they gave me another gram today, along with my cyclo (cytoxan).
well the thing that has me miserable is my tongue. I now can't poke it our of my mouth at all, not even to lick my lips. If I need to moisten my lips, I have to sort of suck them in around my teeth so the tip of my tongue can reach them. If someone asks me to poke out my tongue I have to open my mouth wide so they and look into it and see the effort my tongue is making, coz otherwize they don't just don't see anything.
Basically it means that the area of my mouth that I can use for speech has pulled back a lot in my mouth, as the tip of my tongue lost strength about 2 years ago so it pretty useless, so that really leaves the area between the ridge behind my teeth and the back of my mouth for speech production. So my dysarthria has worsened, again, and while I think it is still likely that it will improve as I adjust, it doesn't really seem likely that this overall thing is going to change much. And I know that this probably doesn't make much sense to people because the whole speech production thing is such a specialised area, but that is ok, I just need to say what is happening so I am going into all the details.
If they do that tongue strength test thing (pushing against something with your tongue) the left side of my tongue does nothing, beyond a little very weak trembling if I try to make it move. It is totally kuput. So the right side of my tongue, that is still nice and strong, has nothing to pull against so it pulls my tongue over to the right side of my mouth.
Actually a lot of my problems are caused by this same mechanism - one side of a limb (or a tongue) getting twisted as because one side gets weak and so the other strong side pulls the limb (or tongue) out of shape because proper position is maintained by opposing groups of muscles pulling against each other. And of course, my lupus loves anything to do with my nervous system, so eats up all the nerves that I need to tell the muscles to do their job. Twisted feet, knee caps pulled out of line, legs beginning to twist, curled up toes (not tendon related), my fingers are starting to role up as the nerves that I need to straighten my hands out are getting damaged, etc etc etc.
I guess the thing that really really ****s me off (hallo automatic censor :wink2: ) is that my blood work in March showed that I had complete return of my b cells from the last first rituxan treatment I had some time before. It they had been allowed to give me rituxan then, I think it is very likely that this wouldn't have happen. My tongue has been very stable otherwise since my first rituxan treatment.
Under our STUPID STUPID funding rules, I had to wait until I got sick enough to qualify for rituxan funding, again. And ****, it only took two months ! Rituxan can only be got through the hospital, not through private insurance etc, it's just the way our health system works. Heck, my family even offered to pay a couple of years ago and the hospital refused. Long story, many of you heard about it has it unfolded over the 18 months it took to get my first treatment approved. I have utterly fabulous doctors which is the only reason I ever got funded in the first place, so this definitely isn't their fault.
This time I got approved really fast once I got sick enough (once approved it is easier to be reapproved) - but because I always collect permanent damage with each flare (brainstem this time, no surprise there) then giving me this stupid drug in March when I had full return of my b cells would likely have avoided this flare which unsurprisingly has done further damage to my tongue. And tongues are surprisingly important things.
And that is precisely what pisses me off at the moment, the stupidity of a system that tells me I have to wait to get sick enough to requalify, even though each time I get sick I get permanent damage to my central nervous system. It's just the sort of flares that I have, it's the way lupus has panned out for me, nothing much I can so about it. And the stupid funding committee just doesn't take things like that into consideration. It's just not the way the stupid rules are written (in their sleep I assume ?)
Actually I have already got over the worst of the increased dysarthria caused by this recent event - I was in hospital and a friend called my cell - she said later that I sounded really drunk (I wish!) though she knew I wasn't. It just really worried her, unsurprisingly.
Oh well, no surprises that I am sad and angry (mostly sad actually - angry is just easier) and the extra 1000mg steroids today didn't help. I really got to go to bed, it's nearly 3 in the morning, just too wired to sleep so I will go take some sleeping pills and head off to bed.
Same friend is coming over tomorrow evening to hang out with me, which will be nice. Gotta try and get these dogs walked tomorrow - today they didn't even go their 'it's walktime it's walktime omg it's walktime' routine which is strange.
thanks for listening guys, it really helps
raglet
well the thing that has me miserable is my tongue. I now can't poke it our of my mouth at all, not even to lick my lips. If I need to moisten my lips, I have to sort of suck them in around my teeth so the tip of my tongue can reach them. If someone asks me to poke out my tongue I have to open my mouth wide so they and look into it and see the effort my tongue is making, coz otherwize they don't just don't see anything.
Basically it means that the area of my mouth that I can use for speech has pulled back a lot in my mouth, as the tip of my tongue lost strength about 2 years ago so it pretty useless, so that really leaves the area between the ridge behind my teeth and the back of my mouth for speech production. So my dysarthria has worsened, again, and while I think it is still likely that it will improve as I adjust, it doesn't really seem likely that this overall thing is going to change much. And I know that this probably doesn't make much sense to people because the whole speech production thing is such a specialised area, but that is ok, I just need to say what is happening so I am going into all the details.
If they do that tongue strength test thing (pushing against something with your tongue) the left side of my tongue does nothing, beyond a little very weak trembling if I try to make it move. It is totally kuput. So the right side of my tongue, that is still nice and strong, has nothing to pull against so it pulls my tongue over to the right side of my mouth.
Actually a lot of my problems are caused by this same mechanism - one side of a limb (or a tongue) getting twisted as because one side gets weak and so the other strong side pulls the limb (or tongue) out of shape because proper position is maintained by opposing groups of muscles pulling against each other. And of course, my lupus loves anything to do with my nervous system, so eats up all the nerves that I need to tell the muscles to do their job. Twisted feet, knee caps pulled out of line, legs beginning to twist, curled up toes (not tendon related), my fingers are starting to role up as the nerves that I need to straighten my hands out are getting damaged, etc etc etc.
I guess the thing that really really ****s me off (hallo automatic censor :wink2: ) is that my blood work in March showed that I had complete return of my b cells from the last first rituxan treatment I had some time before. It they had been allowed to give me rituxan then, I think it is very likely that this wouldn't have happen. My tongue has been very stable otherwise since my first rituxan treatment.
Under our STUPID STUPID funding rules, I had to wait until I got sick enough to qualify for rituxan funding, again. And ****, it only took two months ! Rituxan can only be got through the hospital, not through private insurance etc, it's just the way our health system works. Heck, my family even offered to pay a couple of years ago and the hospital refused. Long story, many of you heard about it has it unfolded over the 18 months it took to get my first treatment approved. I have utterly fabulous doctors which is the only reason I ever got funded in the first place, so this definitely isn't their fault.
This time I got approved really fast once I got sick enough (once approved it is easier to be reapproved) - but because I always collect permanent damage with each flare (brainstem this time, no surprise there) then giving me this stupid drug in March when I had full return of my b cells would likely have avoided this flare which unsurprisingly has done further damage to my tongue. And tongues are surprisingly important things.
And that is precisely what pisses me off at the moment, the stupidity of a system that tells me I have to wait to get sick enough to requalify, even though each time I get sick I get permanent damage to my central nervous system. It's just the sort of flares that I have, it's the way lupus has panned out for me, nothing much I can so about it. And the stupid funding committee just doesn't take things like that into consideration. It's just not the way the stupid rules are written (in their sleep I assume ?)
Actually I have already got over the worst of the increased dysarthria caused by this recent event - I was in hospital and a friend called my cell - she said later that I sounded really drunk (I wish!) though she knew I wasn't. It just really worried her, unsurprisingly.
Oh well, no surprises that I am sad and angry (mostly sad actually - angry is just easier) and the extra 1000mg steroids today didn't help. I really got to go to bed, it's nearly 3 in the morning, just too wired to sleep so I will go take some sleeping pills and head off to bed.
Same friend is coming over tomorrow evening to hang out with me, which will be nice. Gotta try and get these dogs walked tomorrow - today they didn't even go their 'it's walktime it's walktime omg it's walktime' routine which is strange.
thanks for listening guys, it really helps
raglet
