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30+ YEARS, WAITING ON NEW DRUGS, TIRED OF IT ALL

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BigWillie:
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

Buckmark:

--- Quote from: BigWillie 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

--- End quote ---

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

Jeff G:
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 .

OneTampa:
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.

mitch777:
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.

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