how crowded
no matter how far ?

the curse of the romantic

to all the girls I could have loved but only did so in my dreams
there carefull wonderious caresses filled my dreams

the nights were filled with the hopefilled care
and loving tenderness if only in my dreams >

good night and god bless

all my best to you

maybe  Ishould look up this guy I used to work with in a fire alarm factory whos I heer tell had a band that was very popular I think his name was thommy ? and aske him about this girl we both used to know named linda and how one day I had told him about linda being so lucky to win a trip to Hollywood . he had said some meen stuff I had given him a glimps into his future of a spinnig drum set and crowded autotoriums ?

not to worry it is only fiction and thommy of the who never did have a band and Linda well she might have changed her name to something else after moving to hollywood ? I do not know ?

all my best

here is a short sci phi story I had told during a group meeting atthe last psych stay I was in >

the doc had said what do you think the future holds for you >

I had said this is what Ii think our future as a planet could hold >

I 'd like to call this one second chance

want a glimpse into medicine of the near future

sci phi meets reality

I had told this one to a psych group meeting in 2005

they discharged me without any medication and sent me bill for 7,000 $ after a week stay because they had said the police brought me in ? Cause there was nothing they could charge me with ?

this older person who has lived a full life and has thought deeply about life and tried to make this world as pleasant as one person could do >

so after donating there body to science after being declared dead >

these doctors decide to do an experiment years in the making .

they take and sever the corartid   arteries and attach a blood pumping machine to keep the brain alive.

then slowly over time they remove the brain .

then they take a child born with only a brain stem they keep the child alive using a procedure developed for taking care of coma patients.

they then take the brain and place it over the brain stem and spread a thick layer of stem cells to grow into the connections between the brain and brain stem and connected the young eyes to the old brain . then make a lattes work of bone to grow into the scull over time. the old person awakes in a young body for a second chance to make the world a better place they could not have done during there first life ?

you should have seen the patients and the doctors face after telling this story . The psych doctor said  OK time to get back to reality ?

I just thought wow a man of medicine  who does not believe the future could have unlimited possibilities

I could write more about the way these people are educated and grow to become so much more then they were in there first lives and then there third and fourth and fifth living for hundreds of years each time getting a new body to keep moving foreword > no one wants stories of hope and a better future do they ?

all my best

« Last Edit: July 10, 2009, 08:36:00 AM by em »

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #4 on: July 15, 2009, 10:34:49 AM »
I had written a story a while ago about the mid eighties and being in the military on AIDSMEDS.COM

when they shifted over too poz.com that info just went away

if anyone who used to write here is still alive maybe they recall the story I had left out a large junk of it ?

I had seen all these service men go in to the sick call building and none of them came out .

When my turn came up I could hear sobbing, whimpering and crying in the back round. My immediate thought was I do not have time for this ? I did not want to be there or feel the need to be there >

SO the Doctor in charge of this exorcise in sadness and spreading of dome was a woman . the military could not send her away for having had a bad relationship that was heterosexual and bad judgment on her part . That might have lead to her being HIV+ as well ?

When she had turned to me and said what she had to say I had responded she had said with glimmer of hope in her eye dismissed. My division officer had looked at me and said what are you doing here >

I looked back and thought were else would I be ? I just looked at him and said ready to return to duty and his face turned red and I have the feeling he was not to happy about my return to duty > All I can say is to bad sometimes what they think is right is not right in the least and some times there has to be exceptions to keep the world moving in the direction it should >

Not that anyone reading this and not having read the first part has any idea what I am writing about. I am not really in the mood to rewrite the same story for a third time just feel like adding to it. if it is lost to cyberspace just like this story some day will be .

all my best

I think I may have seen this doctor years later some place else or another doctor with a similarity ?

there are only so many ways people can look that some times they look verry close to each other ?

or just having the same emotionsl state reminds me of other peopleI had met who remind me of this through there emotions ?

sorry just wanted to tell a story again even if it does not change anything it feels good to delude myself that some how some way I might be making a small diference >

all my best

My dad who was very much into crime drama stories he had subscriptions to all these magazines about reel crimes and how they were solved. About twenty years ago or there abouts  he had told me that rape prevention groups were tellling young girls if you get attacked just tell the rapest you have AIDS and he will back off ?

I am guessing they had thought that no matter how heated and agressive the situation that should cool it off . I had heard the same thing threw the grape vine about mentioning AIDS being the cold water to cool off anyone who is over exicted sexually ?

Then in a bar parking lot this young girl who was celebrating her twenty first birthday  was jumped by a man she had met breifly while inside havinf drinks. When he had tried to tear her cloths off in the parking lot she had yelled do not do this I have AIDS . He yells back great so do I .

Like no matter were you go there you are >  so no matter what you do or say things will happen and there are no one size fits all .

all I know is I do not have all the answers and the more I tried to learn the more I felt I did not know ?

I heard tell that people with HIV live on the fringes of society are out casts and unwanted. IMe personally I would rather be living like this then living in some well to do money is no object wealth is an end onto itself world were some people live entire life times never having known anything at all about what life has to offer ? ABout people and freinds and intimasy about compasion about life and living about love and loving all these things the fear of aids has prevented some from ever atempting ? now that seems to me like they have never lived at all even though they are alive they have never lived ? so comparing apples to oranges what is better or what is worse you decide for your self >

a life time spent in wealth never living or a life time spent having tried to live and failed rather living without ever having lived at all or having tried and failed equally sad and sorrow filled maybe or maybe it is subjective like everything else in this world ? subjective like beauti in the eye of the beholder ?  Some times there is no best just the illusion of not the worst ?

all my best

« Last Edit: July 16, 2009, 06:06:24 AM by em »

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #5 on: August 06, 2009, 08:49:14 PM »
I know no responses means no one wants to read what I am writting or no one wants to get me goin worse then I already am I guess  but with over 500 hits this must have been at least glanced over probably by psychiatrist wondering how crazy there HIV + patients are compared to older ones ?

A long ago lost story I had read an article about people in and around 1980 who's t-cells during blood work were below normal and what they were doing to try and remedy this >  At that time they did not know it was a virus and did not have viral load tests or the term HIV they  did not have a way to check and see if there even was a viral infection causing this illness . I had also seen an intervies on PBS with HIV + patients referred to at the time as GRIP Gay Related Immune problem I think it was or it was also called gay cancer ? But any who they had mentioned in this program that they had heard about am Asian drug that was great for the immune system called simply Q . Q was consentrated cucumber extract they used to take an IV needle and inject this stuff right into there blood to clear out whatever was making them sick . At least that was the thought and hope and desired effect . One person had said if yourtake a q shot you better have about three days to let the stuff work through your system cause it will lay you out bed ridden for entire three days and if that does not kill you or make you wish you were dead then the other stuff in your life Will seme less of a strugle and things do not look so bad after the ordeal ? remember this was around 1978 to 1982 when nothing else was available yet .

all my best

Offline Giblarry

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Re: You are just lucky; why is that not me ?
« Reply #6 on: August 07, 2009, 02:42:12 PM »

I suspect some folks might fear getting sucked into the darkness of which you speak.  And, it's an old story to most of us.  We've all been through it.  The trick is successfully getting to the other side.  Sometimes there's only a faint glimmer of light to follow.  It's a take on the old adage, where there's life there's hope. 

I believe that the good spirit is an enormously wise teacher.  It places us here, and in such circumstances, for a reason.  But, our individual destinies are realized in every moment, and it's ours to do with as we see fit for, in the next moment, our destiny is renewed.

That you pose such things, speaking openly (if rather long) of the things that haunt you, is a good-good sign.  You're dealing with your troubles whether you know it or not. 

Bless you, stay on the journey, and good luck.

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #7 on: September 08, 2009, 07:33:55 PM »
I could not think in short answers true and false on or off yes or no our data society living in base ten logic of short quick fixes with out long term goals that live in the right now and forget about down the road are doomed to keep making the same mistakes over and over and over again

what about the long hall the goal of our own lives and the life of our social ecenomic strucutre

should we not want for a children a life full of creativity and openness filled with some abstract concept like unconditional love not only for our children < also for all the children of the world >

like PT barnum once said and children of all ages > the greatest show on earth > should not life from say this moment on be the greatest show for each and every person who blesses this planet with there own unique way of thinking and living

just a thought not necererily the only one just an idea of what the world might be  with just a little nudge and  instead of  what it is

sorry to feel there is more to life then just true and false and yes or NO ?

sorry please except my apalogies and my sinseer beleive that now is the time for change

juat an opinion from some one who has lived and now only exists




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Re: You are just lucky; why is that not me ?
« Reply #8 on: September 09, 2009, 09:25:33 AM »
i think what you have written is totally the reality of being hiv + and it has been with my own experiences,that they just don't want to hear the sad ,horrible stories,so we tend to sink into that dark lonely hole which grows bigger every day

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #9 on: September 10, 2009, 10:44:45 AM »

that is so true I found others aswell want to explaine how this happend

or like the fern who in the spring releases its spors to the wind to replant its information and spread over vast areas

if you spread to far and to wide atsome piont every one starts to look likethey might be your children

like a global version of don coyote is this world i had envisioned as a child or just the way I see it right now ?

or like the mule I am sterile but my genetic material when passed through boosts other maerials strnegthening there code ?

another layer of sexual sentual identity that boosts the code making it stonger and more inteligent

ya like the wolrd needs more intelect we as a species at the moment are just coasting our true potetial

well thatis something I used to dream about and in time will again dream reel sone if some otherthings that I have been dreaming about occur with time and great effort life will grow

at least that is my hope

thank you for the short song cue

got to love what might have been


Offline em

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Re: You are just lucky; why is that not me ?
« Reply #10 on: September 23, 2009, 04:01:50 PM »
what song cue ?

somthing that grows bigger every day ?

something that has haunted me for the past twenty five years plus and having my relatives tell me how crazy I am ?? for even thinking such thoughts >

all my best

all my love to what might have been


Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: You are just lucky; why is that not me ?
« Reply #11 on: September 23, 2009, 09:16:01 PM »
what song cue ?

somthing that grows bigger every day ?


Well,... I don't know about bigger .  How about "better everyday"


Current Meds ; Viramune, Epzicom, 20mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 9/24/2017

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 9/18/2017,  Viral load remains <40
CD 4 @358 /  CD4 % @ 13

 65 years young.

Offline the trebmeister

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Re: You are just lucky; why is that not me ?
« Reply #12 on: September 23, 2009, 09:58:33 PM »

something that has haunted me for the past twenty five years plus and having my relatives tell me how crazy I am ?? for even thinking such thoughts >

all my best

all my love to what might have been



you ARE what might have been -- you ARE.  you are as real as i or anyone else.   i've always gained something, at times inexpressible, from your posts.  you see the world from your unique perspective but there is so much all of us who read your words understand and share with you. 

don't be concerned if relatives or anyone labels you "crazy" -- if you were truly crazy you would be unable to express yourself as clearly and truthfully as you do.  don't allow anyone to shut you up. 

em, you have helped me immensely many times.  although i'm just one person i think there are many others who have been helped by your words, memories, ideas, and expressions of what being a human being is like. 

Your friends may say that Iím a stranger
My face theyíll never see no more
There is but one promise thatís given
Iíll sail on Godís golden shore

Offline em

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Re: You are just lucky; why is that not me ?
« Reply #13 on: September 24, 2009, 03:44:21 PM »
thank you

I wrote someplace else around here how I just want my home back

the place I have lived and loved and felt safe untill just resently my wife has gone over the edge

she thought my thoughts were dangerious and she thought well > they have this new thing called a no contact order that makes you guilty untill you can prove your inocents the exact oposit our legal system was in theory based on ?

this is so unjust < a no contact after criminal charges are filled I can understand to prevent further injury

to file one casue you feel like it ? or because you want too to punish the other party ???

I would get a lawyer but they just look at me like I have three heads on my shoulder and say what ???

sorry I need to find a group of people who are not at an IQ level with dirt ?

the people here seem smart to bad we are not reel to each other

all my best
all my love

all my blessings

all my hope that some day some place the world is the same as the one in my dreams

filled with love understanding and compasion

instead of filled with anger contempt and hate

EM ( the one no one noticess )

Offline weasel

  • Member
  • Posts: 1,873
Re: You are just lucky; why is that not me ?
« Reply #14 on: September 24, 2009, 09:42:06 PM »
EM ,
       I read every word !

   You have a good head  :o

    It is very true that it is so easy to  become hermit  like !

    It is easier to hide than deal with  ignorant  peeps !

                 Hope you are well ,
" Live and let Live "


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