Refferals

Last week I went to the Doctors to see about some referrals. The lady was lovely and took lots of time with everyone (which is why she always runs late). I explained where I had been and what referrals I wanted. I am making attempt two at a psychiatry referral, nothing to do with aniridia per say but it is well recorded that there is a higher incidence of mental health problems in people who have disabilities. I think when you fight each day to keep your independence it gets tiring and having a pre-disposition to mental health problems can sometimes tip the balance. Right now I am well enough to function to a point and I just need help to keep that way. unfortunately you are seen as well by mental health professionals even though you hang on by a thread and the support you get from others drains them.

As I thought a GP cannot prescribe melatonin so a referral is going to the regional sleep clinic to see if they can help.

The GP checked and they cannot routinely order vitamin D levels from the lab (no wonder half the uk population are deficient, no sun or tests!). She needs to ring the lab and find out, so I need to chase that up.

I will also get a referral to fertility to see if they can help me or whether they want to wait until we are ready to start a family. It would just be nice to ask some questions.

I also had another proteinuria test because she couldn’t make sense of the US levels. I am sure it will be fine as protein only showed up in the 24 hour urine collection and not the samples.

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Beth@NIH 11: Results

I have a small pineal gland which is usually the case with people who have aniridia.

I have low vitamin D levels (probably because I live in England and I don’t go out in the sun much) I have some tablets to take and then I need to get my levels checked and take a supliment if they are fine.

One lot of cholestrol is high which is due to obesity, it’s strange as I don’t eat much fat but I have eaten more fat here. I also had a few high blood pressure readings but I think that is probably stress as at home they are usually perfect.

I have protein in my urine but apparently although it is high for their lab it is not high for other labs and the nephrologists aren’t concerned. Strange because it isn’t the protein which is related to obesity! But it is nothing to worry about.

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Beth@NIH 10: More blood and discharge

Group photo

Subu, Dr Jee, Shannon, Me, Joan and Mark at NIH outside my room in the Metabolic Unit

Mary got me up at 5.30am to wee but unfortunately I lack the ability to do this on command so they had to wait until 8am! lol! I had to rest in bed until 7.30 when Shannon came to put the oxygen hood on. She said she tells the little kids they are going to ‘Go to space.’ It was a very boring test.

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Beth@NIH 9: Blood, blood and more blood

I had to fast from 8pm and get up and go to the ward early with the last of my 24 hour urine collection. Phew!

Nutrition came and tested my body fat and then needed some more information about my food basically because they didn’t know what some things were. She said my diet was good and varied but they need to test further. I think they will come back and say my portion sizes are too large. I know what I need to do to loose weight and I am going to do it. Their plastic food objects are very bizarre though especially the burger!

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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.

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Beth@NIH 7: Occupational therapy and hearing

So Josiah took off all the glue from my head with something that reminded me of nail polish remover. My hair was soaked and horrible and all the stickers on my face had to come off too. While this was happening the nurse decided it would be a great time to come and take my vital signs. Having your blood pressure taken is just what you want at 6am when they are scrubbing your head to get the glue off! lol Then they wondered why I was in a hurry to get downstairs.

I was taken down and then I begged to go to the lodge and get a hair wash, a shower and some clean clothes as I felt awful on only 3 hours sleep (Josiah told me). They made me wee as I had started 24 urine collection. I escaped and had the most wondeful 3 hair washes and one conditioner and a looong shower. I then got a latte and a danish pastry for breakfast from ‘Bon au Pain’ as I’m not keen on the breakfast here. Bon au pain trainslates as ‘good of bread’ which makes no sense at all! I felt human and came back over to the ward so I could go to occupational therapy.

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Beth@NIH 6: P is for pictures

P is for pictures

There is nothing like spending an hour in the MRI scanner trying to keep still and not being able to move to make you all achey. Apparently I had the wiggles on one set of pictures and I think that’s probably because I jumped at one point as I was dosing off and the machine started off again loudly! Anyway the good news is I do have a brain folks. 🙂

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Beth@NIH 5: Weekend

On Saturday I got up and managed to chat to my parents and Graham on msn. I went over to the hospital cafeteria which was the only food place open. The pancakes were tasty but the bacon was too greasy.

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Beth@NIH 4: Food

I got up early on Friday and headed over to the ward. I ordered my breakfast and the nurse asked for a phlebotomist to come and take my bloods this was at 8.15am. My breakfast arrived at 9am but I couldn’t eat it until I’d had my fasting bloods taken. I waited and waited and then Jamilla came to take me to my MRI. It was long and hard to keep still and concentrate on breathing in and out when you feel hungry! The phlebotomist had caught up with us at the mri waiting room and told us to come along after. The MRI people were supposed to do my ankle but theyn decided they didn’t have time as I had a dental appointment.

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Beth@NIH 3: Numbers, Words and Numbers I

I got up and came over to my room and ordered breakfast so that I could eat and get to my 9am appointment. Unfortunately it didn’t turn up until 9am so Shannon helped me carry the pancakes and my two cups of english tea (I brought my own teabags! lol) down to the testing room.

The neuropsychological testing looks at things like IQ, memory recall, mood and emotions, and other tasks such as being able to define words and remember facts given to you in a story. The testing lasted 4 and a half hours and we did lots of tests and had a good discussion about my mental health which was heavy going but she might do some more measures with me to confirm or eliminate my current diagnosis.

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