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Author Topic: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL  (Read 1894 times)

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Offline BigWillie

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30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« on: June 01, 2013, 01:01:38 AM »
Hello..new to the group. Was formally diagnosed in 1985, but sero converted in 1982  - was hospitalized with "unknown blood issues" and the relationship I was in the summer of 1982 resulted in one of the first deaths of a friend to HIV/Aids. over the years have had excellent health for the most part - my main issues were the side effects and reactions to the drugs. I have "lost my ass" due to AZT, thankfully got it back. Have tripped over my own feet from peripheral neuropathy from DDI, thankfully got most of the sensation back 6 mths later after switching to new meds, now waiting on new drugs coming down pipeline. slowly losing ground on my CD counts, viral loads hold though at 5,000 - 10,000.

it's always been about quality of life for me, vs quantity of life. Have combatted severe and mild depression, on LTD for many years due to minor neurological impairments for word retrieval, etc. and know comparatively speaking I am well off financially in relations to others in my situation, married to a wonderful big hearted teddy bear who loves me to pieces (he is HIV-), 13 years now. We own our own home full of lots of furry pets and aquaria, I try to keep busy with swimming, scuba, squash, running, gardening, tavel, antiques, auctions, chess, and serve on several boards for various community charities (have health / education background in university). we live in a small town, my health status unknown to most.   Doc says I have to go on the new quad pill, but it is not covered by my drug plan  - but will be some months down the road. I don't want to go on as I react heavily to tenofovir - hate it most of all the drugs I  have been on. But very few other options - resistant to most others.

Wound up in the hospital last month for first time with I guess not really HIV related illnesses - was a respiratory attack, three days in icu/emergency. I have asthma and wound up having a severe attack when trying to clean up flooded basement. now I am jumping through test after test, bronchoscopy, ct scans, colonoscopy, etc. Pretty drained, funds are limited or nil for things that keep my mind stimulated and able to cope. Husband didn't really connect or understand with my health, at least until I wound up in hospital this past month  - he always thought I was indestructible. I have no one to really talk with on these issues - tried an aids group for LTS's - but they looked at me like I was from the moon. No outwards signs of health issues (actually thought I was trying to write an article and was really undercover for some magazine) and couldn't relate to me and they weren't comfortable with me around as I didn't fit in. A professional, educated man, still reasonably healthy until this past month (which I seem to have bounced back from) - just longing to talk to others who understand the up's and down's (no, no Auntie Mame reference there - the challenges of dealing with finding a focus each day to keep you going) - and who hopes to contribute to someone's elses struggles and lift their spirits.  so that's it in a nutshell.

just wondering if I want to stay on my current 3TC and just let my body take its course.  those are the things going through my head these days. thanks..BigWillie
« Last Edit: June 01, 2013, 01:08:46 AM by BigWillie »

Offline Buckmark

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Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #1 on: June 01, 2013, 02:51:00 AM »
Hello..new to the group. Was formally diagnosed in 1985, but sero converted in 1982  - was hospitalized with "unknown blood issues" and the relationship I was in the summer of 1982 resulted in one of the first deaths of a friend to HIV/Aids. over the years have had excellent health for the most part - my main issues were the side effects and reactions to the drugs. I have "lost my ass" due to AZT, thankfully got it back. Have tripped over my own feet from peripheral neuropathy from DDI, thankfully got most of the sensation back 6 mths later after switching to new meds, now waiting on new drugs coming down pipeline. slowly losing ground on my CD counts, viral loads hold though at 5,000 - 10,000.

it's always been about quality of life for me, vs quantity of life. Have combatted severe and mild depression, on LTD for many years due to minor neurological impairments for word retrieval, etc. and know comparatively speaking I am well off financially in relations to others in my situation, married to a wonderful big hearted teddy bear who loves me to pieces (he is HIV-), 13 years now. We own our own home full of lots of furry pets and aquaria, I try to keep busy with swimming, scuba, squash, running, gardening, tavel, antiques, auctions, chess, and serve on several boards for various community charities (have health / education background in university). we live in a small town, my health status unknown to most.   Doc says I have to go on the new quad pill, but it is not covered by my drug plan  - but will be some months down the road. I don't want to go on as I react heavily to tenofovir - hate it most of all the drugs I  have been on. But very few other options - resistant to most others.

Wound up in the hospital last month for first time with I guess not really HIV related illnesses - was a respiratory attack, three days in icu/emergency. I have asthma and wound up having a severe attack when trying to clean up flooded basement. now I am jumping through test after test, bronchoscopy, ct scans, colonoscopy, etc. Pretty drained, funds are limited or nil for things that keep my mind stimulated and able to cope. Husband didn't really connect or understand with my health, at least until I wound up in hospital this past month  - he always thought I was indestructible. I have no one to really talk with on these issues - tried an aids group for LTS's - but they looked at me like I was from the moon. No outwards signs of health issues (actually thought I was trying to write an article and was really undercover for some magazine) and couldn't relate to me and they weren't comfortable with me around as I didn't fit in. A professional, educated man, still reasonably healthy until this past month (which I seem to have bounced back from) - just longing to talk to others who understand the up's and down's (no, no Auntie Mame reference there - the challenges of dealing with finding a focus each day to keep you going) - and who hopes to contribute to someone's elses struggles and lift their spirits.  so that's it in a nutshell.

just wondering if I want to stay on my current 3TC and just let my body take its course.  those are the things going through my head these days. thanks..BigWillie

Hi BigWillie, and welcome.  When I hear people with HIV say "tired of it all" or "let my body take its course" I think they may be experiencing depression.  Perhaps yours is flaring up again, and that is why you are here.  If so, reaching out is a good way to break the cycle of depression.  Life has its ups and downs -- us LTSers know that better than most.

I'm not quite clear on your medication history or options.  You say your viral load holds at 5000 - 10000.  Why isn't  your doctor trying to get you undetectable?  Are you out of options?  Certainly, the quad is one of the newer options, but perhaps there is something else?  If not, and the quad is your last option, give it a shot.  If you're not interested in that, then I go back to what I said above:  consider that your depression has flared up.  Your recent health / respiratory problems might be contributing to that.  None of us are indestructible -- your husband needs to understand that.  Plus, many of us LTSer are getting to "that age" (ahem) where we'll experience health problems just 'cause we're getting older. 

I think you'll find a lot of helpful, knowledgeable, and entertaining people here.   Welcome.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #2 on: June 01, 2013, 10:31:58 AM »
Welcome to the forum BigWillie . I think Henry hit on some valid things to think about and the depression statement rang true to me . Depression can sometimes be subtle in the way it gets into our life and takes away our joy .

I hope to hear more from you .

Offline OneTampa

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Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #3 on: June 01, 2013, 01:46:46 PM »
Hello BigWillie and welcome.

I am a 28 year survivor and understand what you wrote. 

I agree that depression may be trying to elbow its way to the front of your mind.  It is worth the while getting some help in that area.

I also commend you for reaching out to connect with others.  Becoming a Board Member here is definitely a good idea as others can offer additional suggestions or just be a sounding board.

Continue to take care of yourself.

Best.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline mitch777

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Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #4 on: June 01, 2013, 02:09:46 PM »
Hi Bigwillie,
Welcome!
So much of your story is mine.
I agree with what has been already said and I do hope you continue on the forums.
This place has been an immense help to me and also an opportunity to give others support at times.
m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline BigWillie

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  • Posts: 2
Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #5 on: June 01, 2013, 10:49:44 PM »
I have had my challenges in my life, from being raped at 15 by my high school teacher and winding up in intense care for a week, to losing my family through what followed that event, plus dealing with a very active mind - so depression has been around a long time for me. We have tried everything in terms of the antidepressants, I healed the scars I had from those events and have moved forward as best I can - no one ever guaranteed anyone a life without scars. Best we can do is minimize them as best we can, build a support system and coping strategies and move forward.

my body chemistry isn't your standard one - things work very differently it seems. over the years, the doctors have learned to listen to me when looking at what is going on - the textbooks don't seem to relate to my body.  Coffee makes me sleep, beer keeps me awake (not that I drink). I always thought anti depressants should give you bigger boners - not take them away!??!? That's a no brainer from where i am sitting.  More endorphins mean more happy!!

So while depression is a part of my life, I have always been able to deal with it. I have worked through all of the drugs, and being undetectable while the ultimate goal it seems for the medical establishment, was never as important as quality of life for me. No sense being undetectable and restricted to bed in agony or confused and unable to walk down a hall without losing your balance. my body does weird things - I work with what I can work with and which helps me maintain some semblance of control in my life.  And I have had some of the best HIV docs over the years and they know and support my plans. I have been on 3tc only for the past four years...and they has kept me relatively stable, until new drugs can be available.

I lost most of my support system moving out of the city to be with my husband, which has been great, but hard to make friends here in a small town where my status is not known. So trying to cope with that, keeping my mind stimulated, and my body as healthy as possible has been challenging.

I have been through the gamut of the drugs, have played with their combinations, had some success obviously still being here, and still await others to be approved. I can't run a 4-20 mile anymore - those days were long ago. But I can do under 6 min mile. so I do my best to fight this damn disease process. just hard to find someone to talk to who understands the frustrations, feelings, sadness. I tired of trying to figure out how to make the finances work down the line, yet alone everyday. I develop a new hobby only to find I don't have the funds to enjoy it. I do palliative and bereavement counselling here in the area but most of that is glorified babysitting.

I guess I am tired of being asked to get up to bat once again. best way to describe it. my body parts are breaking down...maybe it is time to start accepting the inevitable. It's hard enough finding things to do to fill my days with interests on a low or non existent budget, but when you don't feel 100% it's even harder. I tried Tramadol last month for sleeping, and for the first time in over 15 years I woke up the next morning relaxed and not tense, not grasping my own body and holding on tight in fear from nightmares.   It was glorious to be not feel like a mummy in the morning.

at any rate, a few more thoughts.

BigWillie

Offline Theyer

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Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #6 on: June 13, 2013, 02:40:36 PM »
Welcome Bigwillie we like people from the moon here. Have to get off friends comp but wanted to welcome you.
Michael.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline phillypinko

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Re: 30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL
« Reply #7 on: June 14, 2013, 04:15:57 AM »
Im only 41 but feel like im 80. I tested positive when I was 20. I lived my life thinking I would be dead by now. The trauma of testing positive triggered severe bipolar disorder so im living on minimum disability. I kind of wonder what im going to do with the rest of my life. I feel like I exist rather then live. Over the last 21 years I have travelled the world and the country. The problem is im not looking forward to being old, poor, mentally ill and positive. I would give anything just to own my own house or find a lover. It sucks living in subsidized housing being on food stamps and disability. Its ironic that I fought and fought and fought to survive and don't know what to do with life now.

 


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