Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 20, 2014, 09:09:04 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 650038
  • Total Topics: 49618
  • Online Today: 168
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: under 3 weeks Positive and confused and alone  (Read 6150 times)

0 Members and 1 Guest are viewing this topic.

Offline findingaway

  • Member
  • Posts: 22
under 3 weeks Positive and confused and alone
« on: May 10, 2010, 11:35:20 PM »
I recently found out I am positive. To be specific on April 21st at 3:16pm, I know the time because I looked at my watch before I went into the room to get the news. I don't think I will ever forget that time and place. I couldn't believe it when it happened. I couldn't even cry, talk or anything. It actually didn't hit me fully until I got home. Since than I feel like my moods switch every moment. I am living in a city where I know few people. I moved around a lot in a year, so my family is around 3,000 miles away, my friends are all over. And the few I have here, well they are great but its a lot to take on from someone that they have only known for 7 months.
I just feel overwhelmed 75% of the time and the other time I am just here. I dated someone while I was negative that was positive for a year and a half. I did not catch the virus from this person, it happened 8 months after. Can't believe, how could I have stayed neg for so long and than wham, it changes. And now I am left alone dealing with. I do have my family, I told them the day after when I drove from Texas to Michigan. But there is a difference between talking to them on the phone and being here alone the rest of the 23 hours of the day.
I feel alone and I constantly think I am going to end up alone. I had met a great guy when this all happened, and when I told him what had happened, he said initially that it didn't make a difference, and that he was still happy we had met and that he had thought of me every day. He kept talking to me the entire drive north (a day and half) but than when I got back to Texas, he was gone. I only heard from him here and there. And now its more awkward than anything. And he helped me so much at first, but now I just feel like this disease is defining me. I don't want to give up on life, but I also don't want to go through everything on my own. And i am afraid of the meds and the side effects and becoming whatever. I don't know maybe its vain, but still scary. And I found out today Meds will have to be started soon as i got my first blood tests back and I have a 365 TCell and 116,000 viral load. This scares the hell out of me too, as I thought I would have so much better since I don't think I have had this long, as I tested negative in Sept, Jan, and March. And to be honest I don't know even what this all means. And I keep looking at the drugs and I don't know what they mean. And I am sscared I won't be able to afford them as I have been told I don't qualify for assistance with some programs because I make too much money. Never thought I would hear that. But my debt is so large I don't have hardly anything, since my ex basically cleared me out.
I would take any comments on this, i just need to understand and start feeling normal, if that ever comes again, as it didn't seem to with my ex, who just decided to sleep around alot, drink and do drugs

Offline WillyWump

  • Member
  • Posts: 7,277
Re: under 3 weeks Positive and confused and alone
« Reply #1 on: May 10, 2010, 11:55:00 PM »
HEy Finding,

Welcome, I'm glad you're here, but I'm sorry there's a need for you to be here.

I know you feel alone right now, but you're not alone, you have many friends here.

You were just diagnosed, so I know you are overwhelmed. I was too. But I can tell you unequivacally that it DOES get better.

Your numbers are not catastrophic so dont let that get you down. The meds are amazing and act fairly quickly at getting your VL down (click on my profile for one example of many). Your gonna be just fine! But for right now jsut take it one day at a time.

You stated you dont qualify for assistance, are you referring to ADAP? You need to get in touch with a Caseworker at your local ASO. They can be very helpful in directing you to all possibilities.

I'm a fellow Texan (San Antonio), if you need a Texan to talk to feel free to Pm me.

Hugs
-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline pozniceguy

  • Member
  • Posts: 1,186
  • Niceguy Dallas
Re: under 3 weeks Positive and confused and alone
« Reply #2 on: May 11, 2010, 12:24:54 AM »
Hello  welcome to some of the best support and information around.   check your PM for a msg i sent you...I am in the Dallas area..

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline MarkB

  • Member
  • Posts: 292
Re: under 3 weeks Positive and confused and alone
« Reply #3 on: May 11, 2010, 06:22:22 AM »
Hi findingaway

Glad you have found us, though as WillyWump said, sorry that there is a need for you to be here. I guess most if not all of us can resonate with what you said about the shock of finding out about your diagnosis, the mood swings, and just feeling overwhelmed. But you are not alone, and here you will be able to access some excellent information. Also, don't hesitate to ask us if there is anything in particular you need to know - or indeed if you just want to post about how you are feeling: there are very knowledgeable and wise people on this forum.

You may be having all sorts of feelings about what this is going to mean for you in the future. What you said about the guy you had been seeing suddenly no longer being there for you rang all sorts of bells with me, as pretty much the same thing happened to me when I was diagnosed. But the disease does not "define you", as you put it: you have not suddenly become just a virus; you remain who you are, with all the gifts and potential you always had. Your life is changed, certainly, but it is not ended.

I know it probably doesn't seem like that to you right now; but please believe me when I say that HIV is a manageable condition and that there is no reason why yours should not be as full a life as anyone else's.

I hope you will keep us posted on how you are doing.

Mark


Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 25,381
Re: under 3 weeks Positive and confused and alone
« Reply #4 on: May 11, 2010, 08:37:15 AM »
Hello.

We're sorry to hear about your news even though we are glad you have found your way here. Right now it's clear this news is enormous and overwhelming. That's understandable. But it won't stay that way. Gradually HIV is going to a part of your life but by no means all that your life is going to be about about.

It's going to take a bit of time to sort things out. Of particular importance is that you have a doctor who will watch your numbers and with whom you can form a good working partnership to keep you healthy. Bit by bit you are going to learn whatever you need to do to keep yourself healthy. And yes, that can be done. I promise you.

The fellow you were seeing -- well, that is a disappointment. He may yet come round, but if he doesn't you are still the whole person you were before you tested positive and there are plenty of men who are going to be ok with your positive status. Give that some time as well. In all things you don't need to feel like you have to rush and find solutions.

Meanwhile you are always welcome here to talk about what's going on and to ask questions about anything that's on your mind. You will find knowledgeable and experienced members here who will be glad to give you a helping hand.

Welcome and come here as often as you want to.
Andy Velez

Offline TabooPrincess

  • Member
  • Posts: 279
Re: under 3 weeks Positive and confused and alone
« Reply #5 on: May 11, 2010, 04:37:55 PM »
I remember the exact time and date too of my diagnosis.  I now use those numbers on the lotto every week as I reckon there must be some good to come out of it!  Give it a try too :-)
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline mancguy

  • Member
  • Posts: 29
Re: under 3 weeks Positive and confused and alone
« Reply #6 on: May 11, 2010, 04:54:14 PM »
Hi

For what it's worth I was diagnosed in Nov 09 so I know exactly how you feel. The people on here are fantastic, they have a wealth of knowledge and compassion. My advice is to spend some time reading past posts on this forum, it certainly was a massive help to me and gave me so much reassurance. Use the forum to ask any questions you have, you won't get better information and advice anywhere else.

All the very best.

mancguy

Offline DDGB

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #7 on: May 12, 2010, 10:49:58 AM »
Hello there
I tested poz on 17 March - and I was devastated! My counts looked really bad, i had PCP and i thought 'oh well, this is it, my life is over'. Since i started my meds, everything is looking rosy - and altho i havent told too many ppl (in fact, only two) - i'm coping with it - and this site has helped a helluva lot.  Dont lose faith or hope - all you have is a chronic condition - it's not a death sentence and as long as you stay healthy (and yes, that is up to you!) you'll be absolutely fine. You're no diff than someone with say a heart condition or diabetes - in fact, i sometimes think we're better off. I have a friend who cant walk - am i really worse off than him? ALL THE BEST

Offline Hellraiser

  • Member
  • Posts: 4,143
  • Semi-misanthropic
Re: under 3 weeks Positive and confused and alone
« Reply #8 on: May 12, 2010, 10:55:04 AM »
You are not alone as long as you are here.  We are all from vastly differing walks of life and will gladly help you in any way that we can.  If you need anything we're constantly on here...no I mean it constantly.  Okay that might just be me.

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: under 3 weeks Positive and confused and alone
« Reply #9 on: May 12, 2010, 11:26:51 AM »
Hello there
You're no diff than someone with say a heart condition or diabetes - in fact, i sometimes think we're better off. I have a friend who cant walk - am i really worse off than him? ALL THE BEST

It is not the same. People who has heart condition / diabetes / cancer can tell the whole world they are ill. But HIV is different, it's infectious and it has a stigma. It's an STD for most cases in developed countries. Can you really tell the whole world that you have HIV?

We all know how tough the fact is -- most neg people don't want to date poz, a lot of countries don't issue work visas to HIV+, etc

I want to be strong but I feel so weak when I'm facing the truth...


Offline Hellraiser

  • Member
  • Posts: 4,143
  • Semi-misanthropic
Re: under 3 weeks Positive and confused and alone
« Reply #10 on: May 12, 2010, 11:32:47 AM »
It is not the same. People who has heart condition / diabetes / cancer can tell the whole world they are ill. But HIV is different, it's infectious and it has a stigma. It's an STD for most cases in developed countries. Can you really tell the whole world that you have HIV?

We all know how tough the fact is -- most neg people don't want to date poz, a lot of countries don't issue work visas to HIV+, etc

I want to be strong but I feel so weak when I'm facing the truth...



I'm made of sterner stuff than this.  While it's true I don't disclose to people who don't need to know, I'm very upfront in telling people who have reason to know that I'm positive.  I don't advertise, but if someone's reaction to my status is negative, honestly they're not worth my (or your) time.  I don't mind educating anyone, but it's just another form of bigotry on their part.  Pre-diagnosis I would fool around with positive guys with no qualms and I expect the same from others now that I am positive.  I promise you the head I gave and the kissing had nothing to do with my own infection.  It's up to us to dispel the myth of any sort of "ease of infection" and be educated on the different facets of our illness.  Don't let this virus change you or it's already won.

Online leatherman

  • Member
  • Posts: 6,327
  • Google and HIV meds are Your Friends
Re: under 3 weeks Positive and confused and alone
« Reply #11 on: May 12, 2010, 11:46:11 AM »
Can you really tell the whole world that you have HIV?
I've never kept it hidden. ;) I mean I don't go around screaming "I'm poz"; :D but I've always believed if someone has the balls to ask, I can surely reply truthfully, about whatever - including the HIV. sure I've encountered some stigma, but I can get that, living down here in SC, from just being out about being gay too.  ::) :D I've always taken the tack that "if you ain't paying my bills, i could care less what you think of me or how you want me to behave in public".  ;) My personal belief is that being ashamed of it only reinforces the stigma. sure it take balls to be out about being gay and to be out about being poz; but it's just another one of hundreds of damn diseases on the planet and I've got no reason to be ashamed of being human and having a disease. ;)

of course, your mileage may vary. :D
leatherman (aka mIkIE)


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

Offline Billy B

  • Member
  • Posts: 374
Re: under 3 weeks Positive and confused and alone
« Reply #12 on: May 12, 2010, 12:46:30 PM »
Welcome and sorry that this is not a forum for lottery winners, but it is what it is. I went a very long time until I had to start meds and truthfully I am relieved I did. The veterans on here can will tell you that the old drugs were hell on the body but the newer ones are so much better. I consume three pills a day and work full time at very demanding job.
Please don't let this define you!
Peace,
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline findingaway

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #13 on: May 12, 2010, 05:45:55 PM »
I appreciate everyone's response. I am going through this everyday, and its been taking me a lot to respond. There are some things that have been mentioned, such as the PCP comment. No idea what that stands for unless your talking about the drug.
I don't know what kind of meds to take out there or how you know what ones I should be looking at. I am pretty concerned with the cost and the side effects, can you still work when you start them?
I have been trying to be strong for my family, but sometimes I am just lying to them. I am telling them I am fine and I have a good frame of mind, than I hang up the phone and break down.
With the comments about dating, see I dont know what to think. I know that I dated someone that was HIV positive when I was negative for quite a while, so you would think I would be more understanding about everything, but damn is it different. And while I dated someone Poz really I wonder if I am the abnormal one. Its not that I need to be in a relationship right now, but I do wonder about the future. And do you just only date other pos people and how does that work out. I know lots do because it makes them more comfortable I suppose, but how do you find someone that is without saying hey are you poz cause I am. Damn I don't know.
Mostly right now I am scared I am not going to respond to meds, I have been having nightmares about it for the past three days. Its not that I am scared to die, I am scared to not live my life. I haven't done so much and I want to do. I am done waiting but I am afraid of all this limiting me.

Offline findingaway

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #14 on: May 12, 2010, 05:49:57 PM »
And with telling people, I have told the most important people in my life. And I talked to anyone I was with over the past 6 months because I thought it was the right thing to do. I am just scared to be gossipped about now. But I am afraid when I am out to talk to anyone, I get hit on and all that, but I am really too afraid to say anything back. Because I don't want to hurt anyone, that is my biggest fear. But I also don't want to feel like I can never speak again either, for fear of rejection based on HIV or persecution

Offline Hellraiser

  • Member
  • Posts: 4,143
  • Semi-misanthropic
Re: under 3 weeks Positive and confused and alone
« Reply #15 on: May 12, 2010, 06:04:02 PM »
PCP is a form of pneumonia that only occurs in people who have severely compromised immune systems.  Normally your body is more than capable of fending off the microbe responsible for causing it.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: under 3 weeks Positive and confused and alone
« Reply #16 on: May 12, 2010, 06:09:06 PM »
There's a lot to get a handle on when you are first diagnosed.  Have you found the lessons on this site yet?  http://www.aidsmeds.com/articles/Introduction_4702.shtml  .  There's a lot of distilled wisdom on how and when to disclose,  when to start meds and what to take...They are laid out in an easy to read manner and can help find your way around what probably feels to be pretty alien terrain.

Best
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline DDGB

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #17 on: May 13, 2010, 06:42:06 AM »
Dear WhySoUnfair
I didnt mean it's the same in terms of telling ppl about it - i just meant it for your benefit. Yes, it is a stigma. And YES, it is unfair. I got it from my ex husband who was actually gay and cheated on me. Life is a complete bitch sometimes, that's true. But you know what? There's nothing you can do about ur status. All you CAN do is keep your body and your mind healthy. And you CAN TELL LOTS OF PPL - on this forum!! Maybe not all your friends etc, but remember: ppl are only judgemental becoz they are uninformed. I'm seeing a guy, we've been together for over a year and decided to not have sex until we get married (thank God for that...) - and his mom (only him and his mom knows about my status) suggested we BREAK UP - mainly coz she was convinced i only had 10 years to live and that i could infect hiim just by touching him. Now that she knows all the facts, she is loving, caring and supportive, and so is he. Ppl will just need time and information and they wont reject you - if they love you i can almost PROMISE you they'll support you.  And just look at what Obama did for the US - lifting the stupid ban on HIV ppl entering the country.
RE the drug choices: have you been referred to a clinic /HIV specialist? They'll help you to make the right decision. HIV drugs are available free of charge from some clinics  - find out about that.
RE working when you start the drugs: i was booked off for a month, but only stayed home for a week coz i started feeling so darn healthy i didnt see the point! So yes, if the side effects are manageable (and they are...for every effect there's help. 
You say you feel weak when you're facing the truth, but my friend, the truth is: YOU ARE FINE!!! You will be fine.  It's not a death sentence anymore - ppl give birth to healthy babies, have wonderful relationships and die of old age altho they are HIV positve, all it is is a pain in the butt coz you must take meds:))) and i say this jokingly and lovingly..  Are you religious at all?

Offline DDGB

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #18 on: May 13, 2010, 07:03:54 AM »
By the way, i had PCP - that's how i found out i was poz. My experience with it: lost a good couple of kg's, had a cough for MONTHS - started off as in the mornings only (I quit smoking, thinking that was the cause....) and later on i literally cudnt speak without coughing ALL THE TIME. couldnt walk 3 steps without gasping for air. Very dry cough, almost never any phlem. Your lungs (on xray) will appear white instead of the normal black. It's like having double pneumonia. Oh and its normally comibined with horrible night sweats. Thinking back now, i actually cnt believe it took like 4 doctors to put 2 and 2 together...

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: under 3 weeks Positive and confused and alone
« Reply #19 on: May 13, 2010, 10:35:02 AM »

 And I am sscared I won't be able to afford them as I have been told I don't qualify for assistance with some programs because I make too much money. Never thought I would hear that. But my debt is so large I don't have hardly anything, since my ex basically cleared me out.


Even if you were qualified, there are still long waiting lists in many states.
Let's say the meds cost $2,500 per month (I get the info from some commercials) and you will live a "normal" lifespan for another 50 years.
$2,500*12*50= $1,500,000 -- go to Trump Tower on 5th Avenue and choose a 3br apartment!
it's so heartbreaking by just thinking of all this shit!!!

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: under 3 weeks Positive and confused and alone
« Reply #20 on: May 13, 2010, 10:46:27 AM »
 
You say you feel weak when you're facing the truth, but my friend, the truth is: YOU ARE FINE!!! You will be fine.  It's not a death sentence anymore - ppl give birth to healthy babies, have wonderful relationships and die of old age altho they are HIV positve, all it is is a pain in the butt coz you must take meds:))) and i say this jokingly and lovingly..  Are you religious at all?

I know your pain! I know it's not only from the infection but also from the betrayal.
does it help if I were religious?

Offline elf

  • Member
  • Posts: 617
Re: under 3 weeks Positive and confused and alone
« Reply #21 on: May 13, 2010, 08:25:21 PM »
It is not the same. People who has heart condition / diabetes / cancer can tell the whole world they are ill. But HIV is different, it's infectious and it has a stigma. It's an STD for most cases in developed countries. Can you really tell the whole world that you have HIV?

We all know how tough the fact is -- most neg people don't want to date poz, a lot of countries don't issue work visas to HIV+, etc

I want to be strong but I feel so weak when I'm facing the truth...


The scariest thing is that other people want us to die (some would even euthanize us since ''too much money is spent on HIV medication that cannot cure the disease''). No matter how many times you say ''with cd4 cells in normal range you can live almost full lifespan'' they will reply: ''no, you're gonna die in 10 years''.

General public is ignorant.
And you cannot teach them anything, it's easier to teach a parrot how to speak French.  :-\
« Last Edit: May 13, 2010, 08:30:45 PM by elf »

Offline findingaway

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #22 on: May 14, 2010, 05:20:35 AM »
Ok I don't live in a state with a waiting list on meds but what is the usual cost you are looking at per month? I do have insurance, but not sure what co pay is or anything and recently got a new job so I am switching carriers. I haven't seen any commercial with saying I am going to be paying $2500 but maybe I am wrong

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: under 3 weeks Positive and confused and alone
« Reply #23 on: May 14, 2010, 06:10:30 AM »
Ok I don't live in a state with a waiting list on meds but what is the usual cost you are looking at per month? I do have insurance, but not sure what co pay is or anything and recently got a new job so I am switching carriers. I haven't seen any commercial with saying I am going to be paying $2500 but maybe I am wrong

It's called "wrap it up" by johnny hazard and chi chi larue.

Offline ebivjde

  • New Member
  • Posts: 1
Re: under 3 weeks Positive and confused and alone
« Reply #24 on: May 14, 2010, 05:02:22 PM »
Hi, my name is Clay. I just wanted you to know that you are not alone. A lot of us share this same illness. We will be here for you. You must go out and find a clinic in your area that offer the meds on a sliding fee scale. That way you will qualify to receive the meds. You must take your medication and take them everyday on time. Eat right and exercise daily and you will be fine.

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: under 3 weeks Positive and confused and alone
« Reply #25 on: May 15, 2010, 12:27:59 AM »
It's called "wrap it up" by johnny hazard and chi chi larue.

http://www.youtube.com/watch?v=qgoilL7nSNc
here is the link, it says it's $25,000 per year.

Offline randym431

  • Member
  • Posts: 1,125
Re: under 3 weeks Positive and confused and alone
« Reply #26 on: May 24, 2010, 07:10:29 PM »
Most of us here had fear of the unknown's too and the obstacles ahead.
I was diagnosed in 2005 after a year of weight loss, but otherwise feeling just fine.
I had been tested too, over the years, and was pretty use to hearing "you're test came back neg".
So actually with my weight loss I was thinking more of a cancer than aids, but I got the hiv test on my own first off when deciding the route to take to look into the weight loss.

Hearing your pos, your mind wants to insert the word neg, because I was so use to hearing that.
So naturally right away I wanted to know how bad positive.
It took a few more weeks getting into a doctor, then a few more getting results, so that wait was the worst.

Flash forward to now...
Well its been almost 5 years and I really don't think of being hiv pos much.
I started epzicom and sustiva meds back then. Still on the same pills.
I became undetectable (no virus detected) pretty fast. Like on my 3rd
doctor follow up (so will you Id wager).
I gained all (and then some) of my weight back within maybe a year or so.
Today im still undetectable since meds, and my cd4 is up to 600. % way up too in normal range.

Pretty much things are back to normal. Im older than you, 57, so the little aches and pains
and that stuff I don?t know whether to blame the meds, hiv, or just getting older.
Everyone else I know at my age and not hiv pos has it a lot worse than me, seems like,
as far as to getting up there past 45 and aches and pains.

The meds from my experience are not that bad. The first 2 days were the worst but
mostly because of my own mind playing games, like a panic attack type thing,
when I suddenly realized I was worrying way way too much for nothing.
I felt a little woozy from the side effect, but only for less then a week.
That was about it as far as side effects.
And if you read the possible sides for epzicom they scare you to death.
Like having a reaction and dropping dead! Just one of the sides from epzicom.
None really from the other meds except the woozy feeling and some have
diarrhea issues. I never did.
But as to epzicom, I dont think they even give it now for first timers.

My status back then was a viral load of 500,000 and my cd4 was like 85.
So Im lucky I never had the Pneumonia. And even with my bad numbers back then,
I felt good. I just seemed to have low energy periods a lot.

So just accept this as the burden everyone must carry in life. Im mean, everyone seems to
have a burden in life. It may be medical, financial, parents, your dating situation,
work and job, seems its always something.
To me and for me, this burden Id rate as one of the lesser burdens than
most of your average guy (or girl) burdens out there.
The meds are pretty first rate. They will and do work.
And its totally true that if you stick to taking your pills as you should every day, you will live a long long normal life.
Someday youll buy your first house. Find that special guy. Maybe have a gay wedding.
Pay property taxes. Gripe about high taxes, cost of food, noisy kids living next door.
Yes! All that can easily still be yours to enjoy.
In fact, so much so, that no one will really ever know you are hiv pos, except those you tell and your doctor.

I know a lot of other burdens medically that I would NOT trade hiv to have.
Like diabetes for one. My brother-in-law is my age, has diabetes, has to take shots
daily, and still has a terrible time. He lost most of his right foot in diabetes related
issues, toe by toe, then now parts of his one foot. He can hardly walk. Wears a huge
over sized shoe to keep his feet hopefully from getting worse. Has sores all over his arms.

So in the past when I felt sorry for myself and having hiv, I can always find someone
else in the family that is my age, not hiv, but has a lot worse time in life.

There is no reason you can not find someone special that will be with you, despite
you hiv status. Heck? a lot of those stud hunky guys out there are probably hiv pos
too, and been on meds for years. You can never tell.

My rule book on living with hiv would be:
1.   Get on meds.
2.   Stay and take your meds daily, never missing a dose NEVER EVER NEVER!
3.   Be nice to yourself. Eat healthy. Get your sleep. Youre # 1.
4.   Dont fret about being hiv pos so much. Just go on as usual.
5.  Many others non-hiv have life a lot worse !!!

Thats about it for most people. And dont blame or think hiv is going to
mean no love life or no love in your life. The very guy you want so bad just
might to turn out to be hiv pos too. You never know just by sight.
Take care and give em hell !!!

PS.. I hope the cost part works itself out. Get assistance where you can.
And you might need to take drastic actions, like looking into going on
disability to qualify for treatment and meds, or moving to a more health issue
friendly state. Or looking into a different job with better medical insurance.
I really dont know the options since I have always had pretty good company insurance
that pays most the bills for meds and doctor check-ups (knock on wood).

Im just telling you what I know now... And wish Id known back then in 2005.
That life is not over. And two pills a day is pretty nice given the alternatives.
I just soooo wish treatment had been around for all those other aids folks
that did not have hope. If I had a time machine, thats the first and only
thing Id do. Go back to 1980, bring a bottle of all the meds, and tell the
scientist to go at it duplicating.
« Last Edit: May 24, 2010, 07:31:43 PM by randym431 »

Offline JJ80909

  • Member
  • Posts: 21
  • April 1, 2010
Re: under 3 weeks Positive and confused and alone
« Reply #27 on: May 26, 2010, 07:43:32 PM »
Hello Findingaway,

I found out I was poz on April 1st, this year.  I've been through and am still going through the emotions.  I found this board to be a great source of comfort, and I joined a support group locally. I am sure there is one in Dallas -- find it and make contact with them.  They are a tremendous resource to use.  If I Goggled correctly,

Resource Center Dallas - Main office, Administration office
John Thomas Gay & Lesbian Community Center offices
2701 Reagan Street (at Brown)
Dallas, TX 75219
Phone: 214-528-0144
Fax: 214-522-4604
Toll Free: 1-866-657-AIDS (866-657-2437)

I will be starting meds next week -- my CD4 count is 190, my VL is 217,455.  My doc is waiting on the genome test results before determining which meds to start on.  She did have me start a med called Bactrim, to prevent pneumocystis carinii pneumonia (PCP) -- normal protocol for a CD4 count below 200.  The genome test is to see if my strain of HIV is resistant to some meds -- I see her next week; by then the genome test results will be in.  I am anxious about it, but it is coming.  I have insurance so I am not worried about the cost, yet.  But it is in the back of my mind.

You will be fine -- everyone I've talked to, and everything I've read has reassured me of that.  And, I believe it.  It still doesn't take the stigma away, that is something I need to learn to accept and live with, as you will.

I am struggling with the dating portion.  There  is a guy who is interested in me, but I am not ready to start anything until I start meds, and can deal with that part.  I've met some other poz guys from the support group, but that is still new to me.  My case manager there told me, amongst many things, to not dwell on this, follow the doc's advice, and to take time for myself.  I remind myself about this when my roller coaster goes downhill. 

As for telling people, other than the support group, I told my ex-wife and her partner.  On the support group note, there were several people there I knew locally, and had no idea they were positive. 

I wish you well, and welcome to this board, under these circumstances.  You have friends here.

JJ
April 1, 2010: Confirmed Poz
March 2010:  VL at 217,455
May 2010:  CD4 at 190, waiting genome testing
May 2010: Started Bactrim and Atripla
July 2010:  CD4 at 270; VL is undetectable
Nov 2010:  CD4 at 245; VL is UD
Nov 2010:  Switched from Atripla to Truvada, Prezista and Novair
Jan 2011:  CD4 at 294; VL is UD

Offline madbrain

  • Member
  • Posts: 1,208
  • No longer an active member
    • My personal site
Re: under 3 weeks Positive and confused and alone
« Reply #28 on: May 27, 2010, 04:22:37 AM »
It is not the same. People who has heart condition / diabetes / cancer can tell the whole world they are ill. But HIV is different, it's infectious and it has a stigma. It's an STD for most cases in developed countries. Can you really tell the whole world that you have HIV?

Yes, you can.
http://cbs5.com/local/hiv.poz.plates.2.814643.html

Offline findingaway

  • Member
  • Posts: 22
Re: under 3 weeks Positive and confused and alone
« Reply #29 on: May 28, 2010, 03:08:53 AM »
Hello to all of my friends and still want to thank everyone for their comments, thoughts and prayers. I am doing alright right now, I started my meds last week and they are going really well. I actually feel great. I have had little to no side effects and the side effects from HIV (swollen lymph nodes) are almost gone already! I am really happy about it and hoping at my next docs appt I will hear good news!

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.