Wednesday 2 April 2008

Barry took that letter to the Clinic today

Barry took that letter to the Clinic today.

He gave our consultant the letter and gave a 'shortened version' so she would not have to read it then and there.

Apparently she said fine to medication for me - that she understood my position in wanting to wait,
that I wil have to drink less if I am to take it - fine I can do this :-}
and that I need to spend some time with the pharmacist to choose what HIV meds are right for me - that is fine too

And has made an appointment for me for next week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The questions I have to ask - are

If the HIV consultant is fine with my taking meds and was not under the impression that I had refused them

Why dio the specialist nurse say otherwise????????????????

If it is not a problem for me to take my time and get to the situation that I want to take meds at my own pace
and if an expression at any point that I am not sure about taking HIV meds DOES NOT mean I can not change my mind at any point.............

Why did the HIV specialist nurse when I phoned on Friday say that I have refused meds altogether and this would cause 'problems/compromise' .........the consultant
and leave me......................................


Totally terrified and traumatised since Friday afternoon that I have jsut been left to die with no medication?? As I did not otherwise have an appointment until another 3 or so weeks and in the meantime I am having no HIV treatment


Until when I got up the courage to send the letter to my consultant with Barry when he went today?

Did this nurse not understand the effect her words would have on someone in my position? How it would distress me for a whole weekend and cause me to feel desperate

maybe not????????

I am going to have to learn to treat both this illness and my visits and communication with the clinic, from now on in a 'businesslike' way.

And not let my emotions come into it in any way.

Bloody tall order given what HIV means to me and my life - but it looks like it is the only way ?through

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