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Author Topic: Hi.. new to the group  (Read 1995 times)

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Offline undeniable

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Hi.. new to the group
« on: January 01, 2016, 12:17:37 AM »
Hello everyone!  I guess this is my intro.  I have been hiv positive for 22 years.  I really didn't know much about the disease until the last year and I still have a lot I do not know. Every time I started to look I'd just get depressed and scared so I just didn't research it.  ever.  lol

I have the usual slew of diagnosis and meds, etc.  I've had the pneumonia and the meningitis with I still actually have but is controlled with medication.  Anyway, I just wanted to say Hi.  I'm here and I'm happy to have found an active forum with non crazy long termers.    ::)
Speaking my peace to the past
I can't help but wonder, who is this wind at my back
A whisper to walk on, come on from all that

Undeniable by MAT KEARNEY

Offline BT65

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Re: Hi.. new to the group
« Reply #1 on: January 01, 2016, 05:18:25 AM »
Hello Undeniable, and welcome to our LTS'ers forum.  Now, you say you're happy to meet "non-crazy" long termers.  Well, we can be a bit crazy sometimes.  But we like it like that lol. 

I've been diagnosed 27 years, sure I was infected in '87 as that was when I was with my first husband for the last time (I'm bisexual) and he passed in '89.  Been on all the usual meds, take a lot of meds, I've been on disability since 1994 though I do work part time doing home care with developmentally disabled folk. 

You'll find a good mixed bag here.  But the friendships are precious. I actually got to go to a gathering in Memphis this year and met people I have been interacting with here for years, great friends, and they became more precious.  So, it's a great site, hope to hear more from you!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

Offline em

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  • Posts: 154
Re: Hi.. new to the group
« Reply #2 on: January 01, 2016, 08:33:10 AM »
welcome to the forums

I do not know if I can help with the non crazy part ?

welcome

EM



Offline em

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  • Posts: 154
Re: Hi.. new to the group
« Reply #3 on: January 01, 2016, 09:13:26 AM »
seems like I should maybe mention something about my HIV status had a positive HIV test in 1989 But in all likeliness may have had the bug for a lot longer do not know the when were how part of the infection but just know I had it.   

welcome

EM

Offline undeniable

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  • Posts: 17
Re: Hi.. new to the group
« Reply #4 on: January 01, 2016, 03:01:20 PM »
Thanks all!  My first husband gave me the virus.  we were trying to get pregnant and all that when he got sick.  after a year of taking care of him with aids and bipolar I found out he had know he was hiv+ for over a yr before we even met.  :-(

On a better note.. I'm a great relationship since 99 and have a 14yr old daughter and my 6 chihuahuas.. Just such a myriad of health problems for me and my daughter.  It's a lot of stress for my husband to be in charge of everything. 

I'll be around anyway.. with lots of questions etc..
Speaking my peace to the past
I can't help but wonder, who is this wind at my back
A whisper to walk on, come on from all that

Undeniable by MAT KEARNEY

Offline harleymc

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Re: Hi.. new to the group
« Reply #5 on: January 01, 2016, 07:29:31 PM »
Hi Undeniable
welcome

Offline em

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  • Posts: 154
Re: Hi.. new to the group
« Reply #6 on: January 02, 2016, 04:24:46 AM »
Dear Undeniable

Normally I refrain from making judgments of others and the burdens they create or carry.  Being how I am in the same situation you are carrying this virus given to me by someone who did not tell me they were carrying it or concerned about knowing they had it and then spreading it. Not that even may have known they were or had done this or not I still have this  burden given to me.

If he knew his status knew he was contagious.  then still had unsafe sex and  then tried to have a child. wow that is horrendous and inexcusable. 

that is a selfish inconsiderate horrible thing to do ( I had a bunch of more nasty words to place here that I forgot while trying to type the rest of this  )

  Was he in denial and convinced himself it was not true ? Maybe his actions of knowing the truth and disregarding it and the ensuing guilt  created the bipolar symptoms ? Just a thought an observation of what might be not a diagnosis or clinical opinion. just a might be ?

  at that time the only way most HIV test were given in my thought about it was  normally after the illness had started to take its toll. SO he might have been spreading the virus for the 8- 10 years total  (being how the time he spent with you and the time he might have been having sex with others ) it takes in a average value  for the virus to wear down the immune system.  Wow that is very sad indeed sorry for pointing this out and even noticing it ? But that is a good reason for more testing as prevention and testing before trying to conceive a child. Another reason for follow up to insure spreading does not  occur . the guilt alone must have been terrible for him to know he had hurt you his wife  in this way.

The policy of the health industry to not disclose someone status kind of confuses me but the privacy thing. maybe privately the will to try and live and the constitutional right to life liberty and pursuit of happiness does not include the spreading of disease. 

sorry I do not have all the answers

My deepest heart felt apology on behalf of another HIV positive man myself  I am sorry this happened to you. I know an apology does not make it better or change the facts in any way  but thought maybe it might ease some of the burden you feel to know the heart felt sorrow this knowledge has hurt us both. 

I hope the years ahead or bright and filled with cheerful joy and happiness

This is what I would have liked to have written to me from whomever gave this to me and to anyone I may have unknowingly given this nasty bug too. Then to anyone who might be carrying this burden known as HIV.
   
sorry just thought if my feet were in those shoes how would I have felt and what would I have written down to try and ease the pain of such actions.

please excuse this observation but I think to much

all my best to you

EM

Offline Theyer

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  • Posts: 2,695
  • Current ambition. Walk the Dog .
Re: Hi.. new to the group
« Reply #7 on: January 03, 2016, 09:57:45 AM »
Welcome ,welcome to this font of knowledge , experience & acceptance .

Is your daughter positive too, are you a urbanite or a country girl.

Anyway great to have you on board.

Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Wade

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Re: Hi.. new to the group
« Reply #8 on: January 03, 2016, 06:35:34 PM »
Hey undeniable ,
Welcome to the LTS s club.
Sounds Like you have a great attitude and a life to match !
A 14 year old and six little Choweenas Too !
 (Spell check wouldn't even help with that one  ....LOL)
Look forward to hearing more about you and your family   !!
Best , Wade
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline undeniable

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  • Posts: 17
Re: Hi.. new to the group
« Reply #9 on: January 03, 2016, 09:23:20 PM »
EM -  Thank you.  I cried when I read your post.  Thank you.  He was bipolar so who knows.  His family knew and didn't say anything bc he said he had told me.  3yrs and no one said a word.  Oh well .. it is not mine to understand the mind of another. 

My husband and daughter are both neg.  Yay!!  They are both type 1 diabetics though and my dd has juvenile arthritis since she was 18mos old and she has recently been diagnosed high functioning autism and if her pain levels stay up we are looking at fribromyalgia diagnosis in feb. 

I am definitely a country girl!!  lol..  sitting on about 100 acres in the middle of NC.  Next year I want a goat and hubby wants a cow.  :-)

So yes... I guess its worked out thanks to my sweet heart.  :-)
Speaking my peace to the past
I can't help but wonder, who is this wind at my back
A whisper to walk on, come on from all that

Undeniable by MAT KEARNEY

Offline em

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  • Posts: 154
Re: Hi.. new to the group
« Reply #10 on: January 03, 2016, 10:15:06 PM »
undeniable

sorry to have made you cry.

Some trivia on crying. the play a street car named desire a very sad play. when it was first performed to sold out audiences the playwright Tennessee Williams would sit in the back of theater and giggle and shake his head  because he thought it was strange and hit him as humorous,   how people would pay money to get a good cry.

some times the tears helps to clear the mind for better things.
 
I hope you all the best

EM 


Offline Theyer

  • Member
  • Posts: 2,695
  • Current ambition. Walk the Dog .
Re: Hi.. new to the group
« Reply #11 on: January 04, 2016, 06:49:27 AM »
Sorry about your daughters health problems . Your rural home sounds wonderful , though 100 a would terrify me .
I am so glad you found your partner and life has moved so far from the early years of diagnosis.
In return , I am both city ( London ) and Orkey oh so rural. Currently in London getting fit enough for summer in Orkney which is like winter in Texas , but I love it.
Feel free to ask any ? You may have .
All the best
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline em

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  • Posts: 154
Re: Hi.. new to the group
« Reply #12 on: January 06, 2016, 10:45:52 PM »
undeniable

to be honest I cried while writing it.

I thought about deleting it.

well this too I had given thought about deleting.

sorry to have gone off about this bug. I have been awful in my descriptions of the past and the way this bug  has hurt so many. I do not mean to scare newbies. I just want to let someone know I was here and let others that did not make it this far have a voice to their sufferings ? They are in my heart and memories of what had happened. Other relatives and friends that also passed away from non HIV related illnesses as well .  Just now I have to build a bridge and get over it. Life is for the living and I like the rest of us here is alive and should act that way .

Glad to hear about the good things in your life, Husband a child a home.

The Ills are hard but if life were perfect how would we know what was good with out some bad to judge it against . sad I know but all I have at this moment to write.

Life is far to precious  to let the past ruin the future.

I feel great and am going to be happy and live that way.

well at least try too

all my best

EM

Offline undeniable

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  • Posts: 17
Re: Hi.. new to the group
« Reply #13 on: January 09, 2016, 12:47:10 PM »
It's a tough topic any way you slice it.   :-\  I've had the pneumonia about 5 years ago and am now disabled from cryptococcal meningitis.  I have chronic kidney disease, hiv affected neurological disorder (hand), still have active cryptococcal, spinal degeneration, lipodystrophy, ataxia, chronic fatique, and some dementia.    and who knows what else.  ::)

I had a bad fall last week and thought I had hurt my neck...  went to doctor thurs and totally unrelated to fall.  I have an infected lymph node.  Didnt even know you could have that.. lol 

The joys of having a CD4 below 200.  But it's up alot since I was at a 5 when in the hospital with the meningitis.. 

Oh well.. just happy to talk to some one who really understands what its like sometimes.. 
Speaking my peace to the past
I can't help but wonder, who is this wind at my back
A whisper to walk on, come on from all that

Undeniable by MAT KEARNEY

Offline psJimm

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  • Hmmm.. where does what goes here appear?
    • My Facebook Profile
Re: Hi.. new to the group too
« Reply #14 on: February 20, 2016, 12:01:51 PM »
Hi, I, too, am new to this forum... going to look around, see if I can be of help (NOT the intrusive kind of help; the USEFUL kind LOL) as I've worked with my friends as a health care advocate, researcher, driver etc., giving them a different perspective re their options. 

HIV Long Term Survivors since December 29, 1989, have several unresolved issues that I am seeking a path, perhaps taken by a member of this forum, a path most suitable/reasonable for each although most of my life (a very lucky life I have lived), when I needed lemonade, somehow lemons would be available so I am comfortable waiting for that serendipitous encounter to bring out the AH-HA! of enlightenment that will banish my ignorance... 

I have met many  LTS that are thoughtful, considerate, helpful, kind volunteers that bring moments of contentment to those not surrounded by close, loving relatives.. Let me say "Thank You", on behalf of those who are unable to do so themselves, thanks so very much for your service and I will continue in my efforts to emulate the best of you..

Thank you Administrators, for allowing me to participate in this forum.
I am not easily angered nor offended so, should I do something that is contrary to the mission of this forum please don't hesitate to communicate the facts to me?

Jim Harmon
Haven't any current data re: T-cells, viral load, etc.  (I do, from 1989 to 1999ish)
I'll put a succinct synopsis in my profile if there is a place for such info?
 
Be Kind. Live Kind. Recognize Kind.
HIV: December 29, 1989
T-Cells: Zero (est)
Meds: Truvada/Kaletra (for 3 months, 1998)

Offline Iknowyou

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  • Posts: 1
Re: Hi.. new to the group
« Reply #15 on: March 02, 2016, 08:17:32 PM »
Hello everone, Iam a long time survivor was diagnosed in 1987 blessed to be alive, I have been on Meds on and off ,thought I could take a drug holiday .I was Wrong so back on my Meds ,thankful that side affects have been somewhat mild.,Anyway wanted to take the time to say hello to everyone

Brian
Brian😊

Offline harleymc

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  • Posts: 541
Re: Hi.. new to the group
« Reply #16 on: March 03, 2016, 03:30:39 AM »
Welcome Brian/Iknowyou.

Offline BT65

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Re: Hi.. new to the group
« Reply #17 on: March 03, 2016, 05:57:42 AM »
Welcome Brian.   Look forward to reading more from you!  And again, welcome. I've been diagnosed since 1989, probably infected around 1987, since that corresponds with the last time I was with my first husband-who died in '89.  We've come a long way baby!

Betty
« Last Edit: March 03, 2016, 06:06:08 AM by BT65 »
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf

http://www.aidsmeds.com/articles/Transmission_17146.shtml

Offline jm1953

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  • Posts: 295
Re: Hi.. new to the group
« Reply #18 on: March 19, 2016, 11:33:05 PM »
Haven't been on the forum much lately.  Would like to welcome all the new members to the forum.  This is a great place to get everything off your chest, and get support and validation from members in the same situation.  Plus learn what is working for other members which might work for you.

Welcome!
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

 


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