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Author Topic: Please Help - Looking for advice from experience  (Read 3634 times)

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Offline Delby

  • Member
  • Posts: 120
Please Help - Looking for advice from experience
« on: September 18, 2007, 10:47:41 AM »
 :'(

Dear All,

I tested positive in Oct 06. I am a 29 yr old Male and live in the UK. Since my diagnosis my life has been sent spiralling down and i am not coping very well at all. All i can think about is the end and how much i will suffer. I cant get it out of my head and it feels like the most awful of sentences hanging over me. I have become cynical about what the doctors are telling me...they say it is now manageable and i have a near to normal life expectancy. But i dont believe them..i feel like their just telling me that to make me feel better. I need to hear from people that are ACTUALLY living with it, and how it REALLY is. I have these questions going around inside my head every second of every day and i'd really be so grateful and thankful if you could help answer them for me. Its taken me nearly 7 months to pluck up the courage to join this site.

1. Is this really manageable like diabetes? My brother is Type1 diabetic and injects 4 x a day but he actively manages his illness whereas we just wait to see if our numbers go up or down?
2. Are the meds really like chemotheraphy? My brother also had cancer and went through chemo so i know too well how awful it is. If that is going to be how i feel every day, vomitting and feeling nauseous, then what is the point?
3. Once on meds, can you live a normal life or are they really deabilitating?
4. Will i get AIDs, even if i take meds? There seems to be such a fine line between HIV & AIDs?
5. Will i look disfigured and sickly looking in yrs to come?
6. I keep reading conflicting reports about life expectancy. I know knowone can predict when or how i will die, but i have read that life expectancy is anywhere from 10 yrs on meds to 34yrs. There are so many conflicting reports on it.
7. I value quality of life rather than quantity, so if i'm going to feel so sick and ill from the meds then i dont see the point in just 'surviving'?
8. Should i expect to be ill frequently and go to be hospitilised on a regular basis?

I'm tired of waking up each day to battle, to fight, to survive...i'm so tired. I miss the feeling of peace i once had and i'm afraid i will never feel it again.

I find living with such fear, uncertainty and anxiety so emotionally draining. I dont want to fight anymore and i just want to give it all up. I'm strong, but i'm not a martyr. My CD4 is currently 504, CD4 % 24, and VL 41,000.
Please help me. I'm really on the verge. I'm sorry for sounding so negative but i just want the truth.

Thanking you all


Offline ALH300

  • Member
  • Posts: 69
  • Some days ur the bug other days ur the windshield!
Re: Please Help - Looking for advice from experience
« Reply #1 on: September 18, 2007, 12:58:56 PM »
Honestly, yeah it sucks to have HIV, I used to think " How are people dumb enough to get HIV? I will never have to worry about getting it!" Well here I am with HIV! Yeah at first it's a kick in the nuts...but it really does get better. Talk to people, read, research, learn, get pissed off, cry, laugh, get drunk(once and a while), be lazy, skip class, call in sick to work...just keep doing the same things that you did before and be the same person you were before your diagnoses! We are all here for you and if it weren't for this site and some of the people on here, I would be a fucking wreck right now!!

Hang in there!!!

Poz 7-27-07 
First Labs:
07/13/2007 "Friday the 13th" What was I thinking???
314 CD4 17% 9410 VL
10/03/2007
479 CD4 18% 8220 VL
01/03/2008
493 CD4 22.5 % 5900 VL
03/18/2008
432 CD4 14.4 % 11,830 VL
05/06/2008
480 CD4 15.0% 2630 VL
07/16/2008
361 CD4 16.4% 12,830 VL
10/31/2008
362 CD4 15.5% 2500 VL
Started Atripla 11-17-2008
1/16/2009
395 CD4 20.5% undect. VL
5/05/2009
426 CD4 20.3% undect. VL
9/15/2009
422 CD4 22.2% undect. VL

Offline brooklynpoz

  • Member
  • Posts: 71
  • My Babies, Pepper (8) & Rocko (3)
Re: Please Help - Looking for advice from experience
« Reply #2 on: September 18, 2007, 01:21:35 PM »
Hi Delby ,
First, take a deep breathe, and try to relax.
Listen to your doctors, and follow their lead.

I will try to answer your questions....

#1) HIV now a days is being compared to "living with diabetes". because thanks to science, it is more manageable and understood than it was years ago.
#2) The med's are strong, and can cause side effects hat are uncomfortable. I take Kaletra & Truvada. At first, I dealt with diarrhea, but that slowly went away.
#3) I am on med's for 3 years, I take them all, every morning at 8am, and that's it. It takes me less than 1 minute per day to take the med's that are life saving. Don't you think that's worth it ?
#4) Aids is classified by doctors, if your Tcells go under 200.
#5) Each person has different physical side effects from being on med's for a long long time
#6) No One has a crystal ball on life , but, with the advances in science in the year 2007, and if you do exactly what the doctors advise yo to do, take your med's, eat right, don't do drugs, get 8 or more of sleep per day, you then put yourself in a better situation. By the way, your immune system does most of its work while you sleep, that's why you need to get plenty of sleep at night.
#7) Are you on med's? Is your quality of life bad? When I was told my choices , some side effects or.........
I picked med's.
#8) In the past 4 years for me , I caught a cold, lasted 2 days, back in 2004. I have never been in the hospital. Thanks to the med's, my doctor, and myself.
Get the picture? 

The 1st year for me, I felt the same as you, but, time, and learning made all those fears subside.

Your Tcells , %, and viral load seem descent.
Mine at first were 130, 14% and 36,000.
Now, I am over 300, 22%, and undetectable.
It takes a long time to rebuild your system, don't think it will be a quickie.

If you'd like to chat, you are welcome to email me : PEPNYC@AOL.COM

You have another family here on this site. There are many caring, knowledgeable and loving people here.

Be well, talk soon.
Diagnosed, Monday,  8/9/2004, 1ST year was ruff , now I am well adjusted .
Current Med's ; Kaletra & Truvada
Undetecable,<48 ,  531 tcells, 21%
Keeping the faith, that they will get a cure in our lifetime.
LIVE , LOVE , LAUGH

Offline NYCguy

  • Member
  • Posts: 180
Re: Please Help - Looking for advice from experience
« Reply #3 on: September 18, 2007, 02:41:10 PM »
Hi Delby,
I had pretty much the same concerns as you when I tested poz almost a year ago.  I'm assuming you are not on meds, since you are asking about them, but believe me they are NOTHING like chemotherapy.  Plus the new medications are light years ahead of the first generation ones in terms of side effects and effectiveness.  I, like Brooklynpoz, take my 3 pills once a day and briefly had the runs - like maybe 2 or 3 times.  Since then, nothing.  Of course other things could occur down the line, but most likely by the time they would, there will be better meds out there and maybe even a cure (keeping fingers crossed).

And as far as AIDS goes, it is extremely unlikely you would ever develp AIDS while on the proper meds.  All the new studies say life expectancy is close to normal for someone recently infected and with optimal care. 

So take care of yourself, do what the doc says and live your life.  My other suggestion - find a support group for newly diagnosed people like yourself, or one for positive people in general where you can meet others and see that they, like you, have made it through this emotional turmoil and are thriving and living. 
11/9/06 = #$%^&!
sometime early Dec 2006:
CD4 530 20%/VL >250,000 (&*$$%!!)
started Reyataz300mg/Norvir/Truvada 12-27-06.
1/30/07 CD4 540 30%/VL <400
4/07 CD4 600+ 33%/VL <50
6/9/07 CD4 720 37%/VL <50
10/15/07 CD4 891 (!) %? VL <50
1/2010 CD4 599 (37%) VL<50 (drop due to acute HCV)
9/2010 - looks like HCV is gone for good! And I'm finally drinking again, thank GOD
2013 - considering a switch to Stribild. but I love my Kidneys (but I hate farting all the time!)...
June 2013 - switched to Stribild.  so far so good...

Offline penguin

  • Member
  • Posts: 747
  • The Penguin Whisperer
Re: Please Help - Looking for advice from experience
« Reply #4 on: September 19, 2007, 08:01:05 AM »
Hello, from me (also in uk)  :)

You can find local support groups/counselling here

Have you talked with anyone at your clinic about how you’ve been feeling? They should be able to offer access to specialist nurses/counsellor/psychologist etc, either in-house or via referral. They may also run support groups or newly diagnosed courses.

I was diagnosed…12?13? years ago…I lose track. During that time I have biked, trekked n climbed my way round some of the remotest parts of this earth; remodelled a kitchen, tiled several bathrooms, gained (more) qualifications; worked; gone to more gigs & festivals than I remember; bought a house, sold a house, and spent many quiet (and not so quiet) times with the people I love. There have been crap days, hard times, yes - but there would have been these anyway, just of a different kind.

Life, it does continue.  To a great extent, the impact this has on your self, your every day being, is largely determined by how you respond to it. It takes time, lots of processing, a whole range of emotions…but it does settle, like water surface post stone-throwing

It is a virus. With its own unique set of challenges, yes, but it is still, just a virus. Don’t give it the power to be anything more than that.

kate

Offline Delby

  • Member
  • Posts: 120
Re: Please Help - Looking for advice from experience
« Reply #5 on: September 19, 2007, 08:37:54 AM »
Dear All,

It finally feels so good to be talking to others that are in the same situation. I cant tell you how good it feels to finally make contact with you guys. I feel inspired, encourgared, stronger and more confident. You can read so much about this illness but i wanted to hear it from people that are living with it, not the magazines, internet, doctors or media. Experience is what counts and matters. I have just heard so many horror stories regarding meds and my doctor thinks i will be on them next year so i'm starting to get very nervous.

ALH300 - Thanks for the brutally honest description of what life can be like with HIV and the good adviceI'm hanging in there !!

Brooklynpos - Thank you so much for taking the time to answer each question and to give me some clarity and help reduce some of my irrational fears. It was reasurring to read your reply and to see that your living a 'normal' life still. Thank you for inviting me to email you which of course i will do!

NYC GUY - Thank you for the warm welcome and encouraging and kind words. Its great to see that you are doing so well on the meds and just hearing that has eleviated some of my fears. I hope we can talk more.

Penguin - Great to hear from someone in the UK. I have talked to people at the clinic about how i'm feeling but they say its just a matter of time and a process of healing, which i understand. But i'm nearly a year into it and i can say with my hand on my heart i have not forgotten about my HIV for a second. I may get distracted but i never forget. I'd be really interested in hearing where you've travelled and been. Where are you from in the UK? Also, thank you for all the adive and reasurrances.

I just want to say thank you to you all and i'm so glad i joined and have met others like me. Youve given me hope...for now at least


Offline Miss Philicia

  • Member
  • Posts: 24,422
  • celebrity poster, faker & poser
Re: Please Help - Looking for advice from experience
« Reply #6 on: September 19, 2007, 10:17:04 AM »
Delby, I will second what NYC Guy and Penguin stated that, while chatting with other HIV positive people on an internet forum is all well and good, it would seem with you intense emotional state right now that you could benefit from a group support real life-type format -- please look into finding something in your area.  Either that or one-on-one counseling.

Basically you're suddenly dealing with a huge life change, and lots and lots of endless questions swirling in your head.  If you don't proactively seek to readjust the potential is there for developing depression and anxiety issues, which will potentially later interfere with proper medical care, medication adherence, etc.  Best to nip such things in the bud before they get messy I always say.

Do you live in a part of the UK where you have easy access to such support groups?  If you feel you need therapy sessions don't hesitate to ask for a referral from your HIV specialist.
"I’ve slept with enough men to know that I’m not gay"

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Re: Please Help - Looking for advice from experience
« Reply #7 on: September 19, 2007, 05:24:55 PM »
Since my diagnosis my life has been sent spiralling down and i am not coping very well at all. All i can think about is the end and how much i will suffer. I cant get it out of my head and it feels like the most awful of sentences hanging over me.
I'm tired of waking up each day to battle, to fight, to survive...i'm so tired. I miss the feeling of peace i once had and i'm afraid i will never feel it again.

Asking these kind of questions of fellow POZ will arm you with knowledge that will help you pass beyond your present troubled state of mind. Judging simply by what you have written your medical condition doesn't warrant the level of fear or pessimism that seems to plague you now. BTW: My opinions come from 16+ years with HIV. You'll come to your own conclusions, especially as you gain years with "our pesky little friend".

1. Is this really manageable like diabetes? My brother is Type1 diabetic and injects 4 x a day but he actively manages his illness whereas we just wait to see if our numbers go up or down?

HIV might be easier to live with than diabetes, at least for a number of years following seroconversion. It is probably less "manageable" in the sense that eating or not eating an apple right now might be a medical decision if I were diabetic. I am confident a week at McDonald's or a week eating fresh produce will have little effect on my HIV. I think HIV is manageable, unless/until you're incredibly ill (You would have an AIDS diagnosis). People have different opinions on this.

2. Are the meds really like chemotherapy? My brother also had cancer and went through chemo so i know too well how awful it is. If that is going to be how i feel every day, vomitting and feeling nauseous, then what is the point?

Not anywhere as awful as Chemo. I'd be happy to put up with a little nausea to live another day in relative health, and I do now, along with arthritis and other problems. Most days the meds did not make me ill in any way, past the first few weeks of adjustment (I am not on meds now).

3. Once on meds, can you live a normal life or are they really debilitating? I can do construction, go biking, lift weights, travel all night, and still think...after 16 years with HIV. Since I realize I may not always have these abilities, I enjoy them that much more.

4. Will i get AIDS, even if i take meds? There seems to be such a fine line between HIV & AIDS?

You may or may not "progress" eventually, to an AIDS diagnosis. Live a long long time and it becomes more likely I suppose. It is possible to live many years even then (A good friend has had HIV 25 years and AIDS for about 20 of those years).

Yep. A dotted line. It's really a quantitatve (i.e., CD4s under 200), not qualitative difference. It confuses more than it helps, but is of great importance for Americans who rely on this medical/legal diagnosis for governmental assistance.

5. Will i look disfigured and sickly looking in yrs to come?

You will grow balder and greyer, and if you fall into the majority you'll start buying bigger waistline pant sizes. Oh, the HIV?! Maybe. I had lipo from the meds. Most of its gone now. I paid $2k and had injections to take care of my own facial disfigurement. I have some strange skin problems I am getting checked out next week.


6. I keep reading conflicting reports about life expectancy. I know knowone can predict when or how i will die, but i have read that life expectancy is anywhere from 10 yrs on meds to 34yrs. There are so many conflicting reports on it.

Life expectancy figures are often misinterpreted, but the statistics are compelling, My experience does not conflict with the HIV mortality statistics for my country. Most of the men I knew with HIV in the 80's died in the 80's or early 90'sin a matter of years or less. Here's the good news: NONE of the men I personally know (like me) who survived that period have died between about 1992 and now! That's an awful long time, and it means they'll live longer, and most likely they weren't all instantly infected the same year back in 1982. People die of HIV every year all over the world, but you have access to quality healthcare and helpful education. You are more likely to live into old age than die young with HIV. Maybe we'll shave a few years off the end, say from 88 years down to 72 or 69. I don't know. I strongly suggest you save for your retirement, protect against heart disease, instead of sitting around and calculating your date of departure (mortality).

7. I value quality of life rather than quantity, so if i'm going to feel so sick and ill from the meds then i don't see the point in just 'surviving'?

Exactly! Quality of life trumps quantity. On the right choice of meds, you will be better than "surviving". Specific treatments, like those for Hep C or the OIs many POZ get are the worst we face. If your immune system was totally shot you'd only be alive a matter of days or weeks. Your body has remaining strength. Take good care of it.

8. Should i expect to be ill frequently and go to be hospitilised on a regular basis?

No. "Ill" is subjective. I could honestly tell you I am "ill" every day, but it would be a ridiculous overstatement (Knock on wood!) of my actual condition. I expect to learn about being really ill in the future. It's still a little abstract for me, though a few months of pneumonia a decade ago gave me "coming attractions" of serious illness. Could it happen in your future? Yes. A third of my POZ friends with an average of 20 years since seroconversion have been hospitalized once or more, while I've been lucky along with the rest. Even our sickest friends recover over and over. They go from ER to ICU to Med/Surg, then home.

HIV is not always the biggest challenge I face, and one reason I am active on this site, is to keep my "healthy denial" from becoming too entrenched. Your life is what you make of it, sick or well! You never had total control. And now you know it all too well. But soon you may see the countless possibilities afforded you now, today and tomorrow, and a great weight will be lifted.

GET WELL!

 8) -megasept
« Last Edit: September 19, 2007, 05:35:22 PM by megasept »

Offline Delby

  • Member
  • Posts: 120
Re: Please Help - Looking for advice from experience
« Reply #8 on: September 25, 2007, 08:32:58 AM »
Hi Kate,

I'm having problems accessing my inbox and wanted to reply to you privately but i cant seem to find the option on the screen to do it. So i hope this reaches you. Thank you for emailing me and telling me about the great places you have visited. You are really well travelled and have managed to see some amazing places. What memories you must have. Did you do some or all of it when your were +?

Kate, you seem really calm, peaceful and postive about things and i just wish i could learn to think like you. I am approaching my 1st yr anniversary with this thing in 2 weeks and although it has got a little better, my thoughts are still consumed by this illness every second of every waking moment. Its so tiring and i cant envisage a time when i will feel at peace. I miss that feeling i had before and dont know whether it will return. At the moment i fight a battle in my mind between pessimism and optimism every day and i find it so tiring Kate. Yes i do have moments or glimpes of hope and feeling positive about my future but they are all too quickly consumed by feelings of fear, uncertainty and dread.

How young were you when you were diagnosed Kate? How has your experience been on meds? Have you suffered really bad side effects, or for the most part can you get on with life normally?

You used a beautiful analogy of the water and the ripples settling eventually. I hope they do but at the moment i feel like i'm in the middle of a very deep ocean and i'm continually tredding water, just about keeping my head above water. If that is now my life, then i dont know how much energy i have to continue doing that for the rest of my years.

I'm sorry for sounding so negative, but i can only speak the truth.

Jacob x

Offline Miss Philicia

  • Member
  • Posts: 24,422
  • celebrity poster, faker & poser
Re: Please Help - Looking for advice from experience
« Reply #9 on: September 25, 2007, 10:59:08 AM »
Hi Kate,

I'm having problems accessing my inbox and wanted to reply to you privately but i cant seem to find the option on the screen to do it. So i hope this reaches you.

The PM (private message) function on this board does not get activated until after your 3rd post.  Post again in this thread and it should be automatically turned on for you.
"I’ve slept with enough men to know that I’m not gay"

Offline penguin

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  • Posts: 747
  • The Penguin Whisperer
Re: Please Help - Looking for advice from experience
« Reply #10 on: September 26, 2007, 08:35:53 AM »
Hi Jacob - good to hear from you again. I should have mentioned the thing about private message sending…but I see philly has explained this

I'm glad you felt able to say a bit more about how youfeeling at the moment - & you don't have to apologise for that. Being diagnosed with hiv is a big, frightening thing for most people, and the thoughts and feelings you're having are very familiar to many here.

I'd like to say "you just do x,y,and z, and it will be better"… but, as with most things, is not that simple. I can tell you a bit about some of the things that I found helpful though?

Meeting other people living with hiv allowed me to challenge some of the worries and fears I had - being able to see healthy, productive people, enjoying jobs, relationships, holidays, M&S sandwiches in the sunshine etc, all helped to reassure me that the goals & aspirations I had pre-hiv were still possible, and that I wasn't alone in my feelings.

Learning about hiv & treatment options helped to take much of the power away from fears of the unknown, and made me feel much more in control of my health and decision making

Acknowledging my feelings and fears - writing them down, confronting them, talking them through - allowed me to assess what I could change, and what I needed to work on accepting - and more importantly, allowed me to see them for what they were; feelings and fears, not written-in-stone certainties

Making an effort to create some space each day free from hiv-related stuff. Recognising the need for stillness, quiet (meditation, yoga, under-tree sitting) & balancing this with staying active - physically, mentally, & socially. I took up rock climbing (mostly indoors) at some point post-diagnosis; kickboxing too. Kite flying, pottery, swimming, cycling - things like this helped me re-connect with my self, & work out some of the emotional stuff too (plus, they are just fun, which is important  :) )

Regardless of what else you do, if you feel that these intrusive thoughts/worries are getting a bit out of hand, do look at getting some extra support with this. Sometimes we can get stuck in cycles of thoughts, & need some help to find the way out.

Hiv-wise, you're ok, nothing dramatic is gonna happen any time soon  - it does take time to accept this properly though, I realise.  Treading water is ok, perhaps helpful even for a while… but don't stay out there too long, eh? Water gets cold, skin gets wrinkly… & in the meantime, you miss out on many, many things. Pick a point on the shore to aim for, & start swimming.

kate

Offline naftalim

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  • Posts: 102
Re: Please Help - Looking for advice from experience
« Reply #11 on: October 05, 2007, 10:30:37 PM »
I guess the only thing I would add as someone who was diagnosed just over 2 years ago, is that you be aware that you are going through emotions that are natural and that have a cycle and that humans adapt very well. I, like you was frantic when first diagnosed and had all the same concerns, including that I would be unable to work and would lose my home and be out in the street. Well, its not a picnic, but under the circumstances, life is normal. In fact, getting into a routine with doctors and meds was actually comforting, as I feel that I am being taken care of. I look forward to my Doctor visits.

I take meds twice a day, and its at the point where its as normal as putting on my socks. I have had no side effects to date. (I'm already bald so no loss there)

So, get into a structure where you are managing this thing, and you will find that soon you will be comforting people who feel just like you do now.

All the best.

Offline DanielMark

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  • Posts: 1,475
Re: Please Help - Looking for advice from experience
« Reply #12 on: October 06, 2007, 01:10:32 PM »
Welcome to the forums Delby,

What you are feeling – the fears and the doubts – are all perfectly normal for someone just recently diagnosed. I can only tell you that as someone who has managed to live with HIV in my body for 19 years  that things will improve in time. Try not to imagine yourself into despair.

It is a huge life adjustment to test positive, but it is definitely not the end. If you take good care of your health chances are good that you will live a long life. Try to take things one at a time and as they happen, and do try not to absorb everything all at once or too quickly. That’s a sure path to feeling overwhelmed and hopeless.

Be good to you!

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

 


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