Nice People Thread Number 11 - A Treasury of Nice People

lostinrates

bugslet wrote: »

That, lir, is sthe definition of putting a positive spin on things! But rare sounds better than freakish to me. And if it helps speed appointments along, even better.

No, its no spin, its really good I think. With a rare condition its interesting and researched, with a freakishly rare one, like my unexpected recovery to this state, there is very little known or researched, so people either take educated guesses, or more often don't my want to rock the boat of the body.

Spirit_2

lostinrates wrote: »

I had an appointment pencilled in for first week of June, ( that's not long right?) with new New consultant. He's had the letter from last new guy and says I must not wait till then, so I am going in on Wednesday for next prodding and 'look at the rare woman' session.

I feel better that its being rushed, weirdly, because that means me feeling a bit odd is not so 'odd' .

The unusal thing is I am not in much pain at all ATM. . So if I have this thing maybe its trumped the other thing, that would make me just 'rare' not 'freakish' so that would be better as there is a much clearer treatment protocol.

Good news on the speedy referral, however their judgement about timeliness may also reflect your specific needs/diagnosis. That you are now rating yourself as struggling needs to be made clear to your physicians or may be that is what they are expecting hence the haste. You have told us of some very scary symptoms recently (collapsing and not being able to get up) and as you usually describe your coping strategies for chronic illness in such a resilient way I am 'hearing' a downturn and truly wish for you to return to better health.


Will FiR be with you next Weds? Is the location somewhere we can help in any way?

lostinrates

Spirit wrote: »

Good news on the speedy referral, however their judgement about timeliness may also reflect your specific needs/diagnosis. That you are now rating yourself as struggling needs to be made clear to your physicians or may be that is what they are expecting hence the haste. You have told us of some very scary symptoms recently (collapsing and not being able to get up) and as you usually describe your coping strategies for chronic illness in such a resilient way I am 'hearing' a downturn and truly wish for you to return to better health.


Will FiR be with you next Weds? Is the location somewhere we can help in any way?

. Trying.

Weds is difficult for fir, as he is heading something that has client meetings and reaches a climax next week. ATM he is trying to see if he can get a train direct to hospital town, this seems reasonably likely, so we'll meet there, he'll come , then go back from there.

I feel fine with this as a plan but if it changes I'll yell. I also feel reasonably ok about going by myself into appt. ( today anyway ). It might be in someways better as I can discuss some of the newer symptoms frankly and without alarming fir too much.

Edit: I was very clear on Monday with GP the full extent of current 'struggling'. He said anyone would feel like this at this stage and that as its not hopeless ATM I just have to sit tight and hold on. As its less time than predicted this seems achievable, fir understood this, but its not something I am keen to labour.

Generali

Spirit wrote: »

Good news on the speedy referral, however their judgement about timeliness may also reflect your specific needs/diagnosis. That you are now rating yourself as struggling needs to be made clear to your physicians or may be that is what they are expecting hence the haste. You have told us of some very scary symptoms recently (collapsing and not being able to get up) and as you usually describe your coping strategies for chronic illness in such a resilient way I am 'hearing' a downturn and truly wish for you to return to better health.


Will FiR be with you next Weds? Is the location somewhere we can help in any way?

Happy to help if LIR's been referred to Westmead or North Shore. I'd
be surprised TBH although probably not as much as she.

To me, as pretty much the definition of layman, you seem to have had conflicting things LIR: some bursts of energy and tolerance of a wider range of foods with some other rather more worrying things.

Lots of things are crossed for you.

Nikkster

lostinrates wrote: »

It might be in someways better as I can discuss some of the newer symptoms frankly and without alarming fir too much.

My tuppenceworth - this bit sounds important to me

lostinrates

Generali wrote: »

Happy to help if LIR's been referred to Westmead or North Shore. I'd
be surprised TBH although probably not as much as she.

To me, as pretty much the definition of layman, you seem to have had conflicting things LIR: some bursts of energy and tolerance of a wider range of foods with some other rather more worrying things.

Lots of things are crossed for you.

I ate yoghurt this week:D. I cannot tell you how great yoghurt is, with FRUIT. :j. This week I have had fruit yoghurt, peaches and a plum:j:j.


I was thinking about trying a ' glass of milk' or a proper raw salad but I might leave it now till later next week as don't want to upset the balance. If they are going to take bloods/urine etc next week, as could confuse fluid balance readings.

I think mainly what I don't have are the very strong nuerological symptoms. Thus very little pain etc. this might be because the endocrinology symptoms are very high. If that's the case then, dispassionately, I understand why I feel 'suffering' when realistically I feel less so physically.


Spirit, something you said about heart pain etc really has made me thing. The other week/month when I had very bad pain in a strange for me place I wonder if that could have been cardiac rather than nuerological? And when coffee an I fell out. I don't know of course, but its just a thought....its making me think about trying not to lurch in to activity. Today in repotted a bat tree and planted a co free plant that arrived.


Edit...bat tree.....bay tree. Co free.....comfry.

lostinrates

Nikkster wrote: »

My tuppenceworth - this bit sounds important to me

He might not be too interested, this guy. I'll see, whether for is there or not. But I'll cope anyway.

Spirit_2

:j:j:j

I have had the insurance renewal quote in for my car. I was expecting a large hike due to my recent bump. Felt sure I was about to discover that protected no claims was a meaningless marketing line. Very pleasantly surprised...£270. 2 yr old BMW with three named drivers incl european cover and relacment courtesy car (which I now know will be basic).

:j:j:j
My husband is away until 28th....but has now decided to travel to Romania from Russia via home. So he will get in in the small hours of Tues, and leave again Weds . Only four more sleeps.:)

ukmaggie45

Gosh, we go away for 3 days and when we get home it takes me till now (we travelled home on Sat) to catch up! What a lot has been going on!

NDG Congratulations! :j :beer:

LiR, gosh things seem to be moving on fast - do hope this new consultant is helpful.

Generali, I'm glad that your scan is clear and tonsils are OK, will be vibing away for you when you go for the radiotherapy.

Hugs and vibes to anyone who needs them, and welcome Miroslav too.

I'm sure I've missed a lot of things that I'd like to comment on, but time is too short! :rotfl:

Pastures, I liked your comment about having more holibobs in the last month than you have in 20 years! I did try to wirte a reply at the time, but it took me so long to type it out using a stylus on the kindle and then after about 20 minutes effort the blooming thing just disappeared Phht just like that :mad:

Anyway, will reply now! This holiday was really to tie up some loose ends and revisit old haunts. After 6 and a half years we finally got the final accounts on my parents' estates, and a bit of money too. So we decided to spend some of it on a short break in a hotel they used to visit often for Christmas and New Year. It was fun, and we did get out into the countryside even when it was raining! But it was so wet we stayed on an extra day so that OH could trundle me along the railway path (railway axed by Beeching in 1964) into Dolgellau where we went and had lunch in the shop that used to be my Grandfather's back when I was a child.

Trip along the old railway line to Dolgellau by ukmaggie45, on Flickr

I took some photos of the wallpaper in our first room for LiR as thought she might like it... Sorry it's so bad - the light was poor, and flash just glared off it, the lions (or whatever they are!) are in gold ink, printed on an olivey coloured background.

IMG_6377 by ukmaggie45, on Flickr

The last night we changed rooms, as our had been booked. And as soon as I saw these chairs (there were 2 of them looking out through the window bay) I thought of you LiR! They are small as armchairs go, but I loved the patterned velvet animals!

Scott Room last night, and views from staircase at Penmaenuchaf Hall by ukmaggie45, on Flickr

I took around 350 photos over the few days we were away! :eek: I only put 250 of them up on Flickr. If anyone wants to see a bit of the beautiful Mawddach Estuary (praised highly by Wordsworth and John Ruskin for its beauty) and the hotel and some cute lambs and nice Welsh cattle and rain in the hills and OH opening gates on the road in the rain etc you can find the whole set here.

lostinrates

Two rooms? Amazing, I'd love that!