Author Topic: What are your worst side-effects for being HIV poz? (Read 11986 times)

red_Dragon888 · « **on:** August 12, 2007, 03:40:48 pm »

I must say that besides the health issues and some side-effects from the drug, the worst side effect of this condition is being connected to the medical end of this industry. I never thought that I would see a Doctor so many times a year and feel at times so helpless. But things could be worst. I could be dead I guess.

madbrain · « **Reply #1 on:** August 12, 2007, 06:00:31 pm »

Being turned down for sex so damn frequently.

red_Dragon888 · « **Reply #2 on:** August 12, 2007, 06:04:52 pm »

that's a good point. Sex aint what it use to be.

Miss Philicia · « **Reply #3 on:** August 12, 2007, 06:21:09 pm »

To be honest I don't mind doctor's visits so much, what I detest has been dealing with the insurance issues and bureaucratic bullshit.

allopathicholistic · « **Reply #4 on:** August 13, 2007, 09:54:08 am »

Quote from: philly267 on August 12, 2007, 06:21:09 pm

what I detest has been dealing with the insurance issues and bureaucratic bullshit.

ditto, that's our U.S.A.
:sigh:

Dan J. · « **Reply #5 on:** August 13, 2007, 10:06:50 am »

depression, PN & the daily "squirtz".

Dan J.

redhotmuslbear · « **Reply #6 on:** August 13, 2007, 11:03:48 am »

Ferocious allergies from my immune system being on-edge constantly

An inappropriately large pharmacological and medical vocabulary

More sex that when I was in my 20s -- HIV got me to take better care of myself and to define who I am more clearly. Guys seem to like it and can deal with the viral enhancement if we negotiate safety early on.

27years · « **Reply #7 on:** August 13, 2007, 04:49:27 pm »

battling with my employers over my rights at work and it feels like am fighting a battle with a big organisation which has ignorant and uninformed top officials. It does my head in all the time

pozattitude · « **Reply #8 on:** August 13, 2007, 04:51:27 pm »

the negatives

manchesteruk · « **Reply #9 on:** August 13, 2007, 05:13:19 pm »

I think I've been lucky enough to not have any physical side effects really. The side effects for me are psychological ones. Mainly in the way I look at myself and how I perceive other people to view me. These psychological side-effects are hugely overlooked by doctors on how they effect the health of HIV+ people I think and certainly in the UK there isn't anywhere near enough support provided.

This is definitely the case after the initial diagnosis anyway some stories I've heard have been awful. When I was diagnosed essentially I was given a few Aidsmap and THT leaflets then sent on my way. My self esteem certainly took a battering at the start I've recovered from that to a certain extent though. I do sometimes wonder how I'm going to handle medications when the time comes hopefully thats a while away yet though.

mike2002 · « **Reply #10 on:** August 13, 2007, 05:59:46 pm »

Quote from: manchesteruk on August 13, 2007, 05:13:19 pm

The side effects for me are psychological ones. Mainly in the way I look at myself and how I perceive other people to view me.

I could not agree more.

MOONLIGHT1114 · « **Reply #11 on:** August 13, 2007, 06:04:16 pm »

Quote from: manchesteruk on August 13, 2007, 05:13:19 pm

I think I've been lucky enough to not have any physical side effects really. The side effects for me are psychological ones. Mainly in the way I look at myself and how I perceive other people to view me. These psychological side-effects are hugely overlooked by doctors on how they effect the health of HIV+ people I think and certainly in the UK there isn't anywhere near enough support provided.

I agree with manchesteruk. The psychological effects are the worst for me, as well. I sometimes feel ashamed of my status and I have become very guarded in relationships/dating. I wish I could relax, have a little more confidence and just be "me" again.

~Cindy

poz1970 · « **Reply #12 on:** August 13, 2007, 06:37:45 pm »

anal wee

appleboy · « **Reply #13 on:** August 13, 2007, 06:45:08 pm »

My biggest issue is the massive amounts of gas I get. I mean farting is funny but damn I could almost fill an entire blimp in a few weeks!

Life · « **Reply #14 on:** August 13, 2007, 08:41:50 pm »

I would have rather kept working on my get rich quick scheme's...

Eric

[attachment deleted by admin]

aztecan · « **Reply #15 on:** August 13, 2007, 09:57:48 pm »

What are your worst side-effects for being HIV poz?

That's a good question.

With my buffalo humpette, I do have a bit of an image problem.

Of course, if I look at myself face-on in the mirror, I look like I could bench press 500 lbs., so maybe that's not so bad.

I have lipoatrophy, have had for a while. I have skinny legs and arms and my veins look like an illustration from an anatomy textbook.

But, I also look around and see negatives with skinny legs and bulging veins. OK, some are meth addicts, but others are just that way. Also, since I do try to exercise, I at least look a bit muscular rather than just bony.

So, that's probably not too bad either.

Sex? Well, actually, I had more sex in my youth than mere mortals could withstand. I probably had more sex in one trip to the baths than most straight men do in their lifetime.

True, the last eight or 10 years have become increasingly spare when it comes to sex. Then again, I am 50, an age when most gay men won't acknowledge you unless they want something - like cash.

I've been on meds for more than 11 years. During that time I have dealt with anemia (not bad though), kidney stones (not the most fun I've had), and the other physical side effects, not to mention Sustiva and its horrors (some nights, literally).

But, on the other hand, those same meds have prevented a trip down PCP Avenue and basically allowed me skip a trip to the land of Opportunistic Infections. So, I guess I really can't carp about that, can I?

I somehow managed to live 20 years longer than the doc who told me I was positive said I would.

Unfortunately,I am now entering a chapter in my life that is particularly frightening to me. Why? Simple, because I fear I won't have the energy to do all the things I want to do before I kick the bucket.

So, what is everyone's greatest fear regarding getting old?

HUGS,

Mark

bryonut · « **Reply #16 on:** August 14, 2007, 01:31:55 am »

The evil IRS!!! (Immune Reconstitution Syndrome)

bry
(who pays his taxes and is in good graces with the other IRS)

BT65 · « **Reply #17 on:** August 14, 2007, 05:59:13 am »

All the people I've lost, dealing with government agencies, lipo (both dystrophy and atrophy). The doctor's visits don't bother me very much. I certainly don't have the sex I used to have, but like Mark said, a lot of the things that bother me could be me getting older. Back when they were megadosing people with AZT, my hemoglobin dropped to two and that really sucked. I think the biggest drawback for me has been all the wonderful people who have come into my life and left, due to the illness.

xyahka · « **Reply #18 on:** August 14, 2007, 06:13:28 am »

These two things motivate me to post this right now...

1.Having to wake up 4am to go to the hospital, to make a queue and wait for my Dr for 6 hours.
2.Also the fact they never have any of my meds i am prescribed and that i cannot buy at this time.

Yep... those are side effects i hate.

Juan Carlos (5.10am... leaving for hospital... mmm might add some things later on in this thread)

J.R.E. · « **Reply #19 on:** August 14, 2007, 08:49:05 am »

Hello,

If I was to put things in order from the worst side effects to the major annoyances, I would probably list them as follows :

1. Definitely the PN in the hands and feet being the worse, add arthritis to that and well...

2. Second worse, .... The skin problems I've been having. Basil cells and squamous cells, and lets not forget HPV... Although, I should probably put HPV up there in the number 1 slot.

3. Third worse....Tinnitus in the ears. Always constant, never ending.

4. That occasional fatigue, that will just wipe you out, along with muscle ache,.. oh yes, and the brain fog, !!

Ray

J.R.E. · « **Reply #20 on:** August 14, 2007, 08:54:11 am »

5. Forgot to add one more thing....My big fat stomach !!

JPinLA · « **Reply #21 on:** August 14, 2007, 11:09:49 am »

Thus far it has certainly been the psychological side-effects. This includes, but is not limited to, stress about my health, stress about my financial future, anxiety that I might infect my partner, disappointment in myself, letting others down..

I have to say I am not yet 1 year diagnosed and the feelings/thoughts I have described were much more prominent earlier and have waned with time. They are, however, still hanging around. Luckily I have a lovely support system of friends, family and a therapist who I suspect is related to Barbra Streisand but won't own up to it. These side-effects are becoming more manageable with time but I do not expect them to ever disappear completely.

JP

leatherman · « **Reply #22 on:** August 14, 2007, 12:49:13 pm »

1) Barfing! Even on a better regime, I still puke about once a week; but it isn't every damn day anymore, so I'm trying not to complain about puking too much anymore.

2) Being "half sick". Half of the time, I feel pretty darn good for 45. The other half of the time, I'm either queasy or soooooo tired and achey.

But I'm not dead, not in the hospital and the puking has been reduced by 1000%, so it ain't all bad like it was the first 10 yrs having this disease.

cjc · « **Reply #23 on:** August 14, 2007, 01:34:29 pm »

My worst side effect is fear I think. Even though I know I can be here for years I fear that I will die and my parents will die and my now 4YO will be alone or a ward of the state

. My other fear is the people in this community will find out and treat my son or parents poorly. I have posted about these things before. Physically, the loss of my ass is very upsetting, image thing I guess. I used to have a nice fat ass and it has deflated and moved around to my tummy so I feel like I look funny.

Cristy

Joe K · « **Reply #24 on:** August 14, 2007, 02:09:02 pm »

There is not enough room for me to post all of my side-effects, nor would I want to relive those times.

There is however, the worst side-effect of HIV that I have experienced and that is burying too many people to even count, let alone remember them all.

Moffie65 · « **Reply #25 on:** August 14, 2007, 02:20:35 pm »

Being given up for dead three times by the doctors.
Not being able to walk for five years.
In constant shreaking pain for 12 years.
Near death case of pancretitis.
Drug induced Hepititus.
All the annoing stuff listed in the above posts.
There are pages more, but I got work to do, so I will cut this off. Life goes on!!!!

Gimme a break, HIV is nasty shit, and it will kill you still if you don't put up with the side effects of the meds and you don't take them.

Sheeeeeesh!!!!

Jerry71 · « **Reply #26 on:** August 14, 2007, 02:20:49 pm »

Having to go and get blood work every week for the first four months of being diagnosed with AIDS. Also being stuck with a needle and trying to find a vein to get my blood from. At the time I was going my veins would move alot aka "jumping veins" and with so much weight loss it was hard finding a vein to stick me. Thank goodness those days are over and I only have to get blood work done 3 times out of the year.

raroy273 · « **Reply #27 on:** August 14, 2007, 02:35:30 pm »

Dealing with the stigma the disease carries and having to disclose before having sex. The contiunius Dr's appoitments and blood draws and having to constantly be aware of the changes in healthcare policys.

Think its eaiser to date/hook-up with other HIV poz guys.

cjc · « **Reply #28 on:** August 15, 2007, 12:26:32 am »

Quote from: Moffie65 on August 14, 2007, 02:20:35 pm

Being given up for dead three times by the doctors.
Not being able to walk for five years.
In constant shreaking pain for 12 years.
Near death case of pancretitis.
Drug induced Hepititus.
All the annoing stuff listed in the above posts.
There are pages more, but I got work to do, so I will cut this off. Life goes on!!!!

Gimme a break, HIV is nasty shit, and it will kill you still if you don't put up with the side effects of the meds and you don't take them.

Sheeeeeesh!!!!

Hello, Moffie. Glad to see your post. I take my meds like a good girl, I want to live. But I still miss my ass. You (fairly sure it was you), once told someone to read"And The Band Played On", I am reading it and it is fascinating and sad. Sorry for the mini hijack. Cristy

MoltenStorm · « **Reply #29 on:** August 15, 2007, 09:23:02 am »

My worst side-effect is being treated more like a disease than a person when it comes to the dating world.

northernguy · « **Reply #30 on:** August 17, 2007, 10:11:37 pm »

Quote from: aztecan on August 13, 2007, 09:57:48 pm

..Sex? Well, actually, I had more sex in my youth than mere mortals could withstand. I probably had more sex in one trip to the baths than most straight men do in their lifetime...

Hot dayum, that sounds like a challenge to a whore off:
http://www.jibjab.com/view/118440

For me the worst has been the skin problems.

red_Dragon888 · « **Reply #31 on:** August 19, 2007, 02:11:45 pm »

A definite bad side effect is dating. I have a pretty small pool of people I would want to date just to find the results are the same. Mostly just jerks who think they are gods gift to earth. I guess it seems I had my love of my life and there is no other who could fill that void. Talk about carrying a torch.

Nico · « **Reply #32 on:** August 19, 2007, 02:39:47 pm »

The worst side effects for me are:

1. Knowing where all the bathrooms are at all times - thank you Norvir!
2. PN - thank you Zerit.
3. Anemia and the fatigue - I need to thank two drugs Trizivir for making it worse and Procit injections to make it better.
4. Lipo - I can relate to Mark's roadmap of veins - I will have the pleasure of surgery in a few months to close up the main one in my left leg and saline injected into my calf to shrink the crooked one. Yuk!

But hell, I could be taking a celestial dirt nap so I will live with 1-4 and be happy I have today.

Rog

zeb · « **Reply #33 on:** August 19, 2007, 06:58:04 pm »

uncertainty

The worst side effect of having HIV to me is the feeling there's a gun placed against my head and at any moment the trigger can be pulled.

Zeb

poz1970 · « **Reply #34 on:** August 20, 2007, 12:07:23 am »

Quote from: J.R.E. on August 14, 2007, 08:49:05 am

Hello,

If I was to put things in order from the worst side effects to the major annoyances, I would probably list them as follows :

1. Definitely the PN in the hands and feet being the worse, add arthritis to that and well...

2. Second worse, .... The skin problems I've been having. Basil cells and squamous cells, and lets not forget HPV... Although, I should probably put HPV up there in the number 1 slot.

3. Third worse....Tinnitus in the ears. Always constant, never ending.

4. That occasional fatigue, that will just wipe you out, along with muscle ache,.. oh yes, and the brain fog, !!

Ray

I've noticed I regularly have bad tinnitus, I had no idea this is a side issue with hiv/medication?!?! does anyone else have this issue?

J

LPinUK · « **Reply #35 on:** August 20, 2007, 06:27:06 pm »

The worst side effect for me is, by far, difficulty in dating as I still find it almost impossible to disclose.

Physically I am probably healthier than most of my friends my age who drink alcohol and smoke weed almost every night of the week.

buca45 · « **Reply #36 on:** August 24, 2007, 01:11:56 am »

I have two:
1. The serious psychological after effects of being on Sustiva for 6 months. I was one of those 1/10 of 1% who suffered severe psychosis for about two years after stopping the meds. Out of body experiences, yes....sucidal thoughts, yes......but I did get a never ending script for xanax out of it, for that i am thankful.
2. The ever present, ever changing morning aches and pains that seem to be getting worse everyday. Still havent found enough info on what to do there, so wish me luck.
many others that have come and gone and that I cant recall due to psych problems.
Otherwise, I m lucky to have full coverage insurance and a comfortable, beautiful home with the partner from heaven and a dog who thinks shes from heaven......
Cant spend any time complaining.... too busy maintaining a fab life!!

+Man · « **Reply #37 on:** August 24, 2007, 01:21:25 am »

Endless complaining

David_CA · « **Reply #38 on:** August 24, 2007, 09:27:43 am »

Quote from: poz1970 on August 20, 2007, 12:07:23 am

I've noticed I regularly have bad tinnitus, I had no idea this is a side issue with hiv/medication?!?! does anyone else have this issue?

J

I do too. The problem is that I don't know if it's HIV related, HIV med related, other med related, or just me. I can't remember when it started, so it's really hard to know what to 'blame' for it. I don't think it's related to Adderall. Possibly it's from Lisinopril (for hypertension). I'll have to research more and see what I find about tinnitus and Atripla. I pretty much always have some sort of background noise - like a fan - all the time. I'm thinking that subconsciously that helps mask it.

David

wishihadacat · « **Reply #39 on:** August 24, 2007, 01:55:43 pm »

1. Dry life.
2. Dry skin.
3. Dry wit.

dixieman · « **Reply #40 on:** August 24, 2007, 04:54:27 pm »

side effects:

diarrhea... for 3 years when taking zerit/kaletra great # for cd4's etc...
lost all the fat but, I was never fat... so I work out to have a body... still trying to get back to a 30 waist from 32"
I do miss my bubble butt...
kidney stones from crix...
folliculitus on going... clears and comes back
8 feet of intestine taken out 2 years ago... oh and a newly shaped butthole... from a prolapsed rectum from lifting weights and fat loss... all I can say is my tooter has the look of a 25 year old.. lol

I was told by a women a few months back that I looked just like Robert Redford...
my come back to her was... do I look like him in his prime or at present? lol
needless to say she was dumb-founded

oh and gas... but, before I have an accident I run to the restroom before an accident can happen... so far its been only gas... one never knows?

never thought I would live to 46 and here I am... so now to get compliment I tell people I'm 56... now I look fabulous for 56... need tell you!
with all these side effects and I'm sure I've forgot to mention a few... I'm doing great and as my doctor explains I am healthier than most of the staff including herself who are hiv- neg...

Whats funny all the homos in town think I'm a butch daddy when in reality I'm more of a he man lesbian...lol

Who would Figure? be sweet!

pozattitude · « **Reply #41 on:** August 24, 2007, 08:42:05 pm »

outside severe allergic reaction to Zerit that put me in the hospital, I would have to say the PN, the nausea , the vomiting, the diarrhea and the constant feeling of being tired have to take the top 5.

now...I have to share this, it really is cute...hey..maybe they will use it on the adds for the HIV meds..

Rich
(who does have a bizarre sense of humor)

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Author Topic: What are your worst side-effects for being HIV poz? (Read 11986 times)

Dan J.