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Crohn's Disease
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Posted 8/17/2010 10:48 PM (GMT 0)
Sore hands today; can't type much; here are a few tlcs.


* be showered and dressed by 10.30
* find #
* ring J
* ring tradesman
* 3 appointments
* start making a new to-do list
* quick dust?
* lots of little five minute jobs to make things look tidier
* declutter five things
* write letter? (by hand)
* make bed
* dishes
* potter away at a long-term project


Ow! Sorry can't type more.

Ivy.
Posted 8/18/2010 2:31 AM (GMT 0)
My sleep schedule is SO off right now. I was up for about 22 hours, finally went to sleep at about noon, and woke up at 8pm. I don't know whether to just keep going as long as I can, or try drugging myself to sleep at a normal hour to get back to normal. This happens every time I'm hospitalized and frustrates me to no end!

Anyway, here's what's on my list of things to do:
*Go to Walmart (will have to wait until "normal" hours since I have returns and I don't think they do returns after 10 or 11pm
*clean stove
*rewrite follow up "thank you" note to prospective employer
* vacuum floors
*dust
*clean my bathroom

I have to pace myself and not do everything in one day or else I'll be lazy the next few days after I get things done. (It's a catch 22...I need to accomplish things to feel productive, but not do so much that I have nothing to do the next day)

Hope your hands feel better later!
Posted 8/18/2010 10:59 AM (GMT 0)
Oh ivy, my hands are feeling loads better now! You have my sympathy.
I got a letter in the mail today. It was from my consultant. He has finally come back off his holiday and gone over my MRI results. Despite all his 'big gun' meds, plus me being on pred at the time of the scan, i STILL had disease activity. I have shown almost no improvement over the last 18 months. He now feels that surgery is an option for me and is willing to refer me to his surgical collegues.
He's been quite honest in the letter, which is the longest i've ever recieved from him by a long shot. Its three paragraphs! I still have '30cms of distorted small bowel' which he has told me will definately been more and more narrowed leading to worse and worse symptoms.
So it is looking likely that i will be having surgery in the next 6 months.

Even though i know that really its probably the best option right now, i'm still really nervous. I'm making an appt to see my GI to discuss meds after the surgery. I'm hoping i can stay on humira after the surgery.

anyway, on to my TLC's

* get dressed
* shower, wash hair
* call hospital, make appt with GI
* internet research for surgery
* pop two coats into bag ready to go to charity shop
* clean both loo's
* get the cat toys out ready for kittens coming on sunday morning
* find the litter trays and get them bleached out
Posted 8/18/2010 7:15 PM (GMT 0)
Both of my surgeries were done without warning, and I almost think mentally that was easier for me. I didn't have time to think about it or prepare, but there was very little time for me to stress about it. At one point I met with my surgeon because my GI felt it was time to plan a surgery, and I was a nervous wreck.

You have to look at the quality of life you have now, and know that surgery will provide you with so much better than you have now. I know surgery is BIG, especially if you've never had one, but it can get you back to having a "normal" life again.

I think you have to skip a dose or 2 of Humira for surgery, but I wouldn't think they would want to switch meds after surgery....maybe after surgery the Humira will keep things in check.

I just woke up 30 minutes ago...at about 230pm...and am starting on my to do list. Got the dusting and some vacuuming done before bed last night, and HAVE to go to Walmart today....I have very little food to make in the house!

Oh, and choc, glad your hands are feeling better!!!!!
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