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Author Topic: Scared and Nowhere to Turn....  (Read 1628 times)

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Offline childofgod

  • Member
  • Posts: 11
Scared and Nowhere to Turn....
« on: August 27, 2013, 12:37:38 AM »
Dear POZ Members,

Today by far has been one of the most difficult days in my life. I woke up today so fatigued I couldn't even get up this morning to go to school for today was the first day back at my university. Today I disclosed my status to my best friend who supported me 100%.. I feel today was so hard because I keep thinking so much negative things about HIV that I can't see what good is coming from this, I sit and look at my friends pictures and ask GOD why me ? Why did I have to get this virus? To be honest I'm really scared. I'm scared to start treatment and I'm scared of what the long term effects would be. Being that I've heard that  early treatment of the virus helps i still wonder should I not start therapy yet. Should I avoid the brain veils that are bound to come from the medication? I'm scared shitless and I feel that no one really understands what I'm feeling. Everyone is saying ill be okay but inside I feel like ill never be the same. I never thought in a million years this would affect my life but It did. I feel that life is still going on but why do I have to suffer through this? Why am I faced with such hard choices! I ask of everyone to please write encouraging words. I'm really in need of a voice that understands.  :'( :'(

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Scared and Nowhere to Turn....
« Reply #1 on: August 27, 2013, 02:47:18 AM »
Dear POZ Members,

Today by far has been one of the most difficult days in my life. I woke up today so fatigued I couldn't even get up this morning to go to school for today was the first day back at my university. Today I disclosed my status to my best friend who supported me 100%.. I feel today was so hard because I keep thinking so much negative things about HIV that I can't see what good is coming from this, I sit and look at my friends pictures and ask GOD why me ? Why did I have to get this virus? To be honest I'm really scared. I'm scared to start treatment and I'm scared of what the long term effects would be. Being that I've heard that  early treatment of the virus helps i still wonder should I not start therapy yet. Should I avoid the brain veils that are bound to come from the medication? I'm scared shitless and I feel that no one really understands what I'm feeling. Everyone is saying ill be okay but inside I feel like ill never be the same. I never thought in a million years this would affect my life but It did. I feel that life is still going on but why do I have to suffer through this? Why am I faced with such hard choices! I ask of everyone to please write encouraging words. I'm really in need of a voice that understands.  :'( :'(

Hey guy, you have a lot on your mind tonight.

Not sure where to start, so I am going to dive right in.

There is a HUGE chance that the fatigue you are feeling is stress/depression. I mean you've only JUST been diagnosed. Starting school is tough enough - but I think you are doing the right thing by plugging back into academia and resuming your life. Otherwise, what? Hang around and look up possible doomsday scenarios on the internet? Ech.

Your life will go on. Hell, it's going on already. Living with HIV is not an event. It's a journey. Until the cure, it's a lifelong journey. But YOUR experience with HIV will absolutely NOT reflect the experiences of many of us who were diagnosed before the meds were fine-tuned (some of us were diagnosed when there were no meds at all, but I digress) and the side-effects that you read about may or may not ever pertain to you.

Yes, a lot of us who have had HIV for years suffer from "brain fog." HIV is very active in the brain, and up until about ten years ago, there weren't a lot of drugs that crossed the blood-brain barrier. And those that did carried with them some potentially potent side effects.

But that probably won't be you. Do your homework, work with your doctor, READ the Lessons sections here on potential drug regimen, and make an informed choice WITH your medical professional.

And yes, current research indicates that earlier treatment is better. Some people who are treated right at/after seroconversion actually go into sort of a "remission" even after drugs are stopped (a recent study indicated this). While this might not apply to you, what it tells us is that starting early has benefits. Not only today, but for tomorrow's therapies that might depend on a strong innate immune system, or a body whose reservoirs do not hold much virus.

It's absolutely your call, of course, but PLEASE do not let the fear of side effects scare you away from that determination. You don't hear so much about the people who take a pill (or three) a day and go on with their lives with no real impact - because they aren't going to be checking into a support group for HIV that often. For a lot of people, and the list seems to grow with every new drug release, HIV becomes a background noise most of the time.

Of course there are difficulties. Stigma, making sure you have access to insurance/meds (USA) and other things that hopefully are fading through the Affordable Care Act and the pasage of time. But right now, today, you have school. And books, and professors, and homework.

And if you need to add a pill to that, then by all means do it. A lot of people stop worrying so much when they decide to go on meds. Once they realize that it's not the Horrors of 1990, the boogeyman has no teeth.

You say that you are worried about long-term effects. Hell, ten years from now you will likely be on a totally different regimen. Maybe you take it once a week, maybe once every six months. Science is far from stagnant when it comes to HIV, and look at how far we have come in the past ten years! We didn't have a "one pill per day" option.

Now we have three.

We were still fine-tuning existing drugs, dealing with ongoing side effects like neuropathy and constant diarrhea. We were still taking huge doses of the meds that worked in order to process enough of the active ingredients to fight the virus.

Now? For most people, side effects are temporary, and vanish within weeks of starting treatment. Neuropathy is not even really on the menu anymore.

And every month the news of new formulations, new meds, new treatment strategies makes the future even brighter.

If your first regimen doesn't agree with you, you can swap it out for another. And another. All without risking resistance, if you work with your doctor.

I am not going to tell you that HIV is no big deal It most certainly is.But we have reached a point where the medicines and treatments exist to make the largest battle you ever fight with HIV an internal one, a psychological one.

And, sadly in the US, the necessity to keep access to treatment open.

But those are far from the monsters that HIV/AIDS once was. Your journey with HIV will bear scant resemblance to mine. You have a life full of possibilities and options. You might have to make more careful decisions, decisions that 21 year olds without chronic illness don't have to consider - like health benefits and insurance and job stability and stuff. And hopefully we will get to a place where that's no longer a consideration.

But when you consider what it could be, what it was, your biggest battle is going to be with yourself. To forgive yourself for being human, for perhaps just standing there and having an accident fall from the (proverbial) sky and impact your life. You have to come to a place where you realize that ALL of us, after a certain age and/or wealth of lifetime experiences, are "damaged" goods.

My 26 year old boyfriend is in the hospital tonight, suffering from complications from Crohn's Disease and his recent colostomy (that we are slowly coming to believe might not be temporary). He was crying earlier, apologizing to me (!) for being a burden, for being damaged.

But that's the thing, isn't it? Everyone has something. People lose their parents. People get cancer. People have depressive disorder. People are diabetic, or suffer from any of a huge laundry list of things that "make them damaged."

But it's everyone. It literally happens to every single person. I don't care how arrogant and beautiful and wealthy a person is, there is SOMETHING about them that they consider damage. If it's not an illness it's a past history, or great loss.

You will get through this. You will be happy again. Stupid, giddy happy. You will fall in love, and be fallen in love with. You will finish school, and make your way in the world, and you will do that with the support, help, and love of people who know you and accept you. You deserve no less. Of course, it isn't enough for ME (or anyone) to tell you that.

You have to believe it. And given time, I strongly suspect that you will.

This adjustment takes time. And you have more pressing things to contend with like school and what's for dinner tomorrow. There are some things that time is the only treatment for, and accepting this diagnosis is one of them.

I urge you to keep venting, keep posting. Keep feeling these things. And you will see that time will change you. This is not an event, remember. It's a journey.

And of course, you are not alone.



I am not going to tell
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline JungleJungle

  • Member
  • Posts: 41
Re: Scared and Nowhere to Turn....
« Reply #2 on: August 27, 2013, 10:35:46 AM »
Dear POZ Members,

Today by far has been one of the most difficult days in my life. I woke up today so fatigued I couldn't even get up this morning to go to school for today was the first day back at my university. Today I disclosed my status to my best friend who supported me 100%.. I feel today was so hard because I keep thinking so much negative things about HIV that I can't see what good is coming from this, I sit and look at my friends pictures and ask GOD why me ? Why did I have to get this virus? To be honest I'm really scared. I'm scared to start treatment and I'm scared of what the long term effects would be. Being that I've heard that  early treatment of the virus helps i still wonder should I not start therapy yet. Should I avoid the brain veils that are bound to come from the medication? I'm scared shitless and I feel that no one really understands what I'm feeling. Everyone is saying ill be okay but inside I feel like ill never be the same. I never thought in a million years this would affect my life but It did. I feel that life is still going on but why do I have to suffer through this? Why am I faced with such hard choices! I ask of everyone to please write encouraging words. I'm really in need of a voice that understands.  :'( :'(

Disclosing to your best friend was the right choice.
I also tested positive only one month ago & disclosed it to my very best friends & my Mum...and it is helping me a lot, it also reduces isolation and stigma.
Sometimes even a single word makes the difference and i believe it's very important to be surrounded with supportive people who love and care about you.
I hope you'll be fine!
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline wolfter

  • Member
  • Posts: 4,389
Re: Scared and Nowhere to Turn....
« Reply #3 on: August 27, 2013, 12:22:18 PM »
Sorry you're dealing with the emotional aspect of this virus.  Not sure how else to add to what Jk so eloquently stated.  Every person here totally and completely understands what you're dealing with. 

But it does get better.  Eventually you can get past the grief and start living the life you always wanted.  There might even be a day when the thought of HIV isn't on your mind 24/7.  My first several years with virus consumed me.  CONSUMED ME! ;)

Living with this virus for almost 30 years hasn't stopped me from accomplishing many of my goals and dreams.  I've had love, schooling, home and career.
You're only limited by self imposed limitations.

Best wishes and welcome to the forums.
Wolfie
productivity breeds content

Offline Fisher

  • Member
  • Posts: 272
Re: Scared and Nowhere to Turn....
« Reply #4 on: August 27, 2013, 07:51:30 PM »
Dear One,

Almost everyone here has felt how you are feeling right now. You are not alone. In fact, you've entered into a "grand community," filled with heart and joy and hope!

Your current feelings will pass into another stage and another stage and another stage.

Just remember that you are safe and secure and ok, and you will come out on the other end much stronger and more sincere a human being than ever before. . .

Welcome . . . with all my heart and being.
- fisher
04/14 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 Western Blot
05/83 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

Offline aaware72

  • Member
  • Posts: 224
Re: Scared and Nowhere to Turn....
« Reply #5 on: August 27, 2013, 08:02:14 PM »
Hi,

You sound like me at the start of this year.  I tested positive 01.18.13.  I had some of the very same fears and thoughts and I was scared of the unknown.  I was also very fatigued.  Now that I look back I see just how this virus was effecting me, however the good thing if I got tested and found my status changed.  Started med with in a month and by May I was UD.  I feel so much better today.  Things do get better.  I can only speak of my limited time(6 months) being on medication (Stirbild)  I have not experienced any side thus far.  The one thing that I can say is things have got better.  You are not alone!
"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Offline cicero

  • Member
  • Posts: 66
Re: Scared and Nowhere to Turn....
« Reply #6 on: September 04, 2013, 11:21:38 PM »
Hey guy, you have a lot on your mind tonight.

Not sure where to start, so I am going to dive right in.

There is a HUGE chance that the fatigue you are feeling is stress/depression. I mean you've only JUST been diagnosed. Starting school is tough enough - but I think you are doing the right thing by plugging back into academia and resuming your life. Otherwise, what? Hang around and look up possible doomsday scenarios on the internet? Ech.

Your life will go on. Hell, it's going on already. Living with HIV is not an event. It's a journey. Until the cure, it's a lifelong journey. But YOUR experience with HIV will absolutely NOT reflect the experiences of many of us who were diagnosed before the meds were fine-tuned (some of us were diagnosed when there were no meds at all, but I digress) and the side-effects that you read about may or may not ever pertain to you.

Yes, a lot of us who have had HIV for years suffer from "brain fog." HIV is very active in the brain, and up until about ten years ago, there weren't a lot of drugs that crossed the blood-brain barrier. And those that did carried with them some potentially potent side effects.

But that probably won't be you. Do your homework, work with your doctor, READ the Lessons sections here on potential drug regimen, and make an informed choice WITH your medical professional.

And yes, current research indicates that earlier treatment is better. Some people who are treated right at/after seroconversion actually go into sort of a "remission" even after drugs are stopped (a recent study indicated this). While this might not apply to you, what it tells us is that starting early has benefits. Not only today, but for tomorrow's therapies that might depend on a strong innate immune system, or a body whose reservoirs do not hold much virus.

It's absolutely your call, of course, but PLEASE do not let the fear of side effects scare you away from that determination. You don't hear so much about the people who take a pill (or three) a day and go on with their lives with no real impact - because they aren't going to be checking into a support group for HIV that often. For a lot of people, and the list seems to grow with every new drug release, HIV becomes a background noise most of the time.

Of course there are difficulties. Stigma, making sure you have access to insurance/meds (USA) and other things that hopefully are fading through the Affordable Care Act and the pasage of time. But right now, today, you have school. And books, and professors, and homework.

And if you need to add a pill to that, then by all means do it. A lot of people stop worrying so much when they decide to go on meds. Once they realize that it's not the Horrors of 1990, the boogeyman has no teeth.

You say that you are worried about long-term effects. Hell, ten years from now you will likely be on a totally different regimen. Maybe you take it once a week, maybe once every six months. Science is far from stagnant when it comes to HIV, and look at how far we have come in the past ten years! We didn't have a "one pill per day" option.

Now we have three.

We were still fine-tuning existing drugs, dealing with ongoing side effects like neuropathy and constant diarrhea. We were still taking huge doses of the meds that worked in order to process enough of the active ingredients to fight the virus.

Now? For most people, side effects are temporary, and vanish within weeks of starting treatment. Neuropathy is not even really on the menu anymore.

And every month the news of new formulations, new meds, new treatment strategies makes the future even brighter.

If your first regimen doesn't agree with you, you can swap it out for another. And another. All without risking resistance, if you work with your doctor.

I am not going to tell you that HIV is no big deal It most certainly is.But we have reached a point where the medicines and treatments exist to make the largest battle you ever fight with HIV an internal one, a psychological one.

And, sadly in the US, the necessity to keep access to treatment open.

But those are far from the monsters that HIV/AIDS once was. Your journey with HIV will bear scant resemblance to mine. You have a life full of possibilities and options. You might have to make more careful decisions, decisions that 21 year olds without chronic illness don't have to consider - like health benefits and insurance and job stability and stuff. And hopefully we will get to a place where that's no longer a consideration.

But when you consider what it could be, what it was, your biggest battle is going to be with yourself. To forgive yourself for being human, for perhaps just standing there and having an accident fall from the (proverbial) sky and impact your life. You have to come to a place where you realize that ALL of us, after a certain age and/or wealth of lifetime experiences, are "damaged" goods.

My 26 year old boyfriend is in the hospital tonight, suffering from complications from Crohn's Disease and his recent colostomy (that we are slowly coming to believe might not be temporary). He was crying earlier, apologizing to me (!) for being a burden, for being damaged.

But that's the thing, isn't it? Everyone has something. People lose their parents. People get cancer. People have depressive disorder. People are diabetic, or suffer from any of a huge laundry list of things that "make them damaged."

But it's everyone. It literally happens to every single person. I don't care how arrogant and beautiful and wealthy a person is, there is SOMETHING about them that they consider damage. If it's not an illness it's a past history, or great loss.

You will get through this. You will be happy again. Stupid, giddy happy. You will fall in love, and be fallen in love with. You will finish school, and make your way in the world, and you will do that with the support, help, and love of people who know you and accept you. You deserve no less. Of course, it isn't enough for ME (or anyone) to tell you that.

You have to believe it. And given time, I strongly suspect that you will.

This adjustment takes time. And you have more pressing things to contend with like school and what's for dinner tomorrow. There are some things that time is the only treatment for, and accepting this diagnosis is one of them.

I urge you to keep venting, keep posting. Keep feeling these things. And you will see that time will change you. This is not an event, remember. It's a journey.

And of course, you are not alone.



I am not going to tell

This was very, very helpful for me to read.  Thank you for the effort to type all of this. Like the original poster, I worry about how HIV and related medication is going to make me weak and mindless and this alleviated that, at least some. I've seen someone close to me let HIV really fuck him up psychologically. He is dead now. I will take your post to heart and focus on keeping the mental element under control, and let the meds and healthy living do the rest.

I have a very dear friend who has been a tremendous source of support to me in my short month of being HIV+.  But like the original poster, I feel that she just doesn't get it sometimes. If she sends me one more thing about God curing an HIV+ person, or telling me to "just have faith" I may lose it. That is not what I need to hear.  What I need to hear are reiterations of posts like this. 

I am looking forward to my first follow up visit with my doctor and lab work to see where I'm at now after a month of medication and ask all my questions.  Contrary to how I may come off above, as I've posted elsewhere here, I'm doing pretty well with the whole situation and I hope that childofgod will too -- even though we will "never be the same" we wouldn't anyway day to day, and this is the lot we have to work with now, it's up to us.  :)
"How could this happen to lovely me?" -Jacqueline Susann

Offline socalpoz

  • Member
  • Posts: 80
Re: Scared and Nowhere to Turn....
« Reply #7 on: September 05, 2013, 11:09:16 PM »
Childofgod,

Big hugs to {[(you)]} and as stated by everyone, we can relate to what you are going through, I was in school when I was first diagnosed. Depression, anxiety, fears are all normal feelings and if you don't have a counselor I would recommend getting one,  HIV support groups can also help. We are a large and typical dysfunctional loving family here on this forum to cheer you on. You didn't state where you are located city/state etc, someone on here might be able to recommend reliable resources for you to connect with for guidance and help.

Thinking of you, please keep us informed on how you are doing!   
Diagnosed Jan. 22, 2011
feb/11 cd4 547, cd4% 37, vl 527
mar/11 cd4 650, cd4% 37, vl 97
may/11 cd4 698, cd4% 37, vl 303
jul/11 cd4 744, cd4% 39, vl 239
aug/12 cd4 675, cd4% 39, Vl 42
Jun/13 cd4 594, cd4% 38, Vl 1860
Jul/3/13 started Stribild
Aug/13 cd4 758 cd4% 43, vl ??

Offline 2blessed

  • Member
  • Posts: 49
Re: Scared and Nowhere to Turn....
« Reply #8 on: September 06, 2013, 12:02:31 AM »
Childofgod,

Like you I am recently diagnosed(not as recently February) and I had the same fears how will this impact my quality of life? How did I allow this to happen? What about my hopes and dreams? What about love? What about seeing the next generation grow up? What will people think? How do mess work? Will the meds eff me up?

In the short time since I have been diagnosed I have realized that life truly does go on. I cannot change having the virus and thus there is no reason for me to dwell on negatives. Having this virus actually kicked me in the rear and made me start living life, in a wierd way. The meds aren't bad at all and I thought I has having brain dog but it turns out I was being paranoid I'm no more forgetful than before. Every dream you've ever wanted to accomplish is still at your fingertips. The only thing that has changed honestly is that I drink less(much less) and I pop pills(just 1). I don't know how to explain it but it just gets better and the people on this site have helped me tremendously just with kind words and encouragement. It's sorta like before you graduate high school and everyone is saying you're gonna miss your childhood days but you don't listen, you may not understand it right now but it truly does get better with time. And a couple of months from now you will be telling someone else the same thing,, unfortunately..if you ever need to talk just hit me up I'll be there for you until we're LTS's

Offline whymeetc

  • Member
  • Posts: 10
Re: Scared and Nowhere to Turn....
« Reply #9 on: September 11, 2013, 02:27:49 PM »
Hi there,

I've only been positive for a year now but I think I can give some advice...

First of all, meds aren't bad at all. I take a single pill before I go to bed and that's it. I'm on Atripla and the only side effect I get is that it makes me really sleepy. There are newer meds out now that have an even less side effect profile. I see that "the medicine is worse than the disease" stuff all over the internet, but those people are clueless.

The disease isn't bad at all either. I don't get sick more often or anything, and all those articles say I'm going to live til I'm at least 80. Other than taking a pill before bed and seeing a doctor twice a year, my life is the same. It is a very boring disease. I have ADD and if I were negative and could trade that with HIV I totally would. I'm probably going to be late for work because I'm writing this post instead of getting ready.

You can't change the past. Nobody deserves to get a disease from having sex, but you know, shit happens! Forgive yourself and just work on being the best you you can possibly be. There are lots of people who have used HIV as a "wake up call" and made their lives better than it ever was when they were negative. Or don't. Whatever you want! You have a lot of time left.
« Last Edit: September 11, 2013, 02:30:35 PM by whymeetc »
September 4, 2012

 


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