Another long day at the hospital

[Guest guest]

Gosh, I am completely exhausted tonight after spending the entire

afternoon at my local hospital and visiting four different

departments all of which are at opposite corners of the sprawling

building! My poor legs were just about on the verge of collapse when

I reached my final appointment and the poor clinic nurse rather

hurriedly grabbed me a chair before I fell over! I really gotta get

me some wheels!

Anyway, my main reasons for attending today were my bone density

scan and my Rheumy appointment. The scan went reasonably okay not

taking very long once I was in position. It was pretty painful for

me though as I had to lie on a table with my knees bent onto a large

block to start with. Then I had to have my ankles strapped at an

inwards angle so they could scan my hips. This of course was very

awkward and painful for me given my rotational deformities, but I

managed to avoid squealing long enough for the scan to be completed

thankfully! I wont know the result of the scan for a while yet, so

it's the old wait and hope job. Fingers crossed it is good news and

many thanks to Rhea for encouraging me to get the scan done!

My appointments with my local Rheumy's are largely to provide a

regular check on my condition and a more accessible way for me to

report any problems or concerns I have, as although they don't have

the same knowledge as Prof they work in close contact with him to

make it easier for my condition to be monitored and saves me having

to travel up and down to Leeds quite so often. The guy that I saw

today though had actually trained with Prof Bird, so he had a much

better understanding of EDS than most of my local Rheumy team. He

was ever so nice and took a great interest in my problems without

being patronising. He was concerned about the escalation in my

symptoms especially my dislocation frequency and severity and the

falls I am having, making him eager for me to get down to stay with

Prof as soon as possible now. You know, it was reassuring to have

someone understanding the seriousness of my situation right now, but

also rather perturbing to have my fears about my situation confirmed

too. Oh well, here's hoping that my imminent stay with Prof can help

to control some of the scarier aspects of my condition and help find

ways to manage the inevitable deterioration I fear I can no longer

deny.

My Rheumy has also written me up for an urgent Barium swallow/meal

as he is worried about the increase in my nasty gastric problems

recently too. I have always suffered with acid reflux but all the

different combinations of control meds are failing to help anymore

now plus I am getting worsening symptoms now. I have constant

burning all the way up my oesophagus and into my throat, a

persistent cough from the irritation, chronic pain in my stomach and

chest area and most worryingly difficulty in swallowing food as it

is getting stuck. I can't say I'm thrilled about the idea of having

the barium swallow but the alternative is an endoscopy which I was

told is far too dangerous as it could easily tear my oesophageal

tissues... which I have to admit makes the barium sounds a whole lot

more appealing!! has anyone had experience with a barium swallow at

all? I'd be interested in hearing any opinion or advice on what to

expect - thanks :-)

Gosh, I really do feel like a lab rat right now and I'm seriously

considering just moving into my hospital - I had my bone density

scan today, I regular PT sessions, I'm awaiting an MRI and a Barium

swallow, plus more x-ray studies, a probable referral to a max-fax

surgeon and a review with Mac that will very likely lead to another

surgical date.... I swear these guys will know me inside out before

too much longer!!

Take care everyone and please know that I am thinking of you all.

Love and hugs....Jo

xxx