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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 30983 times)

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Offline minatl

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #100 on: January 04, 2014, 08:04:55 PM »
I have spent my entire twenty years with HIV in Atlanta and hae managed to receive pretty adequate care, even during the slurry of misinformation that comprised the late 90s and early 00's. Might I ask where you are getting care?

jkinatl2--Wondering where you get care in Atlanta?  Several of us Atlantans here, and I'm new to town and newly diagnosed.  Not too crazy with my care so far....
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Battle4Hope

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #101 on: January 18, 2014, 11:51:31 AM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #102 on: January 18, 2014, 11:56:18 AM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

Maybe they can make gummy antivirals to make them fun to take . Sponge Bob would never make us sad at pill time .

I think we have room to reasonably expect a once a week or month therapy in the coming years . 

Offline Battle4Hope

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #103 on: January 18, 2014, 12:48:49 PM »
haha....ya u are rite@jeff,'anti viral chewing gum', LOL ;D....hey,thanx huh,u blew my worries for time being........lets hope for sum innovative medication !!!!!

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #104 on: January 18, 2014, 12:53:58 PM »
haha....ya u are rite@jeff,'anti viral chewing gum', LOL ;D....hey,thanx huh,u blew my worries for time being........lets hope for sum innovative medication !!!!!

I do think some better treatment options will come our way but until then a good laugh every now and then is powerful medicine as well . 

Offline leatherman

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #105 on: January 18, 2014, 01:09:12 PM »
I would be remiss to not mention something first before posting some good news, Battle. First off, many many people take daily medications. It's actually the blessing of medications. In the early 1900s people were mostly dying by 40, today the avg life span is near 80-something. A large part of that is because people (poz and neg, old and young) take daily meds and fight off death daily. ;)

Secondly, I remember the days of taking 32 pills a day to keep the HIV at bay. Now I take 5 and think it's a blessing! But news out just this year talked about upcoming meds that may be once-a-month injections or maybe even once-evert-THREE-months injections. That's pretty spectacular!

Quote
This year, we learned much about a couple of "long-acting antiretroviral" candidates in the works. Most notable among these is GSK1265744 -- which, although it may need to be injected, is being engineered so that it only has to be taken once every four weeks at the most.

Early clinical trials involving these drugs have shown promising results. Now, to be sure, it's not a guarantee they'll work out, and many months of study lie ahead before we can even begin to entertain the idea that they'll become a part of regular HIV care. But it sure is an exciting concept to consider, all the more because it may be achievable.
http://www.thebody.com/content/73500/10-moments-that-changed-hiv-care-this-year.html?getPage=5

Just keep saying to yourself that the meds (and google LOL) are your friends. Thanks to the power of positive reinforcement (saying that mantra, taking your meds, and living another day) one day you may start to really feel that way too ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline CybertronEra3

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #106 on: January 21, 2014, 03:02:13 PM »
For me it's only been almost 7 months and I feel that the biggest hurdles are my lack of motivation, the self-imposed isolation, my constant irritability that just kills any chance for intimacy and navigating my role in life. Also the stress of keeping mum on my status from family members and longtime friends. I know one day I will disclose my status but until I reach certain physical health goals and an undetectable status that will not happen any time soon. The lack of motivation is my biggest challenge. I feel once I break through the rest will be quickly resolved. Before my new status I always considered myself a very self-aware individual but recently it's hard to look at aspects of life without the flash of the word P O I N T L E S S dominating my internal narrative. I know Im just in a bit of a haze and it will pass but till then it's a mental battle coupled with the one happening in my body. I'm a self professed secular humanist, and am determined to leave this world a better place then what it was when I was birthed into it. I feel my proverbial clock ticking away when left to my own devices.  Then there's also a maddening "fuck it" mind frame that leads to a call for anarchy. Alas this cosmic struggle will be played out by my choices alone and hope I can accomplish everything I can before I check out.

Offline darryaz

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #107 on: January 21, 2014, 05:04:01 PM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

A 90-something friend of my Mom's told me once that she LOVES her pills.  She is the only person in her family who lived beyond their 50's.  She completely attributes her longevity to the PILLS she takes every day.

So in the "big picture" taking a few pills each day may not be so bad :)

Offline Joe K

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #108 on: January 23, 2014, 04:34:07 PM »
My biggest challenge is to decide what to do with my life, now that I am single.  In March, I will have lived with HIV for 30 years.  In June, I will become 60 years old.  I have lived as much of my life poz, as negative and I simply can no longer remember the feeling of not being HIV positive.  I have been involved with the HIV community, in some capacity for 28 of those 30 years.

I have lived at least two decades longer, than anyone told me I could, when I became poz and some days, I feel I am long past my expiration date.  I have battled depression all my life and combined with the damage from HIV and medications, I am in a body that is old and frail, decades before it should be so.

I no longer fear death and in some ways, will welcome it, simply to stop the hurt and heartbreak.  So many of my dreams were crushed when I became poz and while I have no regrets, I resent what has been taken from me.  Yet, I still question why I survived, when all of my friends did not?  I got to live, but I was left alone.  I was lucky, I am told, but many times I am not so sure.

HIV did not just damage me personally, it took away the only world I knew and left me to fend as a stranger in a strange land.  It killed my friends and each and every death is permanently etched upon my being.  I remain numb from the loss and feel it every day, when I look around and find myself and few others, left from those terrible times.

Just to be clear, I am doing fine and writing these words, helps me to clarify what my "real" issues happen to be, as well as sharing my experience, of which many others on these forum share.

I assume this is my "mid-life" crisis, but no flashy cars for my birthday.  Instead, I will step back and pause, to reflect on my utter good fortune in life and then figure out what I want to do for a "second act."

I do this, not only for myself, but for those I have lost, the ghosts in my mind, as I will never stop mourning their loss...  nor shed the feeling of abandonment. 

Nobody did it to me intentionally, but it still happened.

Joe

Offline Ann

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #109 on: January 24, 2014, 07:19:18 AM »
Thank you for sharing that with us, Joe. I know it wasn't easy.

((((((((Joe))))))))

Love you buddy. We're all here for you.

Ann
xxx
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #110 on: January 24, 2014, 08:08:41 AM »
Thank you for sharing that with us . Hugs .

Offline RiderMan

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #111 on: January 29, 2014, 10:07:24 AM »
Hi everyone.  Good to read this email string, insightful and therapeutic for me.  I was diagnosed fall 2012 and no meds yet. My personal challenges are the same as when I found out cuz I am not being proactive to address them:

1) Disclosure to family - I did reach out to my dad and afterwards my sister, both were supportive however have not told my mom. She would be broken and I do not want to see her depressed (she is already battling this)

2) Every day without fail I think what an idiot I was. My brother died of AIDS in the mid 90s, I remember taking him to the hospital for a strange skin rash, asked the doc to do a blood test. I saw 1st hand what someone goes through, but I still put myself in a risky situation (unreal!)

3) I have a daugther who is 5, I know that one day I will need to tell her and it really worries me.  I love her so much and I worry that she will see me differently

4) I actually reached out to the person that I contracted HIV from, she recently said she stopped meds and will go with experimental meds, she does not trust her doctor; I am pressuring her to seek a new doctor but does not appear interested. From reading many posts I only see that meds are the true solution and not detoxification, vitamins etc (but I could be wrong)

5) starting meds; I had 2 doctors evalatuate my situation and both recommended different meds, this concerned me.
08-27-2012: contracted
10-17-2012: Positive
10-17-2012: CD4 - 555  VL 7700
11-06-2012: CD4 - 595  VL 20000

Offline zach

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #112 on: January 29, 2014, 12:58:40 PM »
loneliness, nothing else has even come close. it hurts

regrets, for a period in my life when I went out of control, high risk behaviors, and now i'm paying the price

stigma, I've learned to not only live with that, but challenge people about it. but losing so many lifelong friends with little fanfare really hurts

being totally poz outed in the small town where i'm from, everyone knows. tim knows where i'm from, i'm sure he can understand that

but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story

edited to add: and falling so completely apart when I was diagnosed. even without that little tid bit, I was already under incredible stress, I had worked really hard to build a life and felt like I was right on the edge. then the AIDS thing. and I shattered and broke, and lost everything i'd achieved. now I don't know how or if I can ever put it back together again. and I feel lost
« Last Edit: January 29, 2014, 01:15:57 PM by zach »

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #113 on: January 29, 2014, 01:00:37 PM »
but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story


Ouch.
AIDS isn't for sissies.

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #114 on: January 29, 2014, 01:10:08 PM »
jkinatl2--Wondering where you get care in Atlanta?  Several of us Atlantans here, and I'm new to town and newly diagnosed.  Not too crazy with my care so far....

I am in the ATL area, and I get treatment at the Grady IDP.  Now many would gripe about this, but overall my care has been downright decent.  And I have to say that the doctor I have now KICKS ASS.  He has twice now taken the time to call me at home to check up on me.  Once when my collar bone  was broken, and now when there was a potential blip/maybe more situation going on.  He has also given me email access to contact him with questions or concerns at any point in time.  I didn't get that good of care when I was under the usual insurance frame.

Now...as for the question, I sort of share an answer with Joe:  I have zero idea what to do with my life.  That's just being honest.  Put bluntly:  I was raised in a very evangelical environment and taught to expect the end of the world long before I would ever see gray hairs.  Then despair over my personal truth versus the fantasy world I was raised in led me to essentially try to take myself out passively.  Well...long story short, I pulled through all that and have come around to being a bit more fond of myself these days.  And yet...I find myself here at 43 without a clue as to what I "want to be when I grow up".  My collection of health issues keeps me uncertain about what kind and how much work I can do, but the biggest factor is that I am facing a future I never expected to have - for two different reasons.

That's it.  That's me in all my humbling truth.
AIDS isn't for sissies.

Offline SouthSam7

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #115 on: January 29, 2014, 01:50:16 PM »
After two years in Atlanta, I moved back to Birmingham. The uninsured care in Atlanta was atrocious. I thought I could literally die so I had to leave.

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #116 on: January 29, 2014, 07:38:02 PM »
After two years in Atlanta, I moved back to Birmingham. The uninsured care in Atlanta was atrocious. I thought I could literally die so I had to leave.

Don't know how you and I managed to have such drastically different outcomes in the very same system in the very same city.

While I agree that there are significant problems with regard to how the state handles ADAP, I remain skeptical that Alabama would be some land of milk & honey in comparison.  Seriously?

AIDS isn't for sissies.

Offline hivtalian

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #117 on: February 02, 2014, 11:43:00 AM »
Joe reading your post made me really emotional.
I've jut been diagnosed, not even 2months, and I'm 40.

And reading what you said about all your friends gone made me think about how things have changed in last years and how "lucky" all the newbies like me are, living in an era when hiv is not anymore the monster it was in the past.

It's also thanks to stories like yours, that "new" people like me can hope in a better future and can jump over all the depression that comes just after the diagnosis...

I guess from what you wrote that you had a life full of love of all those friends gone, who will stay inside you, and now they're there with you helping me, and all the people like us, to go on and fight.

I've been thinking "life is gonna be a shit", "it's all gone", "game over", I?ve been also thinking of suicide not even 2 months ago, but thanks to people like you, some friends here and a great doctor I really trust on, who gave me my pills straight ahead for treating my acute infection, Im' feeling pretty good and I'm very ...positive toward my future.

My biggest challenge concerning being positive?
It's not about death now, I know we have quite a good life expectancy.
It's not about pills, I know they're and they're gonna be my best friends forever , and I'm happy to swallow.
It's about, I must confess, my sexual life. I'm still feared to have sexual intercourse and I have to fight the automatic thought "I'm poisonous".
I'm feared to figure out how to behave with my sexual partners (telling or not my status?) and to do even safe sex (oral sex without condom is a big concern, but ...thank you Ann for your great advices...!).

But all I can say is that every day is getting better, and one month ago I'd never have thought I could be so "quite good" after just few weeks.

My pills work, no acute side effects so far and values are great (cd4 922 and VL 1024, starting from cd4 716 and >500000 end of december 2013).

So thank you all, thank you Joe for sharing (go on, life's worth living every day, and I'm sure you've reached that interior melancholic smile typical of wise people which is a gift for everybody), thank you Ann, and thank you research for giving us the chance to fight, and who knows, maybe, to win, battle after battle, this war.

Offline Cenlaguy

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #118 on: February 20, 2014, 10:07:26 PM »
My biggest problem is dealing with this hiv rash that appears on my face. It's driving me crazy and idk what to do. I have been out of work for almost two weeks now. I have tried cortisone creams. Didt work. I have never had acne so this is very embarrassing. I don't even leave my house it's so bad. I went to my person doc yesterday and he have me a cortisone shot. I hope this helps. Does anyone know how I can make this go away? I just started my meds about 3 weeks ago as I was just notified I am hiv pos. I am taking stribild. My cd4 count was 314 and vl was 274,000 before starting meds. I don't go back for another lab work until next month. Someone please help if you have been through this situation. Thanks.

Offline Almost2late

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  • "The Nutcracker"
Hi Everybody,

My biggest challenge was back at the end of January when I had PCP in the ER and stayed in the hospital with this brand new (to me) diagnoses. Thought of suicide constantly back then but I also thought of my family and what that would do to them, So I kind of got over it, sought of.. Now it's a few challenges that go hand in hand, I gotta go to work, I got KS and no one at work knows about it but they kinda know something is wrong.. I just tell people to mind their own business and they get pissed. Sometimes I get up in the morning and think to myself "fuck it, I'm not going" but I still manage to go in.. I could handle taking the pills, just don't know if I can continue going to work and getting OI or cancer and not telling people.. need these fuckin CD4's up so maybe I can get on with my life! >:(
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline Almost2late

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  • "The Nutcracker"
It's almost Friday and Sunday I'm going to the AIDS walk so cheer up dude 8)
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline hope_for_a_cure

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I suppose reacting to the initial shock at diagnosis should be my 'biggest personal challenge' with regards to my HIV status.  It is not however.  The week I was diagnosed was really suppose to just be a trip down to see my mom and attend her 80th birthday party.  The problem was that I was so sick upon arrival that I was not able to do much more than stay in bed.  A quick trip to a doctor here landed me in the hospital for tests... no need to go into details as they are not germane to where I am heading with this.  I found out I had full blow AIDS.

OK... the first big challenge for me once I was able to breath w/o my oxygen concentrator again would really be the adjustment to this whole new lifestyle.  Additionally, the stress related to obtaining health care and meds on top of my relocation to SC proved to be a challenge.  My period of financial hardship ended up being a double edged sword actually.  I immediately qualified for ATRIPLA's Patient Assistance Program and MIAP status which took care of the $44,000.00 hospital room charge.  You have to be pretty destitute for that to happen and I was in that category at the time.  On the other hand I had to sell my home in Maryland (very very little profit) and close out that part of my life for good.   

The soul searching that I went through and redefinition period changed me the most.  My initial application for Social Security Disability was approved and thank goodness I had some good employment in my past that allows me a decent monthly amount.  Challenges such as rebuilding a life while living with family, starting over and regaining financial security from nothing, trying to get my 'effin' CD4 count to stay above 200 would be my biggest challenge actually.  I am basically pretty upbeat and the whole AIDS thing and now Cancer (lymphoma) thing have not done me in yet. 

I miss my old lifestyle living in the home I own, dating, traveling, etc. from time to time but realize that I am needed here as a caregiver for my elderly mom who would be in assisted living otherwise.  I truly am at peace for the most part... very rare for me to get depressed and honestly I could see where folks would.  Its just not in my chemistry for some reason.  Don't get me wrong, I have my days when it seems 'heavy' but those are not frequent.  Support from friends and family in my case is amazing.  A simplified life has actually done me good now that I think about it... by that I mean... living in a small town with family and no longer being stressed over keeping up a 100+ year old house that was way too big for me to begin with. 

Sorry... don't usually vent here like this.  Good thread.  Just a bit of insight for some of you who do not know me here.  I have met many of you and consider you to be friends for life!  Hope to meet others when I can make it to an AMG again. 

Best to all!

James

Offline drewm

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At this point, 4 years into this, the biggest challenge is keeping up with the required paperwork to maintain eligibility for medication assistance etc. Not to sound smug, because I certainly don't mean to, but some days I don't even think about having AIDS. At this point in my life, it's a nuisance but little else.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline mitch777

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James and Drew,

Thanks for the posts. I can relate to them both.

Mark
32 years hiv+ (oct. 2013) with a curtsy.

Offline ratcat

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     The biggest challenge for me is the fact that I decided to pay for all of my care out of pocket, and in order to do this, I live in Thailand, where I was infected.  I miss my family and the USA but I do understand that life in the States is much more complicated and expensive and that there is little freedom there anymore.  I don't miss paying taxes, high rent and looking at the rear view mirror every 10 seconds when I'm driving.  Taking a pill every day is not a big deal, but traveling for an extended period of time would be and is difficult because It's not easy to get my hands onto more than a six month supply of meds.  So, basically I am trapped in a foreign country, working a fun but not high paying job.  HIV has forced me to plan more....and has stopped me from making any big plans!  I hope that this makes sense.   

Offline zorro62

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The loneliness. Fighting the urge to  resort to drugs and chaos to compensate.
Jan09 - tested neg
Apr 2nd 09 - tested poz
Apr 09: CD4:1178  %45   vl=350
Jul 09:  CD4:1380  %42   vl=2,900
Aug 09: CD4:987  %43  vl=2,350
Nov 09: CD4:1440 %48  vl=650
Mar 10: CD4:1030 %43  vl=880
Jun 10: CD4:565 %42 vl=3300
Sep 10: CD4:1030 %49 vl=8k
Dec 10: CD4:1059 %44 vl=38k
Mar 11: CD4:1130 %53 vl=17k
Apr 11: Started on GSK blind HIV Therapeutic Vaccine Trial
Jul 11: CD4: 908 %44 vl=29k
Oct 11: CD4: 787  %44 vl=13k
Dec 11: CD4: 1013 %41 vl=14k
Mar 12: CD4: 1003 %44 vl=17k
Jun 12: CD4: 897 %43 vl=7k
Nov 12: CD4: 800 %38 vl=12k
May 13: CD4:780 %31 vl=44k
Nov 13: CD4: 620 %31 vl=12k
Feb 14: CD4: 615 %29 vl=29k
Feb 14 (GSK trial stopped; placebo and med recipients react the same)

Offline phoenix

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deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                   
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Online Jeff G

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  • How am I doing Beren ?
deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                   

Welcome to the forum Phoenix . I think you will find many other people in the same situation as most of us have struggled with the same issues at some point .

I'm happy you decided to join us . 

Offline Theyer

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deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                 
Welcome.
Re--- expressing your thoughts. Just bash away dear heart and if you create a fire storm jump in quick say sorry and blame it on getting the dosage off recreational drugs wrong coz 97.5% off regular posters have been there.

If that horrifies you then say someone slipped you a Mickey Finn 98% off regular posters have used that one 85% more than once.

Apart from the not telling how are you otherwise.
And welcome again.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

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Hi Everybody,

My biggest challenge was back at the end of January when I had PCP in the ER and stayed in the hospital with this brand new (to me) diagnoses. Thought of suicide constantly back then but I also thought of my family and what that would do to them, So I kind of got over it, sought of.. Now it's a few challenges that go hand in hand, I gotta go to work, I got KS and no one at work knows about it but they kinda know something is wrong.. I just tell people to mind their own business and they get pissed. Sometimes I get up in the morning and think to myself "fuck it, I'm not going" but I still manage to go in.. I could handle taking the pills, just don't know if I can continue going to work and getting OI or cancer and not telling people.. need these fuckin CD4's up so maybe I can get on with my life! >:(

That broken down bike is running away with it,s self. It takes time to get over what you had, its hard, it will not be helped imagining worse things. Having typed that ,I also will admit to doing it to. Trick is to then quicky celebrate the fact that I am only day nightmaring and flip it into celebrating the absense off a pesky OI.

Ain,t PCP enough or are you by nature just greedy dear heart. ?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline ARMANDO

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MY BIGGEST CHALLENGE
 that i no longer know how to live,i no longer know how to love ,i no longer know how great pain and desperation can be,i no longer want to know or be known.I ONLY EXIST BUT I NO LONGER KNOW HOW TO LIVE!!!TIME PASSES ,days turn into weeks ,weeks turn into years,i see DEATH AND DYING all around me but still i remain.I know this sounds like it came from some book but this is my reality and the i the only thing i look forward to is sleep.When i sleep ,i escape life for another day.








Offline JosephP

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deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                 

Exactly my biggest personal challenge!!! 6 months into this new "stage" of my life and I am still scared and afraid to "Let the Cat Out"... The daily meds are not a problem and I am actually almost anal about taking it...I always have one pill with me at all times and I feel like something is missing if I am not carrying one.

And the old sexual life!!! It has come a grinding halt! I just don't know what to do so it has stopped!..
We are all dealing with this. And we will live long and productive lives!!

Offline drewm

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I am reading a lot of comments about "the new normal" whatever that may be. It has dawned on me that I really barely remember my life before May of 2010 and if I choose to dwell on that date, everything becomes pre and post dx. I don't have any magic advice for how to live our lives and can only offer up what I have done.

The first year was rough but at times rewarding when the labs kept coming in showing progress. Sexual prowess eventually returned and is as good as it ever was. (I am, however, in a relationship and he is also poz). Second year became even easier, third year the same. Now, it's juggling paperwork etc.

I simply refuse to let AIDS manage my life...I manage it. My psychiatrist helps but life really has moved on.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline ARMANDO

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thats  good attitude to  have right now but i suggest you wathe the HBO SPECIAL THE NORMAL HEART.IT GIVES A VERY ACCURATE PORTRAYAL of what the early years were like when we didn,t have ANY CHOICES.WE have come a long way since then .great new drugs,great variety of doctors,agencies to help us when we no where else to turn.I remember all to well like it was just yesterday,when our social life consisted of funerals and hospital visits but now we have HOPE.

Offline Kmjohnson1314

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Thankfully I haven't had any side effects of my drugs.  I've been on Atripla for almost two months now and it's done wonders. My biggest issue is feeling like my boyfriend isn't interested in me. As in, lack of sexual activity. Like, I know it's for the better that we don't get too hot and heavy, but sometimes I convince myself it's more because of me than my diagnosis.

At first, I had a lot of troubles simply being alone. Whenever I'd get home from work I'd start getting into my head and thinking all these dooming thoughts, getting myself worked up into a sobbing frenzy. I took steps to ensure I would spend as little time alone by having friends over (then, I got a dog. That helped A LOT) or by going to a friend's house.
4/21/14 - CD4:669, VL:677
4/4/14 - Enter Atripla
2/27/14 - CD4:493, VL:~57.6k
1/23/14 - CD4:493, VL:~52.3k
1/3/14 - Diagnosed HIV+

Online Jeff G

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  • How am I doing Beren ?
Thankfully I haven't had any side effects of my drugs.  I've been on Atripla for almost two months now and it's done wonders. My biggest issue is feeling like my boyfriend isn't interested in me. As in, lack of sexual activity. Like, I know it's for the better that we don't get too hot and heavy, but sometimes I convince myself it's more because of me than my diagnosis.

At first, I had a lot of troubles simply being alone. Whenever I'd get home from work I'd start getting into my head and thinking all these dooming thoughts, getting myself worked up into a sobbing frenzy. I took steps to ensure I would spend as little time alone by having friends over (then, I got a dog. That helped A LOT) or by going to a friend's house.

Welcome to the forums . It does get better in time and coming here to give and get support may help you as well .

Please be aware that the forums are searchable so if you are comfortable having your name and face associated with this forum we are comfortable seeing it .  ;)

Offline craftypoz

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For me the most challenging thing is, as I approach 20 years living with HIV without symptoms or issues, that I grow more anxious about when things will escalate, when symptoms will appear, when it won't be possible to go a day or so without thinking about being poz. Taking meds once a day serves as my reminder, but I don't linger on the thought. But the longer I live, the more anxious I become, wondering when things will change, when symptoms will be more frequent, more visible.
HIV+ since May 1995

Offline tom g

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i battle fatigue every day so ive learned to take many breaks..it helps and i dont ever appologize for taking one..im blessed to have a neg roomate who cares and supports me..wouldnt know what id do without him..

Dan...Plz keep taking ur meds on time..it helps set an example for ALL of us. Your never alone if you dont want to be

Offline tryingtostay

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I think for me,  even with my unique scenario, it has got to be the Brain Fog.  I've been describing it to my doctor as dizziness; didn't know it was called brain fog.  It has been a daily thing for me from morning to night.  Sometimes impairing my cognitive functionality to a noticeable difference.  It gets me down as-well. 


Offline newbie92

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The biggest challenges for me are... Facing reality. Understanding that this is life now. I fear that my life will be cut short. I fear that I will not be able to attend med school any longer. I feel like I can not talk to my family because I'm afraid of judgement and criticism. I just want to feel normal.

Online initforlife

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The biggest challenges for me are  One is not hating the guy who gave this to me. Oh how I remember that day in march when he texted me and said please call me. I was at work he called told me I needed to be tested he had hiv.  I drove straight to health dept  right then got tested Then I call him back told him not to be upset we were in this together no matter what my results were. I also told him there would be no blame game as we both had sex unprotected. so both at fault. the second would be I wished I have never told a very close family member who I thought I could trust. turns out I couldn't and she told the rest of my family. Like to say you find out who your true friends are and who you can trust . anyway I'm scare to death people around me will now find out  I live in a small town and they still do not accept things or people who they think are different.   Third having family who now know about my hiv act as though they are going to catch something from me! Really read up on it. very hard to catch unless we are having sex is what I want to scream but no I just say it is not that easy to get. and I go on  and the one last thing  again   is not hating the guy who gave this to me now, since he told me it is hard for him to see or talk to me as I made him think about the hiv to much! Ha thanks to him I have to think about it every day.  the meds are not a problem to me as of right now I have other health issues before this so already on meds.  Thanks for this site. and I just wanted to add to all the one who are just finding out they have hiv.  You can over load your mind at first take and deep breath and walk away from google for a while then come back  some stuff I read at first scared me and then I saw it was dated in early years.. This site has been and continues to be my life saver!
sometimes it is best to say nothing at all. then to offend

Offline Poppy33

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Having a freakin headache everyday and trying to gain the weight back that I lost.ugh!

Offline mleatherboy

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #142 on: August 20, 2014, 01:24:03 PM »
Damn. To say reading this thread is painful is an understatement. Long before I was poz I was raised in a sense by older gay men (mentored). So I've heard stories of what it was like when AIDS first came about and people dropped dead. I watched AIDS documentaries, learned about stonewall, read one of randy shilts book, that way I was educated in HIV and the history and the impact it had on the gay community. Still though, I feel guilty that I did used to turn down poz men when I was younger. I was just scared was all. Even thought I knew better. I was also one of those idiots when I was younger to use the whole, "NEG/DDF UB2". I hate that shit so much today when I see it on websites and I realize the impact it has now. But I just typed it blindly because everyone else did just like stats and I just wanted to get it right. I think most people type it blindly anyways and think nothing of it.

Stigma is something that scares me deeply because I've read and been told stories of the stigma that people have faced. It scared me at first from even talking to people. Hell one cute guy talked to me and I just up and left because I was afraid of being turned down. I had a few bad experiences when I was first poz so I had a general assumption that neg guys don't want anything to do with poz guys. But I've been with a neg guy or two lately and it doesn't bother them so it was just a bad impression I got. It's partially a defense mechanism but when I met someone at a bar, in person, or wherever one of the first things I say is that I'm HIV positive. When I was at a bath house a few months back I told guys and no one wanted anything to do with me. I found one poz guy and he was almost afraid to touch me or do anything but I could see the desire of what he wanted to do. Just touch and contact with another. I told him I was poz and he told me he was too. He seemed so relieved and wasn't as closed up.

But I've known people like that who have been rejected by so many that they feel they are no longer desirable or that they aren't even allowed to feel human touch or contact. Dehumanized almost. I think that's part of the problem with my fear of the stigma. I've got some, but not nearly as much as older gay males who have this for years and I know the meds and acceptance are much better then they used to. I think sometimes I'm kind of living in the past and fearing that it's still like it used to be and people still don't understand and won't. But part of that is not wanting to reject or insult the memories and experiences of people who really did go through all the stigma.

It's scary sometimes now when I'm in public because when I watch people pass or talk whether it's at a gay bar, event, or in public I just can't help but wonder how many of these people are positive, how many people would accept me, who wouldn't? It's an irrational fear that I've created but it's hard to break. That and my social skills and shyness are a bit limiting to begin with.

Healthcare and meds have been extremely difficult with me either. I'm not the most reassured person or strongest. When I originally tested positive I was alone with no one to help me and I was confused at how to get on meds, how to get care, and decided that well fuck it. It's almost like I've been hiatus for a year and in a different world or reality. But now that I'm back where I grew up and with my roomate and best friend of 4 years I've had to face all the initial fears of HIV alone. And what's really hit home lately is watching the AIDS documentaries, even shows like queer as folk, movies like The Band Played On, and Dallas Buyers Club. It never quite hit home before but now that i actually have it, it just really hits home now. But that's not to say negative men are unaffected my roomate who watched one the stonewall documentaries cried when he saw the AIDS quilt because he knew people. I've heard too that survivor's guilt, which someone said something about, doesn't just apply to positive people but even negative men sometimes.

But for some reason and maybe this is stupid but I don't feel like I can talk about being positive or anything HIV related to my roommate who is neg or anyone. I have a trucker friend who's neg and every time I mention something he just kind of nods and I just can't discuss anything like that with him. So that's probably the biggest dilemna right now. Some days I just feel so exhausted or fatigued that I flat out pass out. Other times I have so much energy it's unnatural. But the tired/fatigue/energy balance is just out of control right now and leads to me staying up all night/sleeping all day, but at least I don't miss my meds anymore like I used to. That and not having a job and going to school for a job and failing that. That really hit me hard I was so damn close to having a good career and now I'm back to square one.

I feel guilty posting this because mild depression, dealing with HIV alone, and irrational fear of an aged type of stigma is mild compared to others. Hell I met someone once who showed me pictures of what he looked like when he was wasting. And I'm young and fortunate (or maybe not) that I haven't had anyone close to me pass away and I don't know that feeling or the impact it leaves. I feel guilty also because I feel like I should be doing something. I came out when I was 18 because after learning about stonewall and gay rights I felt it would be a slap in the face to NOT appreciate that we can be out now. The only thing I can think of doing right now is the AIDS Walk in october. I really wanted to do that last year but I was scared to and my schedule didn't allow me. I also have taken a liking to the biohazard symbol and have a messenger bag that has the logo smack dab on. And I take that bag everywhere with me and I have mixed feelings about it, sometimes pride, sometimes shame, guilt, and regret. I don't quite know why I have the need to "mark" myself and make it public but I feel it's all I can do right now is create public awareness. I'm not going to shout on a rooftop "I'm HIV Positive", but being young brings some rebellion so sometimes I really do want do that. I've been thinking of taking the symbol and mark further but I'm waiting for now. But I'm not out to my family, I will after my levels go to undetectable. They won't reject me or hate me just worry, and that bothers me more. Shouldn't but I hate it when people have to worry about me even though the situation I'm in and my decisions have led to it.

I will admit that when I was at AHF the first time I went there I saw Poz Magazine. And this guy on the cover he was at Pride one year and to hear him speak at the parade and be so open about being HIV positive and not being afraid was really inspiring. There was also some positive music artist too that I listened to. Maybe it's a bit early to get political or try to do something and I think that everyone has their own way of contributing. Some people volunteer, work at clinics, donate, or participate in HIV related events. I think being out and open about one's status is also a way to help but it's not something everyone can do.

A few months ago I was really just tempted to just drive off into the sunset and just let chance and fate happen and wherever I end up I end up. Just no job, no real aspirations, dreams, or goals it leaves you feeling hollow sometimes. But even though I'm jobless my roomate has been my biggest support and he's kind of what's kept me tethered to Atlanta, reality, and reason and logic. If it weren't for him I would have probably left a long time ago. I'm not sure I should really even get into the relationship aspect of HIV. I've had relationships in the past and both were poly and monogamous at first anyways. I've learned and realized that sometimes when you're in a relationship you don't get to focus on your interests and things you want to do. Partially because a majority of energy is focused on the partner. But that's the biggest advantage I can say about being single right now. I feel I have a chance to explore myself and learn about who I really am. I'd rather learn who I really am and grow into my own person then have someone take care of me or change me. I don't want someone to fix me, I want to fix myself, it's just figuring out how that's very hard at times.

I think the hardest thing I'm accepting right now is I don't really fit into any group or subculture in the gay community. I used to be part of a few. Fitting in is a painful concept really and maybe the reality of "I don't" is even harder to face but accepting that you don't brings a little relief and less stress. I was actually stress free a few weeks ago but it's come back and hit hard. I'm trying to control it because I know that's bad for your levels and CD4. Well I've probably bitched and ranted enough. Didn't mean to do it this much. Again, my problems are nowhere near as severe as people here. And I feel selfish posting this, but it's a bit of an eye opener. I feel like it's a good wake up call that maybe things aren't as bad and I just need to stand and carry on.

As for some positives and ways I've coped. Well, I used to write, alot. Blog and write stories even although I've realized lately that writing doesn't help me as much as it used to. It used to feel so therapeutic and freeing to be able to let thoughts, feelings, and words flow out and release. But it doesn't get me to sleep anymore like it used to. Whenever I feel a huge surge of emotions or guilt or feel overpowered I play my guitar that I'm learning how to play. It's odd but I feel it channels everything. The only problem is I'm sometimes playing 7-8 hours a day lately and don't really want to eat, sleep, or go out and do anything. I just want to get better and I feel at ease when I'm playing/practicing. But if it's preventing me from looking for work right now (Which I need to) turn down friends or chances to meet people or eat that's not a good thing and more of a dependent. Which it shouldn't be. If anything it will probably make me a bum.

Reading this I do sound like a train wreck. I think I need to get over my fears and insecurities and go to some social groups. Although I searched and didn't find any poz ones in my area. Pride is coming up so that's a good chance. Since writing this and probably reading this is such a headache I hope that one thing that happens is in a few months time things chance and I grow some stones and stop worrying so much what people think and have more self confidence and a job hopefully. I know it probably doesn't mean anything but I really am sorry what some people have gone through and the experiences they've had. My only hope is that the people who do help at clinics, are politically active keep on doing what they do to get rid of stigma, more support groups, and that the medicines keep getting better and someday that being HIV positive won't be that much of a big deal and people are more accepting of it. But maybe that's being a bit too ideal.

Offline Joe K

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #143 on: August 20, 2014, 04:48:05 PM »
LeatherBoy,

First, you don't sound like a "train wreck", rather you sound like someone who has taken control of your life and has a pretty realistic view of it all.  There really are no right or wrong answers to our issues, all that matters is we find something that works for us.  This leads me to...

Second, please do not ever view your own struggles, against the struggles of others.  We each have our own tolerances and abilities in dealing with adversity and when we suggest that some "suffer" more than others, it creates divisions.

All suffering is relative, it's not a contest, nor a measure of character.

Thank you for sharing your story and welcome to the forums.

Joe

Offline drewm

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #144 on: August 20, 2014, 05:16:43 PM »
Took me a while to read and absorb your post LeatherBoy. Welcome to the forums.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Online Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #145 on: August 20, 2014, 05:25:36 PM »
Welcome and thanks for sharing .

Offline Torchwood

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #146 on: September 01, 2014, 02:01:06 PM »
Telling my 3 daughters (ages 5, 5 and 6) and the social ramifications that they will have once their school friends find out. I tell very few people about my HIV status because really, it is none of their damned business. Also in that regard, quite ALOT of people know about my status as I totally disclose it when SCUBA diving, racing cars (legally) or just getting some seat time at the track.
Discovered 4/2006
VL: 1600
CD4: 1005
Started Complera 10/2011
VL: 48,500
CD4: 570
1/17/12
VL: Undetectable
CD4: 890
4/12
VL: Undetectable
CD4: 895
11/12
VL: Undetectable
CD4: 1193
4/12
VL: Undetectable
CD4: 1461
11/13
CD4: 1273
VL: Undetectable
5/14
CD4: 1788
VL: Undetectable
11/14
CD4: 1532
VL: Undetectable

Offline Torchwood

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #147 on: September 01, 2014, 02:03:15 PM »
deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                 

I waited 7 years to tell the majority of my family. A lot of them still don't know because I do not associate with them. Don't feel bad about it and welcome.
Discovered 4/2006
VL: 1600
CD4: 1005
Started Complera 10/2011
VL: 48,500
CD4: 570
1/17/12
VL: Undetectable
CD4: 890
4/12
VL: Undetectable
CD4: 895
11/12
VL: Undetectable
CD4: 1193
4/12
VL: Undetectable
CD4: 1461
11/13
CD4: 1273
VL: Undetectable
5/14
CD4: 1788
VL: Undetectable
11/14
CD4: 1532
VL: Undetectable

Offline wpa16101

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #148 on: September 04, 2014, 12:01:31 PM »
the biggest challenge I would say is not the physical part. The "social death" that I experienced when I was diagnosed was beyond any experience I could ever imagine. I have kept my status confidential. my thoughts are need to know basis. not even family knows. no one. It has isolated me totally to a point and has taken a huge toll psycologically. imagine how hard it is for a healthy normal person to find someone to share their life with. try it with hiv. find a nice lady to spend time with, date and have a relationship with. then tell them, by the way, I am hiv positive. the idea of total rejection and being outed have eliminated that for me. it is and will be a lonely life as far as I can tell at this point. one day at a time is all I can worry about

Offline Keav

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #149 on: September 07, 2014, 10:08:30 PM »
The biggest challenge? Where to begin!

For one, I need to actually accept the fact that I am HIV+. Since finding out, I have occupied my life to the fullest extent, to where I don't have any down time to think of it. I feel that if I can't come to terms with this, I can never live a normal life.

Second, while trying to come to terms, I am not sure how long it will actually take for that to happen. The person that I am currently dating, I feel as if I have totally shut him out of my life; not wanting him to touch me at all. He doesn't deserve it at all. With that being said, I often wonder if I should just end things with him, rather than sending him on an emotional rollercoaster.

Last, if I should continue to try and hunt down the person that infected me. I have been trying to inform him for almost eight months, but have been unsuccessful, as he has been rescheduling over and over again.


 


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