Hi all, some of you may already know because of the post I put on facebook........I have been in hospital since Tuesday night.
The pain has been getting worse & last night started to lose blood clots no not due to what some may be thinking, wrong timing?....plus with my inr being high this has confused docs so was sent to A+E.........these continued till this afternoon, & blood in my urine? pain still really bad...........yet they still didn't scan me? pain has spread across bottom of back & in other side a little too........they were very friendly but I needed some answers?!! they admitted they didn't know enough about Hughes to make a solid judgement & asked me to dose myself on how many warfarin I should take last night & tonight!!! gynecologist has checked me over & says it seems fine.....but was concerned about the pain in liver area (gall bladder area) they are not sure if it could be the liver that could be causing the clots? & even suggested that even tho 'it's rare'...it isn't unheard of where people still have 'gall stones' develope?? I have an appointment tomorrow to see what inr is doing & if it starts to stabilize & the clots stop then just to carry on till I get scan date & take it from there....but if the clots dont stop & the inr is stabilized they want me to go back to the hospital .
So I have to just hope & wait to see what is maybe going on
Met a lady in there & we got on & she has MS.....she made a joke of starting the game of eye spy!!! but we couldn't get by 'b'!!!! so then I started the game of OXO with the ceiling tiles!!!! & we agreed that as we got to the 3rd tile we forgot what we had said the other ones were!! it cheered her up & took her mind & mine of things!
Hopefully I'll know more by the end of the week? xxxx
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Suzypawz
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Hi huns, I went to the docs today & I felt like I was putting on him I had only gone there for the inr to be checked but I needed to tell a doc' what had happened & this appointment was ready!......I didn't have time to make another appointment in time?
He made it quite clear I was putting him behind his schedule even tho' he already was with the house call he had just been to so he had already told me........he did say he was sorry if he seemed stressed......but I can asure him....I am more!!!
He is confused too whats going on but in the end I managed to convince him to ask the hospital to bring my scan appointment forward if possible.........
I dont have a lot of faith in the med' prof' as it is............with my past experiences, but I am always patient & understanding with them as I know how busy they all are.....but this is my life they are playing with at the end of the day! I just want answers?
There was an old lady in the bed opposite that had just fell asleep, that they made jump out of her skin when they suddenly came, moving her bed to take her away & talking loudly at her.....she had heart surgery & heart problems she had told me earlier that day!!!!!
My inr is stabilizing & the bleeding & clots are I think ending?
The pain in my stomach / side is still bad & I keep feeling sick & very tired from it. I went to bed early last night & didn't wake up till 2pm this afternoon!
I am trying to keep possitive but I am starting to lose it again..........if we havn't the medical profession behind us what help/hope can we have?!!
I cannot afford to go back to Thommies as of yet....& they have all made it quite clear here they dont know what to do with me!.........they said at the hospital....that with the disorder I have it makes everything complicated & dont know what is causing what..........
I keep thinking that when I wake up there might be an improvement.........but no
I know it's hard to focus on improvement when there is still so much negative going on. But try. You said your iNR is stabilizing? Well that's something. Problem with our disease I know is that those antibodies can be so creative and inventive! I dreamed one night that my antibodies were stars in a Japaneses style anime cartoon film. Wish I could remember more details. But my dream self gave each of those little buggers cudgels and they went around swinging them karate style.
We're all routing for you. Yeah Suzypaws! Go Suzypaws!
Morning in America now, and I'm hoping this day is going well for you in that hospital across the pond. And I hope you're tuned in to all the good thoughts nd vibes we're sending your way.
Hi Gina, thank you hunny, I am trying to stay possitive.............that sounded like a very vivid strange dream you had! were you on Tramadol at the time : )
I really am trying just to get on & stay possitive...........the guys have a gig tonight & I've had to make the decision on staying home this time I really dont think it's wise for me to go there tonight..........but I love being there with them
The pain just doesn't seem to be easing any...........I have just had some dinner with my son & I'll see how I go but I struggled the bit I had........I've now started coughing since last night....which really isn't helping any! as it hurts when it tenses up?
I just have to wait now & see what the scan says when it eventually comes through..........
Can someone video the gig foy you? Better then nothing. Here we, or at least I, am awaiting more news on why that nut job killed people In a theater last night. I live in what can be a crazy country sometimes.
Someone is videoing it for them, as I normally do it along with the photo side of it, I've seen them lots of times I dont mind not being able to see it tonight I just love to be there with them giving my support & I love the atmosphere of gigs : ) It's a sold out show so they'll be ok for attention : )
They have another one tomorrow night nearer to home....not the Bon Jovi band tho' like tonight ...it's Rockaholic ...so if I can make it I know it'll make me laugh (which may hurt!) as they clown around in that band : )
Oh dear on the theater story what crazy people there are everywhere!!!
Hope the gig goes well, and I hope the coughing eases off.
Im cooking dinner tomorrow --that chicken and broccoli casserole we all do --for a friend who is just out from a hysterectomy. I asked her how she was doing and she said each day is better then the one before, but . . . " I sneezed yesterday and the pain almost prompted me to call 911. My neighbor better not bring her cat over for any visits.".
Hope you sleep ( slept) well. And may tomorrow be better, and the next day better still.
I'll take the opportunity to brag on my daughter's blog; notesfromanaccidentalnaturalist.blogspot.com.
Her latest blog was on zombie river otters. I'm not healthy enough to do the outside stuff she does, but it's nice to read about her adventures. Maybe her ramblings can offer you a distraction from APS monitering.
And I trust the gig went well. I dream of going to Colunmbus this fall to see The Who. We'll see.
Hey Suzy, I feel for you, doctors do seem to have a habit of saying to us sufferers, errr well you are a difficult case, - well you know what doctors?!?! we know that, so maybe they need to go learn how to deal with difficult cases - try to keep positive hunni - on another topic, I have decided I am going to try and get in touch with a physic surgeon I have had experience of before and also heard brilliant things about, also I tried some Hawaiin healing last week too - after all nothing ventured nothing gained!
Hi funny you saying this......I too have been offered free Reiki fom a lady that came to a gig once & is now friends with us she says she wont charge anyone that has a life long illness..............
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no not due to what some may be thinking, wrong timing?....plus with my inr being high this has confused docs so was sent to A+E.........these continued till this afternoon, & blood in my urine? pain still really bad...........yet they still didn't scan me? pain has spread across bottom of back & in other side a little too........they were very friendly but I needed some answers?!! they admitted they didn't know enough about Hughes to make a solid judgement & asked me to dose myself on how many warfarin I should take last night & tonight!!! gynecologist has checked me over & says it seems fine.....but was concerned about the pain in liver area (gall bladder area) they are not sure if it could be the liver that could be causing the clots? & even suggested that even tho 'it's rare'...it isn't unheard of where people still have 'gall stones' develope?? I have an appointment tomorrow to see what inr is doing & if it starts to stabilize & the clots stop then just to carry on till I get scan date & take it from there....but if the clots dont stop & the inr is stabilized they want me to go back to the hospital . 
so then I started the game of OXO with the ceiling tiles!!!! & we agreed that as we got to the 3rd tile we forgot what we had said the other ones were!! it cheered her up & took her mind & mine of things! 
I had only gone there for the inr to be checked but I needed to tell a doc' what had happened & this appointment was ready!......I didn't have time to make another appointment in time? 
Hi all- WEll a new year ???????
A new recommended INR?
In Hospital at mo pleased that a opthalmologist and a doctor seem to support the theory of micro clots!
Feeling low after a long night in A&E
