Beth@NIH 8: Testing, testing 3,2,1

I woke up bright and early and got a latte again. I had to lug over a huge bottle of urine for the end of my 1st 24 hour collection. I had to take it to the mall with me but luckily it was in a blue bag and I didn’t need to use it. I also brought over my washing as I had no clean clothes left.

I went to audiology who let me have a sleep and again my perfect ears came up trumps. I then went to the second half of neuropsychological testing which was more fun than the last as the test was practical. It was really interesting with my psychologist head on to see what an IQ measure for the blind ‘looked’ like.

I then had cheesecake for my lunch which was very yummy indeed but so rich I didn’t need anything else.

I had dental and I have none of the craniofacial features of WAGR syndrome. I have lovely teeth but have a bit of infection behind my wisdom teeth which he thinks I will need out at some point. I explained they are not keen on doing this in the UK unless you get infection or have lots of pain. His reply was ‘They are obviously not bothered about being sued then.’. He was a very funny man and made Jamilla and I laugh lots.

I then went for my DEXA scan which was really quick but I had to wear one of those attractive paper scrub sets and shoe covers. I asked Jamilla if she could see my bones on the computer screen and she said she could and it was really cool. I didn’t get any results.

I went back and spoke to my mum and Graham and I knew physio was at 4pm but the nurse came in at 3.30pm and said ‘You must go now!’ and I went down and it wasn’t until 4pm. I had another panic attack because I hate change in routine, I hate being rushed and I hate feeling out of control. I took my meds and was told I couldn’t go to the lodge for two hours until they wore off. The nurse from earlier woke me up an hour later to say ‘you must order food now!’ I tried to explain several times I was going to order take away at the lodge and eventually it got through to him. Then he said I could go so me and my clean washing and another urine bottle escaped quickly before they changed their mind. The hospital can be noisy with people coming in and out to check on you and sometimes I need complete quiet to rest and sort myself out.

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About Beth Dawes

I have no eye colour but I do have an iPad, a guide dog called Annie and a pink long cane.
This entry was posted in National Institute for Health WAGR study, Patients' tales and tagged . Bookmark the permalink.

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