RE: body betrayal?

[Guest guest]

Rose, I was just thinking about my 'new norm' yesterday. I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since. I hate having to ask/beg for more and more help and expect less and less. I used to keep a very decent house and now I am totally embarrassed to have anyone over. it takes me days to clean up a little bit. I get exhausted SOOO easily. I haven't left the house since Christmas day. The least bit of movement gives me a dull headache and everything seems so loud. The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week. This morning I was woken early and I was between crying and

swearing. My nerves are on edge and i feel on the edge of slapping someone...(lol). The things I used to be able to handle or think through are totally beyond me now. This new 'norm' is very very scary. I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with. lots of hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I

worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a

better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

, it's a bummer, isn't it? I'm an optimist by nature, and you seem like a

glass half full kinda gal yourself, but some days it's so hard to keep a

positive attitude. The thing that helps me most is seeing how people all over

the globe are suffering, most with almost zero chance of life getting better.

Then I remember that I really do live like royalty & it's easier to be geateful.

Of coursr, there are plenty of times that I just push those images from my mind

& have a big pity party for myseld. Why me? It isn't fair! I've had enough! Yada

yada yada. It's kind of embarrassing. But about then I see a news story or hear

from one of my NS family what they are going thru, and it helps get me back in a

state of gratitude. Please excuse my ramblings. I got up to potty & I'm starting

to fall asleep again. I can't do it anymore. I wish you could reset your buttons

& be back where you used to be. This probaby makes no sense because

-------- I keep snoozing! I give up. Feel weller!

Date: Friday, March 25, 2011 9:07:39 pm

To: Neurosarcoidosis

Subject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday.  I was thinking that

about a year and a half ago I dropped to a less functional norm and i've been

depressed and bitchy about it ever since.  I hate having to ask/beg for more and

more help and expect less and less.  I used to keep a very decent house and now

I am totally embarrassed to have anyone over.  it takes me days to clean up a

little bit.  I get exhausted SOOO easily.   I haven't left the house since

Christmas day.  The least bit of movement gives me a dull headache and

everything seems  so loud.  The landlords have been putting up a ceiling in the

attic above our apartment and they have been moving stuff, pounding, sawing,

etc. all week.  This morning I was woken early and I was between crying and

swearing.  My nerves are on edge and i feel on the edge of slapping

someone...(lol).  The things I used to be able to handle or think through are

totally beyond me now.   This new

'norm' is very very scary.   I hope and pray your pain get resolved soon or at

the very least gets to a level you can deal with.   lots of hugs   S.

Life may not always be the party we hoped for, but while we're here we might as

well dance!

Subject: body betrayal?

To: neurosarcoidosis

Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my

warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! 

Between that 6-hour excursion to the sarc doc & my cold, I was wiped out.  My

leg pain is better, at least while sitting or lying down.  Still can't stand for

more than a few minutes without the severe cramping in my hip & down my leg, but

it's a big improvement over last week!  I have an appt with a surgeon in two

weeks to see if there are any possible surgical options.  Meanwhile I'm trying

to go about my business as usual.  One thing I hate about situations like this

is that now I feel like I have to be on guard all the time & very careful how I

move.  When that awful leg pain started 2 weeks ago I had just turned to my

left.  We don't know if that triggered it, or it was just a coincidence, but now

I don't trust my body.  I worry that just the wrong move will start it up

again.  The sarc

has been bad enough; before that I had a lot of confidence in my body.  I had

already been having back problems for many years, but nothing I couldn't handle

or work around.  Then the sarc monster had to butt into my life & force me to

stop, decrease or modify so many of my activities.  But I made adjustments (with

much bitching & complaining) & learned my " new norm. "   Well, several new norms

as more symptoms popped up.  But for several years things had been pretty

stable.  Then this happened & now I catch myself creeping around like an old

lady, afraid to make a wrong move.  I can barely remember how it felt to be

carefree in physical activities; just enjoying myself & assuming that all my

body parts would do what they were supposed to do!  It almost feels like a

betrayal; that sounds a little strong, but I can't think of a better

description.  On the other hand, my body could make a good case for being

betrayed by me--years of poor nutrition,

neglect, erratic exercise, etc.  Maybe it's payback!  Anyway, I know that fear

& overprotection can actually cause injury, so I'm trying to do my mindfulness

meditation & consciously relax when I catch myself guarding too much.

Ramblin' Rose

Moderator

 

" I child-proofed my home and they STILL get in! "      (Bumper sticker)

[Guest guest]

 

it's often hard to stay optimistic, and just when you think you're used to your symptoms or found a way to deal with it, even if only a little bit, another one comes along.  i'm still trying to find a balance with my new 24-hour sleepiness and nearly constant headache.  but thru all the years i've always told myself to not look on this as any form of body betrayal.  i prefer the attitude that says i'm not a diseased person, i'm just a person with a disease.  or, more specifically, i don't live in a diseased body, i live in a healthy body that's trying to fight off a disease as best it can.

 

it helps me to look at it that way.  just my 2 cents

 

chris

, it's a bummer, isn't it? I'm an optimist by nature, and you seem like a glass half full kinda gal yourself, but some days it's so hard to keep a positive attitude. The thing that helps me most is seeing how people all over the globe are suffering, most with almost zero chance of life getting better. Then I remember that I really do live like royalty & it's easier to be geateful. Of coursr, there are plenty of times that I just push those images from my mind & have a big pity party for myseld. Why me? It isn't fair! I've had enough! Yada yada yada. It's kind of embarrassing. But about then I see a news story or hear from one of my NS family what they are going thru, and it helps get me back in a state of gratitude. Please excuse my ramblings. I got up to potty & I'm starting to fall asleep again. I can't do it anymore. I wish you could reset your buttons & be back where you used to be. This probaby makes no sense because

-------- I keep snoozing! I give up. Feel weller!Date: Friday, March 25, 2011 9:07:39 pmTo: Neurosarcoidosis From: Solberg

Subject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday.  I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since.  I hate having to ask/beg for more and more help and expect less and less.  I used to keep a very decent house and now I am totally embarrassed to have anyone over.  it takes me days to clean up a little bit.  I get exhausted SOOO easily.   I haven't left the house since Christmas day.  The least bit of movement gives me a dull headache and everything seems  so loud.  The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week.  This morning I was woken early and I was between crying and swearing.  My nerves are on edge and i feel on the edge of slapping someone...(lol).  The things I used to be able to handle or think through are totally beyond me now.   This new

 'norm' is very very scary.   I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with.   lots of hugs   S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours!  Between that 6-hour excursion to the sarc doc & my cold, I was wiped out.  My leg pain is better, at least while sitting or lying down.  Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week!  I have an appt with a surgeon in two weeks to see if there are any possible surgical options.  Meanwhile I'm trying to go about my business as usual.  One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move.  When that awful leg pain started 2 weeks ago I had just turned to my left.  We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.  I worry that just the wrong move will start it up again.  The sarc

 has been bad enough; before that I had a lot of confidence in my body.  I had already been having back problems for many years, but nothing I couldn't handle or work around.  Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities.  But I made adjustments (with much bitching & complaining) & learned my " new norm. "   Well, several new norms as more symptoms popped up.  But for several years things had been pretty stable.  Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move.  I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do!  It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description.  On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition,

 neglect, erratic exercise, etc.  Maybe it's payback!  Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator  " I child-proofed my home and they STILL get in! "      (Bumper sticker)------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-

Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

On the whole body betrayal theme - I was up in Sydney on Sunday to see the

amazing Australian musician / comedian Tim Minchin (somewhat similar to Tom

Lehrer) in concert at the Sydney Opera House (heavy cost energy / pain wise, but

totally worth it!!!). And one stanza of one of his brilliant songs really rang

true for me (and made me a bit weepy) :

This is my body

And I live in it

It's thirty-two and eight months old

It's changed a lot since it was new

It's done stuff it wasn't built to do

I often try to fill it up with wine

And the weirdest thing about it is

I spend so much time hating it

But it never says a bad word about me

This is my body

And it's mine

It's where I spend the vast majority of my time

It's not perfect

But it's mine

If you want to see him performing it, watch this :

(strong language advisory - which goes for most of his work, LOL)

xo

>

>

> it's often hard to stay optimistic, and just when you think you're used to

your symptoms or found a way to deal with it, even if only a little bit, another

one comes along. i'm still trying to find a balance with my new 24-hour

sleepiness and nearly constant headache. but thru all the years i've always

told myself to not look on this as any form of body betrayal. i prefer the

attitude that says i'm not a diseased person, i'm just a person with a disease.

or, more specifically, i don't live in a diseased body, i live in a healthy body

that's trying to fight off a disease as best it can.

>

> it helps me to look at it that way. just my 2 cents

>

> chris

>

>

> , it's a bummer, isn't it? I'm an optimist by nature, and you seem like a

glass half full kinda gal yourself, but some days it's so hard to keep a

positive attitude. The thing that helps me most is seeing how people all over

the globe are suffering, most with almost zero chance of life getting better.

Then I remember that I really do live like royalty & it's easier to be geateful.

Of coursr, there are plenty of times that I just push those images from my mind

& have a big pity party for myseld. Why me? It isn't fair! I've had enough! Yada

yada yada. It's kind of embarrassing. But about then I see a news story or hear

from one of my NS family what they are going thru, and it helps get me back in a

state of gratitude. Please excuse my ramblings. I got up to potty & I'm starting

to fall asleep again. I can't do it anymore. I wish you could reset your buttons

& be back where you used to be. This probaby makes no sense because

> -------- I keep snoozing! I give up. Feel weller!

> Date: Friday, March 25, 2011 9:07:39 pm

> To: Neurosarcoidosis

>

> Subject: Re: body betrayal?

>

> Rose, I was just thinking about my 'new norm' yesterday. I was thinking that

about a year and a half ago I dropped to a less functional norm and i've been

depressed and bitchy about it ever since. I hate having to ask/beg for more and

more help and expect less and less. I used to keep a very decent house and now

I am totally embarrassed to have anyone over. it takes me days to clean up a

little bit. I get exhausted SOOO easily. I haven't left the house since

Christmas day. The least bit of movement gives me a dull headache and

everything seems so loud. The landlords have been putting up a ceiling in the

attic above our apartment and they have been moving stuff, pounding, sawing,

etc. all week. This morning I was woken early and I was between crying and

swearing. My nerves are on edge and i feel on the edge of slapping

someone...(lol). The things I used to be able to handle or think through are

totally beyond me now. This new

> 'norm' is very very scary. I hope and pray your pain get resolved soon or

at the very least gets to a level you can deal with. lots of hugs S.

>

> Life may not always be the party we hoped for, but while we're here we might

as well dance!

>

>

>

>

>

> Subject: body betrayal?

> To: neurosarcoidosis

> Date: Friday, March 25, 2011, 4:59 AM

>

>

>

>

>

>

>

>

>

>

> Boy, after I got home from Indianapolis, I took a percocet, got in bed with my

warm rice sox & heating pad all tucked along my leg, & slept for 5 hours!

Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My

leg pain is better, at least while sitting or lying down. Still can't stand for

more than a few minutes without the severe cramping in my hip & down my leg, but

it's a big improvement over last week! I have an appt with a surgeon in two

weeks to see if there are any possible surgical options. Meanwhile I'm trying

to go about my business as usual. One thing I hate about situations like this

is that now I feel like I have to be on guard all the time & very careful how I

move. When that awful leg pain started 2 weeks ago I had just turned to my

left. We don't know if that triggered it, or it was just a coincidence, but now

I don't trust my body. I worry that just the wrong move will start it up again.

The sarc

> has been bad enough; before that I had a lot of confidence in my body. I had

already been having back problems for many years, but nothing I couldn't handle

or work around. Then the sarc monster had to butt into my life & force me to

stop, decrease or modify so many of my activities. But I made adjustments (with

much bitching & complaining) & learned my " new norm. " Well, several new norms

as more symptoms popped up. But for several years things had been pretty

stable. Then this happened & now I catch myself creeping around like an old

lady, afraid to make a wrong move. I can barely remember how it felt to be

carefree in physical activities; just enjoying myself & assuming that all my

body parts would do what they were supposed to do! It almost feels like a

betrayal; that sounds a little strong, but I can't think of a better

description. On the other hand, my body could make a good case for being

betrayed by me--years of poor nutrition,

> neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that

fear & overprotection can actually cause injury, so I'm trying to do my

mindfulness meditation & consciously relax when I catch myself guarding too

much.

>

>

> Ramblin' Rose

> Moderator

>

> " I child-proofed my home and they STILL get in! " (Bumper sticker)

>

>

>

>

>

>

>

>

>

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Oh Rose, I'm sorry your going through such a difficult time, I hope the Drs can find something to help you with your pain. your in my prayers. Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours!  Between that 6-hour excursion to the sarc doc & my cold, I was wiped out.  My leg pain is better, at least while sitting or lying down.  Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week!  I have an appt with a surgeon in two weeks to see if there are any possible surgical options.  Meanwhile I'm trying to go about my business as usual.  One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move.  When that awful leg pain started 2 weeks ago I had just turned to my left.  We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.  I worry that just the wrong move will start it up again.  The sarc has been bad enough; before that I had a lot of confidence in my body.  I had already been having back problems for many years, but nothing I couldn't handle or work around.  Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities.  But I made adjustments (with much bitching & complaining) & learned my " new norm. "   Well, several new norms as more symptoms popped up.  But for several years things had been pretty stable.  Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move.  I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do!  It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description.  On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc.  Maybe it's payback!  Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

[Guest guest]

this is really a good way to let people know how we feel. Hats off to you on your attitude. I will adopt it if you don't mind.

Jackie

body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AMBoy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose and , I'm so sorry things are difficult now. And yes we are all strong people, but no one can take a continual stream without stress, it just doesn't happen; especially when it is a long term trip. You both are amazing, and I know you will back standing solid soon, in the meantime you comfort and relief are in my thoughts and prayers. Pls take care, connie

To: Neurosarcoidosis Sent: Mon, March 28, 2011 11:46:52 PMSubject: Re: body betrayal?

this is really a good way to let people know how we feel. Hats off to you on your attitude. I will adopt it if you don't mind.

Jackie

body betrayal?To: neurosarcoidosis Date:

Friday, March 25, 2011, 4:59 AMBoy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or

it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost

feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant

messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

,

I do not like my "new norm" either. Because of the decrease in my vision and energy level, I need to rely on people to take me places. I feel like such a bother also asking for a ride somewhere, just to do my weekly erands that I use to do without thinking. And then people ask - do you have to go here isn't there some where closer?? - that makes you feel guilty for even asking.... Oh run to the store for something, no problem - now it is a problem. Forget a last minute ingredient for dinner that night. How am I going to get it now. No one runs on last minute things to take me somewhere. It is soooo frustrating!!! Plus, when I go out and about now, people look at me differently now - because I am alot heavier. Even at the restaurant ordering food. The waitress asks are you looking for something healthy to eat or a filler?? You can forget about doing

anything big with the kids tooo, because I am just wiped after 15-20min. of activity. And now - not sure if it is from the meds or what, but I am getting short with little things. - Don't complain to me about a little cold you have, because what I am dealing with is much greater than that. I had to change my whole diet and life for this........Oh am I venting........Sorry.....I have been home alone all week. Although I have been talking to my dog, and she is a good listener, but she doesn't really talk back in a language that I can understand. This is not a very postitive email. Sorry. I am gratefull to be here hugging my kids goodnight and in the morning. Things could be a lot worse I know. I do have a lot of support behind me with friends for this thing I have. I guess I am just tired. It is late. Thanks for listening all.

To: Neurosarcoidosis Sent: Fri, March 25, 2011 6:11:35 PMSubject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday. I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since. I hate having to ask/beg for more and more help and expect less and less. I used to keep a very decent house and now I am totally embarrassed to have anyone over. it takes me days to clean up a little bit. I get exhausted SOOO easily. I haven't left the house since Christmas day. The least bit of movement gives me a dull headache and everything seems so loud. The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week. This morning I was woken early and I was between crying and swearing. My nerves are on edge and i feel on the edge of slapping

someone...(lol). The things I used to be able to handle or think through are totally beyond me now. This new 'norm' is very very scary. I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with. lots of hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust

my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I

can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]



You are just at the point that all of has been and will be again.]

I know all too well what you are saying. The one thing I worry is losing my independence. I drive but the other day my foot spazzemed and I ran over a handicapped sign. (go figure) I didn't do any damage but felt like a complete idiot. No foul I guess.

I used to be a biker grandma and took the grandkids on my motorcycle all the time. I had to sell it. My children and grands understand and after about 3 years of this monster they have come to the realization that I am who I am and not what I used to be. Hang in there.

Every one of us understand the frustration you are going through. I wish I could say it gets better but it does get to where you can deal with it. Family and friends, well it takes a bit longer. They really don't understand. How could they I don't understand either.

You come her anytime to vent. We have all done that. And like it or not we all understand.

I for one am glad I have this wonderful family to come to who does understand. I pray a thankful prayer every single day.

Like I said Hang in there and vent all you want.

God Bless you

Jackie

body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

, I want to add, the angry, frustration, is partly from the Pred. and when you get off that, it does get better.  I remember blowing up, and my husband or kids would say, I know it's the meds, or they would say Mom go take a nap:)  People are too quick to judge, I know I use to a heck of a lot more then I do now. I try not to judge now, but hey I'm not perfect. 

feel free to rant and rave anytime you like, usually when Rose is feeling better she will score your rant,  it's funny.  Take care and be easy on yourself, don't worry about the other people, no one knows what your going through, but we do:)

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 



  You are just at the point that all of has been and will be again.]

I know all too well what you are saying.  The one thing I worry is losing my independence.  I drive but the other day my foot spazzemed and I ran over a handicapped sign.  (go figure)     I didn't do any damage but felt like a complete idiot.  No foul I guess.

I used to be a biker grandma and took the grandkids on my motorcycle all the time.  I had to sell it.    My children and grands understand and after about 3 years of this monster they have come to the realization that I am who I am and not what I used to be.   Hang in there. 

Every one of us understand the frustration you are going through.  I wish I could say it gets better but it does get to where you can deal with it.  Family and friends, well it takes a bit longer.  They really don't understand.  How could they  I don't understand either.

You come her anytime to vent.  We have all done that.  And like it or not we all understand.

I for one am glad I have this wonderful family to come to who does understand.  I pray a thankful prayer every single day.

Like I said Hang in there and vent all you want.

God Bless you

Jackie

body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours!  Between that 6-hour excursion to the sarc doc & my cold, I was wiped out.  My leg pain is better, at least while sitting or lying down.  Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week!  I have an appt with a surgeon in two weeks to see if there are any possible surgical options.  Meanwhile I'm trying to go about my business as usual.  One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move.  When that awful leg pain started 2 weeks ago I had just turned to my left.  We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.  I worry that just the wrong move will start it up again.  The sarc has been bad enough; before that I had a lot of confidence in my body.  I had already been having back problems for many years, but nothing I couldn't handle or work around.  Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities.  But I made adjustments (with much bitching & complaining) & learned my " new norm. "   Well, several new norms as more symptoms popped up.  But for several years things had been pretty stable.  Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move.  I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do!  It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description.  On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc.  Maybe it's payback!  Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

[Guest guest]

Boy do I know about the side effects of the Pred. We are going through that again as they increased 's dose because the granulomas flared up in her brain again. We have been suffering what i calmly refer to as the Dr Jekyl / Mr Hyde symptoms here. .Hang in there and I will pray that things get better for you.Matt

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

Matt, I am sorry to hear that 's having a flare, I will keep her and you in my prayers. Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Boy do I know about the side effects of the Pred.  We are going through that again as they increased 's dose because the granulomas   flared up in her brain again.  We have been suffering what i calmly refer to as the Dr Jekyl / Mr Hyde symptoms here.   .Hang in there and I will pray that things get better for you.

Matt

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours!  Between that 6-hour excursion to the sarc doc & my cold, I was wiped out.  My leg pain is better, at least while sitting or lying down.  Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week!  I have an appt with a surgeon in two weeks to see if there are any possible surgical options.  Meanwhile I'm trying to go about my business as usual.  One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move.  When that awful leg pain started 2 weeks ago I had just turned to my left.  We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.  I worry that just the wrong move will start it up again.  The sarc has been bad enough; before that I had a lot of confidence in my body.  I had already been having back problems for many years, but nothing I couldn't handle or work around.  Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities.  But I made adjustments (with much bitching & complaining) & learned my " new norm. "   Well, several new norms as more symptoms popped up.  But for several years things had been pretty stable.  Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move.  I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do!  It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description.  On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc.  Maybe it's payback!  Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

[Guest guest]

, Pred really munks with your moods, and patience. Sometimes i just have to go off somewhere by myself, and I have told my boss that I am having a bad day and i will be closing my office door to work. He understands. Your not griping, if you don't let some of it out....even pressure cookers explode. I know what you mean about the weight too, I have changed so much alot of people don't recognize me. Alot of times I had from them, because I do not want them to see me. I still have pictures of a Connie I knew. But like you...Hey I'm kickin and you can't keep a good dog down. Personally I refer to myself as a PitBull, we never give up once we take hold. Hang in kiddo.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 1:05:28 AMSubject: Re: body betrayal?

,

I do not like my "new norm" either. Because of the decrease in my vision and energy level, I need to rely on people to take me places. I feel like such a bother also asking for a ride somewhere, just to do my weekly erands that I use to do without thinking. And then people ask - do you have to go here isn't there some where closer?? - that makes you feel guilty for even asking.... Oh run to the store for something, no problem - now it is a problem. Forget a last minute ingredient for dinner that night. How am I going to get it now. No one runs on last minute things to take me somewhere. It is soooo frustrating!!! Plus, when I go out and about now, people look at me differently now - because I am alot heavier. Even at the restaurant ordering food. The waitress asks are you looking for something healthy to eat or a filler?? You can forget about doing

anything big with the kids tooo, because I am just wiped after 15-20min. of activity. And now - not sure if it is from the meds or what, but I am getting short with little things. - Don't complain to me about a little cold you have, because what I am dealing with is much greater than that. I had to change my whole diet and life for this........Oh am I venting........Sorry.....I have been home alone all week. Although I have been talking to my dog, and she is a good listener, but she doesn't really talk back in a language that I can understand. This is not a very postitive email. Sorry. I am gratefull to be here hugging my kids goodnight and in the morning. Things could be a lot worse I know. I do have a lot of support behind me with friends for this thing I have. I guess I am just tired. It is late. Thanks for listening all.

To: Neurosarcoidosis Sent: Fri, March 25, 2011 6:11:35 PMSubject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday. I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since. I hate having to ask/beg for more and more help and expect less and less. I used to keep a very decent house and now I am totally embarrassed to have anyone over. it takes me days to clean up a little bit. I get exhausted SOOO easily. I haven't left the house since Christmas day. The least bit of movement gives me a dull headache and everything seems so loud. The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week. This morning I was woken early and I was between crying and swearing. My nerves are on edge and i feel on the edge of slapping

someone...(lol). The things I used to be able to handle or think through are totally beyond me now. This new 'norm' is very very scary. I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with. lots of hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust

my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I

can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

As we will be praying for you and your sweet Jen

To: Neurosarcoidosis Sent: Thu, March 31, 2011 7:02:32 PMSubject: Re: body betrayal?

Boy do I know about the side effects of the Pred. We are going through that again as they increased 's dose because the granulomas flared up in her brain again. We have been suffering what i calmly refer to as the Dr Jekyl / Mr Hyde symptoms here. .Hang in there and I will pray that things get better for you.

Matt

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.

I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of

a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

said, i don't live in a diseased body, i live in a healthy body that's trying to fight off a disease as best it can. it helps me to look at it that way. just my 2 cents

you are right. That's a much better attitude to have. You sound like a glass half-full kind of person!

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: skugger1@...Date: Mon, 28 Mar 2011 09:50:04 -0400Subject: Re: body betrayal?

it's often hard to stay optimistic, and just when you think you're used to your symptoms or found a way to deal with it, even if only a little bit, another one comes along. i'm still trying to find a balance with my new 24-hour sleepiness and nearly constant headache. but thru all the years i've always told myself to not look on this as any form of body betrayal. i prefer the attitude that says i'm not a diseased person, i'm just a person with a disease. or, more specifically, i don't live in a diseased body, i live in a healthy body that's trying to fight off a disease as best it can.

it helps me to look at it that way. just my 2 cents

chris

, it's a bummer, isn't it? I'm an optimist by nature, and you seem like a glass half full kinda gal yourself, but some days it's so hard to keep a positive attitude. The thing that helps me most is seeing how people all over the globe are suffering, most with almost zero chance of life getting better. Then I remember that I really do live like royalty & it's easier to be geateful. Of coursr, there are plenty of times that I just push those images from my mind & have a big pity party for myseld. Why me? It isn't fair! I've had enough! Yada yada yada. It's kind of embarrassing. But about then I see a news story or hear from one of my NS family what they are going thru, and it helps get me back in a state of gratitude. Please excuse my ramblings. I got up to potty & I'm starting to fall asleep again. I can't do it anymore. I wish you could reset your buttons & be back where you used to be. This probaby makes no sense because-------- I keep snoozing! I give up. Feel weller!Date: Friday, March 25, 2011 9:07:39 pmTo: Neurosarcoidosis From: Solberg Subject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday. I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since. I hate having to ask/beg for more and more help and expect less and less. I used to keep a very decent house and now I am totally embarrassed to have anyone over. it takes me days to clean up a little bit. I get exhausted SOOO easily. I haven't left the house since Christmas day. The least bit of movement gives me a dull headache and everything seems so loud. The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week. This morning I was woken early and I was between crying and swearing. My nerves are on edge and i feel on the edge of slapping someone...(lol). The things I used to be able to handle or think through are totally beyond me now. This new 'norm' is very very scary. I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with. lots of hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AMBoy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

, never apologize for expressing your feelings to us. That's a big reason for this group's existence. We all understand. Like you, I tend to think my problems are small compared to the suffering in many parts of the world. But knowing that others are suffering doesn't mean that we have to stuff our feelings. We are entitled to grieve, rage, vent, cry, whatever is needed. I've only had a few weeks that I couldn't drive, but it was enough that I can empathize with you. There's another loss--independence.

You are right about the dog; they are excellent listeners. Too bad they can't drive.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 30 Mar 2011 22:05:28 -0700Subject: Re: body betrayal?

,

I do not like my "new norm" either. Because of the decrease in my vision and energy level, I need to rely on people to take me places. I feel like such a bother also asking for a ride somewhere, just to do my weekly erands that I use to do without thinking. And then people ask - do you have to go here isn't there some where closer?? - that makes you feel guilty for even asking.... Oh run to the store for something, no problem - now it is a problem. Forget a last minute ingredient for dinner that night. How am I going to get it now. No one runs on last minute things to take me somewhere. It is soooo frustrating!!! Plus, when I go out and about now, people look at me differently now - because I am alot heavier. Even at the restaurant ordering food. The waitress asks are you looking for something healthy to eat or a filler?? You can forget about doing anything big with the kids tooo, because I am just wiped after 15-20min. of activity. And now - not sure if it is from the meds or what, but I am getting short with little things. - Don't complain to me about a little cold you have, because what I am dealing with is much greater than that. I had to change my whole diet and life for this........Oh am I venting........Sorry.....I have been home alone all week. Although I have been talking to my dog, and she is a good listener, but she doesn't really talk back in a language that I can understand. This is not a very postitive email. Sorry. I am gratefull to be here hugging my kids goodnight and in the morning. Things could be a lot worse I know. I do have a lot of support behind me with friends for this thing I have. I guess I am just tired. It is late. Thanks for listening all.

To: Neurosarcoidosis Sent: Fri, March 25, 2011 6:11:35 PMSubject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday. I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since. I hate having to ask/beg for more and more help and expect less and less. I used to keep a very decent house and now I am totally embarrassed to have anyone over. it takes me days to clean up a little bit. I get exhausted SOOO easily. I haven't left the house since Christmas day. The least bit of movement gives me a dull headache and everything seems so loud. The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week. This morning I was woken early and I was between crying and swearing. My nerves are on edge and i feel on the edge of slapping someone...(lol). The things I used to be able to handle or think through are totally beyond me now. This new 'norm' is very very scary. I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with. lots of hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

Very well said, Jackie.Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: shadowme810@...Date: Thu, 31 Mar 2011 11:55:37 -0500Subject: Re: body betrayal? You are just at the point that all of has been and will be again.]I know all too well what you are saying. The one thing I worry is losing my independence. I drive but the other day my foot spazzemed and I ran over a handicapped sign. (go figure) I didn't do any damage but felt like a complete idiot. No foul I guess.I used to be a biker grandma and took the grandkids on my motorcycle all the time. I had to sell it. My children and grands understand and after about 3 years of this monster they have come to the realization that I am who I am and not what I used to be. Hang in there. Every one of us understand the frustration you are going through. I wish I could say it gets better but it does get to where you can deal with it. Family and friends, well it takes a bit longer. They really don't understand. How could they I don't understand either.You come her anytime to vent. We have all done that. And like it or not we all understand.I for one am glad I have this wonderful family to come to who does understand. I pray a thankful prayer every single day.Like I said Hang in there and vent all you want.God Bless youJackie body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AMBoy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

Just wanted to share what I looked like after year one of this disease. I hate to look in the mirror and see what I look like today. I know some of it is age (this picture was taken fourteen years ago), but since I didn't change sizes from age 13 to age 36, and my mom and my sister are thin, I think I would have stayed that way if not for all the meds.Like Rose, though, I do stop myself every time I am having a pity party and count my blessings. I have so much to be thankful for. My ankle is healing, my husband has been nice to me lately (it's spring break and he is a teacher), and both of my kids appear to be happy these days. All that on top of living like a queen compared to the rest of the world -- I make myself feel better just thinking

about it. Still, it would be nice to feel a little better, have more energy, and get out of the house more. I just miss my life pre-illness.Guess I slipped into a little pity party anyway. (Sorry.) I just hope I remember to log back on at ten so I can chat to a few people who know what it's like to deal with all of this. If I forget again, kick me in the virtual pants!To: Neurosarcoidosis Sent: Thu,

March 31, 2011 2:40:06 PMSubject: Re: body betrayal?

, I want to add, the angry, frustration, is partly from the Pred. and when you get off that, it does get better. I remember blowing up, and my husband or kids would say, I know it's the meds, or they would say Mom go take a nap:) People are too quick to judge, I know I use to a heck of a lot more then I do now. I try not to judge now, but hey I'm not perfect.

feel free to rant and rave anytime you like, usually when Rose is feeling better she will score your rant, it's funny. Take care and be easy on yourself, don't worry about the other people, no one knows what your going through, but we do:)

Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb



You are just at the point that all of has been and will be again.]

I know all too well what you are saying. The one thing I worry is losing my independence. I drive but the other day my foot spazzemed and I ran over a handicapped sign. (go figure) I didn't do any damage but felt like a complete idiot. No foul I guess.

I used to be a biker grandma and took the grandkids on my motorcycle all the time. I had to sell it. My children and grands understand and after about 3 years of this monster they have come to the realization that I am who I am and not what I used to be. Hang in there.

Every one of us understand the frustration you are going through. I wish I could say it gets better but it does get to where you can deal with it. Family and friends, well it takes a bit longer. They really don't understand. How could they I don't understand either.

You come her anytime to vent. We have all done that. And like it or not we all understand.

I for one am glad I have this wonderful family to come to who does understand. I pray a thankful prayer every single day.

Like I said Hang in there and vent all you want.

God Bless you

Jackie

body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body. I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

1 of 1 File(s)

kelty wedding.webarchive

[Guest guest]

 

back in the late '90s when i was learning that this disease was going to be a part of my life & i was trying to find a way to deal with it, i started my own online sarcoidosis mailing list.  back then there were no yahoo groups, i had to put up my own website,  buy some expensive software to run on my computer to do all the email sending and receiving, etc.  my computer would dial up its phone modem every hour & check for email to be received & distributed to members of my new mailing list.  it wasn't a huge success, but for a while it did put me in touch with a handful of people who were going thru some similar things.  i will never forget one email from one member who wrote about how he was learning the hard way about the effects of prednisone.  his post spoke of an event at the dinner table at his house that evening, how he had yelled furiously at his eight year old son, threw his food in the trash, took him by the arm and sent him to his room, all because he didn't pass the salt fast enough when asked to do so.  it was obvious in his post that he felt badly & was ashamed of his actions.  it sure made it clear to me that i wasn't the only one having anger issues with prednisone.  i still think of that guy on occasion, i hope he & his family are okay & that they all found a way to cope with it.

 

had a visit with my ophthalmologist this afternoon, the inflammation in my eyes isn't going down fast enough, so he's upped my prednisone from 30mg to 60mg again for a while.  ugh!  here i go again.  i suppose it's a good thing i live alone, there's nobody to yell at  

 

i really wanted to make it to chat today too.  my eye doctor visit left my pupils all dilated for most of the evening, which makes it impossible to read for a few hours for me.  so i just sat & listened to the television for a while.  went to bed early.  then my 17-day headache woke me up at 2am, and here i am writing email at 4am.  oh hey, i think there's some ice cream left......

, Pred really munks with your moods, and patience.  Sometimes i just have to go off somewhere by myself, and I have told my boss that I am having a bad day and i will be closing my office door to work.  He understands.  Your not griping, if you don't let some of it out....even pressure cookers explode.  I know what you mean about the weight too, I have changed so much alot of people don't recognize me.  Alot of times I had from them, because I do not want them to see me.  I still have pictures of a Connie I knew.  But like you...Hey I'm kickin and you can't keep a good dog down.  Personally I refer to myself as a PitBull, we never give up once we take hold.  Hang in kiddo.

To: Neurosarcoidosis

Sent: Thu, March 31, 2011 1:05:28 AM

Subject: Re: body betrayal?

 

,

I do not like my " new norm " either.  Because of the decrease in my vision and energy level, I need to rely on people to take me places.  I feel like such a bother also asking for a ride somewhere, just to do my weekly erands that I use to do without thinking.  And then people ask - do you have to go here isn't there some where closer?? - that makes you feel guilty for even asking....  Oh run to the store for something, no problem - now it is a problem.  Forget a last minute ingredient for dinner that night.  How am I going to get it now.  No one runs on last minute things to take me somewhere.  It is soooo frustrating!!!  Plus, when I go out and about now, people look at me differently now - because I am alot heavier.  Even at the restaurant ordering food.  The waitress asks are you looking for something healthy to eat or a filler??   You can forget about doing anything big with the kids tooo, because I am just wiped after 15-20min. of activity.  And now - not sure if it is from the meds or what, but I am getting short with little things. - Don't complain to me about a little cold you have, because what I am dealing with is much greater than that.  I had to change my whole diet and life for this........Oh am I venting........Sorry.....I have been home alone all week.  Although I have been talking to my dog, and she is a good listener, but she doesn't really talk back in a language that I can understand.    This is not a very postitive email.  Sorry.  I am gratefull to be here hugging my kids goodnight and in the morning.  Things could be a lot worse I know.  I do have a lot of support behind me with friends for this thing I have.  I guess I am just tired.  It is late. Thanks for listening all.

 

To: Neurosarcoidosis

Sent: Fri, March 25, 2011 6:11:35 PMSubject: Re: body betrayal? 

Rose, I was just thinking about my 'new norm' yesterday.  I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since.  I hate having to ask/beg for more and more help and expect less and less.  I used to keep a very decent house and now I am totally embarrassed to have anyone over.  it takes me days to clean up a little bit.  I get exhausted SOOO easily.   I haven't left the house since Christmas day.  The least bit of movement gives me a dull headache and everything seems  so loud.  The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week.  This morning I was woken early and I was between crying and swearing.  My nerves are on edge and i feel on the edge of slapping someone...(lol).  The things I used to be able to handle or think through are totally beyond me now.   This new 'norm' is very very scary.   I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with.   lots of hugs   S.

Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?

To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours!  Between that 6-hour excursion to the sarc doc & my cold, I was wiped out.  My leg pain is better, at least while sitting or lying down.  Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week!  I have an appt with a surgeon in two weeks to see if there are any possible surgical options.  Meanwhile I'm trying to go about my business as usual.  One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move.  When that awful leg pain started 2 weeks ago I had just turned to my left.  We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.  I worry that just the wrong move will start it up again.  The sarc has been bad enough; before that I had a lot of confidence in my body.  I had already been having back problems for many years, but nothing I couldn't handle or work around.  Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities.  But I made adjustments (with much bitching & complaining) & learned my " new norm. "   Well, several new norms as more symptoms popped up.  But for several years things had been pretty stable.  Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move.  I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do!  It almost feels like a betrayal; that sounds a little strong, but I can't think of a better description.  On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc.  Maybe it's payback!  Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

[Guest guest]

I know Pred is the drug of choice, but have you asked the doctor about any kind of alternative, pred eye drops, methotrexate, immuran, etc. Something that doesn't carry the systemic side effects the regular pred carries. I know the eyes are a little different, but I would think if controlled the systemic sarc, it would have an effect on the opthamologic aspects of the disease as well. Just a thought

To: Neurosarcoidosis Sent: Sat, April 2, 2011 4:17:50 AMSubject: Re: body betrayal?

back in the late '90s when i was learning that this disease was going to be a part of my life & i was trying to find a way to deal with it, i started my own online sarcoidosis mailing list. back then there were no yahoo groups, i had to put up my own website, buy some expensive software to run on my computer to do all the email sending and receiving, etc. my computer would dial up its phone modem every hour & check for email to be received & distributed to members of my new mailing list. it wasn't a huge success, but for a while it did put me in touch with a handful of people who were going thru some similar things. i will never forget one email from one member who wrote about how he was learning the hard way about the effects of prednisone. his post spoke of an event at the dinner table at his house that evening, how he had yelled furiously at his eight year old son, threw his food in the trash, took

him by the arm and sent him to his room, all because he didn't pass the salt fast enough when asked to do so. it was obvious in his post that he felt badly & was ashamed of his actions. it sure made it clear to me that i wasn't the only one having anger issues with prednisone. i still think of that guy on occasion, i hope he & his family are okay & that they all found a way to cope with it.

had a visit with my ophthalmologist this afternoon, the inflammation in my eyes isn't going down fast enough, so he's upped my prednisone from 30mg to 60mg again for a while. ugh! here i go again. i suppose it's a good thing i live alone, there's nobody to yell at

i really wanted to make it to chat today too. my eye doctor visit left my pupils all dilated for most of the evening, which makes it impossible to read for a few hours for me. so i just sat & listened to the television for a while. went to bed early. then my 17-day headache woke me up at 2am, and here i am writing email at 4am. oh hey, i think there's some ice cream left......

, Pred really munks with your moods, and patience. Sometimes i just have to go off somewhere by myself, and I have told my boss that I am having a bad day and i will be closing my office door to work. He understands. Your not griping, if you don't let some of it out....even pressure cookers explode. I know what you mean about the weight too, I have changed so much alot of people don't recognize me. Alot of times I had from them, because I do not want them to see me. I still have pictures of a Connie I knew. But like you...Hey I'm kickin and you can't keep a good dog down. Personally I refer to myself as a PitBull, we never give up once we take hold. Hang in kiddo.

To: Neurosarcoidosis Sent: Thu, March 31, 2011 1:05:28 AM

Subject: Re: body betrayal?

,

I do not like my "new norm" either. Because of the decrease in my vision and energy level, I need to rely on people to take me places. I feel like such a bother also asking for a ride somewhere, just to do my weekly erands that I use to do without thinking. And then people ask - do you have to go here isn't there some where closer?? - that makes you feel guilty for even asking.... Oh run to the store for something, no problem - now it is a problem. Forget a last minute ingredient for dinner that night. How am I going to get it now. No one runs on last minute things to take me somewhere. It is soooo frustrating!!! Plus, when I go out and about now, people look at me differently now - because I am alot heavier. Even at the restaurant ordering food. The waitress asks are you looking for something healthy to eat or a filler?? You can forget about doing

anything big with the kids tooo, because I am just wiped after 15-20min. of activity. And now - not sure if it is from the meds or what, but I am getting short with little things. - Don't complain to me about a little cold you have, because what I am dealing with is much greater than that. I had to change my whole diet and life for this........Oh am I venting........Sorry.....I have been home alone all week. Although I have been talking to my dog, and she is a good listener, but she doesn't really talk back in a language that I can understand. This is not a very postitive email. Sorry. I am gratefull to be here hugging my kids goodnight and in the morning. Things could be a lot worse I know. I do have a lot of support behind me with friends for this thing I have. I guess I am just tired. It is late. Thanks for listening all.

To: Neurosarcoidosis Sent: Fri, March 25, 2011 6:11:35 PMSubject: Re: body betrayal?

Rose, I was just thinking about my 'new norm' yesterday. I was thinking that about a year and a half ago I dropped to a less functional norm and i've been depressed and bitchy about it ever since. I hate having to ask/beg for more and more help and expect less and less. I used to keep a very decent house and now I am totally embarrassed to have anyone over. it takes me days to clean up a little bit. I get exhausted SOOO easily. I haven't left the house since Christmas day. The least bit of movement gives me a dull headache and everything seems so loud. The landlords have been putting up a ceiling in the attic above our apartment and they have been moving stuff, pounding, sawing, etc. all week. This morning I was woken early and I was between crying and swearing. My nerves are on edge and i feel on the edge of slapping

someone...(lol). The things I used to be able to handle or think through are totally beyond me now. This new 'norm' is very very scary. I hope and pray your pain get resolved soon or at the very least gets to a level you can deal with. lots of hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.

I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of

a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)