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Discussion Starter · #1 ·
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
 

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Raglet if I had to handle what you do, I would probably be frantic. It seems that all insurance systems have their problems. If we could JUST combine a few and take only the good things about them. :(

I hope you enjoy your time with your friend!
 

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I would be ticked off too. I'd be temped to send them a copy of what you just wrote with a big "thanks for acting too late to prevent this" and your signature at the end.

Your dogs must sense your mood... those dears. Get a nice dog hug from them for me?

Take care and let's just hope the Rituxan stops this in it's tracks...

(((hugs)))
 

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Hey Raglet

I think you've every right to be very very mad, sad, whatever.... It's all so frustrating and even here all we can do is send you huge hugs and hope that this treatment you're getting now will do a lot of good.

I think it's hard to be chirpy every day and hey, who are we kidding? Life isn't chirpy every day and sometimes we need to vent and explain and just know that someone out there is listening.

hugs :hug:
Katharine
 

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What terribly, cruel rules we sometimes find ourselves the victim of. :sad: Im really sorry that you are so sad Raglet. I would be bawling my brains out if it were me to be honest.

Im glad it helps a bit to let others know what is going on. Its so important that people truly understand the heartache and devastation that this disease bestows on some people.

Thinking of you and holding hands with you in your ongoing battle....

Luv n stuff
Joan:rose:
 

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((((((((((((Raglet)))))))))))

I feel so upset reading your post :sad: I'm so sorry you are going through so much....you are very brave & cope amazingly well! I know I wouldn't cope as well at all!

I am speechless regarding your funding committee..their system is an utter disgrace & makes my blood boil :hissy:

I'm sorry I'm not helping at all :eek: sending you big sympathetic hugs :there:
and like Joan I would also like to hold your hands in your ongoing battle........:love2:

take good care raglet,thinking of you
love karen x
 

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(((Raglet))))

Sending big soft, gentle hugs your way.

I would be very ticked off too. All the stupid hoops we have to jump threw to get what we need badly.:mad:

I bet your dogs are very content to be with you. They sense how you are feeling.
Take care Raglet,

Love,
Lyn
 

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Hi Raglet,

I might be arrested if I said what I would like to do to the people in charge of these decisions. Instead my thoughts and best wishes will be with you.

Take care,
Lazylegs
 

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Raglet - life and 'systems' are just utter crap sometimes! :mad:

I'm just catching up on how you've been over the past couple of days and I'm so glad that you didn't have such a bad reaction this time. When I thought about you on Wednesday I realised that it was probably Thursday for you by then DOH!

With the cocktail of drugs you've just had (shaken not stirred) it's no wonder your emotions are all over the place. You are also coming to terms with the recent increased dysarthria. I hate to hear what you have to deal with, if anyone deserves a break from all this you most certainly do. :hug:

Dogs are funny creatures - mine didn't get his walk till hubby came home at 5pm. He didn't whinge once but seemed to sense it was a bad day. Normally he drives me mad to get out - being a hound he craves scents! I loved your pics on the other thread.

Take good care lass, :flower2:

Pam xxx
 

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Dear Raglet,

I am sorry, for what your going through. :( You are amazingly strong. I hope
things turn around for you very soon.

I am glad, your friend is coming over to spend the day with you. Friends, can be so comforting.

Love,
Sandy
:hug:
 

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Discussion Starter · #13 ·
Thanks guys - I am feeling so much better this morning (this afternoon actually) - amazingly I slept for 8 hours, which is amazing given the amount of steroids I have been given. Usually I can only manage 5-6 hours no matter what I take, but this time I just crashed.

So I am feeling less devestated, more chirpy and the sun is out which is makes me more chirpy. The whole thing definitely sucks.

thank you all

raglet
 

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Raglet,
I understand your speech issues-that is what I did before retiring. So if you want to chat speech pm me:)
Insurance sucks and at the same time we have to feel grateful to not to have to pay cash for all this crap, but it doesn't make the waiting game any easier that is for sure!!!!:mad: :mad:
I have a puppy that is keeping me on my toes-my daughter is suposed to be the primary care giver, but while she is at school and activities it falls to my hubby and I. Today we went to a park and I just found the best shade because it was 103degrees and I am a big fat wimp with this hot weather. I did my best with the puppy, and here you have 2 big dogs. My other dog is a weiner dog and too old and only goes for walks at night-otherwise she is happy in the yard. I would love to post pictures as soon as I get the dds' help.:hehe: Thank God for our animals and children:lol:


HUgs,
Becca
 

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Discussion Starter · #15 ·
thank you sSSOOO much Becca - I am sure I will take you up on your offer when my brain is a bit clearer.

raglet
:)
 

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Raglet:

I can only begin to imagine what you are feeling, and I cannot even get my brain around what you are going through...

I wish caro was here with her pointy stick to poke the board or committee or who ever is in charge into using their brains instead of just sitting on them.

Thank goddness for pets and friends...I know I wouldn't always make it through without them too.

Much love and prayers for you.

Love Stephanie
 
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