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Author Topic: HIV, for some of us, is basically a mental challenge  (Read 5457 times)

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Offline mecch

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HIV, for some of us, is basically a mental challenge
« on: April 16, 2010, 06:02:15 AM »
Went to the Endrocrinolgist - my psychiatrist sent me.
He tested and said - everything is normal, hormones, etc. Offered me the miracle pills (viagra etc) and told me to get off my butt more which is the same recommendation he makes to many guys in their 40s.  Told me my challenges were mental and referred me back to my shrink.

Went to the Dermatologist - my HIV doc sent me.
He examined me thoroughly and said the red splotches (symmetrical on my body) were a kind of  eczema had nothing to do with HIV or any identifiable pathogen and reminded me I always had skin problems before I seroconverted.  He prescribed mundane treatments and said it was mental.

Went to the HIV specialist when Atripla (truvada stocrin) was driving me crazy. He sent me back to my shrink a few times, saying most of my complaints seemed really to be mentally caused.  He was aware of the nervous system problems of Atripla but still dismissed mine.  Finally changed my combo to good results -- but STILL said it was mostly emotional in my case. 

Its become increasingly apparent that in my case, in my experience of HIV, the primary challenges are emotional and social and intellectual. 

Not being insensitive about how different other peoples experiences are, or were.  Just saying.  Maybe my little post here helps counterbalance the tendency of this forum to bad and worst case scenarios.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Andy Velez

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Re: HIV, for some of us, is basically a mental challenge
« Reply #1 on: April 16, 2010, 09:20:48 AM »
Mecch, what are your thoughts about those challenges and what might be helpful to you in the situation?

You have lots of company with this issue.
Andy Velez

Offline veritas

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Re: HIV, for some of us, is basically a mental challenge
« Reply #2 on: April 16, 2010, 09:35:38 AM »

mecch, Andy,

Although, I can identify with mecch, since even the common issues that have to do with our health, send up a red flag for those of us positive. What I try to do is distract myself from the constant focus on every little health issue that comes along while still keeping vigilant for the "biggies".  What works for me is exercise. When focusing on competing with myself to do better than the previous workout, I find not only do I feel better, but also, I forget for awhile thinking about being poz.

This works for me.

v

Offline Jeff G

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Re: HIV, for some of us, is basically a mental challenge
« Reply #3 on: April 16, 2010, 09:41:56 AM »
Hi Mecch . I am really happy you started this topic , you have brought up an issue I have been wanting to discuss here in the forum that I deal with myself on a daily basis but have been reluctant to discuss because it is rather uncomfortable to me .

Like Andy suggested please expand on how this effects you in your day to day life . It would be most helpful to me to hear your thoughts on this .    

Offline Miss Philicia

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Re: HIV, for some of us, is basically a mental challenge
« Reply #4 on: April 16, 2010, 10:00:14 AM »
There are many studies showing high rates of depression with HIV'ers, far above what one sees in the general population.  This is a no-brainer.  What I am always surprised of, however (and obviously this is not at all directed at the OP, but just a general observation) is how severely resistant many people are about regularly seeing a psychologist and/or going regularly to a local HIV support group.  I can assure you that however good you think support is on an internet forum, it's not particularly a substitute for a real life support group.

I don't personally think the goal is to "distract oneself" about issues like veritas says (no offense, perhaps it's just the wording) but through cognitive behavioral therapy learning how to rationally manage these issues, which in the long term alleviates the need to be on anti-depressants and/or benzo-type medications.

Additionally, this takes work and commitment on the part of the patient.  There is no light switch, and that's why I emphasize going on a regular basis in my statement up above.  But overall I agree -- once your HIV meds are working properly your health diagnosis long term is probably 90% mental health management.  I'd say the majority of people just try and sweep it under the rug, but I promise you that doing that it will eventually come back and bite you in the ass.
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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Re: HIV, for some of us, is basically a mental challenge
« Reply #5 on: April 16, 2010, 10:10:29 AM »
Good question. And you?  

I suppose if one's health has been checked out by specialists and proved strong, except for HIV infection...

And, if one lives in a country and in a situation in which health care and especially HIV health care is not much of a challenge.

1) Get a therapist or a shrink and deal with as many issues as possible.  A wonderful partner or emotionally wise close friends might be about as good, I guess.  I was so weak personally, I couldn't repair anything alone.

2) Know that HIV is just a virus and, conditions above met, its manageable - put that in perspective and treat yourself globally not locally.  It's not "about HIV".  

I guess personally I'm open to more esoteric explanations and views about a life that occassionally goes out of whack.  Or sometimes gets seriously fucked up.  

NOTE, in contradiction, I HATE "illness as metaphor" in the absence of treatment, but it makes sense to me in tandem with medicine.  That is - allow yourself to be medicalised to some extent, but know that can't be the answer to "health" or a life well lived, or happiness and joy.  

It broke my heart and angry steam blew out my ears when in the 80's I knew people with AIDS who were doing the spiritual route, and there were no scientific solutions.  The body was OVERWHELMED by the deadly virus, how could mind-body connections ever stand a chance!

But when the body and mind have a fighting chance -- sooner or later you gotta help yourself because nobody else really has the time to do much.  Here in Switzerland I find the docs quite drug friendly - though hardly irresponsible with drugs.  I think docs in Switzerland and the USA love to prescribe!  Unlike we could imagine in some other countries.

Like the endrocrinologist - pushed me the cialis though I wake up with hard ons and know that if I go soft in sex its clearly a mental issue of some sort or another.  But didn't give me the testosterone which I was kinda jonsing for, cause I thought it would give me some youthful boost of well-being.  

What I mean by esoteric is that its helpful to break the routine way of looking at things, and circular thought processes, if you feel that you are in a rut.  For instance I listen to podcasts and download self help and new age talks.  

Here is a regular good source of free podcasts:
http://www.soundstrue.com/podcast/?p=1623

I am the first one to laugh and be offended by some of the ridiculous stuff I hear.   You have to laugh at the guys who talk about being shamen or having been visited by "beings".  But there are some really clever and deep thinkers too, either scientifists or life-long spiritual practitioners, quite often bridging the esoteric with science - just like the Dalia Lama sometimes does.  

I read recently, research/theory that SSRI's don't counteract depression via serotonin. The serotonin has no effect on depression. Rather, the serotonin bath allows a damanged brain to heal itself - slowly building new material, synapses, etc.  

That's a rather different way of looking at things, isn't it?  Obviously medicine cures some illnesses. Other times, it seems medicine gives the body a chance to cure itself.  

Clearly this is the case with depression. Ultimately you cure it yourself.  That has parallels to my HIV experience (MINE, from 2008-2010), cause the doc said I was genetically a goner without medicine and the medicine allowed me to reconstitute some health rather quickly.  But it won't cure.

If I can turn around, forgive, overcome, forget, resolve, avoid repeating most of the stressy crap that happened a year or two before seroconversion and then the stress of  seroconversion, I expect it will mostly be water under the bridge in a few years time.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: HIV, for some of us, is basically a mental challenge
« Reply #6 on: April 16, 2010, 10:27:13 AM »
Yep, totally agree Miss P.
But i suppose there are a few constraints to going to therapy:
1) Its not affordable
2) stigma or previous bad therapists
3) person doesn't want to look at it all, would rather project, ignore, distract, etc.

Sad but true - my psychiatrist was jumping through hoops to get continued coverage for me before I serocoverted.  After, it became easier for the OK.

In the USA, a lot of therapy is limited to number of sessions.  I believe drugs can help on this matter, stablising dire situations for instance.  

I'm sure those with HIV have slightly more access to longterm mental health care through AIDS organisations, thank god.  But it hardly seems universal.

Another thing that worked for me was that when I broke apart (months before serocoversion) I was on holiday, and when I went to the shrink, I told her the priority was putting me in form to do my job.  Don't think this is a priority for all depressed people, or people with AIDS who are sick, but I'm sure for many its pretty crucial.  Its so important to avoid isolation and losing a job that you like well enough can just be a mind fuck, for one, and wreak havoc on a life in so many ways.

I think people don't realise that medicine can often do this for mental as well as physical damage.  The day after I started HAART, I felt terrific.  The day after I started SSRI's I felt them, and a week later, i could see light at the end of the tunnel.  Temporary anti-anxiety pills, on top of that, really were the kicker.  I could work a day, be a mess, pop an Ativan and still be functional.  A few years later I hardly ever take the Ativan.

I'm sure sleeping pills and Ativan got me through the Atripla symptoms, as well, until I managed to switch off.

I'm sure many people have HIV specialists who get involved in mental health medications by default - cause there is no other doctor to do it.  But unless its a great doc with a lot of time to spare a patient, its probably a stop gap measure.  

Really these things need to be treated by a specialist.  

I repeat: 

We know of the lazarus effect with HAART.  But successful treatment requires continued treatment and maybe lifestyle changes.

I personally believe mental health professionals can do a similar lazarus effect - but then you gotta keep working on it for lasting turnarounds.


« Last Edit: April 16, 2010, 10:37:38 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Jeff G

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Re: HIV, for some of us, is basically a mental challenge
« Reply #7 on: April 16, 2010, 10:39:46 AM »
I'm coming to realize I have let my Aids diagnosis define who I am as a person first and foremost .

I will be 48 this month and have spent over half my life dealing with the day to day grind of dealing with being positive . I have spent most of these years devoted to getting health care without health insurance and struggling to feed and provide housing for myself .

The Hiv is now controlled better than ever . I now have a home that is paid for and enough money to last a lifetime . When things improved for me I thought I had it made now and I could persue doing some volunteer work , make a few new friends and maybe even date again but now I find myself just as isolated as ever .

I make excuses everyday for not living life to the fullest now that I have the opportunity .
I fill up everyday by having the cleanest house and nicest yard you can imagine and then take a nap . I cant seem to find it in myself to let any one into my perfect little world I have created . I tell myself no one would want to date a guy with a skin rash with hiv who is pushing fifty and still feel like I not much to offer the outside world .

In short I need to get my ass in gear and figure all this out before life passes me by . Drugs are not the answer to my problems action is .
« Last Edit: April 16, 2010, 10:41:45 AM by jg1962 »

Offline Miss Philicia

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Re: HIV, for some of us, is basically a mental challenge
« Reply #8 on: April 16, 2010, 11:30:15 AM »
Yep, totally agree Miss P.
But i suppose there are a few constraints to going to therapy:
1) Its not affordable
2) stigma or previous bad therapists
3) person doesn't want to look at it all, would rather project, ignore, distract, etc.

Sure, in some cases, but my experience shows that there are usually enough resources for US-based patients.  Any decent private/employer based insurance policy will have a mental health rider -- back when I was employed and on an HMO my rider limited me to something like 28 mental health sessions yearly.  That's slightly more than 2/month which is more than enough.  When one is in crisis mode and starting therapy, which is usually the case because they've procrastinated with the issue so long everything has come to a head, you can divy up the sessions and go once a week for a couple of months, and then space them out better to use up what is left that first year.  One problem I found, at least in the US, with HMO's they often have you see a psychiatrist for prescriptions, and then a psychologist for the one-hour talk therapy.  If you can find a psychiatrist that will do both that is the ideal situation, and I was fortunate in finding a very good one in NYC via a referral from my HIV specialist, plus the psychiatrist was gay and familiar with HIV medication drug interactions.  If anyone in NYC wants his name and number I still have it filed away.  He was also great about taking whatever payment my HMO provided and not charging me anything additional, but I doubt he does this routinely.

As far as services for those of us on Medicare and/or other non-private insurance, at least if you live in or near a large city there are plenty of resources.  Here in Philadelphia there's a whole network of various things for this.  The place I go to now I only go once monthly, more for "maintenance" issues and not anything crucial, but they take my Medicare payment on assignment and I'm never charged any additional fees.  Also, for those on Medicaid, which I am not, I do know of at least two HIV clinics that provide mental health services in addition to their medical HIV care, so all of these are resources specific to treating HIV mental health issues, not just general psychology.
"I’ve slept with enough men to know that I’m not gay"

Offline Miss Philicia

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Re: HIV, for some of us, is basically a mental challenge
« Reply #9 on: April 16, 2010, 11:31:58 AM »
I now have a home that is paid for and enough money to last a lifetime . When things improved for me I thought I had it made now and I could persue doing some volunteer work , make a few new friends and maybe even date again but now I find myself just as isolated as ever .

You can be my Sugar Daddy if you've got a house, but I'm just scared of Bama!
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

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Re: HIV, for some of us, is basically a mental challenge
« Reply #10 on: April 16, 2010, 11:48:14 AM »
You can be my Sugar Daddy if you've got a house, but I'm just scared of Bama!


LOL ... Bama sure does get a bad rap . I have traveled the world and have found some amazing places who had there fare share of idiots in the mix and Alabama is no exception .

Please don't think I was boasting about the money thing .My financial adviser has me on a short leash and I get by paycheck to paycheck just like everyone else . The only thing that has changed for me is the uncertainty of not having enough to make ends meet . 

Offline kev72

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Re: HIV, for some of us, is basically a mental challenge
« Reply #11 on: April 17, 2010, 12:24:32 PM »
I am glad you brought up this topic. All of you have provided great information based on you're experiences and knowledge. It really helps us who are new to all of this and learning to deal with it.
Thanks!!

Offline Bucko

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Re: HIV, for some of us, is basically a mental challenge
« Reply #12 on: April 18, 2010, 06:45:13 PM »
Many ASOs offer mental health services at no charge, though in these rough budget times it may not be as comprehensive as one might like, and most ADAPs offer at least something related to MH meds. Anyone in need to MH services (and that's every single HIV+ person I've ever met) should see what's available in his/her area.
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Offline PeteNYNJ

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Re: HIV, for some of us, is basically a mental challenge
« Reply #13 on: May 08, 2010, 02:06:08 PM »
I feel like just when I get a hold on my mental state, I have some huge setback.  This week it came to a head with a big fight with my family where I was being very irrational.  I started to blame them for problems that exist in my life where who I really wanted to punish was myself.

I think the issues of stigma, medication adherence, health care availability, employment opportunities, as well as dealing with your own mortality can take a toll on one's mental health without you even realizing it until it really creeps up on you.

6ish years into this disease, and I feel I go through stages.  Like the stages of loss that just keep repeating with any new set back in my life.  I am sure I am the hardest on myself, but that is how I am wired and need to really try hard not to go to worst case scenarios.

At the end of the day, it is a major life event that you have to deal with for the rest of your life.  If you don't have an outlet to vent, I don't know how you don't just go nuts.

Pete

Offline Hellraiser

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Re: HIV, for some of us, is basically a mental challenge
« Reply #14 on: May 08, 2010, 06:56:47 PM »
I seem to oscillate between being completely fine with it, beating myself up over having to deal with disclosing to everyone I even think about having sex with, and realizing my own mortality which gets me down.  I'm feeling so much better now than I have in years though that I think a lot of my funky mental state was as a result of FEELING so terrible and so fatigued for so long.  You don't even notice it until it impacts every portion of your life.

At the end of the day, it's just not as bad as I sometimes think it is.

Offline ruralguy

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Re: HIV, for some of us, is basically a mental challenge
« Reply #15 on: May 09, 2010, 01:54:08 PM »
Days go by and I don't think about it but...when the date of my nexts tests and doc visit approach, I do get all weirded out all over again.  In spanish one would say "es asi" with a shrug....it's just like this, nothing to do about it.  But it's hard to let go of, for sure
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline elf

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Re: HIV, for some of us, is basically a mental challenge
« Reply #16 on: May 18, 2010, 09:49:18 PM »
I guess we all need a new start.  :-\
Let's have a Kiki!

Offline tommy246

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Re: HIV, for some of us, is basically a mental challenge
« Reply #17 on: June 08, 2010, 01:20:10 PM »
Days go by and I don't think about it but...when the date of my nexts tests and doc visit approach, I do get all weirded out all over again.  In spanish one would say "es asi" with a shrug....it's just like this, nothing to do about it.  But it's hard to let go of, for sure

Thats how i am i go all day never think of it except at bedtime when i take my pill  but always get a bit nervous when its time for the 3 monthly visit. But my question is this . If you live in the western world with access to modern meds and healthcare and are diagnosed early enough with decent numbers is hiv that much of a chronic illness to live with nowadays . My wife has colitis and really suffers  always in and out of hospital , on and off steroids and then still on 9 pills a day when she is doing well , a high % end up with cancer or and a bag . She really does suffer whereas i feel fine .Maybe im still very new to all this and being a bit niave but i am only talking about people with hiv in the circumstances i mentioned above .
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline mecch

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Re: HIV, for some of us, is basically a mental challenge
« Reply #18 on: June 08, 2010, 01:25:25 PM »
Maybe im still very new to all this and being a bit niave but i am only talking about people with hiv in the circumstances i mentioned above .
You're not naive, you're wise to the fact that there is no one size fits all experience, which is why I made the post.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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