How Time Flys - My Valentine

Tomorrow will be the third Valentines day we have shared since we have known we were HIV!

Of course having been married for over 23 years and known each other for about 30 years we have shared many other Valentines and probably several others when we had HIV but did not know it as we have probably now had HIV for approximately  but since the HIV diagnosis Valentines day has taken on a special significance for us .

As by co-incidence Valentines day 3 years ago was the day Barry started HIV meds for the first time and he had only been back home from hospital  and out of danger from dying of PCP for a short time.

So for me Valentines Day will always now mark the first day us both becoming full members of the 'living with HIV' club.

This sounds depressing, but today I feel slightly better and able to take a different perspective.

As it also marks us ( knowingly) surviving with HIV for over 2  years, as their was a time in the beginning  and there was a time in the beginning when I really feared that one or the other of us would not survive as Barry was so ill and I too was unwell. But more importantly it marks that we have survived as a couple , that our relationship has survived and is strong despite when I wrote in my last post.

If our marriage can survive this it can survive anything, as what can be more of a test to a relationship than finding out in such a hard way that your partner of so many years has been unfaithful, and that unfaithfulness led to us both acquiring what is an incurable virus. Few relationships have been so tested and in fact I know few couples that get along and love each other more than us .

So today I feel more positive.

We have made our third Valentines with our relationship still in tact despite the ups and downs that are bound to happen under the circumstances and with us both relatively healthy.

There is of course a lot more of our journey to go, a lot more learning for us both to do  and who knows how it will end .
But right now we are both here and together and basically in tact .

We have survived!!

The Black Days - depression - sexual infidelity & the importance of truth

I have been really in a black hole again the last few days.

It goes up and down, I seem OK for a week or two then I reach the floor again. A women I know who has had HIV for about 15 years said it took her 3 years to even know what day it was as she was in shock. well I thought I was not and I was doing well
But I guess I am in shock too - it has just taken longer to manifest itself.

The worse of my black dog days is the days when I start to blame Barry.

Well not blame him exactly but constantly ask him WHY??

Yes he was the one that was unfaithful, but I know really it does not matter, theses things happen and compared to most marriages I know ours has endured far longer as many have ended years ago. And BOTH of us have been more faithful to each other than the majority of couples I have known .
But it only takes one time to get HIV
And he was the one that risked that 'one time'!

I know it is not fair, he has enough to cope with without me haranguing him, but I do feel betrayed by his lack of honestly after nearly 30 years together.And what has he got to lose?

I have said I will never leave him and I never will.
And he has never abused me and always has respected me  - although some have suggested that giving me HIV is a form of abuse I do not see it like that.

But WHY did he have sex and probably risky sex with a women in Brazil he did not know and had only met that week, when he had a wife and daughter at home and so much to lose?
Well while he says he used a condom, it had to be risky whatever he says as he got HIV?

When I am in my black days I just want the truth and from him - why did he do it ?

I really do not believe it was due to a burning sexual need, as I have known Barry long enough to know that is not what motivates him ever, nor do I think his sexual needs when we were apart are greater than mine. In fact  I know my sexual libido is more than his with certainty & I have had offers but always said NO!!

Instinctively I think I know why, it was about face ( pride)  - with men it is often about face.
A woman came on to him and quite honestly that was a very rare occurrence to him and he did not want to lose face by turning her down. I know him well enough to know that that would probably be the only motivation that would lead to him having sex with another women other than me.

For a start Barry has never instigated sex, not with me and I know for certain  never with any women before me. He has not - unlike me - actually had sex with many women and even with his first girlfriend it was she that instigated it the first  and every time - he is just psychologically wired that way sexually as he fears ever sexually imposing himself on anyone.

In a way that is great as with Barry you will never find yourself having sex when you do not want it, you will NEVER not feel totally in control of your own sexual needs and your sexuality. but on the other hand it when you have been with someone as long as we have been together it would be nice to be asked at least once in a while, at the very least to feel you were needed by him sexually. You know you are but he never makes the running .

So I know he never did with the person or people he got HIV from either - I do know him very well

He waits for you to instigate it but he finds it almost impossible to say no if it is instigated. Not because he necessarily wants sex but feels he will lose face if he can or does not want to perform if asked  - how stupid but that is how he is.

And lucky for me and for him, the number of women apart from me who have instigated sex with him since we have been together is probably very few - and while maybe he has been unfaithful more than once in the years we have been together that he was away at sea and  I will never know for sure   -  but it is VERY probable that only the women he acquired HIV from has ever instigated sex with him apart from me in over 25 years.

So I know the truth really - but I want him to tell me - I want him to be honest with me??

I have never been sure either that I believe him about the condom as he would not have been expecting or wanting sex so I know he would never carry them. As sex woudl be so far from his mind even when away, especially when away that it would not occur to him to carry a condom. And he is out of practice with even the concept barrier protection altogether as I reached the menopause and felt we did not need it for many years! So the last time he used a condom was probably 20 years ago!

I asked him about that and he said she supplied it and it was too big??
 But can that be true, his penis is not that small, well not too small as to not fit an average condom!!!!!!!

And anyway he would NEVER admit to not using one as he knows how stupid I would feel he was. After all I worked in youth sexual health much of my working life and for most of my life with him - so he knows how angry I would be if he admitted to not using a condom on that sexual encounter that got him HIV.

So I think he is lying through his teeth about that condom. And it makes me so angry that even now he lies to me about that!!

And also I get so mad that even after we found he had HIV he did not 'immediately' come clean about having had sex with someone else.

Which was so stupid and unnecessary as I knew I had not had sex with anyone else since about 1984 long before I was of risk for HIV and I know he knew I had not,  and that I insisted he had a STI test in 1986 before I would EVER have unprotected sex with him, and I had a routine claymidia test around 2000 and as a matter of course was tested for all other STIs so we were both clear then.

And no way had we had HIV for more than 8 years or we would long be dead from AIDS with no treatment or medication!!

So it was a no brainier really.

We both had HIV, he was much more unwell and more progressed to AIDs than me so he had to have had it longer and he had to have had sex with someone else to get it!!

Yes even in his hospital bed he lied -what did he hope to achieve?

And when I have my black days I ask and ask him this repeatedly - why did he continue to lie even when he was in a hospital bed so ill with AIDs & PCP. Why does he still now not tell me the truth and in his own words, why am I left to guess and make assumptions about why the encounter that brought HIV and why no condom and therefore why  this horrible virus ever happened to us??


But I guess I know really why he lied about having ever had sex with anyone else and why he continues to lie about using a condom ...............
And will not tel me why he had sex that time and did not tell me ever really that he had, he let me tell him that the only way he had got HIV was if he had been unfaithful - so I told him!

Because men are all about face. Well sadly face and pride is a big part of Barry self image of himself.


And to admit he was unfaithful at all shattered the image he has of himself as being a fantastic father and dedicated and faithful family man, sadly eventually he had to admit that he had been unfaithful  as you do not get HIV from the AIR!! .

But to admit without my telling him this was the case that  he actually had sex with a comparative stranger in Brazil without even using basic protection would shatter the last illusion he has of himself - that he is always a responsible person!!

It makes me so mad and sad that even now he can not share the truth with me and with no outlet anger turns to depression.

All he would have to do to really help me to cope with our HIV is to come clean - WHAT HAS HE TO LOSE EXCEPT HIS VANITY.
Even if the truth is that he was unfaithful many times, which of course is possible, this is better than him lying to me.
But however much I go on, and on , and on for him to tell me the truth, he will not.
He prefers to keep his illusions about himself and continue to lie and hurt me. He does admit he did it now and where and when but he lets me guess why and the details.
Sadly I love hm anyway, which is why we are still together.

It is a sad situation
The last thing he needs is the stress of me getting at him when I am down 

But living with HIV is so HARD and living with HIV with the person who infected you is very hard.

It is a sort of double whammy - you have to cope with your own sadness and loss at beign HIV but also your partners guilt and you have to learn not to blame - so many of your feeligns you have to carry yourself.

It would be just so EASY to blame Barry, leave him and go round exhonerating myself for my own HIV infection for the rest of my life and blame it on an unfaithful partner!! But it is seldom so simple as that!


Many I know were infected by their partners but few, if any are still with those partners ( except a very few who knew their partners had HIV when they started the relationship and therefore knew that there were risks and were willing to accept that risk.

But I have met no one who like me who acquired HIV  due to a partners infidelity and also an infidelity that they did not come clean about nor admit until they found they had HIV and choose to stay with them and choose to  forgive.


Out of everything I have faced in my life forgiveness is the hardest.
And it does not happen in one go, with forgiveness , like everything in life, you take 2 steps forward and one step back - but if the intention is there you will get there in the end

Terrence Higgins Trust - yet another failure

Today I tried to get some help for what I am going through. Call me selfish but I honestly thought there would be some help out there .........somewhere.....................but sadly there is none.

Well none I can access locally without traveling literally hundreds of miles to get that support .
and right now I am just not up to doing that travelling

So again I tried local agencies - they said HIV was not in their remit they suggested KPS as the only charity for people with HIV in Cornwall


Of course I have gone to them and try all the time
to get their help and support
I am even a volunteer for them but as yet they have not found me a constructive role as a volunteer - not have I been able to find one with KPS for myself
Yet I so want to be useful to them!!

But sadly KPS, Kernow Positive Support does not understand my situation -
BUT  I will not knock them or anywhere and certainly not here as they do a great job in supporting many people with HIV in Cornwall and sadly there are many but not one that is public or willing to be which on one level I do very much I understand.

So I will not knock KPS but I have not found they can offer me personally anything.
As a fundamental difference we have - between KPS ad myself - is i belve in peer support
And also I feel any agency or support or charity helping people with HIV those they employee with HIV have to be public.

In fact I would go further personally prefer it if they only employed those with HIV.

A stance that it seems that not even THT understands?

But Pozfem UK: http://www.poz-fem-uk.org/ the wonderful organization that has offered me the only REAL support I have ever had since being diagnosed HIV, is run and organized by women that are HIV positive only and they are all open about being HIV.

Not always, to everyone in their own lives as to be open in every aspect of your life s difficult for most, but they certainly are to those of us that are living with HIV. They offer peer support. sadly to get their peer support and be part of their group I have to travel outside of Cornwall often to cities hundreds of miles form where I live and right now I jsut do not feel up to it

But PozFem are also activists
They put their money where their mouth is and campaign publicly and openly to improve the lot of women living with HIV and to change policy etc

But if all other agencies do not agree with me that those with HIV working in the HIV area need to be openly HIV and more to the point the agency needs to be publicly campaigning for change and that is their right.

BUT while I accept that it is anyone's choice not to disclose their HIV status if you are a private individual .

It is just not acceptable for me on a personal level that any person with HIV taking money from a job with a HIV support charity is not open in every level of their lives they can possibly be about being HIV themselves. Well at least on those levels that affect theri role as a aid worker for an HIV charity or organisation


If they are not what message does it give the rest of us who live with HIV
That it is fine to be ashamed and to hide it ?? That to live in secrecy and fear is the RIGHT way forward

I know I am in the minority, and perhaps wrong? to feel as I do in Cornwall - as so many have told me this - but that is how I feel
But that does not alter how I feel and I need allies to go public about being HIV in Cornwall

Therefore KPS and all other agencies who do not offer OUT peer support are not able to support me in this for many reasons - that I do on one level understand why they wish to encourage secrecy

- but it is of no use to me than a wet jelly as an individual OUT with HIV in Cornwall

So yet again in desperation I called THT - as THT is the nearest other HIV charity to me i.e Bristol - yet again as since I have been diagnosed I have called them about 4 times and never got anything from them but impatience

This time exactly the same ......................the man I talked to got impatient after what he said was 20 minutes!!!!!!!!!!!!!!!!!!! but I know it was much less. He kept saying how can we move forward from here ??

Move forward - no I was not asking us to 'move forward' I was not asking him  for solutions

I was just asking for some peer support as we can not 'move forward' unless you have a cure for HIV how can you move forward? I am just trying to find a way to live with this and get some peer and empathic support to do so  ???


I thought if I called THT of all HIV organizations I would be talking to others who were also OUT about being HIV!!

NO WAY it seems not !!
NOT EVEN THT STAFF ARE OUT ABOUT BEING HIV

As I said to him...I said OK but do you have HIV? Am I talking to someone who understands the full implications of living with HIV? Is this peer support you are offering ?

He basically said - that’s none of your business!! -Oh crap !!

I am talking to yet another one who does not disclose their status either HIV+ or minus? Yet this is someone who is working for a HIV charity

Sorry but I just DO NOT GET IT!!!!
 
I said by phoning you I have disclosed to you that I am HIV and I personally want to know if the person I am talking to has it too or not? I am perfectly harpy to talk to someone from THT or any charity who does not and happy to talk to you if you say you do but that I am not to disclose it and I will not ( anyway when you ring the THT help line you do not get the persons name so you have no idea who you are talking to anyway
.................................but actually I do think it in the context of my ow personal difficulties with living with HIV is relevant for me to know?

And for me whether the person I am talking to has HIV to or not changes the whole perspective of our conversation.


As what I want and so need is PEER support - not some kind of charity with no empathy
 
On your bike THT - Terrence Higgins Trust

You might provide some information services but in terms of what I need i.e peer and empathetic support you offer none!!

If those who answer the phones can not even tell those they talk to that they are HIV + or HIV when the person you are talking to introduced themselves with 'I have HIV

Then THT as far as being able to offer me anything - you skink

I am so angry…………… Today and on every other day I have tried your support  - and yet again you provided me with absolutely ZILCH

Also how can we move forward if what you are suggesting is practical solutions and people to contact locally to me ..........when there is no one ?? There is NO ONE in Cornwall who is ever going to be of help to me  re living with HIV

As I have so far tried them all.
As you can see, I started writing on this blog as someone half way sensible and with a brain ......
Nearly 2 years later into my diagnosis of having HIV - I have finally lost it !!!!!!!!!!!!!!!!=
I always sad you have to reach rock bottom to find a way up - hopefully I will now find a way forward 

As the first step is accepting there is no help, support or rather just plain empathy for my situation, for me out there, not for me or my husband actually  if we could be of any use and find  a useful role we in HIV awareness etc we perhaps could cope with that


But no one wants even/especially this from us!

Depression has Hit

When I was first diagnosed, after the initial shock I thought I was coping wth this so well.
And I sort of did not understand when some with HIV said it took them 3 to 5 years to accept their diagnosis and to find a way to cope - or that long to decide to come out about being HIV.

Not being out I understood that this was a choice and notal woudl be out abotu being HIV+ or could be due to their own personal situation and circumstanses .
But to be honest it never relay entered my head NOT to be out abotu being HIV+ .
I honeslty could not see how it would be any different form havign a number of lifelong or incurable illnesses?

Call me naive - as I obviously  was and am.
It is to late for me to go back on being out now
And really I do not regret that decision.
What I do regret is that in deciding to be out about being HIV has seemed to have alienated me from all others in my area of the UK - Cornwall - who also have HIV?

Sadly while I knew that living with HIv would not be easy, I naively expected to gain a network of people in Cornwal who were also HIV+ to relate to for peer and mutual support
People I could have a chat with when down , those who I could share the particular aspcts of living with HIV that it is hard to understand if you are not HIV.

And indeed I know I am certainly not at all alone in having HIV in Cornwall. There are loads of us here.
But not one seems to want to relate to me as any kind of friend.
The source of my depression is feeling currently so isolated.

Those who I know who do not have HIV - and that is everyone really I know here in Cornwall an who are near enough to meet face to face, apart from my husband and a couple of others I have met often very briefly - have been great and have tired , but do not really understand, or if they do I do not feel they do.
None have openly at least discriminated or stigmatized me - but at the same time few bother to ever contact me or relate to me anymore, so I feel totally isolated.

And those in Cornwall who do have HIV seem to not want to know me at all becasue I am open .

Its the pits.

Life & death

Life & Death

HIV
For me
Despite knowing I have the drugs
Knowing I will live
For now at least

Still
Means

Living on the borders of life
And death

However well you are
…….being HIV throws life and death into clear relief

Life is with you always
But so is death

Atripla Dreams

Atripla Dreams

Faceless dreams come down to bare
Affect how I feel
Whether waking or asleep

Its night now
……….. Atripla dreams are almost here..........

Again
Subconscious fears that never were
Before

Of Course
A choice between
Living and dying
I’ll take the dreams learn to cope
Better than an AIDs death
Better

Than denying the drugs and living with fear and no hope
Atripla Dreams

Mine for Life
But thanks to them

I have my life
______________________________________

Atripla

For those of you who do not know what it is, Atripla is the drug I currently have to take every day to stop HIV multiplying and taking over my cells and to delay the onset of AIDs.

Although it is marketed under one name and as one drug - it is in fact a combination of three very powerful drugs.

Atripla is a fixed dose combination of 600 mg efavirenz, 300 mg tenofovir, and 200 mg emtricitabine.

http://en.wikipedia.org/wiki/Atripla

All very powerful drugs that effect your body at a very fundamental level - at a basic cell level, which includes your bran function too, but they do keep you alive.

And thankfully medications have improved so much since the early days of HIV medications - my heart goes out to all those - and I now know many - who have survived HIV and the 'terrible' earlier meds - many of whom can not take a modern drug like Artipla due to drug resistance built up over many years of taking the older drugs ( which are related to or derived from the modern ones in many cases so if you have been on HIV meds for years. this can cut down your treatment options drastically and Atripla is most often only for those like me who have only recently gone on meds )

And the Atripla combination is one of the most well tolerated in terms of physical side effects i.e i get diarrhea and nausea but at a much more bearable level to what other drugs may give me .

I DO NOT want to put anyone off taking this drug - or ay other HIV ARV medication .

Atripla is comparatively well tolerated and any HIV med it is far better than getting ill with AIDs related illnesses - both me and my husband have been there - my husband more than me .
And so MUCH better than dieing of AIDs

And if you do not take HIV meds - once you get to the point you need them ...........................there is no other end game but AIDs and death !! Don't fool yourself , without the HIV ARVs that is the only end.... with them you can live a healthy and relatively 'normal' life

MY message - if you have HIV - take the meds!!

And Atripla is one of the best meds we have and one of the best tolerated - but what you take is down to your medical advisers always.

But for many one of the combination's of the drugs in Atripla can give you amazing, weird and for some, frightening dreams .
http://forums.poz.com/index.php?topic=26684.0

It is this I wanted to write about in my poem above

Some this is so bad they can not take them at all. And have to go on less effective HIV meds.

For me the dreams are weird not frightening and while they certainly affect my waking and sleeping life - they are not usually frightening and for me it is not every night I get them .

I get them more if I drink alcohol and sadly I DO drink alcohol - if you have HIV and can manage not to drink and smoke like I do it will be better health wise

But I do not do this blog to pretend I do it all right - This is about me - WARTs and all , living with HIV !!

I can tolerate this as I prefer this to having more physical side effects that some other HIV meds may bring.

But NEVER underestimate if you do not have HIV the effect that living with HIV and taking the meds can bring.

Those of us who have HIV it is too late and unless we are in denial of taking the meds we take what we can and need to stay alive and to continue our life.

And surprisingly as it might seem from the outside may of us have very good and productive lives

But it can be an added burden to live with theses dreams - even if only intermittently in my case - that a drug like Atripla can bring.

Or living with other side effects if you are on different HIV meds, as all affect your body and mind at the deepest level

None of your life if you have HIV will ever be normal - so the best I can offer
Is never get HIV - always protect yourself if you possibly can!

But at least with the drugs you will have a life - and often a very good one

- MINE IS DESPITE ALL

HIV Poems

I am NOT a poet!!

Never was and never will be
But thought I would have a go at writing about how it feel for me to live with HIV
Not in my usual - long winded - way
but via poetry

I will post my efforts

If anyone one else living with HIV has written poems about their HIV experience or would like to try .

I would love to post them here.

Jenny's HIV Photography Project

Jenny has posted her request for volunteers for this herself on the HIV West Country Woman's Forum : http://hivwomenwest.proboards.com

And I just wanted to say I have met her and think it is a great project - so if any women from Cornwall and the West Country especially want to get involved please do not fear exposure or you will be treated unsympathetically - as you can remain completely anonymous and her attitude is great.

So I have decided to work with this lovely young woman in her final year of a photography degree in the Uni down the road from me who has already done some great work with people waiting for transplants and now is doing a project on people in the UK living with HIV for her final year.

Her interest... As I understand it -

She has spent time in Africa with children with HIV where she became aware of HIV and now wants to reflect - through images and accompanying text- the true picture/situation of people living with HIV in the UK.
She is happy to do it completely anonymously and if anyone agreed to be photographed she can do it in such a way that you are not identifiable. Would like to meet with people but happy just to talk on email etc.

She is at college near me in Cornwall ( Falmouth Uni) so is happy to talk to people from Cornwall but can travel to meet people depending where they are based and as she has links with Bristol and Exeter is particularly keen to meet up with those living with HIV in Bristol and Exeter, especially women.

But if you do not live in Cornwall, Exeter, Bristol, or the the West Country at all I am sure she would still love to hear your views and experiences of living with HIV in the UK. Which even if she can not include photographs based on your experience, what you say I know will inform her work.

I feel we with HIV so need to help and assist young people like this who are interested in the subject of living with HIV from the perspective of what it is actually like and what the reality is now .

As young people are our future, especially young people who are training now to have posts/positions within the media of the future

She is a lovely young woman who would do this well.

Below is her proposal I said I would pass on.


My name is Jenny Cowie and I am a photography student in my last year at Falmouth University. I am currently trying to do a project that hopes to raises awareness about HIV in more rural areas. I don’t think that the general public are aware of anything but the stigma related to HIV and AIDS. Since I began this project and started talking to people I have been shocked how much my views have been affected by stereotypes…and how wrong I have been!!

Remaining anonymous is not an issue. I would just like to meet people, hear their stories and see how they think HIV could be better represented so that it wasn’t such a taboo.

If you are interested and want to look at some of my work please go to my website http://www.jennycowie.com/ (pay particular attention to Waiting…)

You can contact me on 07817785170 or jenny.cowie@hotmail.co.uk

Regards

Jenny

Caja -Sad circles within circles

It is good that my lovely Caja will not read this !

She will not as she has deleted me from her Facebook and has understandably long preferred not to read what I blog here.

So I feel it is 'safe' for me to post it here - I so hope because I do not want her ever to read this. This is for not her and it is NOT her concern - it is my stuff.

Sadly, when I made my life so public in order to lend support to others who suffered PNI - Post Natal Illness - unfortunately the side effect I did not predict was I made my very private daughters life public too........

Part of the problem between us is she is a very private person and I am so totally the opposite as you may have guessed!

If I was not a public person I would not be blogging my life for anyone who wishes to to read.
Caja hates this particularly about me

As if I disclose about my life inadvertently I disclose about hers . So she now chooses to tell and share with me as little of her life as possible.

Understandably as the little I know the less of Caja's life I can disclose when blogging my own

That was not fair on her and one of the reasons I can no longer go on the forum I created for http://www.pni.org.uk
It is a never ending destructive circle between me and Caja regarding our relationship .

If I am to have her trust I need to not be myself - something I can not do.....sadly not even for her.

So we go round in never ending circles - with me getting sadder and sadder that she does not love me just as I am for what I am or despite who I am , and thus writing about my sadness online and blogging it more and more ..............

and this leads to her being less able or likely to relate to me because she is a private person who will never relate to anyone emotionally who is public about their emotions and private life
_____________________________

So understandably this morning Barry is not speaking to me !!
And I have to stop upsetting him like this as he is all I have left now.

As when doing a montage of our family photos for my living room I got so sad and freaked out last night and told him my life had come to nothing because my daughter does not even speak to me - and in part blamed him when in fact it is not his fault at all - he did his best and we can only ever do our best

The trouble is I really do not have a normal relationship with my daughter - and right now that is all that is important to me - that I make my peace with her and have a bit of a normal relationship with her.

For example.

She stayed here in early summer this year for 4 days - not to see us but to see her childhood & other friends. She hardly spoke to me and when she did it was basically just one word and made it plain she wanted me to stay out of her way. I tried to hug her a couple of times and she just pushed me away.
I felt so hurt it was painful

Since then - about June and it is now October!!!- I have not heard from her in any way or had a single conversation with her. I have tried .....I have MSNed her and texted her but she never replies....

I accept that she has left home - and as she pointed out a while back ............ she left home when she was 17 and is now 20 so it is about time I accepted this ......and she now lives over 260 miles away and does not want to speak or relate to me.

So I have to find a way of coming to terms with this!! - But it is tearing me apart and it is tearing Barry and me apart

I know in the cold light of day it can not be all my own fault or Barrys i.e the situation with Caja but I do know that half the problem was how angry I get when I have had a drink and that towards the later part of her life with me when she would do nothing round the house and my leg was so painful I could not do it, I was OK until I had a wine or two then I would get nasty and this drove her away - so that was so totally my fault.

But I am so sad.

I had dreams of a time Barry would be home full time - but not like this............... not due to HIV - and a time when we had paid off our mortgage and we could enjoy ourselves as a family.

I knew Caja probably would not be living at home by then but I was looking forward to lovely visits when she told me about her life and what she was doing and hugged me hello and goodbye .

Not the situation I have now that Caja does not talk to me ever

I am feeling so sorry for myself - which while this may be hard to believe from my ramblings here, is something pretty new to me as I never used to indulge in self pity - Up to about 4 years ago I just trucked on.

Oh Dear - Not much hope for us then !!!

At 56 I already have memory loss and my mum died of Alzheimer's/Dementia (they did not bother to diagnose exactly what she had - too late by then all they knew is she had lost her marbles and needed round the clock care )

So with this family history and HIV I do not hold out much hope of my keeping my my wits for that much longer. Anyway it is all too obvious to me that they are on their way out already

So I had better break the habit of a lifetime and vote conservative so at least I will get cared for in a care home if I pay £8000 without my daughter losing our family home!

: http://www.timesonline.co.uk/tol/news/politics/article6862458.ece and pay what top ups I need to.

It is my biggest fear I loose my mind and end up with HIV in a care home!!

Do not tell me I will be respected? Or that I will not even be abused - I have seen it first hand , so you will not convince me .

I worked in care homes when young and visited elderly people I know often over the years

Also both my mother in law and my own mother were in care homes and while I guess my mum got better care than my MIL neither was what you would wish for......all was lacking in so many ways

But with HIV I know that I will never be treated with respect
___________________________________________________________
Neurologic Disease Facing Patients Aging with HIV

from Jules Levin

By now it's pretty clear aging with HIV and getting to over 55 yrs old is putting many patients at increased risk compared to HIV-negatives for frailty, increased neurological disorders and cognitive impairment, kidney disease, CVD, and of course bone disease and fractures.

Mortality will start to increase soon as a result of this development while we have been blindly rejoicing the success of HAART for years. BY devoting all our resources overseas we lost sight of these developments, and like turning an ocean liner around it is difficult now to get the NIH & NIAID to refocus effectively to address immediately tis time sensitive problem, if it's not too late already. the fact is currently it's estimated 20% with HIV in the USA are over 50 yrs old and by 2015 50% will be over 50. For the first time a significant portion of patients are reaching 65 yrs of age and facing increased HIV-related risk for vascular disease due to ARTs and HIV.

Mitochondrial toxicity has been present for 20-30 years for many patients. Abnormal metabolics including lipoatropy are threatening to cause neurologic disorders for older patients.

Frailty and gait disorders are emerging in older patients and in MACS. 60% of patients at 45 yrs old on average have osteopenia and 15% osteoporosis, isn't that stunning. It is time not to say we are aware of this, as researchers are saying, but it is time to declare an EMERGENCY situation before it's too late, it's already very late to or too late for many patients to benefit from research in this area.

What is the NIH thinking, where is leadership? Researchers, doctors, patients, and advocates should raise their cries for a declaration of emergency to address this NOW! Let me briefly mention HCV coinfection. 10 years ago I raised discussion about this problem that 30% had HCV in HIV, that 80% of IDUs had coinfection, that we were ignoring the needs crying out for greater attention. HCV became the leading cause for death and hospitalization besides AIDS. This problem persists, patients have been dying of end stage liver disease and the Federal government and advocates never launched a proper response. Will the same thing happen regarding aging?

Neurological Impairment Persists Despite HAART: "adjunctive therapies needed" - (08/29/09)

We need a proportional response to the level of problem we face
"The results of this study extend previous observations indicating that current HAART regimens are inadequate to treat HIV-related NC"...."These findings indicate that patients with more severe memory impairment and executive dysfunction are more likely to remain neurocognitively impaired despite HAART"

Mechanisms of Neuronal Injury and Death in HIV-1 Associated Dementia - (10/24/08)
Infection with the human immunodeficiency virus-1 (HIV-1) and acquired immunodeficiency syndrome (AIDS) remain a persistent and even growing health problem worldwide.

Besides its detrimental systemic effects on the immune system, HIV-1 seems to enter the brain very soon after peripheral infection and can induce severe and debilitating neurological problems that include behavioral abnormalities, motor dysfunction and frank dementia.

( yes I feel have this already can feel it it is so sad )


Infected peripheral immune cells, in particular macrophages, appear to infiltrate the CNS and provoke a neuropathological response involving all cell types in the brain. Both viral and host factors, such as the viral strain and the response of the host's immune system, strongly influence the course of HIV-1 disease.

Moreover, HIV 1-dependent disease processes in the periphery have a substantial effect on the pathology developing in the central nervous system (CNS), although the brain eventually harbors a distinctive viral population of its own. In the CNS, HIV-1 also initiates activation of chemokine receptors, inflammatory mediators, extracellular matrix-degrading enzymes and glutamate receptor-mediated excitotoxicity, all of which can activate numerous downstream signaling pathways and disturb neuronal and glial function. Although there have been substantial improvements in the control of viral infection in the periphery, an effective therapy for HIV-1 associated dementia (HAD) is still not in sight. This article will review recently identified injurious mechanisms potentially contributing to neuronal death in association with HIV-1 disease and discuss recent and prospective approaches for therapy and prevention of HAD.

"Mood changes approaching the extent of disorders are one of many problems associated with HIV-1 disease"

(God mood changes - tell me about it!
I have suffered this for over 7 years now! Yes you may say it might not be due to HIV , but I think it is . And does it matter what it is due to, I am suffering this and it is awful for me right now as I am all too aware it is happening to me right now )

"Neuronal death by apoptosis appears to be one of the hallmarks of neurodegenerative diseases including HAD"
"While HAART has tremendously improved the treatment of HIV-1 infection and disease in the periphery, an effective pharmacotherapy for HAD (HIV-associated dementia) is still not available."
"HAART is unlikely to prevent the entry of HIV-1 into the CNS"

"Neuronal damage and loss has been observed in distinct brain regions, including frontal cortex"......"signs of neuronal death were not clearly associated with viral burden or a history of dementia"...."aging-associated amyloid accumulation with Alzheimer's-like neuropathology"..... "Altogether, it seems that a vicious cycle of immune dysregulation, inflammation and BBB dysfunction is required on the side of the host to allow sufficient entry of infected or activated immune cells into the brain and to permit neuronal injury"
"These findings suggest that inflammatory cytokines, including TNF-aand IL-1beta, may have important regulatory roles in HIV-associated neuropathology"

The prevalence and incidence of neurocognitive impairment in the HAART era ACTG Research (08/30/07)

Even with HAART therapy, our data suggest that there is a significant subset of subjects on ALLRT who have mild-to-moderate neurocognitive impairment, and a subset that develop impairment after starting HAART. Additional studies are needed to understand the mechanisms behind neurocognitive impairment and to develop strategies to prevent and treat this condition."

HIV and Aging: The Long-term Consequences of Successful Antiretroviral Therapy - (09/11/09)

Study in Neurology journal (Aug 2008) Reports Alzheimers Appears to Precede Frailty and Study in Jnl of Geronotology (2007) in the MACS Cohort Reports Risk of Frailty Higher in HIV+ vs HIV-; is early onset of Alzheimers or some other brain or cognitive dysfunction related to early onset and higher rates of frailty among HIV+? - (06/08/09)

Higher frequency of dementia in older HIV-1 individuals The Hawaii Aging with HIV-1 Cohort - (11/18/08)

Dementia with features of Alzheimer's disease and HIV-associated dementia in an elderly man with AIDS (case study) - (05/13/09)

Neurologic Complications of HIV Disease and Their Treatment
The widespread use of ART has led to a decline in the more severe neurologic complications
of HIV, such as HAD, but people living with HIV continue to ...
www.natap.org/2009/CROI/croi_185.htm

HIV-1 Infection Is Associated With an Earlier Occurrence of a ...
"We examined whether the FRP was more likely to occur among individuals with comorbidities of cancers and neurological disorders, ascertained according to ...
www.natap.org/2009/HIV/042009_12.htm

Neurological/Cognitive Impairment on HAART: 50% on HAART have ...
Many factors likely contribute to ongoing neurologic complications despite the ability of current drugs to profoundly suppress viral replication. ...
www.natap.org/2008/HIV/121008_01.