EB - Natural Version

What a day!  It all started fine, and I had a call from BBC Radio Bristol asking if I was happy to join and talk about dementia diagnosis. I asked Mr T if he wanted to say hello. The radio host is great and when I mentioned before we went on air that he would say hello, they included him in the interview! He's on about 10 minutes in after Modern Love by David Bowie.

That was the highlight! I managed to trim the in situ panels in properly. Then after lunch Sirona called to say the DNs weren't coming. They had decided he didn't need a visit, even though he is having more confusion (we have been at the train station with trains in the room since just before lunch) and he has been having pain and a lot of sediment. So I was told as I don't phone them they will think there are no problems. I was getting annoyed by now and so I said instead of doing the tricks I've been shown do I need to call you every time? The slightly sarcastic response was if that's what you want to do! My reply, no I don't but if that's what I have to do so Mr T gets the clinical care he should then I will.

Then ended up really mad with the pharmacy as for the third time in three months he's run out of medication. I didn't trust them so had phoned earlier in the week, and was assured there was "no problem". Unless you consider the order being cancelled and nothing done no problem. Their attitude makes me cross as I explain that he has run out and I get the response to ring back on Monday! I demanded to speak to the pharmacist and insisted as he was a delivery patient it was their responsibility to fix it. They brought some medication soon after!

If I had rum I would be having it with some coke.

Over two hours and still waiting for the emergency catheter response.