and today (my birthday), amidst a whole bunch of wonderful presents, lupus delivered one of it's own.
For the first time ever, my nerve damage seems to have spread into one of the nerves effecting the large muscles in my leg. THe nerves in my feet are pretty shot, that's old news, but i find it rather horrifying if it starts to affect the nerves in my thigh that I use to actually pick up my leg to walk with it. I guess the reason it has got me really rattled is that with me this nerve damage has never got better, once it hits another area it just starts working away and I gradually loose more and more, but really I quite like being able to move my leg so this rather pisses me off.
The current loss in my upper leg is mild, so I am ok for the moment, it is just depression that this is a new progression for me and as I say, with this sort of damage to date I have never had any improvement, just continued deterioration (sensori-motor axonal neuropathy).
It has also spread into my hands more - well it has been affecting my left (dominant) hand for a while, but it has got much more pronounced lately, but I have been doing a good job at ignoring that. I hate to think of loosing motor function in my hands.
My doc also told me the other day that it is affecting one of the nerves which goes to my larynx, which is why my voice is often husky. I hadn't thought anything of it, my doctor picked it up. Apparently there are two nerves going to the larynx, and just one is affected at the present time.
oh, the other thing that I have at the moment (so the docs tell me) is receptive aphasia, but then that is nothing new. And something else that I have forgotten, but never mind.
Actually despite all this crapology going on around me I had (and am having) a fabulous birthday - went out last night with friends and my daughters to a wonderful resturant and had an absolute ball - much laughter and hilarity and today had lunch with two sisters, then visited a friend who lives around the corner. I have a couple of days off work at the moment, so I plan to enjoy it.
and no, i am not going to the doctor tomorrow, I am going about 1 hr up north to visit another friend who is visiting from down country, and will have a great day with her. There is no real benefit to being poked and prodded tomorrow as compared with being poked and prodded on Monday, so I am not wasting my holiday. I will see the doc after work on Monday, or before work if anything gets worse (i work flexi time, so it fits in around things). I see my neuro at the end of march, and will request more nerve studies to see where stuff is at.
but over all i am very happy, despite lupus. Oh, for my birthday I got a gorgeous new mobile phone (I have been juggling a peronal mobile that is identical to my work mobile, which is just impossible), a halerious new cross stitch from my daughter who knows my tastes in such things, and a bunch of other stuff. But mostly I have just had wonderful time with family and friends, which is the main thing. Oh, and I picked up my new glasses tonight, which mean that I can now see, which is a treat.
somebody just handed me a peanut slab and a glass of wine, so I am even happier (don't usually eat choc, but it is my birthday so I get to break all the rules).
love to you all
raglet
For the first time ever, my nerve damage seems to have spread into one of the nerves effecting the large muscles in my leg. THe nerves in my feet are pretty shot, that's old news, but i find it rather horrifying if it starts to affect the nerves in my thigh that I use to actually pick up my leg to walk with it. I guess the reason it has got me really rattled is that with me this nerve damage has never got better, once it hits another area it just starts working away and I gradually loose more and more, but really I quite like being able to move my leg so this rather pisses me off.
The current loss in my upper leg is mild, so I am ok for the moment, it is just depression that this is a new progression for me and as I say, with this sort of damage to date I have never had any improvement, just continued deterioration (sensori-motor axonal neuropathy).
It has also spread into my hands more - well it has been affecting my left (dominant) hand for a while, but it has got much more pronounced lately, but I have been doing a good job at ignoring that. I hate to think of loosing motor function in my hands.
My doc also told me the other day that it is affecting one of the nerves which goes to my larynx, which is why my voice is often husky. I hadn't thought anything of it, my doctor picked it up. Apparently there are two nerves going to the larynx, and just one is affected at the present time.
oh, the other thing that I have at the moment (so the docs tell me) is receptive aphasia, but then that is nothing new. And something else that I have forgotten, but never mind.
Actually despite all this crapology going on around me I had (and am having) a fabulous birthday - went out last night with friends and my daughters to a wonderful resturant and had an absolute ball - much laughter and hilarity and today had lunch with two sisters, then visited a friend who lives around the corner. I have a couple of days off work at the moment, so I plan to enjoy it.
and no, i am not going to the doctor tomorrow, I am going about 1 hr up north to visit another friend who is visiting from down country, and will have a great day with her. There is no real benefit to being poked and prodded tomorrow as compared with being poked and prodded on Monday, so I am not wasting my holiday. I will see the doc after work on Monday, or before work if anything gets worse (i work flexi time, so it fits in around things). I see my neuro at the end of march, and will request more nerve studies to see where stuff is at.
but over all i am very happy, despite lupus. Oh, for my birthday I got a gorgeous new mobile phone (I have been juggling a peronal mobile that is identical to my work mobile, which is just impossible), a halerious new cross stitch from my daughter who knows my tastes in such things, and a bunch of other stuff. But mostly I have just had wonderful time with family and friends, which is the main thing. Oh, and I picked up my new glasses tonight, which mean that I can now see, which is a treat.
somebody just handed me a peanut slab and a glass of wine, so I am even happier (don't usually eat choc, but it is my birthday so I get to break all the rules).
love to you all
raglet
