Re: wheelchairs and spinal changes

March 19, 2008

As usual, I'm butting in here. I have severe arthritis (sarcoid-induced) in my spine. There are "bone spurs" aka-- granulomas, at almost every vertebrae, and it has only been since I started the Remicade this last 15 months-- that the pain has subsided!!

I have found it so important that I get into my DC at least once every 7-10 days-- so that she can help me keep my muscles from becoming so rigid-- and that has helped keep me going for years. If I even try to go 2 weeks-- I am tighter that a firehydrant.

If you look up nerve and muslce involvement with sarcoidoisis-- you'll see that this is exactly what they describe.

I also know the challenge of not feeling like you can lift the grands (grandkids, not piano)-- or even know that you have a hot cup of coffee in your hands- as the neuropathy progresses. My heart goes out to all of us that know this problem- I guess the answer is to sit down, let the little buggers crawl to you, and when possible, have someone put them in your lap-- so you can love them without the fear of falling over.

Hugs,

Tracie

NS Co-owner/moderator

Re: Re: Joke

Ron, I don't mean to bother you but may I ask you aquestion. Something very different has been happeningto me lately and it has got me a little worried. LikeI have talked about before I have systemic sarcoid. About (2) mths ago about a 6 inch stretch of my lumbarspine started multiple snapping when I move from sideto side and hurting, and there is a place between myshoulder blades that is also painful and places on myback that are either numb or burn like fire if youtouch them. The lower back seems to be getting worseand worse and I am having trouble holding my 7 mth oldgranddaughter or much or anything, & I am losing moreand more feeling in my feet. When you say you startedhaving problems that progressed, is this what you weretalking about, is this spinal sarcoid. I have it inthe lungs, bronchial tubes, heart, possibly the brain,skin, joints, mouth, I don't know why I would think

itwould leave my spine alone....Thanks Ron....Connie--- anewronald (AT) aol (DOT) com wrote:> Hi Marla,> > It was a gradual progression in loosing my ability> to walk. However, I > believe if I was more aggressive with physical> therapy and exercise I would have > been able to put it off a little while longer.> > I have a motorized chair. I have arthritis in my > shoulders due to the > prednisone, so I would not be able to push myself. > Therefore, I needed a > motorized chair.> > Medicare paid for most of it. if you have Medicare> and another form of > insurance, that should be enough to get you a> motorized chair with no out of > pocket expenses.> > I hope this helps and "I wish you well

girl."> > Ron > > > > ************ **Biggest Grammy Award surprises of all> time on AOL Music. >(http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 0000025> 48)> ____________ _________ _________ _________ _________ _________ _Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools. search.yahoo. com/newsearch/ category. php?category= shopping

March 19, 2008

As usual, I'm butting in here. I have severe arthritis (sarcoid-induced) in my spine. There are "bone spurs" aka-- granulomas, at almost every vertebrae, and it has only been since I started the Remicade this last 15 months-- that the pain has subsided!!

I have found it so important that I get into my DC at least once every 7-10 days-- so that she can help me keep my muscles from becoming so rigid-- and that has helped keep me going for years. If I even try to go 2 weeks-- I am tighter that a firehydrant.

If you look up nerve and muslce involvement with sarcoidoisis-- you'll see that this is exactly what they describe.

I also know the challenge of not feeling like you can lift the grands (grandkids, not piano)-- or even know that you have a hot cup of coffee in your hands- as the neuropathy progresses. My heart goes out to all of us that know this problem- I guess the answer is to sit down, let the little buggers crawl to you, and when possible, have someone put them in your lap-- so you can love them without the fear of falling over.

Hugs,

Tracie

NS Co-owner/moderator

Re: Re: Joke

Ron, I don't mean to bother you but may I ask you aquestion. Something very different has been happeningto me lately and it has got me a little worried. LikeI have talked about before I have systemic sarcoid. About (2) mths ago about a 6 inch stretch of my lumbarspine started multiple snapping when I move from sideto side and hurting, and there is a place between myshoulder blades that is also painful and places on myback that are either numb or burn like fire if youtouch them. The lower back seems to be getting worseand worse and I am having trouble holding my 7 mth oldgranddaughter or much or anything, & I am losing moreand more feeling in my feet. When you say you startedhaving problems that progressed, is this what you weretalking about, is this spinal sarcoid. I have it inthe lungs, bronchial tubes, heart, possibly the brain,skin, joints, mouth, I don't know why I would think

itwould leave my spine alone....Thanks Ron....Connie--- anewronald (AT) aol (DOT) com wrote:> Hi Marla,> > It was a gradual progression in loosing my ability> to walk. However, I > believe if I was more aggressive with physical> therapy and exercise I would have > been able to put it off a little while longer.> > I have a motorized chair. I have arthritis in my > shoulders due to the > prednisone, so I would not be able to push myself. > Therefore, I needed a > motorized chair.> > Medicare paid for most of it. if you have Medicare> and another form of > insurance, that should be enough to get you a> motorized chair with no out of > pocket expenses.> > I hope this helps and "I wish you well

girl."> > Ron > > > > ************ **Biggest Grammy Award surprises of all> time on AOL Music. >(http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 0000025> 48)> ____________ _________ _________ _________ _________ _________ _Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools. search.yahoo. com/newsearch/ category. php?category= shopping

April 27, 2008

Thanks Tracie for answering me, I just saw the messge

today. I wasn't sure exactly what was going on and

people even doctors think we blame everything on sarc.

I also have osteoporosis so I didn't know what to

think. Thanks so much for the info, with me half of

winning the battle is knowing what i am

fighting....Connie

--- tracie feldhaus wrote:

> As usual, I'm butting in here. I have severe

> arthritis (sarcoid-induced) in my spine. There are

> " bone spurs " aka-- granulomas, at almost every

> vertebrae, and it has only been since I started the

> Remicade this last 15 months-- that the pain has

> subsided!!

> I have found it so important that I get into my DC

> at least once every 7-10 days-- so that she can help

> me keep my muscles from becoming so rigid-- and that

> has helped keep me going for years. If I even try

> to go 2 weeks-- I am tighter that a firehydrant.

> If you look up nerve and muslce involvement with

> sarcoidoisis-- you'll see that this is exactly what

> they describe.

> I also know the challenge of not feeling like you

> can lift the grands (grandkids, not piano)-- or even

> know that you have a hot cup of coffee in your

> hands- as the neuropathy progresses. My heart goes

> out to all of us that know this problem- I guess the

> answer is to sit down, let the little buggers crawl

> to you, and when possible, have someone put them in

> your lap-- so you can love them without the fear of

> falling over.

>

> Hugs,

> Tracie

> NS Co-owner/moderator

>

> Re: Re: Joke

>

> Ron, I don't mean to bother you but may I ask you a

> question. Something very different has been

> happening

> to me lately and it has got me a little worried.

> Like

> I have talked about before I have systemic sarcoid.

> About (2) mths ago about a 6 inch stretch of my

> lumbar

> spine started multiple snapping when I move from

> side

> to side and hurting, and there is a place between my

> shoulder blades that is also painful and places on

> my

> back that are either numb or burn like fire if you

> touch them. The lower back seems to be getting worse

> and worse and I am having trouble holding my 7 mth

> old

> granddaughter or much or anything, & I am losing

> more

> and more feeling in my feet. When you say you

> started

> having problems that progressed, is this what you

> were

> talking about, is this spinal sarcoid. I have it in

> the lungs, bronchial tubes, heart, possibly the

> brain,

> skin, joints, mouth, I don't know why I would think

> it

> would leave my spine alone....Thanks Ron....Connie

> --- anewronald (AT) aol (DOT) com wrote:

>

> > Hi Marla,

> >

> > It was a gradual progression in loosing my ability

> > to walk. However, I

> > believe if I was more aggressive with physical

> > therapy and exercise I would have

> > been able to put it off a little while longer.

> >

> > I have a motorized chair. I have arthritis in my

> > shoulders due to the

> > prednisone, so I would not be able to push myself.

>

> > Therefore, I needed a

> > motorized chair.

> >

> > Medicare paid for most of it. if you have Medicare

> > and another form of

> > insurance, that should be enough to get you a

> > motorized chair with no out of

> > pocket expenses.

> >

> > I hope this helps and " I wish you well girl. "

> >

> > Ron

> >

> > ************ **Biggest Grammy Award surprises of

> all

> > time on AOL Music.

> >

> (http://music. aol.com/grammys/ pictures/ never-won-

> a-grammy? NCID=aolcmp00300 0000025

> > 48)

> >

>

> ____________ _________ _________ _________ _________

> _________ _

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search. http://tools.

> search.yahoo. com/newsearch/ category. php?category=

> shopping

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

April 27, 2008

Thanks Tracie for answering me, I just saw the messge

today. I wasn't sure exactly what was going on and

people even doctors think we blame everything on sarc.

I also have osteoporosis so I didn't know what to

think. Thanks so much for the info, with me half of

winning the battle is knowing what i am

fighting....Connie

--- tracie feldhaus wrote:

> As usual, I'm butting in here. I have severe

> arthritis (sarcoid-induced) in my spine. There are

> " bone spurs " aka-- granulomas, at almost every

> vertebrae, and it has only been since I started the

> Remicade this last 15 months-- that the pain has

> subsided!!

> I have found it so important that I get into my DC

> at least once every 7-10 days-- so that she can help

> me keep my muscles from becoming so rigid-- and that

> has helped keep me going for years. If I even try

> to go 2 weeks-- I am tighter that a firehydrant.

> If you look up nerve and muslce involvement with

> sarcoidoisis-- you'll see that this is exactly what

> they describe.

> I also know the challenge of not feeling like you

> can lift the grands (grandkids, not piano)-- or even

> know that you have a hot cup of coffee in your

> hands- as the neuropathy progresses. My heart goes

> out to all of us that know this problem- I guess the

> answer is to sit down, let the little buggers crawl

> to you, and when possible, have someone put them in

> your lap-- so you can love them without the fear of

> falling over.

>

> Hugs,

> Tracie

> NS Co-owner/moderator

>

> Re: Re: Joke

>

> Ron, I don't mean to bother you but may I ask you a

> question. Something very different has been

> happening

> to me lately and it has got me a little worried.

> Like

> I have talked about before I have systemic sarcoid.

> About (2) mths ago about a 6 inch stretch of my

> lumbar

> spine started multiple snapping when I move from

> side

> to side and hurting, and there is a place between my

> shoulder blades that is also painful and places on

> my

> back that are either numb or burn like fire if you

> touch them. The lower back seems to be getting worse

> and worse and I am having trouble holding my 7 mth

> old

> granddaughter or much or anything, & I am losing

> more

> and more feeling in my feet. When you say you

> started

> having problems that progressed, is this what you

> were

> talking about, is this spinal sarcoid. I have it in

> the lungs, bronchial tubes, heart, possibly the

> brain,

> skin, joints, mouth, I don't know why I would think

> it

> would leave my spine alone....Thanks Ron....Connie

> --- anewronald (AT) aol (DOT) com wrote:

>

> > Hi Marla,

> >

> > It was a gradual progression in loosing my ability

> > to walk. However, I

> > believe if I was more aggressive with physical

> > therapy and exercise I would have

> > been able to put it off a little while longer.

> >

> > I have a motorized chair. I have arthritis in my

> > shoulders due to the

> > prednisone, so I would not be able to push myself.

>

> > Therefore, I needed a

> > motorized chair.

> >

> > Medicare paid for most of it. if you have Medicare

> > and another form of

> > insurance, that should be enough to get you a

> > motorized chair with no out of

> > pocket expenses.

> >

> > I hope this helps and " I wish you well girl. "

> >

> > Ron

> >

> > ************ **Biggest Grammy Award surprises of

> all

> > time on AOL Music.

> >

> (http://music. aol.com/grammys/ pictures/ never-won-

> a-grammy? NCID=aolcmp00300 0000025

> > 48)

> >

>

> ____________ _________ _________ _________ _________

> _________ _

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search. http://tools.

> search.yahoo. com/newsearch/ category. php?category=

> shopping

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

April 27, 2008

Connie, I'm like you, if I understand what is going on-- then I can deal with

it. Even if that means not having an answer or solution.

As for the osteoporosis-- a direct side effect of prednisone, along with the

normal aging our bodies go through as we approach menopause-- makes it hard to

keep the balance.

If our MD's really understood this disease, they would know that what we

attribute to sarc, is generally correct. Sarcoidosis is a systemic inflammatory

disease. I have the joint destruction and distortion of the fingers and feet

that you would get with rheumatoid arthritis, but don't have RA. I have

sarcoid-induced arthritis. The bone spurs in my spine are granulomas formed by

my body having to send out cytokines (white cells) to heal injuries that I have

sustained to my back muscles and ligaments. My body just can't clear out the

cells and proteins that are the normal healing cycle. They build one on top of

the other and form hardened granulomas.

I have to laugh, if my docs had understood anything about sarcoidosis, the

insurance carrier that handled my work-comp claim would have won it's case, and

had been able to get out from under an old work comp injury-- at that time-- I

didn't know anything about this disease either, so I wasn't aware that so much

was autoimmune. The flip side-- it was probably that injury that started the

stress cycle that wore down my immune system, so when I did get sick with this-

I was prime for it. Catch-22 I'd say..

I've always been one to say that knowledge is what allows us to empower

ourself-- and it is alot of work!

Take care,

Tracie

NS Co-owner/moderatror

Re: Re: Joke

>

> Ron, I don't mean to bother you but may I ask you a

> question. Something very different has been

> happening

> to me lately and it has got me a little worried.

> Like

> I have talked about before I have systemic sarcoid.

> About (2) mths ago about a 6 inch stretch of my

> lumbar

> spine started multiple snapping when I move from

> side

> to side and hurting, and there is a place between my

> shoulder blades that is also painful and places on

> my

> back that are either numb or burn like fire if you

> touch them. The lower back seems to be getting worse

> and worse and I am having trouble holding my 7 mth

> old

> granddaughter or much or anything, & I am losing

> more

> and more feeling in my feet. When you say you

> started

> having problems that progressed, is this what you

> were

> talking about, is this spinal sarcoid. I have it in

> the lungs, bronchial tubes, heart, possibly the

> brain,

> skin, joints, mouth, I don't know why I would think

> it

> would leave my spine alone....Thanks Ron....Connie

> --- anewronald (AT) aol (DOT) com wrote:

>

> > Hi Marla,

> >

> > It was a gradual progression in loosing my ability

> > to walk. However, I

> > believe if I was more aggressive with physical

> > therapy and exercise I would have

> > been able to put it off a little while longer.

> >

> > I have a motorized chair. I have arthritis in my

> > shoulders due to the

> > prednisone, so I would not be able to push myself.

>

> > Therefore, I needed a

> > motorized chair.

> >

> > Medicare paid for most of it. if you have Medicare

> > and another form of

> > insurance, that should be enough to get you a

> > motorized chair with no out of

> > pocket expenses.

> >

> > I hope this helps and " I wish you well girl. "

> >

> > Ron

> >

> > ************ **Biggest Grammy Award surprises of

> all

> > time on AOL Music.

> >

> (http://music. aol.com/grammys/ pictures/ never-won-

> a-grammy? NCID=aolcmp00300 0000025

> > 48)

> >

>

> ____________ _________ _________ _________ _________

> _________ _

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search. http://tools.

> search.yahoo. com/newsearch/ category. php?category=

> shopping

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

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April 27, 2008