Re: It gets worse was sucky day

[Guest guest]

What kind of surgery would it be?? Especially that you'd have to be in casts?? on your back, neck or what??? Sounds like your week is going from bad to worse sweetie! Once again, that totally bite the big one. You're in my Prayers.

Hugs,

[Guest guest]

Christy,

I'm so sorry to hear about your rotten week.

What surgery are they talking about? Who will do it? Which hospital? I have to be sure you'll get the best care possible. With a good surgeon you should hit the 80% goal. Hang in there! Hold onto Ronnie & . says Hi & he has a good idea how you feel after these appts. You're in our prayers.

Hugs,

-- It gets worse was sucky day

I just had another doctors appointment today with the neurologist and I'm headed back to surgery. We're going to see if we can do something about the nerve damage that's causing me to lose the use of my right hand and causing some numbness in the left. It's the same thing that's causing me to fall all the time when my left leg goes numb so hopefully we'll get something done. As he put it: 100% is complete success where we fix my arms and legs with no further damage. 80% is fixing my arms only with no further damage and 50% is fixing some things and making some things worse 0% is fixing nothing and really screwing everything up worse. We're aiming for between the 50 and 80% so that's a little scary!

We pretty much know we can't do anything about my legs. The arms we're hoping to fix but there's the possibility that it could not work and also the surgery could make it worse. Not doing it at all would guarantee it will get worse and I'll lose my motor skills completely. (You know my favorite question: what happens if we just leave everything alone?)

Even if we "fix the problem" it still won't ever be good as new but not fixing it leaves it open to more problems, those that can't be fixed when it gets to that point. So my favorite choice, not doing anything, is out of the question.

So once again, just as I've convinced myself life will be ok and I just have to plod along, someone kicks me back into the mud. Face first. It just might take a little longer for me to get up this time.

The good thing is that I LOVE my neurologist. He spent 45 minutes with me and it seems he is a patient of my rheumy's too! His hands are horribly disfigured from RA and we spent a while discussing different treatments we each have tried. He's on Enbrel right now. He said he loves it when people say to him "Oh, do you have some horrible disease?" (because of his hands, arms and legs being malformed) and he looks at them and say "No, why do you ask?" hehehehe I like this man. I consider myself lucky to have 2 doctors I really like. This one was very blunt with me and honest about the surgery and what to expect with or without it. I trust him.

He isn't doing the surgery and he recommends that I wait until cool weather since I will be in casts and that will be uncomfortable in the heat. So I'm going for my consult appointment but I'll try to schedule everything for maybe November but he said I shouldn't wait any longer than I have to because it is getting worse as the nerves swell.

Thank you everyone for the support and love you've shown. I appreciate it.

Christy

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

It should be a small incision on my upper back, lower neck if done with a laser or endoscope and then several incisions along my arms at "nerve" junctures which he explained but I was in lala land by then! On is inside my wrist, one is inside my elbow and a few in between there and one long-ways along my middle fingers. I'll admit that by the time he started describing the actual surgery, I was drifitng away! I was not in my happy place hehehe

RE: It gets worse was sucky day

What kind of surgery would it be?? Especially that you'd have to be in casts?? on your back, neck or what??? Sounds like your week is going from bad to worse sweetie! Once again, that totally bite the big one. You're in my Prayers.

Hugs,

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

I know understands! He's been there too huh? I don't know who WILL do it but it will be someone out of Tifton. I told him I do NOT want Dr. Choi or Dr. Hellman and I don't want it done in Albany. Albany has the humongous hospital conglomerate of the south and I just don't feel like you get good personalized care there. I think Tifton has the equipment they need and the surgeons have the skills required and I'd rather be where people know me and I have a name, not a number.

Can recommend a neurosurgeon? Dr. Giatras (have y'all seen him, ?) said there will be an orthopedic surgeon there too for the neck part.

OK I'm awake again and getting nervous and it isn't even scheduled yet!

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

So is it sorta like what they do for carparl tunnel, release the nerves? That's what is sounds like. A girl I used to work with had it done on her shoulders, inside her elbows and on her hands.

Find that happy place and stay there, and we'll all come to visit.

Hugs,

[Guest guest]

{{{{{{{{Christy}}}}}}}

x0x0x0x

Shirley

-- It gets worse was sucky day

I just had another doctors appointment today with the neurologist and I'm headed back to surgery. We're going to see if we can do something about the nerve damage that's causing me to lose the use of my right hand and causing some numbness in the left. It's the same thing that's causing me to fall all the time when my left leg goes numb so hopefully we'll get something done. As he put it: 100% is complete success where we fix my arms and legs with no further damage. 80% is fixing my arms only with no further damage and 50% is fixing some things and making some things worse 0% is fixing nothing and really screwing everything up worse. We're aiming for between the 50 and 80% so that's a little scary!

We pretty much know we can't do anything about my legs. The arms we're hoping to fix but there's the possibility that it could not work and also the surgery could make it worse. Not doing it at all would guarantee it will get worse and I'll lose my motor skills completely. (You know my favorite question: what happens if we just leave everything alone?)

Even if we "fix the problem" it still won't ever be good as new but not fixing it leaves it open to more problems, those that can't be fixed when it gets to that point. So my favorite choice, not doing anything, is out of the question.

So once again, just as I've convinced myself life will be ok and I just have to plod along, someone kicks me back into the mud. Face first. It just might take a little longer for me to get up this time.

The good thing is that I LOVE my neurologist. He spent 45 minutes with me and it seems he is a patient of my rheumy's too! His hands are horribly disfigured from RA and we spent a while discussing different treatments we each have tried. He's on Enbrel right now. He said he loves it when people say to him "Oh, do you have some horrible disease?" (because of his hands, arms and legs being malformed) and he looks at them and say "No, why do you ask?" hehehehe I like this man. I consider myself lucky to have 2 doctors I really like. This one was very blunt with me and honest about the surgery and what to expect with or without it. I trust him.

He isn't doing the surgery and he recommends that I wait until cool weather since I will be in casts and that will be uncomfortable in the heat. So I'm going for my consult appointment but I'll try to schedule everything for maybe November but he said I shouldn't wait any longer than I have to because it is getting worse as the nerves swell.

Thank you everyone for the support and love you've shown. I appreciate it.

Christy

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Yeah! sorta the same thing

RE: It gets worse was sucky day

So is it sorta like what they do for carparl tunnel, release the nerves? That's what is sounds like. A girl I used to work with had it done on her shoulders, inside her elbows and on her hands.

Find that happy place and stay there, and we'll all come to visit.

Hugs,

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Thanks Shirls........ we've been through a lot, haven't we?

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

It sounds serious but just remember that you are going to be having very talented skilled surgeons doing the deed...and you are going to be in LaLa Land all through the surgery and for a while into the earliest recovery period. No one wants to have surgery but when it is going to make you better, you just have to place your trust in a higher power and the docs and support staff.

Jane

RE: It gets worse was sucky day

What kind of surgery would it be?? Especially that you'd have to be in casts?? on your back, neck or what??? Sounds like your week is going from bad to worse sweetie! Once again, that totally bite the big one. You're in my Prayers.

Hugs,

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

It sounds serious but just remember that you are going to be having very talented skilled surgeons doing the deed...and you are going to be in LaLa Land all through the surgery and for a while into the earliest recovery period. No one wants to have surgery but when it is going to make you better, you just have to place your trust in a higher power and the docs and support staff.

Jane

RE: It gets worse was sucky day

What kind of surgery would it be?? Especially that you'd have to be in casts?? on your back, neck or what??? Sounds like your week is going from bad to worse sweetie! Once again, that totally bite the big one. You're in my Prayers.

Hugs,

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

The only time I'll be alone is from 12 (when Ronnie goes to work) until 3 (when gets home) and even now I've pretty much gotten it scheduled that I sleep during that time because Ronnie is so worried about me falling or hurting myself while he's gone. Actually my big concern is wiping my butt and showering. I guess if those are my worst sorries, I'm probably doing ok. LOL

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Christy, there are tools for wiping your butt. Remember a week or

so ago I posted a link to a site for Big People or some such name.

I have it bookmarked on my computer and will look it up tomorrow

(I'm on my son's computer right now). They have all sorts of

gadgets for being able to wipe one's butt and take care of some

other personal chores.

Jane

> The only time I'll be alone is from 12 (when Ronnie goes to work)

until 3 (when gets home) and even now I've pretty much gotten

it scheduled that I sleep during that time because Ronnie is so

worried about me falling or hurting myself while he's gone.

Actually my big concern is wiping my butt and showering. I guess if

those are my worst sorries, I'm probably doing ok. LOL

>

>

> sucky day

>

>

> I'm going to hide under the covers for the rest of

the week.

>

> Just came home from my rheumatologists office.

OK, I got home 4 hours ago and I have been bawling ever since.

>

> The humira is NOT working. All of my labs are

haywire and my sed rate has gone to 45. EVERYTHING is high. My doc

has always been straight with me and I love him for it but today I

cried like a baby and I know he wished he had lied to me. We're

running out of options, in his words. I've tried, and failed,

everything known for RA and it's either made me worse, didn't work

at all or created new problems. My lung tumor is growing, the good

news is the kidney tumor is still the same. My nerves are shot (I've

always known that with 2 teenagers but now it's really true!

Literally!) I see the nerve doc on Thursday though I don't know why

I'm bothering!!

>

> We're going to go to every week on the Humira (if

my damned insurance agrees! We have to fight them first!) We

thought of trying the Arava (the ONLY thing we haven't tried) but

it's too hard on the liver and my liver is going bonkers too! My

liver labs are bad and my upper abdomen is swollen so much I look

like a snowman. I guess I hadn't wanted to notice but he noticed

today and freaked. My edema is worse but we can't go any higher on

the lasix. If the Humira every week doesn't help or if my insurance

won't approve I'm screwed. Unless something new (and safe for my

other stuff) comes out soon, I'm finished.

>

> The only thing we can increase is my prozac and he

offered (damn near insisted) but I reminded him about my group here

and told him I'd get my support here, not from yet another pill.

OK, send it already! LOL

>

> He gave me a prescription for a lift chair (I told

him we were shopping for a comfortable recliner I could get out of

easily) but I think he would have given me a prescription for

anything in the world right then!

>

> We increased my Vicodin and he's calling my pain

management doc to see what else they can do on that end to " keep me

comfortable. " He said his reasoning is that he knows I'm still

young and he wants me to still have some quality of life when I'm

older. I told him that my quality of life right now sucks and I

don't even want to think about getting older.

>

> OK enough whining. I need to go read emails and

see what else is up. You guys have been chatty. I hope everything is

ok.

>

> I love you guys and I would be completely lost

without all of you by my side. It's nice to have someone there to

talk to and chat with and laugh with but it's also nice to know that

when life sucks and you can't take anymore, someone will be there to

hold your hand and hug you until you can continue on. Thank you

guys for the hugs and for holding my hand!

>

> Christy

>

>

>

>

> Please visit our website at:

> http://ACES_Autoimmune.tripod.com

>

>

[Guest guest]

oh please post it again. I lost everything Monday with the dratted worm so I don't ahve any of my saved stuff.

sucky day> > > I'm going to hide under the covers for the rest of the week.> > Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.> > The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!> > We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.> > The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL> > He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!> > We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.> > OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.> > I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!> > Christy> > > > > Please visit our website at:> http://ACES_Autoimmune.tripod.com > >

[Guest guest]

I'm getting so tired of losing everything & trying to replace it. & the promised replacement tower isn't here yet, so I'll still lose everything one more time (or at least have to transfer it). Guess I'll have to call Dell tomorrow & threaten them again. I am not happy, I feel bad, & they really don't want to have to deal with me. Maybe I'll call them today, even if it Sun. Well it's Sun here; when is it in New Delhi?

-- Re: It gets worse was sucky day

oh please post it again. I lost everything Monday with the dratted worm so I don't ahve any of my saved stuff.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Sorry to hear about the surgery, but I'm praying that you'll get the 100% result.

Glad to hear that the neurologist with the RA isn't doing the surgery, LOL---he sounds like a great Doc, though.

Now--when do you find out about the lung tumor?

You remain in my thoughts and prayers.

((((hugs))))

Kathy

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

LOL--the showering part you'll have plenty of available help for. The wiping your butt part, LOL--you find out who your friends are.

Kathy

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

There are several different tools for that task, BUT if her arms are in casts she probably won't be able to manipulate them very well and will still need help.

Christy--maybe you need a bidet?

Kathy

sucky day> > > I'm going to hide under the covers for the rest of the week.> > Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.> > The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!> > We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.> > The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL> > He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!> > We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.> > OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.> > I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!> > Christy> > > > > Please visit our website at:> http://ACES_Autoimmune.tripod.com > >

[Guest guest]

There is a very reasonable bidet setup that is on the site I

forwarded to Christy. The cleaning sponges and wands that are on

there will make it easier for her " friends " to help her clean her

butt. LOL

Jane

> > The only time I'll be alone is from 12 (when Ronnie goes to

work)

> until 3 (when gets home) and even now I've pretty much

gotten

> it scheduled that I sleep during that time because Ronnie is so

> worried about me falling or hurting myself while he's gone.

> Actually my big concern is wiping my butt and showering. I

guess if

> those are my worst sorries, I'm probably doing ok. LOL

> >

> >

> > sucky day

> >

> >

> > I'm going to hide under the covers for the

rest of

> the week.

> >

> > Just came home from my rheumatologists

office.

> OK, I got home 4 hours ago and I have been bawling ever since.

> >

> > The humira is NOT working. All of my labs are

> haywire and my sed rate has gone to 45. EVERYTHING is high. My

doc

> has always been straight with me and I love him for it but today

I

> cried like a baby and I know he wished he had lied to me. We're

> running out of options, in his words. I've tried, and failed,

> everything known for RA and it's either made me worse, didn't

work

> at all or created new problems. My lung tumor is growing, the

good

> news is the kidney tumor is still the same. My nerves are shot

(I've

> always known that with 2 teenagers but now it's really true!

> Literally!) I see the nerve doc on Thursday though I don't know

why

> I'm bothering!!

> >

> > We're going to go to every week on the Humira

(if

> my damned insurance agrees! We have to fight them first!) We

> thought of trying the Arava (the ONLY thing we haven't tried)

but

> it's too hard on the liver and my liver is going bonkers too! My

> liver labs are bad and my upper abdomen is swollen so much I

look

> like a snowman. I guess I hadn't wanted to notice but he

noticed

> today and freaked. My edema is worse but we can't go any higher

on

> the lasix. If the Humira every week doesn't help or if my

insurance

> won't approve I'm screwed. Unless something new (and safe for

my

> other stuff) comes out soon, I'm finished.

> >

> > The only thing we can increase is my prozac

and he

> offered (damn near insisted) but I reminded him about my group

here

> and told him I'd get my support here, not from yet another

pill.

> OK, send it already! LOL

> >

> > He gave me a prescription for a lift chair (I

told

> him we were shopping for a comfortable recliner I could get out

of

> easily) but I think he would have given me a prescription for

> anything in the world right then!

> >

> > We increased my Vicodin and he's calling my

pain

> management doc to see what else they can do on that end to " keep

me

> comfortable. " He said his reasoning is that he knows I'm still

> young and he wants me to still have some quality of life when

I'm

> older. I told him that my quality of life right now sucks and I

> don't even want to think about getting older.

> >

> > OK enough whining. I need to go read emails

and

> see what else is up. You guys have been chatty. I hope

everything is

> ok.

> >

> > I love you guys and I would be completely lost

> without all of you by my side. It's nice to have someone there

to

> talk to and chat with and laugh with but it's also nice to know

that

> when life sucks and you can't take anymore, someone will be

there to

> hold your hand and hug you until you can continue on. Thank you

> guys for the hugs and for holding my hand!

> >

> > Christy

> >

> >

> >

> >

> > Please visit our website at:

> > http://ACES_Autoimmune.tripod.com

> >

> >

[Guest guest]

That's good.

I guess this is when you find out who your true friends are, LOL

Kathy

sucky day> > > > > > I'm going to hide under the covers for the rest of > the week.> > > > Just came home from my rheumatologists office. > OK, I got home 4 hours ago and I have been bawling ever since.> > > > The humira is NOT working. All of my labs are > haywire and my sed rate has gone to 45. EVERYTHING is high. My doc > has always been straight with me and I love him for it but today I > cried like a baby and I know he wished he had lied to me. We're > running out of options, in his words. I've tried, and failed, > everything known for RA and it's either made me worse, didn't work > at all or created new problems. My lung tumor is growing, the good > news is the kidney tumor is still the same. My nerves are shot (I've > always known that with 2 teenagers but now it's really true! > Literally!) I see the nerve doc on Thursday though I don't know why > I'm bothering!!> > > > We're going to go to every week on the Humira (if > my damned insurance agrees! We have to fight them first!) We > thought of trying the Arava (the ONLY thing we haven't tried) but > it's too hard on the liver and my liver is going bonkers too! My > liver labs are bad and my upper abdomen is swollen so much I look > like a snowman. I guess I hadn't wanted to notice but he noticed > today and freaked. My edema is worse but we can't go any higher on > the lasix. If the Humira every week doesn't help or if my insurance > won't approve I'm screwed. Unless something new (and safe for my > other stuff) comes out soon, I'm finished.> > > > The only thing we can increase is my prozac and he > offered (damn near insisted) but I reminded him about my group here > and told him I'd get my support here, not from yet another pill. > OK, send it already! LOL> > > > He gave me a prescription for a lift chair (I told > him we were shopping for a comfortable recliner I could get out of > easily) but I think he would have given me a prescription for > anything in the world right then!> > > > We increased my Vicodin and he's calling my pain > management doc to see what else they can do on that end to "keep me > comfortable." He said his reasoning is that he knows I'm still > young and he wants me to still have some quality of life when I'm > older. I told him that my quality of life right now sucks and I > don't even want to think about getting older.> > > > OK enough whining. I need to go read emails and > see what else is up. You guys have been chatty. I hope everything is > ok.> > > > I love you guys and I would be completely lost > without all of you by my side. It's nice to have someone there to > talk to and chat with and laugh with but it's also nice to know that > when life sucks and you can't take anymore, someone will be there to > hold your hand and hug you until you can continue on. Thank you > guys for the hugs and for holding my hand!> > > > Christy> > > > > > > > > > Please visit our website at:> > http://ACES_Autoimmune.tripod.com > > > >

[Guest guest]

Still waiting for my pulmonologist appt. We were waiting until after the neurology appt that I just had.

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

You know, we've been married 13 years and I STILL do not want that man wiping my ass.

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Yeah--I know how that is. I wouldn't mind doing it for Denny (I've wiped more asses as a nurse than I care to remember, LOL) BUT he would mind. And I really don't want anyone else doing mine, LOL

Kathy

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Unfortunately, this happens to us sometimes.... has had to wipe mine so many times....Especially when I was bedridden for a year and had to use the good ole bed pan....Couldn't even stand to get on to a bedside.....Even my stepson had to do it when he was 14 and came to stay for awhile....He's as strong as his father in doing things like this....Ya learn to accept it....

------------------------------------------------------------------ [NASH Group Website]http://www.geocities.com/liver_nash/

Subscribe: NASH-Non-Alcoholic-Steatohepatitis-subscribe Unsubscribe: NASH-Non-Alcoholic-Steatohepatitis-unsubscribe List owner: NASH-Non-Alcoholic-Steatohepatitis-owner

sucky day

I'm going to hide under the covers for the rest of the week.

Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.

The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!

We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.

The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL

He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!

We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.

OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.

I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!

Christy

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Christy, I don't think that is one of the private issues that any of

us really want to deal with no matter how long we've been married or

living with someone. One of my friends in CA stepped off a curb

wrong and fell and broke one wrist and sprained the elbow on the

other arm so she had to deal with this. She said that despite the

fact that she and Hank have been married more than 40 years, it was

the most humiliating thing to have to have him wipe her butt and

also help her put her bra on and shift the boobs around in place.

You'll handle it fine when the time comes though. We all know that

it's not by choice that you will be doing these things but because

of the love you share that you help out a spouse in a time like this.

It's no different than when a spouse starts having to diaper their

ill mate because the mate no longer can do it for themselves...it's

just something you look past and get in there and do. My Mom did it

for my Dad for 7 years and I sure 's sister never thought she

would be doing such things for her Mom...but you do it because you

love them and want to make them comfortable. The difference is that

you will be cognizant of all that is happening and a stroke patient

or someone with another illness may not be. You'll do fine.

Jane

> You know, we've been married 13 years and I STILL do not want that

man wiping my ass.

>

>

> sucky day

>

>

> I'm going to hide under the covers for the

rest of the week.

>

> Just came home from my rheumatologists

office. OK, I got home 4 hours ago and I have been bawling ever

since.

>

> The humira is NOT working. All of my labs are

haywire and my sed rate has gone to 45. EVERYTHING is high. My doc

has always been straight with me and I love him for it but today I

cried like a baby and I know he wished he had lied to me. We're

running out of options, in his words. I've tried, and failed,

everything known for RA and it's either made me worse, didn't work

at all or created new problems. My lung tumor is growing, the good

news is the kidney tumor is still the same. My nerves are shot (I've

always known that with 2 teenagers but now it's really true!

Literally!) I see the nerve doc on Thursday though I don't know why

I'm bothering!!

>

> We're going to go to every week on the Humira

(if my damned insurance agrees! We have to fight them first!) We

thought of trying the Arava (the ONLY thing we haven't tried) but

it's too hard on the liver and my liver is going bonkers too! My

liver labs are bad and my upper abdomen is swollen so much I look

like a snowman. I guess I hadn't wanted to notice but he noticed

today and freaked. My edema is worse but we can't go any higher on

the lasix. If the Humira every week doesn't help or if my insurance

won't approve I'm screwed. Unless something new (and safe for my

other stuff) comes out soon, I'm finished.

>

> The only thing we can increase is my prozac

and he offered (damn near insisted) but I reminded him about my

group here and told him I'd get my support here, not from yet

another pill. OK, send it already! LOL

>

> He gave me a prescription for a lift chair (I

told him we were shopping for a comfortable recliner I could get out

of easily) but I think he would have given me a prescription for

anything in the world right then!

>

> We increased my Vicodin and he's calling my

pain management doc to see what else they can do on that end

to " keep me comfortable. " He said his reasoning is that he knows

I'm still young and he wants me to still have some quality of life

when I'm older. I told him that my quality of life right now sucks

and I don't even want to think about getting older.

>

> OK enough whining. I need to go read emails

and see what else is up. You guys have been chatty. I hope

everything is ok.

>

> I love you guys and I would be completely lost

without all of you by my side. It's nice to have someone there to

talk to and chat with and laugh with but it's also nice to know that

when life sucks and you can't take anymore, someone will be there to

hold your hand and hug you until you can continue on. Thank you

guys for the hugs and for holding my hand!

>

> Christy

>

>

>

>

> Please visit our website at:

> http://ACES_Autoimmune.tripod.com

>

>

[Guest guest]

Thank you Jane. That helped give it a different perspective. I guess it just seems harder because we joke about it and we don't want to face the joking as reality.

sucky day> > > I'm going to hide under the covers for the rest of the week.> > Just came home from my rheumatologists office. OK, I got home 4 hours ago and I have been bawling ever since.> > The humira is NOT working. All of my labs are haywire and my sed rate has gone to 45. EVERYTHING is high. My doc has always been straight with me and I love him for it but today I cried like a baby and I know he wished he had lied to me. We're running out of options, in his words. I've tried, and failed, everything known for RA and it's either made me worse, didn't work at all or created new problems. My lung tumor is growing, the good news is the kidney tumor is still the same. My nerves are shot (I've always known that with 2 teenagers but now it's really true! Literally!) I see the nerve doc on Thursday though I don't know why I'm bothering!!> > We're going to go to every week on the Humira (if my damned insurance agrees! We have to fight them first!) We thought of trying the Arava (the ONLY thing we haven't tried) but it's too hard on the liver and my liver is going bonkers too! My liver labs are bad and my upper abdomen is swollen so much I look like a snowman. I guess I hadn't wanted to notice but he noticed today and freaked. My edema is worse but we can't go any higher on the lasix. If the Humira every week doesn't help or if my insurance won't approve I'm screwed. Unless something new (and safe for my other stuff) comes out soon, I'm finished.> > The only thing we can increase is my prozac and he offered (damn near insisted) but I reminded him about my group here and told him I'd get my support here, not from yet another pill. OK, send it already! LOL> > He gave me a prescription for a lift chair (I told him we were shopping for a comfortable recliner I could get out of easily) but I think he would have given me a prescription for anything in the world right then!> > We increased my Vicodin and he's calling my pain management doc to see what else they can do on that end to "keep me comfortable." He said his reasoning is that he knows I'm still young and he wants me to still have some quality of life when I'm older. I told him that my quality of life right now sucks and I don't even want to think about getting older.> > OK enough whining. I need to go read emails and see what else is up. You guys have been chatty. I hope everything is ok.> > I love you guys and I would be completely lost without all of you by my side. It's nice to have someone there to talk to and chat with and laugh with but it's also nice to know that when life sucks and you can't take anymore, someone will be there to hold your hand and hug you until you can continue on. Thank you guys for the hugs and for holding my hand!> > Christy> > > > > Please visit our website at:> http://ACES_Autoimmune.tripod.com > >