Surgery nerves and Prof report

[Guest guest]

I just wanted to write a quick message to let you know that I wont

be around for a while after tomorrow as the hospital want me

admitted on Wednesday morning for tests, examinations and overnight

monitoring before my shoulder surgery on Thursday. I will be around

tomorrow, but probably be a bag of nerves so I thought I would send

a note and hugs to everyone while my hands aren't shaking too much

to type! lol

I am a bit nervous now to be honest I just don't know what is going

to happen in the surgery yet. I'm just praying that it works as

stabilising my shoulder would really help me to walk - sounds daft

doesn't it? But if I can use both of my crutches again I may be able

to avoid the wheelchair for a little longer and make it easier for

me to use a manual chair when I need to as well. So fingers crossed

that it works. Thank you for all your support and helping take my

mind off things - you really are fabulous people!! I'm hoping to be

home by the weekend if things go well, so I'll try to get a message

up once I get back. I'm hoping to arrange for my Dad to get a

message to a friend who can post for me following my surgery though,

so hopefully I'll be able to let you know that I'm okay! I'll

certainly try I promise.

Oh that's what I meant to tell you - I got a great four page letter

from Prof Bird today which is both helpful and scary. He is

incredibly thorough and covered every aspect of what he knows so far

and where we are heading with tests and probabilities. He confirmed

that I have a mutation of EDS 1 & 3 with Marfanoid characteristics,

and also pin pointed other areas of concerns including the risk of

Psoriatic arthropathy and HLA-B27 problems due to my levels and my

propensity for both due to my inheritance situation. (Psoriasis and

Chrohns) I'm particularly worried about the HLA B27 situation as I

have already had problems with sacro-illitis, inflammatory bowel

disease and arthritic issues in my spine. So I have to add another

battery of tests to the list following my shoulder recovery...I also

have to have a barium swallow and possibly endoscopies to check out

my oesophagitis problems too. Oh joy...

I'm feeling pretty uptight about where everything is heading and the

fact that Prof feels my Orthopaedic situation is unlikely to be

improved. But in spite of my fears and worries at the consequences,

overall I am just relieved that someone is finally believing,

understanding and doing what he can to help me with the few areas

that might be manageable. It's a big issue after 20 years of

misdiagnosis, mistreated and negligence that has severely hampered

my health and encouraged the progression of my condition.

Oh well, I'm trying not to think to much about what's in store when

I'm back on my feet, I just want to concentrate on getting through

this surgery and hopefully making progress form here. I am going to

miss you all terribly over the next few days, but please be sure

that even when I'm knocked out I'll be thinking of you all and

sending snoozy good thoughts your way! take care everyone and I hope

it's not too long before I'm back with you....albeit one handed and

trussed up like an oven-ready turkey! ;-)

Love and hugs always to my special CEDA`family,

Jo xxx