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London appoint went V WELL!

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Posted 4/10/2008 9:20 PM (GMT 0)
Hi everyone,
Saw the top doc at the Lupus Unit at St. Thomas's in London UK. He wants to take me in for a week on the 28th April.
I have decided not to fly home as travelling KILLS me!
He was just LOVeLY! ALL the staff at the hospital were fab, the receptionists, nurses etc.
Had alot of bloods withdrawn and I told the romanian woman to leave some in me!
She was nice, new to London and loves it.
I am very relieved to be here I can tell you. But waiting in outpatients, there appeared only one woman sicker than me and younger also in a wheelchair.
I was a bit down about that.
but still I have to hold on to hope and he DID too, say things were complicated.
I thought I'd brief ye as you are all a FAB bunch. I am lying on the most heavenly divine bed made of oh, what shall I say bubbles and down and feathers but all I know I have never laid on such a great mattress.
I am in a flat below twin as the woman who owns it has gone away for a week.
My GP told me on the phone when I rang her "I don't know who we can get to take you on to look after you when you come home" she was real pessimistic. Again real sensitive when I was in another country and first things first.
Doctors in Ireland have been very cruel to me and here I wonder why they have been for none of that here, I was listened to, and treated really, really well indeed.
All the best,
Ann
The weather a bit too glorious - heat and SUN - ugh!
Posted 4/10/2008 10:15 PM (GMT 0)
I am so glad that the doctors were so good with you. I hope they can figure out what is going on. It is sad the care in Ireland has not been up to par.
Posted 4/11/2008 3:08 AM (GMT 0)
Hi Ann,

   It sounds like you are well pleased with the docs and nurses in London. I'm glad to hear they are treating you so well. Please keep us updated and enjoy the royal treatment.... :-) . You are in my thoughts and prayers.

                                                                    Babs

Posted 4/11/2008 4:55 PM (GMT 0)
Ann, that is wonderful that you are having a positive experience in London!  You deserve that!  Thanks for keeping us posted on how everything is going!

 

Blessings,

Ginny

Posted 4/11/2008 5:23 PM (GMT 0)
Bad day! I suppose it to be expected. we went to a local bangladeshi market and I bought a pakistani outfit that covers all for the summer, it fab.
But came back to flat, middle of East end a dangerous part o town. NO AIR, couldnt open windows and sleep in case someone climbed in.
No park to go to, defo no sea.
Gee it has been awful, so hot, I am used to being within spitting distance of the ocean, here its packed with buildings and grime and I needed AIR!
I have been distressed, exhausted and in pain with the lack of air and the trip this morning and the hosp yesterday.
Am I silly.
How am I gonna accept this if this is for life.
As for the Light!
I wont only be buying bangladeshi I will be buying muslim burkas as well! No disrespect to muslims but we are only in april and I find the light and heat too much already.
Moan....moan...moan.... I have my second chihuahua to look forward.
ana's carer (!) says my chi has hooked up BIG TIME with a jack russell and are playing happily!
xAnn
Posted 4/11/2008 8:41 PM (GMT 0)
Hi Ann, I'm so happy to hear things are looking up as far as your doctors listening to you. That makes so much difference. Just the attitude we have helps so much. As for the heat and no ocean well I'm so sorry about that. I know some of us really suffer with that. I am fortunate to not have that problem at least not yet. After 26 years in arizona weather I am pretty used to it. Of course that was 2 years ago. So we shall see when I get back there.
The bed sounds wonderful! Maybe when your done with it you can send it my way?
Take care keep us informed
hugs
carol
Posted 4/11/2008 9:57 PM (GMT 0)
Ann, I suggest taking a hot shower or bath- it raises your body temp so that when you get out you feel tons cooler. I know that sounds crazy but it really works. Also applying cold to the following areas can cool the blood quickly: wrists, neck, breast area, groin, backs of knees. When applying cold to these areas it seems the blood flows closer to the surface in large amounts. Some may seem odd but I got this from a couple of doctors and nurses. I have a really hard time being hot or cold. I also suggest you consider having a fan with a bowl of cool water or ice behind it if the air is dry as this will increase the moisture but help cool the air at the same time. Can you tell I spent a lot of years w/o a/c? I am so spoiled now, we have central air. I open the windows only when I have to because I prefer better climate control.
Posted 4/12/2008 5:49 AM (GMT 0)
Oh Gee, thanks for the posts. woke half hr ago after restless night, fab cracked tongue and trush.
No, Arizona would NOT suit me but would love the dessert cacti (you do have em?!!) for photography and a tap o water maybe.
God rosie, those sound great tips and will try, I'm outa here tomorrow at least to another part of time which I believe is covered in plastic sheeting to prevent masony going down onto the streets, a student's residence being renovated.
So NO open windows there either, but student noise will not be a prob as I am near on profoundly deaf.
there are weekly courses here in London on Photoshop and I have a FULL week this coming week so shall ring promptly to day to see if I can get on one to keep my mind where it should be, away from 'sickie', today I am travelling to 'Angel' a place near here and see if I can pic up some flowery hats for summer.
Looked through a bangladesi mag last night gonna buy two more of their outfits they are just fab for an x (?) artist, I hope they wont be offended that a westerner is buying their garb but really, very light material from wrists to ankle is great. A tunic top with baggy trousers pulled in at the ankles and it has embroidery on it.
I hope the Irish wont think me truely NUTs if I start wear hindu clothing too.
Sure I care, NO!
Looks like another HOT day ut there and its only 7am and breakfast done and dusted.
Now for looking at that photoshop webpage......
Posted 4/14/2008 1:51 PM (GMT 0)
Hi Ann.  I'm glad the docs & staff are treating you well in London.  I've never been to London, but my 22 y/o daughter went twice and enjoyed it both times. I'm sure it'll take a while for you to get acclimated to the weather. The clothes you bought sound great. I've thought about buying East Indian clothes- tunics!  I'm glad your chi is in good hands.  My dog, Mr. Peabody, is half chi-half jack russell. He's a trip. I hope you're resting more comfortably today. Keep us posted.  Love, Butterflake 

Posted 4/14/2008 2:22 PM (GMT 0)
Put in few AWFUL days with dreadful pain, plus plus. I have never had such a wallop of a reaction to london before.
Pain,, exhaustion awful. Three days of tutorials for next three days here at an international students hostel my twin found for me. I HAVE AIR, on the sidewalk of Regents Park!
At present 3.20pm on bed with curtains pulled and pure peace and quiet.
Bed a bit hard!
I bought a package of three days photoshop tutorials and today walked for an age to find a shop for notebooks etc.
I will have shut eye and take it awful quiet now. Feel a bit better now.
At least we have air. And I can open windows for periods at a time.
xx Ann
Hospital for five days on the 28th April.
Looks as if I am going to make legal history in Ireland by winning a case I brought, it will be a first! So pleased about that, I will keep you informed.
Its about having Data taken from med files. Unheard of, but looks as if I will win after over five years of fight.
Commissioner will go to court on my behalf if it comes to that, but when the commissioner says sommut, you don't argue so if I have him on my side and I do, we are practically home and dry.
x for now,
Ann
Posted 4/14/2008 3:50 PM (GMT 0)
cool, it would be so nice to see someone win something to do with medical crud. I know a few whose doctors were blatently stupid and caused serious irreversable harm with well documented evidence but still lost when they went to court. Heck I wanted to do a wrongful death case when my son died and was told despite evidence and witnesses I would lose by the best lawyer I could find- same response for 4 other lawyers too. My medical records have vanished, as did my son's the day he died. So I understand about having things taken out of your medical records. I had to begin all over again with many abnormal test results that had been documented undocumented. Made getting dxed and txed hard.

I think it is great that you have the commissioner on your side for this.
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