Hello! 
I know I haven't been posting here regularly over the past year or so but things took a turn from bad to worse to the worst a couple of times over and although there have been times when I really really wanted to post and say hi I honestly did not know what to say...
I have gone through the usual imuran, cellcept, cytoxan, pred, iv pred, more iv pred, rituxan, an experimental med, plasmapheresis etc etc etc route for the lupus and c-aps; I'm on the maximum dose of heparin (plus aspirin) and then some for my aps, I've gone through endless battles with both these things over the past couple of years that have resulted in some pretty big losses and nearly no wins and just when I thought I'd been left alone for just a tiny little while it appears that that's really not going to happen. No. This thing is back and it seems to be gearing up for yet another one of those battles I hate... Only this time I don't know if I have it in me to fight it... My blood tests are a mess, my kidneys, my brain, a mess and meds don't really work...
My one doc was saying on the phone today that he doesn't know what'll happen if we don't find something to stop this soon whilst the rheumy was screaming that what we keep losing are battles and that we haven't lost the war yet and saying stuff about about more experimental meds and iv steroids(but honestly how many battles does it take to call it a war...?) and my neuro suggested it might be an idea to lie back, relax and accept these diseases are what will kill me and it's probably just a question of what kind of a fight I have in me yet and how determined they are that'll show us the when of the matter. Both my internist and neuro have suggested that since no one has anything new to offer med-wise this time I might get home monitoring or be admitted for tests and monitoring and just get some good food, a lot of sleep and just wait and see.
Now, I don't want to give the wrong idea; I generally give a pretty good fight and have done so a number of times in the past with this... I generally am pretty upbeat about the whole thing too (or at least I try to be!)... I also decided some time ago that I don't want any more re-tries of meds that have failed already and definitely no more cytoxan; I also don't want to spend most of my year in a hospital so home hospitalisation sounds brilliant indeed.
However all that is theory and the reality of the situation is not that simple. Because the truth of the matter is, as simple and cliche as it may sound, that I don’t want to die. Now I realize that whatever I say won’t make the least bit of difference in this and I realize that people die from things like this or from things unlike this every minute of every day and therefore it’s really nothing unusual philosophically, globally, universally but the fact remains…I want to live till I’m 100 and then some… And I really really don’t want to have a 1 year, 2 year deadline posted in front of me…
A friend told me a couple of months ago that to be ok with my self again I have to manage to stand up and say "I am blind now" and while she made an excellent point I think maybe I need to stand up and be able to say "I am severely ill and blind now" as if there's such a thing with this as denial that comes when things go really wrong really fast then I have it! :lol: The only problem being, I have absolutely no clue how to do that...
I guess what I'm trying to say is that there seems to be a place where everything fails and crumbles and it's a very lonely place to be in. I've had the horror of being there a couple of times already and every time I am I'm just not sure whether that time will be the last or whether there's more to come and exactly how much worse it can get before it is the last. Saying it out loud (or writing it as the case may be) seems to help though and so does having other people who have seen that place read it...
Thank you for hearing me vent...I'm now going to bang my head against the wall for a little while and then I'm sure things will seem a lot better...!
Hope everyone is doing ok...! :blush:
Zoi
I know I haven't been posting here regularly over the past year or so but things took a turn from bad to worse to the worst a couple of times over and although there have been times when I really really wanted to post and say hi I honestly did not know what to say...
I have gone through the usual imuran, cellcept, cytoxan, pred, iv pred, more iv pred, rituxan, an experimental med, plasmapheresis etc etc etc route for the lupus and c-aps; I'm on the maximum dose of heparin (plus aspirin) and then some for my aps, I've gone through endless battles with both these things over the past couple of years that have resulted in some pretty big losses and nearly no wins and just when I thought I'd been left alone for just a tiny little while it appears that that's really not going to happen. No. This thing is back and it seems to be gearing up for yet another one of those battles I hate... Only this time I don't know if I have it in me to fight it... My blood tests are a mess, my kidneys, my brain, a mess and meds don't really work...
My one doc was saying on the phone today that he doesn't know what'll happen if we don't find something to stop this soon whilst the rheumy was screaming that what we keep losing are battles and that we haven't lost the war yet and saying stuff about about more experimental meds and iv steroids(but honestly how many battles does it take to call it a war...?) and my neuro suggested it might be an idea to lie back, relax and accept these diseases are what will kill me and it's probably just a question of what kind of a fight I have in me yet and how determined they are that'll show us the when of the matter. Both my internist and neuro have suggested that since no one has anything new to offer med-wise this time I might get home monitoring or be admitted for tests and monitoring and just get some good food, a lot of sleep and just wait and see.
Now, I don't want to give the wrong idea; I generally give a pretty good fight and have done so a number of times in the past with this... I generally am pretty upbeat about the whole thing too (or at least I try to be!)... I also decided some time ago that I don't want any more re-tries of meds that have failed already and definitely no more cytoxan; I also don't want to spend most of my year in a hospital so home hospitalisation sounds brilliant indeed.
However all that is theory and the reality of the situation is not that simple. Because the truth of the matter is, as simple and cliche as it may sound, that I don’t want to die. Now I realize that whatever I say won’t make the least bit of difference in this and I realize that people die from things like this or from things unlike this every minute of every day and therefore it’s really nothing unusual philosophically, globally, universally but the fact remains…I want to live till I’m 100 and then some… And I really really don’t want to have a 1 year, 2 year deadline posted in front of me…
A friend told me a couple of months ago that to be ok with my self again I have to manage to stand up and say "I am blind now" and while she made an excellent point I think maybe I need to stand up and be able to say "I am severely ill and blind now" as if there's such a thing with this as denial that comes when things go really wrong really fast then I have it! :lol: The only problem being, I have absolutely no clue how to do that...
I guess what I'm trying to say is that there seems to be a place where everything fails and crumbles and it's a very lonely place to be in. I've had the horror of being there a couple of times already and every time I am I'm just not sure whether that time will be the last or whether there's more to come and exactly how much worse it can get before it is the last. Saying it out loud (or writing it as the case may be) seems to help though and so does having other people who have seen that place read it...
Thank you for hearing me vent...I'm now going to bang my head against the wall for a little while and then I'm sure things will seem a lot better...!
Hope everyone is doing ok...! :blush:
Zoi