Today I have made myself catch up on some paperwork that I had been putting off.

Firstly I did some financial forms. If I had not done it soon we would have ended up with our income being stopped. I made a phone call and the forms were filled in over the phone. So that was one job done.

Secondly I decided to make the phone call my GP had suggested. The anti coag clinic I was attending have been very difficult and would not do a finger prick INR test. They also would not agree to me self testing, this was despite my specialist saying that he thought I should do this. He decided that I was a good candidate for self testing because he realised that I take responsibility for my own health. I make sure that I get the correct treatment. But the anti coag clinic I was attending would not allow me to have a finger prick INR and insisted on a full venous sample. I rang them about two weeks ago and said that I was not allowing them to do a venous sample on me any more. Every time I end up looking like a junkie with numerous holes and bruises on my arms. The end result was that they said unless I did what they say they would not treat me. So my consultant in London is not taken any notice of. He is a consultant at the centre of excellence and yet the local haematologist is able to over rule my consultants treatment. This is wrong and I just cannot accept that someone who has never met me can over ride my specialists treatment. It gets worse when I found out that the local doctor who is over ruling is the one who did the tests for APS in 1999 and even though I tested positive did not do anything. No second test, no treatment, no telling me that I had APS. She just let me continue to walk around with a high risk of having a blood clot. I had had small clots and also a pulmonary embolism before I saw her ten years ago.

The anti coag clinic have decided that as I have been told I have ‘lupus like symptoms’ that means I have lupus and so I cannot have my INR measured by finger prick.

My GP found out that there was a local clinic, nearer than the one I had been attending that did support self testing. So he wrote to them. Trouble is that they have decided to take the same stand about lupus and finger prick INR tests. So when I rang them today they said they will not allow me to go there either. I got them to agree that if I could get my specialist to send them a letter saying he was happy with a finger prick INR test, then they would accept me. After all it is only a mile to that hospital not the 8 miles I have been driving.

It took me about 5 tries at ringing the specialists secretary, but when I got through she thought it would be OK for my consultant to fax a letter agreeing to finger prick tests. I am not going to get my hopes up as too many times recently I have thought things were being sorted out and then they were not.

The last thing I did today was to book a blood test. I have not had my INR done since May, about 6 weeks, and so tomorrow I have to go and get a venous blood test. I am a bit worried about it. For many years I had a needle phobia, but managed to cope with it when I had the PE as I had so many blood tests I had to calm down. However the treatment I have had at the local anti coag clinic has got me panicky about needles again. I will not let it beat me and will get the test done. But I fell myself getting stressed. That annoys me as I see it as being  a wuss and I want to be stronger than that.

The weather has been cooler and wetter today than the last week. My knees and hips and back have been really sore today. But not as bad as my fingers. If this carries on I will have to use the software I have on my computer that means I can speak what I want typed and the computer types it. So far the accuracy has not been good. But then again my typing is not always good. Some days I type anagrams. Been doing that a bit with this blog tonight and keep having to spell check and change things.

Tomorrow I have the blood test booked, but apart from that I have a restful day.