Monday, 31 March 2008

MRI Scan - another failure

I was sent to a MRI scan last week on Thursday night 7pm at the hospital which is about 20 miles away - yes 7pm!!! There is so much demand for the scanner as it is the only one serving a radius of about 100 miles, and not enough time in the day to fit everyone in they run it up to 9am in the week!!It was actually disastrous and Barry and I had a bit of a row !

I have never been able to stay in an MRI scanner for a head scan - I have had two attempts before as I have been referred for one due to memory loss and having gone blind in one eye due to optic neuritis twice. But I tried both times and just could not do it. If it was on any other part of my body I may have but a head scan is different.

Your head is put in a cage and you can not move and your head had to be right in the middle of the scanner and it is a narrow space that you can not get out of unassisted ( you have to press a button for them to move the platform out of the scanner) and your head is about 4 inched from the top of the tube and if you have never been in an MIR scanner you will not understand - but it is not unusual for people not to be able to do it especially if the scan is the head - apparently they have at least 5 fail to be able to do it a week on I know it is not just me?

Most people fail due to claustaphobia, which most did not know they had until they tried this procedure. But for me it is not claustiphobia exactly – I have been caving in my youth in very enclosed spaces and this was fine as long as I could move along and make progress and get out under my own steam – for me it is the lack of control, not being able to get myself out under my own steam – and having to stay still in that position for up to 20 minutes

But the reason it was so disastrous was when I was referred for this MIR - I told the HIV consultant that I have a problem with not being able to do a MIR scan and she said she would contact them with a view to my taking some sedation – intravenous diazepam etc

But when I got there they had heard nothing from her or anyone else.
It is one thing not being able to do it, but another telling my consultant the situation, asking for some help with it, yet getting there and nothing at al had been said to the operators! I felt I had completely wasted their time – and mine, and Barry’s.

I did have another go, hoping it would be OK this time and managed the first initial scan that only took 30 seconds – but I just could not do for any more time than this, as the rest of the scans would take at least 10 minutes and I could not stay in there another minute!!.

I was also told buy the MIR operators that they can not offer what I was suggesting i.e intravenous diazepam anyway. They can only suggest you get oral diazepam from your GP – which I did not suggest as I know it would not work but that intravenous diazepam I have had for many procedures and dentist ops, so I know this works.

But apparently they can not give you intravenous diazepam as they can not check your breathing etc while in the scanner due to it being magnetic resonance and so not being able to put electronic equipment on you while in it.
If I had been told this before I would not have wasted everyone’s valuable time by going to an MIR appointment as I would have known I could not do it!!!

Apparently the only way if you can not do it is to have a general anaesthetic – which seems over kill and I can not understand why that can not do intravenous sedation yet they can do an general while in the scanner?

Apparently it is something to do with the fact you breath on your own with sedation but with a general you can be incubated ( I think this is it ?)

Anyway I failed and it was a complete waste of time

They had my records that I had tried to do a MIR head scan twice before but failed to do it . And why did not HIV consultant send me anyway and not do what she said she was going to do i.e. talk with the MIR department first??

Thursday, 20 March 2008

Barry says he is a resilient bugger!!! - & his job

It has all been such a terrible shock. However I am now beginning to have hope

It seems that, as I have been told, theses days HIV - even AIDs as Barry was diagnosed to have - can, with modern medicine available in the UK, turn into a chronic/ongoing health situation like diabetes, rather than and immediate life threatening one.

It was not at all certain that this could be the outcome with Barry, although for me this has always been likely as I am not yet getting opportunistic infections and just have the usual problems people with HIV can have.

As Barry was not diagnosed until he was very ill.

However he is responding very well to the antiretroviral medication for HIV- so well the clinic says they have never seen any one's immune system rise so fast!! His CD4 counts at the last test had risen from 9 to 140, still not good or back to any kind of 'normal' level, but still a very rapid improvement.

As he says, he is a 'resilient bugger', and has gone from being considered to have AIDs to having a compromised, but rapidly rising immune system, so I think that for now the danger is over and we now have the task of living with this awful thing for as long and as well as we can.

I am not yet on the medications and it is my turn now to have a barrage of tests to estimate the state of my health and my immune system and to see when they will put me on the HIV medication - my tests start in earnest next week.

This is how I wanted it to be - I needed Barry's position to be sorted out/stabilized first before I could concentrate on my own health.

The only problem that we have now is Barry's doctor that does the assessment for suitability to go back to sea, says that if he continues to improve, with Chronic and controlled HIV he will not sign him off to be unable to work as a seaman and this will mean that even with HIV Barry would not get his seaman's ticket revoked so would not get his seaman's pension early and would either have to go back to sea or find a local job that would earn enough to keep us until he is 60!

I do bring in some money - but not enough to keep us in this house.

And he does not want to go back to sea!!

He is much improved but he still - no way - could do the 16 to 20 hour shifts he is required to do when working on board his ship. While he may improve further I really fear that even so to send him back to those conditions would shorten his life despite the HIV meds. Working in South America, Africa etc and flying in and out to his ship long haul on a regular basis, he will also have challenges to his health & immune system we do not have just living here.

In addition if he goes back to sea I will be left to face taking antiretovirals my mental and physical health and any side effects 'home alone' for much of the time. And side effects do happen -

Barry has them although for him they are reasonably mild they are still upsetting - diarrhoea, the odd bouts of nausea or vomiting - last happened yesterday night because he was tired and had not been able to eat due to being at the hospital most of the day for tests where he was not supposed to eat before, at the moment he need to eat regularly if he does not he gets ill - sleep disturbance, night sweats etc and there is no guarantee that mine will be as mild.

Also I need his emotional support.

Out of the two of us, Barry, due to his very resilient physical and mental health is coping with this - as expected - so much better than I am .

Selfishly I do not want him to have to go back to work at sea purely for financial reasons and leave me again alone here for months at a time.

If he became well enough, and I so hope that he does, I would be totally happy for him to get a local job in Cornwall, where he came home every night -

But as always the difficulty is that the sea and marine engineering is all he knows - and to get a shore job here in Cornwall, with the lack of jobs, his age 56, and his HIV status meaning that inevitably he will need more time off than most -

i.e. for hospital and HIV clinic visits and if he becomes ill with anything, gets a bout of nausea etc and his general tiredness - means that to get a different kind of job may be difficult. So if we can not collect his pension and he can not get a local job, be may yet be forced to go back to sea.

And surprisingly his current employers apparently would not have any problem with welcoming him back to his job at sea! Not that surprising I guess, as he has worked for them for over 26 years and he is a great worker - one of their best!!!!

They may have to transfer him to another ship if the ship goes to areas of the world where they do not let HIV people in - believe it or not many do not!!!

For instance the USA - where Barry's ship does go - do not let any national from another country with HIV, in without special dispensation - bloody bigoted of the US especially when they were the first western/industrialised country to get HIV and it often spread to many other parts of the world via people who had it in the US who travelled abroad - I am often appalled at the US in general for many things - but this is totally bigoted of that country and it appalls me!!!

This is the current position and thank you all for understanding and being there for me/us

Sunday, 16 March 2008

We have some members on the HIV Womens Network!

It is great that now two women have joined me on the Woman to Woman HIV Network.

I worked very hard yesterday to try to make both this blog and the forum more visually attractive. I will customise the forum properly when I have a few hours to spare as it does take a few hours

Sorry about the pink theme, it is not pink because I am a 'pink' person at all? . I used to hate pink when I was younger as the colour seemed to me to be a 'girly' passive, colour and I was not EVER that at all!!
However I have reclaimed it as an older woman and because I wanted a restful colour - so hence light pink - and I have used green on the PNI sites and Pink now goes with my hair!!!

Three forum posters may not seem like many - but it is a start! And most forums/boards start very slowly.

Years ago it took me about a year to establish the support forum for women with Post Natal Illness. For most of that first year there was only 4 of us.

And I have not as yet advertised this forum properly, as I just wanted to see how it went. But now will as I am sure that if I felt so isolated from other women with HIV to talk to for peer support and an idea about what it meant for them and how they coped with it, then I am sure many others feel the same.

I felt very alone, especially in the first couple of weeks of my diagnosis I so wanted to talk to other UK women and could not find anyone .
Anyway it is a good start and once it goes out on the KPS newsletter and perhaps on other organisations in Truro, Plymouth, Exeter and maybe Wales, I am sure it will pick up.


Wednesday, 12 March 2008

Mermaid Center for HIV? - Treliske

A thought from my last post

'They really should update the GU building as it being in a 'prefab' building, with no additional facilities such as alternative and other therapies and tucked away from the main hospital does not help at all!!I guess we all feel like lepers- hidden from sight when we have to go there? '

I know that there is a little money now been allocated to update the GU center - and as a client urge them to get on with this as soon as they can! The facilities you offer right now are absolute crap

Especially for the sort of illness HIV is .............

( by this I mean the building and the lack or extra/complementary therapies respite care/hospice and full time support - not the medical treatment as while I find the whole process of going to a dilapidated GU center to be treated for HIV awful and demeaning, I have not found the actual medical care offered lacking - in fact far from it. They seem to leave no stone unturned in exploring your health status and offer you all the medical treatment you could ask for. )

But ideally I would like to see a HIV center at Treliske like the Mermaid Center for breast cancer

I guess/know this would require people with HIV putting many hours of their own time into making this happen.
I am prepared to do this - or at least start the ball rolling and keep it rolling as long as I can.
If anyone else wants to start, get in touch

But the bottom line - I do not feel that HIV 'belongs' in the GU clinic.

HIV is not the same - the only thing that is the same as other STDs is the way it is acquired for many!!

HIV affects your whole life and it can be - and is - life threatening, unlike other STDs currently

Yes - syphilis was life threatening once and was something that affected your whole life and often your brain function etc - but it is not now- not for over a decade.

But HIV does - it is NOT the same as having any other STD

HIV needs it's own center in Cornwall!

Women's Network and the HIV Clinic

As you know I want to contact other women with HIV in Cornwall and have not as yet succeeded.

And the time I needed this most was when I first found out I had HIV.
But nothing like that, it seemed, existed!

So I decided to try to start such a network. I already had the support from some I had spoken to at KPS (Kernow Positive Support: )but had not become a volunteer or spoke about it in detail.

So stupidly - it seems - I brought the subject up at my next HIV clinic appointment- last week - thinking that at the very least they would be able to tell me a rough estimate of how many women in Cornwall have HIV.

So I asked my doctor.
She had a student with her. I asked her if she could help me with the rough numbers, or official statistics of women with HIV in Cornwall and if she could tell newly diagnosed women about the forum I had started here: and that I was trying to form a HIV Women’s Cornwall Peer support network.

I thought she could give me an indication of how many women - here in Cornwall and the clinic - sees with HIV - she said why? very 'suspiciously' and I said obviously - if there is only 2 or 3 of us - and I have no idea how many women with HIV there are in Cornwall - then all I need to do is try to contact them as there would be no point in a wider network.

I also said I thought she could pass the information on about the potential network to new clients
She pulled the 'confidentiality' card - even though I was not in any way asking her, or the clinic, to break anyone’s confidentiality!!

She then went further.
When my husband had gone out of the room - he comes with me to all my appointments to support me just now - and the student had left, she came into the room I was waiting for a blood test and closed the door behind her?

She said something like ' I do not think you should start a network - you are not in a fit state to do this' not the exact words but this was the meaning as I heard it!

I felt/am sure the assumption/worry was I would damage other women rather than concern about my own well being - but I may be misjudging this and she was concerned about me - I hope so – but if so surely it is my place to decide what is ‘right ‘ for me? Not hers?

I was incensed!
And also very crushed and upset – just what I need for my self esteem right now !!

To be fair I know that I have not been an 'easy ' patient, AT ALL! to deal with since I have been there for HIV.

It must have been very difficult for her - I would not want to meet me in that situation as a professional , but I would always do my best and NOT respond as she did. I do not feel she has really understood my situation from my point of view or given me any ' from the gut' empathy - that is all I ask.

Sometimes with people you have to drop just trying to protect yourself and see it- and their situation - as it really is for them! and acknowledge it!!

Cut the professional crap I am a 'professional' too - in my own field!!!

As while I have been VERY 'difficult' at times - just the same I do not think she should have made theses assumptions about my ability to initiate a peer network which would be positive for those involved - and if she did she should have kept them to herself?

This is not how I usually am as a patient. My orthopaedic surgeon Mr Norton who dealt with me for years over my leg will say I am a very cooperative and usually very polite patient – maybe a bit loud and ask for what I need, at times but not angry and was normally polite - but this is very different!!! HIV is very different!!

Partly due to the shame and stigma it carries - whatever way you acquired it.

There is no shame in having cancer or a shattered leg!!!

I have HIV now -not a shattered leg; it is 'somehow'? very different for me.

I have been very angry when I have been to the clinic, and I am sorry if that has made it difficult for her as my doctor - but has she not the 'people experience' to realise that this does not mean this is who I actually am!!

Nor is it a reflection on my abilities to start such a network.

And she should have the skills to understand that my anger while at the clinic is not directed to her, but to the illness itself and that I have to be at an HIV clinic at all!!! That I just do not want to be there – futile I know, but that is how I feel when at that awful HIV clinic!

They really should update the GU building as it being in a 'pre-fab' building, with no additional facilities such as alternative and other therapies and tucked away from the main hospital does not help at all!!

I guess we all feel like lepers- hidden from sight when we have to go there? I would like to see a HIV center at Treliske like the mermaid center

I had only just- a couple of days before - found out Barry had HIV the first time I saw her I had only just realised the impliation was that I would have it too!! And second time I saw her was so shocked and distressed that I actually did have it and did NOT want to be there and have HIV!

Also the second time I saw her was the first time I had been with my husband since he had admitted he had got HIV by being unfaithful to me! We have been together nearly 30 years, and I thought faithfully - so to say this was a 'life changing' shock is an understatement!!!!!

He had been in hospital ever since being diagnosed and had come out of the ward to be with me that day and until then I had only spoken to him on the phone or in a crowded ward.

So in the consultation with her there I said some stuff to him - it just sneaked out I was so angry - things like - if you had just kept it in your trousers we would not be here!!!

My doctor was basing some of her assumptions that I was not a suitable person to try and start this network on this!!

She said she had watched me 'abuse' my husband!!

I told him later and he laughed and said 'is she not in a relationship'! and she might see it differently if her partner had given her HIV and lied to her!

My assumptions are not about her relationship status , but that we just do not gel ...............she is OK with my husband who is just quiet and naturally polite - but she is NOT working class like I/we are and just does not understand that to us this is/was not abuse at all - but a totally understandable response under theses dire circumstances

GOD!!! I wish all doctors did not usually – at least in the UK - have to have money, a conducive lifestyle and home for studying and mostly come from middle class backgrounds to have the privilege of spending all those years training to be a doctor!!!

My ideal HIV consultant right now would be a white or black very working class woman, preferably from London where I was born!! or at least working class with some sort of regional accent and less of the 'plumpness' and and no expectation that 'politeness' is required all situations' .......................... even/especially this one???????????

Then me and my HIV doctor 'may' understand each other. But it is not to be!!

Yet this inappropriate 'politeness' was even expected by my HIV doctor from me, ( and she was not understanding of my lack of it) a woman who is in her mid 50s, sitting in an HIV consultation, who has just found she has HIV from her husband who she has been totally faithful to and is basically SHIT scared and in shock!!

So I realise I may get no help from the clinic for a Cornwall HIV Women's network ?

My fault - if I had known when I first went there that this was how it would pan- out for me as to what direction I would go next with HIV - I might 'might' have buttoned up my lip and given this doctor the sort of patient/doctor response she could cope with - too late now

I told her she was making assumptions and not to patronise me she has no idea of who I am outside the HIV clinic, or what I have done in my life or my skills or experience.

She said she only wanted to help people with HIV!!

That is as may be - but why then did she make such assumptions based on seeing someone in the confines of an HIV clinic only and when they were in great distressed shocked, vulnerable and defensive?

This is not at all helpful and also it is not helpful to just treat my HIV and not see me as a whole and rounded person!!

If she read this I am sure she would feel I was abusing her now!!!

But I expected so much more - yes I was angry but where else could I express how I was feeling in the first few weeks of being diagnosed? I could not even tell many, that I care for, at that time outside the clinic -I had not even had a chance to get a hug from my husband or talk it though with him and go through the range of emotions we had to - the anger and love we needed to do to come to terms with it!

Could she not see that what she sees in an HIV clinic is not who those people are?

That even if everyone else’s reaction is to be very controlled - as often people are in hospitals as they may be under extreme emotional and physical pressure – this does not mean that is who they are and they do not explode outside

Maybe she does not care as long as they do not do it when she is around!!!

In our culture ( British) we are taught 'not to make a fuss!! But my culture or the culture in which I was brought up in my family was different - I never learned 'not to make a fuss' it does not compute with me, when it is my issues I am dealing with .

But that does not mean that when working with other peoples issues - I am not completely capable of keeping my stuff out of it.

She made assumptions and I hated it!!

I cried - should not have but felt so vulnerable and attacked to my very core - not only do I have HIV I am now not capable of the sort of peer support facilitation work I have done all my working life both professionally and voluntarily.

But I did say I would be trying to start this network anyway - that she was wrong ( an basically it was not hers to make such a judgement anyway - but I kept that opinion to myself)

It did not end negatively as I then went to Kernow Positive Support

And they were much more 'positive' about the HIV Woman’s Network

Sunday, 9 March 2008

Happier times - we hope today is the start

We went down the local pub today, Sunday Lunchtime.

We did not have a meal as we are cooking it for later but Caja was working there so we thought we would go there for a drink

I would prefer to go out in the evening to this or other pubs but Barry is still too tired at night

Anyway he has never really enjoyed alcohol in the evenings much although he used to at times . Now he only ever has a beer at lunchtimes down the local and not hardly at all since he has been ill, and rarely now drinks at home. I of course do drink wine at home and prefer a drink in the evenings.

But recently he has not even wanted to go down his local - This weekend was the first time in months.

So I thought I would post some pictures of our walk down the lane to our local and the pub.
This is our local - it has not changed much since it was built over 300 years ago - above is the street in the 19 century with miners families in the street.

Barry out side

Me inside & Caja Serving her meals

The walk home!

Health Update - Barry and Me - Still Medical HQ!

Barry is a LOT better . They seem to have found the 'right' antibiotic to deal with his current lung infection.

I think at this stage the trick is to deal with any opportunistic infections with the right drugs for the job so that you do not succumb to them - and in the meantime wait for the AIDs medication to take effect and build up your immune system so you can fight them for yourself again?

And he is able to breath much better and is off the oxygen, although we have to keep it around in case he needs it in the future.

But he still has several hospital appointments next week - the clinic and 2 CT scans, one for his lungs as they do not think they have yet got at the root of his breathing problems despite that he is feeling better and one for his stomach where I think he has to drink a barium meal - I have had theses in the past for my stomach problems due to food intolerance - and hate them! Poor Barry!

I have several hospital appointments too:

Ophthalmologist as my eyes are not good - they are truly causing me some problems and people with HIV can get many eye problems including a nasty bacteria called cytomegalovirus (CMV) so they have to check for this and other problems.

About 75% of AIDS (Acquired Immunodeficiency Syndrome) patients develop eye problems of some sort. The retina (the light-sensitive membrane at the back of the eye) is most commonly affected. Tiny retinal hemorrhages and cotton-wool spots are early signs of infection and are often detected during an eye exam. A cotton-wool spot, which looks white and fluffy, is caused by a circulatory disturbance in a tiny area of the retina. This disturbance may also cause small blood spots or hemorrhages. Since other diseases can produce the same findings, cotton-wool spots and tiny retinal hemorrhages are not diagnostic of AIDS

Infection of the retina with the cytomegalovirus (CMV) is more serious.
CMV is known as an opportunistic infection because it rarely causes disease except in people whose immune system is damaged. CMV kills retinal cells by moving from one cell to another. The entire retina may become involved within a period of two to three months. If the infection does not respond to treatment and is present in both eyes, it can lead to blindness. Other infections of the retina, including infections with the Herpes virus, the parasite Toxoplasma, and the fungus Candida, can also occur in AIDS patients.

Of course I am not classed as having AIDs - only HIV but my T-cells are pretty low and these problems can start before this i.e when your immune system is low and mine is low - and it is worrying me because my eyes are defiantly not right, I have been concerned about this and my skin for about 3 years but never got any answers - now at least I know!

I do not think I have any CMV - just the irritating problems caused by HIV of dry eyes, and I do know already that I have the beginnings of cataracts - the optician told me this last year. Not that unusual in a woman my age but can be escalated by HIV and probably has been.

Barry has had his eyes checked already and his are fine - but them we knew they were as unlike me he has no eye problems

I have a MIR scan booked and an appointment for a liver specialist and a ultra sound for kidneys, liver and ovaries etc. I also have to go to my doctor next week for hepatitis immunizations as HIV people are very prone to this - Bary had them through his job to work abroad so he does not need this.

I also have to see a skin specialist on Tuesday because I have psoriasis and very dry skin - again something that many HIV people suffer and I have had this badly for about 3 years. I know that this seems a lot of tests but it is apparently usual for HIV people to have loads of tests when first diagnosed to get a good picture of how much the HIV has damaged your body and to act as a 'base' line so if you get problems later they will know how it has progressed.

In a way it is comforting to know everything will be checked as I have suffered from my eyes and skin for about 3 years before I knew I had HIV and despite going to the doctor and the optician many times for both I was not offered any help reasons for it or treatment.

At least now I will get all the help they can offer. So I guess it is better to know you have HIV so at least theses things get treated?

It is good news on Barry's Job front - as he has told his company and they have been surprisingly very good as they have given him full pay until June and then something called 'leave pay' until late August so we now have plenty of time to sort out our finances and claim his pension.

Perhaps I take back what I said about his company Maersk? As both I am Barry thought they would sack him, or at least not continue his sick pay because he has a clause in his contract that he will conduct himself in a 'sober' 'proper' and responsible way while on company time and away at sea or even on shore, in a country that his company sent him too to work. The HIV clinic also warned us not to tell his work until we had to as they said he may be sacked!!

And somehow we were both worried that going to a drunken party in Brazil, having sex while drunk with a local woman and getting HIV - would not be considered 'proper conduct!'

This is a HUGE weight off our mind to be ill and have money worries is worse than being ill and not!!!

Saturday, 8 March 2008

Recipe Book

Sorry I have not updated this recently but I have been concentrating on a recipe book we are doing for the Post Natal Charity to raise money for the charity

Adding to and editing this book has been helpful to me as recently my life has been nothing but this HIV and it feels good to be doing something practical and not related to HIV -

It has been good to get away from living and breathing HIV 24/7 .I also have some web sites to update which I will start next week

But doing this book has been more of a useful distraction than writing websites as it is practical as well as using my IT skills.

This is due to needing to cook most of the dishes I submit to make sure they work and I have quantities and times right and then take photographs of them to include in the book. I like both photography and cooking as hobbies so it combines the both interests.

However this book is not my book. Many of the volunteers for PNI ORG UK have contributed recipes, cooked their dishes and taken photographs as well as some have contributed drawings and their children have also.

I am only acting as the editor and adding a few of my own recipes. And one of the other trustees has already done a lot of work getting it into the shape and format we are using - it is a real joint effort !!

This book will be coming out in E-Book form only - it will not be printed and will cost about £5 to download. So if anyone wants to preorder and also help women with Post Natal Illness, let me know.

The book is great, really worth a fiver of any one's money!