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
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
