Hospital Stay Uncertainty and Packing Woes

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793
lottagelady
Sep 13, 2010 8:13 pm

Right ... nearly all packed into one pretty large suitcase, which of course you aren't allowed to take into the hospital, but I am afraid I do not travel light! The problem is, I really don't know exactly what is going to be done or how long I am likely to be there ......



Stoma kit - enough for 10 changes
Medication - enough for 10 days
CPAP machine and mask
Usual hospital dressing gown, slippers, books, food and drink (as theirs is mush ...), pen, crosswords, etc. etc. ...


Now, just need to get through my MRI scans, sensory evoked potentials, and visual evoked potential tests (whatever they are?) tomorrow at the National Neurological Hospital and then call UCLH to see if I have a bed for surgery Wednesday morning ......... hope to have internet access so will keep you posted when I can!



Bye for now ......



Rach xxxx



Past Member
Sep 13, 2010 8:25 pm
We'll be thinking of you Rach, you will be missed here!

Big hugs and Best Wishes,

Jo xox
Past Member
Sep 14, 2010 10:37 am

Good luck, Rach.
You take lots of things to do, as we all know it gets really boring in the hospital.
Hugs, Ria XOX

Posted by: ejbetty

Geekyjen,

Thanks for the reply.  I will be seeing my doctor on Friday and mention Entyvio.  I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared.  The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade.  Turns out I have been diagnosed with LUPUS. It is attacking my nervous system.  I had ulcerative colitis in 1996 and they had to remove my colon.  Had a J pouch for 10 years, until it started failing.  I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently.  I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared.  I have had two hospital stays now because of the blisters and the paralyzing incident.  I will be dealing with this forever now.  I have just been working on acceptance.

I love this website because of wonderful people like you!

 

Betty

beyondpar
Sep 14, 2010 1:29 pm

Thinking of you and sending some good love vibes your way... I believe in all of that. Talk to you when you are out and healthy. Love, Michael