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Hi all,

I thought I'd give a little me update. This is especially for all those who have worried about me over the last few weeks and given me their incredible support.

This last week-end we went away. Now, let me put this in its context. My husband and I used to go away for a week-end pretty frequently. It is/was part of what makes us as a couple :) It has, however, been over a year since we were able to. I have been far too up and down and, especially, that terrible neuropathic pain which was meaning that I couldn't stand 5 mins and certainly couldn't visit anything.

Of course, although I couldn't say no to my husband (and didn't want to) I was rather apprehensive about going away. I worried on the one hand about what it was going to do to me and also about disappointing my husband (he says that's impossible but you know what I mean).

I had the most fabulous week-end. OK, after a while my feet get sore and I do need a nap somewhere in the middle of the day but on Saturday I was able to wander around a local market in France, visit an old hospice, go round a supermarket to get ourselves a picnic lunch and later in the day go for a good hour's walk in the woods with the dog. At the end of the day we had a fabulous meal in a Michelin star restaurant.

I am tired and headachy today and I'd say I'll need a couple of days to get back on track but I feel confident that I'll be OK.

I also saw the rheumy this morning. She was great about everything really. She agrees that I have a lot of inflammation and other problems going on (including the headaches and the memory problems which she took seriously), apparently this is also backed up in my bloodwork as I have raised circulating immune complexes (hope that's properly translated). My recent nerve conduction study was also pretty interesting as it is very hard to actually get any readings on my legs (I probably already told you that one). Thankfully my numbness and neuropathy seems stable.

Funnily enough, despite those problems I also seem to have an underlying improvement in daily "functioning" and "endurance", if one can say that, which may be the plaquenil finally kicking in fully (?). There is also the huge improvement in neuropathic pain in feet with the tegretol.

I started taking riboflavin about three weeks ago to try and help the headaches. It seems to be helping a little even if my brain is still on vacation with no emergency contact number!

We have agreed that we won't change anything in treatment right now as it would be good to know if this underlying improvement really is an improvement and that it remains stable.

As I have now been on pred for over a year, I am also to get a bone density scan done in three months.

Now I know that that was pretty long and boring :lol: but I'm sure some of you will be glad to know that I'm still here!

night all,
Katharine
 

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Katherine,

I'm very glad to hear that youre still here!

Take care and catch you in chat sometime!

Hugs Lesley
 

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Hi Katharine,

I am so glad you had such a wonderful weekend. Getting away always seems to recharge my batteries even if it puts me in bed for a few days.

I hope you took plenty of pictures. We have all of ours done as a slideshow screensaver. It is so great to have those memories brought back on a daily basis.

Take care,
Lazylegs
 

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Hi Katherine

Glad you had a wonderful weekend, some quality time with your hubby. I'm sorry that you have been having a rough time but it sounds like you are on the mend (thankfully).

Take care of yourself and I hope you have many more wonderful weekends to come.

Best Wishes

Claire
 

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Hi Katherine,

I am so happy to hear you had such a marvelous get a way with your hubby.

I am glad you took the leap, and went, sounds like you are too..lol.

Take plenty of time and recover..I hope, your headache lets up, Katherine.
I know, they are miserable.

Take Care..

Love,
Sandy
 

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Hi Katherine,

It is great you and your hubby went on your weekend get-away. Sounds like you had a grand time.:)

I know that feeling all to well, apprehensive, when we go places. Wondering if I will survive it.

I hope you have continue improvement on your health.

:rose:
Lyn
 

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Hi Katharine

Your weekend sounded wonderful! Im so glad you got some 'me' time with your hubby. These little breaks make all the difference to our general outlook and wellbeing.

Its great to hear that things are stabilising for you at the moment and lets hope it continues the right way :) Perhaps, as you say, the Plaquenil has finally reached a tipping point or perhaps you have learned to 'endure'. Maybe its a bit of both.

Whatever the reason, long may it last!

Much love
Joan:rose:
 

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Hi Katherine.

That is wonderful news that things are stable right now and always room for improvement.

I know what you mean about getting away. It is great that you were able to do that and without any drastic complications. I think the whole just "getting away" and breathing new air and seeing new things. Feeling like a person again. Human actually. It is great and I am glad that you got to do it.
 

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Good for you Katherine. You gives us all hope to take the "leap of faith" and get some of our original lives/selves back.
Way to go girl.
 
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