Re: questions re medication

[Guest guest]

Marla, Humira and Enbrel are both injections you can give yourself at home. So you don't have the facility fee for the infusion. I'll have to check, but I think it was Enbrel that works like Remicade-- in that it targets the TNF-a protein, without attacking the entire immune system-- so it is selective. I know Stinson was on Enbrel and felt better as far as the sarcoid-induced arthritis, but i know he became so exhausted from the lowered immune system that he discontinued it.

I'll let others give you their take on these--

huggs

Tracie

I have questions some of you might be able to answer, I am still fighting the insurance company for Remicade, and because they have no regard for the "person" my hearing isn't until 3/12, well by then I may not be able to walk at all, not that they care. My questions, my husband said maybe we should go head and start medication and pay for it ourselves? I know some have had good results with Remicade and some not. How many are on, or had good results from Humaria, another drug the doctor is talking about? how about enberal anyone tried this one. I'm not sure what to go with, if we start Remicade and the insurance company denies it, we cannot continue to do it, just too expensive. But what about the other drugs, I have looked up costs on them, and they are all expensive, but can do at home and not in the hospital? Any information would be greatly appreciated! God Bless, Marla -- Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Thanks Tracie, I am still looking in to all this, some days I think I really don't need this as I do OK, but on those days I find I feel better because all I slept a lot that day, my family thinks it's crazy that I want a wheel chair, but I find I can't keep up with anyone, and I can't walk for very long, it's so hard to explain to them how I feel, the more I use my legs, the weaker they become and it's hard to explain that weakness feeling. Well thanks for the information I really appreciate it! Marla

Marla, Humira and Enbrel are both injections you can give yourself at home. So you don't have the facility fee for the infusion. I'll have to check, but I think it was Enbrel that works like Remicade-- in that it targets the TNF-a protein, without attacking the entire immune system-- so it is selective. I know Stinson was on Enbrel and felt better as far as the sarcoid-induced arthritis, but i know he became so exhausted from the lowered immune system that he discontinued it.

I'll let others give you their take on these--

huggs

Tracie

I have questions some of you might be able to answer, I am still fighting the insurance company for Remicade, and because they have no regard for the " person " my hearing isn't until 3/12, well by then I may not be able to walk at all, not that they care. My questions, my husband said maybe we should go head and start medication and pay for it ourselves? I know some have had good results with Remicade and some not. How many are on, or had good results from Humaria, another drug the doctor is talking about? how about enberal anyone tried this one. I'm not sure what to go with, if we start Remicade and the insurance company denies it, we cannot continue to do it, just too expensive. But what about the other drugs, I have looked up costs on them, and they are all expensive, but can do at home and not in the hospital? Any information would be greatly appreciated! God Bless, Marla --

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Marla, I just got a chance to read this email. I

don't know if they would consider it no coverage if

your insurance company denies it, but Remicaid is on

the site Needymeds.com/This site is for people who do

not have prescription coverage and they can get

medication free or for a rediculously low co pay like

$5.00 or so. It might be worth looking at for anyone

using this med.

Connie

--- Marla Bramer wrote:

> I have questions some of you might be able to

> answer, I am still fighting

> the insurance company for Remicade, and because they

> have no regard for the

> " person " my hearing isn't until 3/12, well by then I

> may not be able to walk

> at all, not that they care.

> My questions, my husband said maybe we should go

> head and start medication

> and pay for it ourselves? I know some have had good

> results with Remicade

> and some not.

> How many are on, or had good results from Humaria,

> another drug the doctor

> is talking about?

> how about enberal anyone tried this one. I'm not

> sure what to go with, if

> we start Remicade and the insurance company denies

> it, we cannot continue to

> do it, just too expensive. But what about the other

> drugs, I have looked up

> costs on them, and they are all expensive, but can

> do at home and not in the

> hospital?

> Any information would be greatly appreciated! God

> Bless, Marla

>

> --

>

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Guest guest]

Marla, I just got a chance to read this email. I

don't know if they would consider it no coverage if

your insurance company denies it, but Remicaid is on

the site Needymeds.com/This site is for people who do

not have prescription coverage and they can get

medication free or for a rediculously low co pay like

$5.00 or so. It might be worth looking at for anyone

using this med.

Connie

--- Marla Bramer wrote:

> I have questions some of you might be able to

> answer, I am still fighting

> the insurance company for Remicade, and because they

> have no regard for the

> " person " my hearing isn't until 3/12, well by then I

> may not be able to walk

> at all, not that they care.

> My questions, my husband said maybe we should go

> head and start medication

> and pay for it ourselves? I know some have had good

> results with Remicade

> and some not.

> How many are on, or had good results from Humaria,

> another drug the doctor

> is talking about?

> how about enberal anyone tried this one. I'm not

> sure what to go with, if

> we start Remicade and the insurance company denies

> it, we cannot continue to

> do it, just too expensive. But what about the other

> drugs, I have looked up

> costs on them, and they are all expensive, but can

> do at home and not in the

> hospital?

> Any information would be greatly appreciated! God

> Bless, Marla

>

> --

>

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

[Guest guest]

--- Marla Bramer wrote:

> Thanks Tracie, I am still looking in to all this,

> some days I think I really

> don't need this as I do OK, but on those days I find

> I feel better because

> all I slept a lot that day, my family thinks it's

> crazy that I want a wheel

> chair, but I find I can't keep up with anyone, and I

> can't walk for very

> long, it's so hard to explain to them how I feel,

> the more I use my legs,

> the weaker they become and it's hard to explain that

> weakness feeling. Well

> thanks for the information I really appreciate it!

> Marla

>

>

>

> > *Marla, Humira and Enbrel are both injections

> you can give yourself at

> > home. So you don't have the facility fee for the

> infusion. I'll have to

> > check, but I think it was Enbrel that works like

> Remicade-- in that it

> > targets the TNF-a protein, without attacking the

> entire immune system-- so

> > it is selective. I know Stinson was on Enbrel and

> felt better as far as the

> > sarcoid-induced arthritis, but i know he became so

> exhausted from the

> > lowered immune system that he discontinued it. *

> > *I'll let others give you their take on these--*

> > *huggs*

> > *Tracie*

> >

> > In a message dated 2/10/2008 12:29:40 P.M.

> Pacific Standard Time,

> > mebramer@... writes:

> >

> > I have questions some of you might be able to

> answer, I am still

> > fighting the insurance company for Remicade, and

> because they have no regard

> > for the " person " my hearing isn't until 3/12, well

> by then I may not be able

> > to walk at all, not that they care.

> > My questions, my husband said maybe we should go

> head and start medication

> > and pay for it ourselves? I know some have had

> good results with Remicade

> > and some not.

> > How many are on, or had good results from Humaria,

> another drug the doctor

> > is talking about?

> > how about enberal anyone tried this one. I'm not

> sure what to go with, if

> > we start Remicade and the insurance company denies

> it, we cannot continue to

> > do it, just too expensive. But what about the

> other drugs, I have looked up

> > costs on them, and they are all expensive, but can

> do at home and not in the

> > hospital?

> > Any information would be greatly appreciated! God

> Bless, Marla

> >

> > --

> >

> >

> >

> >

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

> > Who's never won? Biggest Grammy Award surprises of

> all time on AOL

>

Music.<http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300\

000002548>

> >

> >

>

>

>

> --

> Marla Bramer

> Independent Beauty Consultant

> Kay

>

> mbramer@...

> www.marykay.com/mbramer

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

--- Marla Bramer wrote:

> Thanks Tracie, I am still looking in to all this,

> some days I think I really

> don't need this as I do OK, but on those days I find

> I feel better because

> all I slept a lot that day, my family thinks it's

> crazy that I want a wheel

> chair, but I find I can't keep up with anyone, and I

> can't walk for very

> long, it's so hard to explain to them how I feel,

> the more I use my legs,

> the weaker they become and it's hard to explain that

> weakness feeling. Well

> thanks for the information I really appreciate it!

> Marla

>

>

>

> > *Marla, Humira and Enbrel are both injections

> you can give yourself at

> > home. So you don't have the facility fee for the

> infusion. I'll have to

> > check, but I think it was Enbrel that works like

> Remicade-- in that it

> > targets the TNF-a protein, without attacking the

> entire immune system-- so

> > it is selective. I know Stinson was on Enbrel and

> felt better as far as the

> > sarcoid-induced arthritis, but i know he became so

> exhausted from the

> > lowered immune system that he discontinued it. *

> > *I'll let others give you their take on these--*

> > *huggs*

> > *Tracie*

> >

> > In a message dated 2/10/2008 12:29:40 P.M.

> Pacific Standard Time,

> > mebramer@... writes:

> >

> > I have questions some of you might be able to

> answer, I am still

> > fighting the insurance company for Remicade, and

> because they have no regard

> > for the " person " my hearing isn't until 3/12, well

> by then I may not be able

> > to walk at all, not that they care.

> > My questions, my husband said maybe we should go

> head and start medication

> > and pay for it ourselves? I know some have had

> good results with Remicade

> > and some not.

> > How many are on, or had good results from Humaria,

> another drug the doctor

> > is talking about?

> > how about enberal anyone tried this one. I'm not

> sure what to go with, if

> > we start Remicade and the insurance company denies

> it, we cannot continue to

> > do it, just too expensive. But what about the

> other drugs, I have looked up

> > costs on them, and they are all expensive, but can

> do at home and not in the

> > hospital?

> > Any information would be greatly appreciated! God

> Bless, Marla

> >

> > --

> >

> >

> >

> >

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

> > Who's never won? Biggest Grammy Award surprises of

> all time on AOL

>

Music.<http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300\

000002548>

> >

> >

>

>

>

> --

> Marla Bramer

> Independent Beauty Consultant

> Kay

>

> mbramer@...

> www.marykay.com/mbramer

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Marla,

I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so the fatigue to them is so much more intense.

Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement).

How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family.

You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more "embarrassing" to those we're with-- as they don't even think we need it-- (denial) so they fight these changes.

As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair! and when they get pissy, run them over.....

Love you,

Tracie

Re: questions re medication

--- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> Thanks Tracie, I am still looking in to all this,> some days I think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's hard to explain that> weakness feeling. Well> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

wrote:> > > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like> Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> > *huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still> > fighting the insurance company for Remicade, and> because they have no regard> > for the "person" my hearing isn't until 3/12, well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm not> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do

it, just too expensive. But what about the> other drugs, I have looked up> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --> >> >> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>> > > >> > > > -- > Marla Bramer> Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs

[Guest guest]

Marla,

I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so the fatigue to them is so much more intense.

Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement).

How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family.

You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more "embarrassing" to those we're with-- as they don't even think we need it-- (denial) so they fight these changes.

As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair! and when they get pissy, run them over.....

Love you,

Tracie

Re: questions re medication

--- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> Thanks Tracie, I am still looking in to all this,> some days I think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's hard to explain that> weakness feeling. Well> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

wrote:> > > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like> Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> > *huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still> > fighting the insurance company for Remicade, and> because they have no regard> > for the "person" my hearing isn't until 3/12, well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm not> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do

it, just too expensive. But what about the> other drugs, I have looked up> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --> >> >> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>> > > >> > > > -- > Marla Bramer> Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs

[Guest guest]

Connie Thanks I will check into that for sure. Marla

Marla, I just got a chance to read this email. I

don't know if they would consider it no coverage if

your insurance company denies it, but Remicaid is on

the site Needymeds.com/This site is for people who do

not have prescription coverage and they can get

medication free or for a rediculously low co pay like

$5.00 or so. It might be worth looking at for anyone

using this med.

Connie

--- Marla Bramer wrote:

> I have questions some of you might be able to

> answer, I am still fighting

> the insurance company for Remicade, and because they

> have no regard for the

> " person " my hearing isn't until 3/12, well by then I

> may not be able to walk

> at all, not that they care.

> My questions, my husband said maybe we should go

> head and start medication

> and pay for it ourselves? I know some have had good

> results with Remicade

> and some not.

> How many are on, or had good results from Humaria,

> another drug the doctor

> is talking about?

> how about enberal anyone tried this one. I'm not

> sure what to go with, if

> we start Remicade and the insurance company denies

> it, we cannot continue to

> do it, just too expensive. But what about the other

> drugs, I have looked up

> costs on them, and they are all expensive, but can

> do at home and not in the

> hospital?

> Any information would be greatly appreciated! God

> Bless, Marla

>

> --

>

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Connie Thanks I will check into that for sure. Marla

Marla, I just got a chance to read this email. I

don't know if they would consider it no coverage if

your insurance company denies it, but Remicaid is on

the site Needymeds.com/This site is for people who do

not have prescription coverage and they can get

medication free or for a rediculously low co pay like

$5.00 or so. It might be worth looking at for anyone

using this med.

Connie

--- Marla Bramer wrote:

> I have questions some of you might be able to

> answer, I am still fighting

> the insurance company for Remicade, and because they

> have no regard for the

> " person " my hearing isn't until 3/12, well by then I

> may not be able to walk

> at all, not that they care.

> My questions, my husband said maybe we should go

> head and start medication

> and pay for it ourselves? I know some have had good

> results with Remicade

> and some not.

> How many are on, or had good results from Humaria,

> another drug the doctor

> is talking about?

> how about enberal anyone tried this one. I'm not

> sure what to go with, if

> we start Remicade and the insurance company denies

> it, we cannot continue to

> do it, just too expensive. But what about the other

> drugs, I have looked up

> costs on them, and they are all expensive, but can

> do at home and not in the

> hospital?

> Any information would be greatly appreciated! God

> Bless, Marla

>

> --

>

__________________________________________________________

Looking for last minute shopping deals?

Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Tracie, Thanks for the info on lactic acid. Do you know if there is anything we can do to clear the excess lactic acid other than stay well hydrated? Yesterday I went to my son's ball game an had to walk quite a way (way further than I had walked for months) to get to the ball diamond from the parking lot. Surprise surprise, I forgot my cell phone in the car and had to walk back to get it because my little sons were at their friends house. Of course my legs kept stopping on me as I tried to walk, hurting and the muscles were getting really tight. The game lasted for almost 4 hours and the temp outside was in the high 30s. I thought I was dressed warm enough but I could barely get back to the car. My legs were cramping and hurting so bad and really not wanting to move. My hips and back were hurting a lot too. Even after 2 pain pills I was awake off and on all night because of pain and today had to go back to using my walker. I suppose it was a combination of

so much walking and the cold weather. I have to figure out how to deal with this cold weather thing because I am not going to miss his games just because it hurts. My kids are the world to me. Does the cold do this to anyone else? Any suggestions on how to best deal with it? Praying for painfree days filled with love and joy for all of you! Cathytracie feldhaus wrote: Marla, I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so the fatigue to them is so much more intense. Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the

neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement). How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family. You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more "embarrassing" to those we're with-- as they don't even think we need it-- (denial) so they fight these changes. As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair!

and when they get pissy, run them over..... Love you, Tracie Re: questions re medication --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> Thanks Tracie, I am still looking in to all this,> some days I

think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's hard to explain that> weakness feeling. Well> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com> wrote:> > > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like>

Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> > *huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still> > fighting the insurance company for Remicade, and> because they have no regard> > for the "person" my hearing isn't until 3/12,

well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm not> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do it, just too expensive. But what about the> other drugs, I have looked up> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --> >>

>> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>> > > >> > > > -- > Marla Bramer> Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Tracie, Thanks for the info on lactic acid. Do you know if there is anything we can do to clear the excess lactic acid other than stay well hydrated? Yesterday I went to my son's ball game an had to walk quite a way (way further than I had walked for months) to get to the ball diamond from the parking lot. Surprise surprise, I forgot my cell phone in the car and had to walk back to get it because my little sons were at their friends house. Of course my legs kept stopping on me as I tried to walk, hurting and the muscles were getting really tight. The game lasted for almost 4 hours and the temp outside was in the high 30s. I thought I was dressed warm enough but I could barely get back to the car. My legs were cramping and hurting so bad and really not wanting to move. My hips and back were hurting a lot too. Even after 2 pain pills I was awake off and on all night because of pain and today had to go back to using my walker. I suppose it was a combination of

so much walking and the cold weather. I have to figure out how to deal with this cold weather thing because I am not going to miss his games just because it hurts. My kids are the world to me. Does the cold do this to anyone else? Any suggestions on how to best deal with it? Praying for painfree days filled with love and joy for all of you! Cathytracie feldhaus wrote: Marla, I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so the fatigue to them is so much more intense. Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the

neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement). How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family. You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more "embarrassing" to those we're with-- as they don't even think we need it-- (denial) so they fight these changes. As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair!

and when they get pissy, run them over..... Love you, Tracie Re: questions re medication --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> Thanks Tracie, I am still looking in to all this,> some days I

think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's hard to explain that> weakness feeling. Well> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com> wrote:> > > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like>

Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> > *huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still> > fighting the insurance company for Remicade, and> because they have no regard> > for the "person" my hearing isn't until 3/12,

well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm not> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do it, just too expensive. But what about the> other drugs, I have looked up> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --> >>

>> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>> > > >> > > > -- > Marla Bramer> Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

The Internist that I used to work for always took 2

Rolaids before he went running. He swore that it kept

the lactic acid from building up. Personally, I use

the MSM Powder before I try to do anything that mimics

exercise-- and then I eat a banana and get some extra

fluids down (Gatorade works well to balance the

electroylytes) and that seems to help.

One thing to do before you start out is to do some

stretches where you raise up on your toes, hold it--

and repeat 5 or 6 times to get those calf muscles

stretched out-- also if you can use a wedge of wood,

or open the cupboard door and put your toes on it--

and keep the heel on the floor-- just holding it there

for a count of 30, working up to a minute to 90

seconds-- this helps those calf muscles to keep a bit

more flexible. START SLOW!!!!

As far as the cold and body pain-- LAYER, LAYER

LAYERS! Thermals under your pants, shirts, etc-- and

a blanket to sit on and wrap up in-- so that you stay

as warm as possible. A thermos of hot decaf tea works

well also--

Hope this helps,

Tracie

NS Co-owner/moderator

--- Cathy Borden wrote:

> Tracie,

> Thanks for the info on lactic acid. Do you know if

> there is anything we can do to clear the excess

> lactic acid other than stay well hydrated? Yesterday

> I went to my son's ball game an had to walk quite a

> way (way further than I had walked for months) to

> get to the ball diamond from the parking lot.

> Surprise surprise, I forgot my cell phone in the car

> and had to walk back to get it because my little

> sons were at their friends house. Of course my legs

> kept stopping on me as I tried to walk, hurting and

> the muscles were getting really tight. The game

> lasted for almost 4 hours and the temp outside was

> in the high 30s. I thought I was dressed warm enough

> but I could barely get back to the car. My legs were

> cramping and hurting so bad and really not wanting

> to move. My hips and back were hurting a lot too.

> Even after 2 pain pills I was awake off and on all

> night because of pain and today had to go back to

> using my walker. I suppose it was a combination of

> so much walking and

> the cold weather. I have to figure out how to deal

> with this cold weather thing because I am not going

> to miss his games just because it hurts. My kids are

> the world to me. Does the cold do this to anyone

> else? Any suggestions on how to best deal with it?

> Praying for painfree days filled with love and joy

> for all of you!

> Cathy

>

> tracie feldhaus wrote:

> Marla,

> I know I've talked about this-- but one thing I

> learned from the dc is that when we exercise (for us

> walk to the mailbox) or even try the grocery store

> or the mall-- that the lactic acid that builds up in

> our muscles isn't cleared out like it is in someone

> healthy. We store all those toxins-- in our lymphs

> and muscles, so the fatigue to them is so much more

> intense.

> Like you, I have had episodes (now more often) of

> my legs wanting me to stop trying to hike the mall--

> it's just too much. I also wonder how much of this

> is due to the fact that if we are lung compromised

> -- our bodies are trying to keep the oxygen going to

> our vital organs-- so it deprives it from the

> extremities. I know this plays a huge part in the

> neuropathy of our hands and feet-- and at least to

> me, it stands to reason that it would be effecting

> the strength and recovery from exercise (movement).

>

> How long has it been since you've had a lung

> function test? Where's your DLCO drop to when you

> do go out on what would be a normal excursion for

> the rest of the family.

> You and I both know this goes back to the same

> bottom line as the Disabled Persons Parking Placard.

> It's alot more " embarrassing " to those we're with--

> as they don't even think we need it-- (denial) so

> they fight these changes.

> As for you--- you need to do what you can to keep

> yourself as functional as possible. If this means

> that you get a chair-- get a chair! and when they

> get pissy, run them over.....

>

> Love you,

> Tracie

>

>

> Re: questions re

> medication

>

>

> --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

>

> > Thanks Tracie, I am still looking in to all this,

> > some days I think I really

> > don't need this as I do OK, but on those days I

> find

> > I feel better because

> > all I slept a lot that day, my family thinks it's

> > crazy that I want a wheel

> > chair, but I find I can't keep up with anyone, and

> I

> > can't walk for very

> > long, it's so hard to explain to them how I feel,

> > the more I use my legs,

> > the weaker they become and it's hard to explain

> that

> > weakness feeling. Well

> > thanks for the information I really appreciate it!

>

> > Marla

> >

> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

> wrote:

> >

> > > *Marla, Humira and Enbrel are both injections

> > you can give yourself at

> > > home. So you don't have the facility fee for the

> > infusion. I'll have to

> > > check, but I think it was Enbrel that works like

> > Remicade-- in that it

> > > targets the TNF-a protein, without attacking the

> > entire immune system-- so

> > > it is selective. I know Stinson was on Enbrel

> and

> > felt better as far as the

> > > sarcoid-induced arthritis, but i know he became

> so

> > exhausted from the

> > > lowered immune system that he discontinued it. *

> > > *I'll let others give you their take on these--*

> > > *huggs*

> > > *Tracie*

> > >

> > > In a message dated 2/10/2008 12:29:40 P.M.

> > Pacific Standard Time,

> > > mebramer (AT) gmail (DOT) com writes:

> > >

> > > I have questions some of you might be able to

> > answer, I am still

> > > fighting the insurance company for Remicade, and

> > because they have no regard

> > > for the " person " my hearing isn't until 3/12,

> well

> > by then I may not be able

> > > to walk at all, not that they care.

> > > My questions, my husband said maybe we should go

> > head and start medication

> > > and pay for it ourselves? I know some have had

> > good results with Remicade

> > > and some not.

> > > How many are on, or had good results from

> Humaria,

> > another drug the doctor

> > > is talking about?

> > > how about enberal anyone tried this one. I'm not

> > sure what to go with, if

> > > we start Remicade and the insurance company

> denies

> > it, we cannot continue to

> > > do it, just too expensive. But what about the

> > other drugs, I have looked up

> > > costs on them, and they are all expensive, but

> can

> > do at home and not in the

> > > hospital?

> > > Any information would be greatly appreciated!

> God

> > Bless, Marla

> > >

> > > --

> > >

> > >

> > >

> > >

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

> > > Who's never won? Biggest Grammy Award surprises

> of

> > all time on AOL

> >

> Music.<http://music. aol.com/grammys/ pictures/

> never-won- a-grammy? NCID=aolcmp00300 000002548>

> > >

> > >

> >

> >

> >

> > --

> > Marla Bramer

> > Independent Beauty Consultant

> > Kay

> >

> > mbramer (AT) marykay (DOT) com

> > www.marykay. com/mbramer

> >

>

> ____________ _________ _________ _________ _________

> _________ _

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo. com/r/hs

>

>

>

>

>

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

[Guest guest]

The Internist that I used to work for always took 2

Rolaids before he went running. He swore that it kept

the lactic acid from building up. Personally, I use

the MSM Powder before I try to do anything that mimics

exercise-- and then I eat a banana and get some extra

fluids down (Gatorade works well to balance the

electroylytes) and that seems to help.

One thing to do before you start out is to do some

stretches where you raise up on your toes, hold it--

and repeat 5 or 6 times to get those calf muscles

stretched out-- also if you can use a wedge of wood,

or open the cupboard door and put your toes on it--

and keep the heel on the floor-- just holding it there

for a count of 30, working up to a minute to 90

seconds-- this helps those calf muscles to keep a bit

more flexible. START SLOW!!!!

As far as the cold and body pain-- LAYER, LAYER

LAYERS! Thermals under your pants, shirts, etc-- and

a blanket to sit on and wrap up in-- so that you stay

as warm as possible. A thermos of hot decaf tea works

well also--

Hope this helps,

Tracie

NS Co-owner/moderator

--- Cathy Borden wrote:

> Tracie,

> Thanks for the info on lactic acid. Do you know if

> there is anything we can do to clear the excess

> lactic acid other than stay well hydrated? Yesterday

> I went to my son's ball game an had to walk quite a

> way (way further than I had walked for months) to

> get to the ball diamond from the parking lot.

> Surprise surprise, I forgot my cell phone in the car

> and had to walk back to get it because my little

> sons were at their friends house. Of course my legs

> kept stopping on me as I tried to walk, hurting and

> the muscles were getting really tight. The game

> lasted for almost 4 hours and the temp outside was

> in the high 30s. I thought I was dressed warm enough

> but I could barely get back to the car. My legs were

> cramping and hurting so bad and really not wanting

> to move. My hips and back were hurting a lot too.

> Even after 2 pain pills I was awake off and on all

> night because of pain and today had to go back to

> using my walker. I suppose it was a combination of

> so much walking and

> the cold weather. I have to figure out how to deal

> with this cold weather thing because I am not going

> to miss his games just because it hurts. My kids are

> the world to me. Does the cold do this to anyone

> else? Any suggestions on how to best deal with it?

> Praying for painfree days filled with love and joy

> for all of you!

> Cathy

>

> tracie feldhaus wrote:

> Marla,

> I know I've talked about this-- but one thing I

> learned from the dc is that when we exercise (for us

> walk to the mailbox) or even try the grocery store

> or the mall-- that the lactic acid that builds up in

> our muscles isn't cleared out like it is in someone

> healthy. We store all those toxins-- in our lymphs

> and muscles, so the fatigue to them is so much more

> intense.

> Like you, I have had episodes (now more often) of

> my legs wanting me to stop trying to hike the mall--

> it's just too much. I also wonder how much of this

> is due to the fact that if we are lung compromised

> -- our bodies are trying to keep the oxygen going to

> our vital organs-- so it deprives it from the

> extremities. I know this plays a huge part in the

> neuropathy of our hands and feet-- and at least to

> me, it stands to reason that it would be effecting

> the strength and recovery from exercise (movement).

>

> How long has it been since you've had a lung

> function test? Where's your DLCO drop to when you

> do go out on what would be a normal excursion for

> the rest of the family.

> You and I both know this goes back to the same

> bottom line as the Disabled Persons Parking Placard.

> It's alot more " embarrassing " to those we're with--

> as they don't even think we need it-- (denial) so

> they fight these changes.

> As for you--- you need to do what you can to keep

> yourself as functional as possible. If this means

> that you get a chair-- get a chair! and when they

> get pissy, run them over.....

>

> Love you,

> Tracie

>

>

> Re: questions re

> medication

>

>

> --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

>

> > Thanks Tracie, I am still looking in to all this,

> > some days I think I really

> > don't need this as I do OK, but on those days I

> find

> > I feel better because

> > all I slept a lot that day, my family thinks it's

> > crazy that I want a wheel

> > chair, but I find I can't keep up with anyone, and

> I

> > can't walk for very

> > long, it's so hard to explain to them how I feel,

> > the more I use my legs,

> > the weaker they become and it's hard to explain

> that

> > weakness feeling. Well

> > thanks for the information I really appreciate it!

>

> > Marla

> >

> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

> wrote:

> >

> > > *Marla, Humira and Enbrel are both injections

> > you can give yourself at

> > > home. So you don't have the facility fee for the

> > infusion. I'll have to

> > > check, but I think it was Enbrel that works like

> > Remicade-- in that it

> > > targets the TNF-a protein, without attacking the

> > entire immune system-- so

> > > it is selective. I know Stinson was on Enbrel

> and

> > felt better as far as the

> > > sarcoid-induced arthritis, but i know he became

> so

> > exhausted from the

> > > lowered immune system that he discontinued it. *

> > > *I'll let others give you their take on these--*

> > > *huggs*

> > > *Tracie*

> > >

> > > In a message dated 2/10/2008 12:29:40 P.M.

> > Pacific Standard Time,

> > > mebramer (AT) gmail (DOT) com writes:

> > >

> > > I have questions some of you might be able to

> > answer, I am still

> > > fighting the insurance company for Remicade, and

> > because they have no regard

> > > for the " person " my hearing isn't until 3/12,

> well

> > by then I may not be able

> > > to walk at all, not that they care.

> > > My questions, my husband said maybe we should go

> > head and start medication

> > > and pay for it ourselves? I know some have had

> > good results with Remicade

> > > and some not.

> > > How many are on, or had good results from

> Humaria,

> > another drug the doctor

> > > is talking about?

> > > how about enberal anyone tried this one. I'm not

> > sure what to go with, if

> > > we start Remicade and the insurance company

> denies

> > it, we cannot continue to

> > > do it, just too expensive. But what about the

> > other drugs, I have looked up

> > > costs on them, and they are all expensive, but

> can

> > do at home and not in the

> > > hospital?

> > > Any information would be greatly appreciated!

> God

> > Bless, Marla

> > >

> > > --

> > >

> > >

> > >

> > >

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

> > > Who's never won? Biggest Grammy Award surprises

> of

> > all time on AOL

> >

> Music.<http://music. aol.com/grammys/ pictures/

> never-won- a-grammy? NCID=aolcmp00300 000002548>

> > >

> > >

> >

> >

> >

> > --

> > Marla Bramer

> > Independent Beauty Consultant

> > Kay

> >

> > mbramer (AT) marykay (DOT) com

> > www.marykay. com/mbramer

> >

>

> ____________ _________ _________ _________ _________

> _________ _

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo. com/r/hs

>

>

>

>

>

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

[Guest guest]

Thank you! I will try all of that! I really appreciate all of your knowlege!!! I can't explain how much hope this group has given me. I felt so alone in the dark and scared before. Not that I am still not scared about the future, but I am not alone any more and i am not completely in the dark. Thank you soooooo much! Is there anything to get rid of this very round face from prednisone? I look in the mirror and hate what I see. I don't look anything like me. But...... I am alive and had another wonderful day with my 3 wonderful sons.... so oh well. I guess it doesn't matter how I look. They still love me and I am still here thank God!! Thanks again! Cathytracie feldhaus wrote: The Internist that I used to work for always took 2Rolaids before he went running. He swore that it keptthe lactic acid from building up. Personally, I usethe MSM Powder before I try to do anything that mimicsexercise-- and then I eat a banana and get some extrafluids down (Gatorade works well to balance theelectroylytes) and that seems to help. One thing to do before you start out is to do somestretches where you raise up on your toes, hold it--and repeat 5 or 6 times to get those calf musclesstretched out-- also if you can use a wedge of wood,or open the cupboard door and put your toes on it--and keep the heel on the floor-- just holding it therefor a count of 30, working up to a minute to

90seconds-- this helps those calf muscles to keep a bitmore flexible. START SLOW!!!!As far as the cold and body pain-- LAYER, LAYERLAYERS! Thermals under your pants, shirts, etc-- anda blanket to sit on and wrap up in-- so that you stayas warm as possible. A thermos of hot decaf tea workswell also-- Hope this helps,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thanks for the info on lactic acid. Do you know if> there is anything we can do to clear the excess> lactic acid other than stay well hydrated? Yesterday> I went to my son's ball game an had to walk quite a> way (way further than I had walked for months) to> get to the ball diamond from the parking lot.> Surprise surprise, I forgot my cell phone in the car> and had to walk back to get it because my little> sons

were at their friends house. Of course my legs> kept stopping on me as I tried to walk, hurting and> the muscles were getting really tight. The game> lasted for almost 4 hours and the temp outside was> in the high 30s. I thought I was dressed warm enough> but I could barely get back to the car. My legs were> cramping and hurting so bad and really not wanting> to move. My hips and back were hurting a lot too.> Even after 2 pain pills I was awake off and on all> night because of pain and today had to go back to> using my walker. I suppose it was a combination of> so much walking and> the cold weather. I have to figure out how to deal> with this cold weather thing because I am not going> to miss his games just because it hurts. My kids are> the world to me. Does the cold do this to anyone> else? Any suggestions on how to best deal with it?> Praying for

painfree days filled with love and joy> for all of you!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Marla,> I know I've talked about this-- but one thing I> learned from the dc is that when we exercise (for us> walk to the mailbox) or even try the grocery store> or the mall-- that the lactic acid that builds up in> our muscles isn't cleared out like it is in someone> healthy. We store all those toxins-- in our lymphs> and muscles, so the fatigue to them is so much more> intense.> Like you, I have had episodes (now more often) of> my legs wanting me to stop trying to hike the mall--> it's just too much. I also wonder how much of this> is due to the fact that if we are lung compromised> -- our bodies are trying to keep the oxygen going to> our vital organs-- so it deprives it

from the> extremities. I know this plays a huge part in the> neuropathy of our hands and feet-- and at least to> me, it stands to reason that it would be effecting> the strength and recovery from exercise (movement). > > How long has it been since you've had a lung> function test? Where's your DLCO drop to when you> do go out on what would be a normal excursion for> the rest of the family.> You and I both know this goes back to the same> bottom line as the Disabled Persons Parking Placard.> It's alot more "embarrassing" to those we're with--> as they don't even think we need it-- (denial) so> they fight these changes.> As for you--- you need to do what you can to keep> yourself as functional as possible. If this means> that you get a chair-- get a chair! and when they> get pissy, run them over.....> > Love you,> Tracie>

> > Re: questions re> medication> > > --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> > > Thanks Tracie, I am still looking in to all this,> > some days I think I really> > don't need this as I do OK, but on those days I> find> > I feel better because> > all I slept a lot that day, my family thinks it's> > crazy that I want a wheel> > chair, but I find I can't keep up with anyone, and> I> > can't walk for very> > long, it's so hard to explain to them how I feel,> > the more I use

my legs,> > the weaker they become and it's hard to explain> that> > weakness feeling. Well> > thanks for the information I really appreciate it!> > > Marla> > > > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>> wrote:> > > > > *Marla, Humira and Enbrel are both injections> > you can give yourself at> > > home. So you don't have the facility fee for the> > infusion. I'll have to> > > check, but I think it was Enbrel that works like> > Remicade-- in that it> > > targets the TNF-a protein, without attacking the> > entire immune system-- so> > > it is selective. I know Stinson was on Enbrel> and> > felt better as far as the> > > sarcoid-induced arthritis, but i know he became> so> > exhausted from the> > > lowered immune

system that he discontinued it. *> > > *I'll let others give you their take on these--*> > > *huggs*> > > *Tracie*> > >> > > In a message dated 2/10/2008 12:29:40 P.M.> > Pacific Standard Time,> > > mebramer (AT) gmail (DOT) com writes:> > >> > > I have questions some of you might be able to> > answer, I am still> > > fighting the insurance company for Remicade, and> > because they have no regard> > > for the "person" my hearing isn't until 3/12,> well> > by then I may not be able> > > to walk at all, not that they care.> > > My questions, my husband said maybe we should go> > head and start medication> > > and pay for it ourselves? I know some have had> > good results with Remicade> > > and some not.> > > How many are on, or

had good results from> Humaria,> > another drug the doctor> > > is talking about?> > > how about enberal anyone tried this one. I'm not> > sure what to go with, if> > > we start Remicade and the insurance company> denies> > it, we cannot continue to> > > do it, just too expensive. But what about the> > other drugs, I have looked up> > > costs on them, and they are all expensive, but> can> > do at home and not in the> > > hospital?> > > Any information would be greatly appreciated!> God> > Bless, Marla> > >> > > --> > >> > >> > >> > >> > > ------------ --------- ---------> > > Who's never won? Biggest Grammy Award surprises> of> > all time on AOL> >> Music.<http://music. aol.com/grammys/ pictures/> never-won- a-grammy? NCID=aolcmp00300 000002548>> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer (AT) marykay (DOT) com> > www.marykay. com/mbramer> > > > ____________ _________ _________ _________ _________> _________ _> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs> > > > > > > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thank you! I will try all of that! I really appreciate all of your knowlege!!! I can't explain how much hope this group has given me. I felt so alone in the dark and scared before. Not that I am still not scared about the future, but I am not alone any more and i am not completely in the dark. Thank you soooooo much! Is there anything to get rid of this very round face from prednisone? I look in the mirror and hate what I see. I don't look anything like me. But...... I am alive and had another wonderful day with my 3 wonderful sons.... so oh well. I guess it doesn't matter how I look. They still love me and I am still here thank God!! Thanks again! Cathytracie feldhaus wrote: The Internist that I used to work for always took 2Rolaids before he went running. He swore that it keptthe lactic acid from building up. Personally, I usethe MSM Powder before I try to do anything that mimicsexercise-- and then I eat a banana and get some extrafluids down (Gatorade works well to balance theelectroylytes) and that seems to help. One thing to do before you start out is to do somestretches where you raise up on your toes, hold it--and repeat 5 or 6 times to get those calf musclesstretched out-- also if you can use a wedge of wood,or open the cupboard door and put your toes on it--and keep the heel on the floor-- just holding it therefor a count of 30, working up to a minute to

90seconds-- this helps those calf muscles to keep a bitmore flexible. START SLOW!!!!As far as the cold and body pain-- LAYER, LAYERLAYERS! Thermals under your pants, shirts, etc-- anda blanket to sit on and wrap up in-- so that you stayas warm as possible. A thermos of hot decaf tea workswell also-- Hope this helps,TracieNS Co-owner/moderator--- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thanks for the info on lactic acid. Do you know if> there is anything we can do to clear the excess> lactic acid other than stay well hydrated? Yesterday> I went to my son's ball game an had to walk quite a> way (way further than I had walked for months) to> get to the ball diamond from the parking lot.> Surprise surprise, I forgot my cell phone in the car> and had to walk back to get it because my little> sons

were at their friends house. Of course my legs> kept stopping on me as I tried to walk, hurting and> the muscles were getting really tight. The game> lasted for almost 4 hours and the temp outside was> in the high 30s. I thought I was dressed warm enough> but I could barely get back to the car. My legs were> cramping and hurting so bad and really not wanting> to move. My hips and back were hurting a lot too.> Even after 2 pain pills I was awake off and on all> night because of pain and today had to go back to> using my walker. I suppose it was a combination of> so much walking and> the cold weather. I have to figure out how to deal> with this cold weather thing because I am not going> to miss his games just because it hurts. My kids are> the world to me. Does the cold do this to anyone> else? Any suggestions on how to best deal with it?> Praying for

painfree days filled with love and joy> for all of you!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Marla,> I know I've talked about this-- but one thing I> learned from the dc is that when we exercise (for us> walk to the mailbox) or even try the grocery store> or the mall-- that the lactic acid that builds up in> our muscles isn't cleared out like it is in someone> healthy. We store all those toxins-- in our lymphs> and muscles, so the fatigue to them is so much more> intense.> Like you, I have had episodes (now more often) of> my legs wanting me to stop trying to hike the mall--> it's just too much. I also wonder how much of this> is due to the fact that if we are lung compromised> -- our bodies are trying to keep the oxygen going to> our vital organs-- so it deprives it

from the> extremities. I know this plays a huge part in the> neuropathy of our hands and feet-- and at least to> me, it stands to reason that it would be effecting> the strength and recovery from exercise (movement). > > How long has it been since you've had a lung> function test? Where's your DLCO drop to when you> do go out on what would be a normal excursion for> the rest of the family.> You and I both know this goes back to the same> bottom line as the Disabled Persons Parking Placard.> It's alot more "embarrassing" to those we're with--> as they don't even think we need it-- (denial) so> they fight these changes.> As for you--- you need to do what you can to keep> yourself as functional as possible. If this means> that you get a chair-- get a chair! and when they> get pissy, run them over.....> > Love you,> Tracie>

> > Re: questions re> medication> > > --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> > > Thanks Tracie, I am still looking in to all this,> > some days I think I really> > don't need this as I do OK, but on those days I> find> > I feel better because> > all I slept a lot that day, my family thinks it's> > crazy that I want a wheel> > chair, but I find I can't keep up with anyone, and> I> > can't walk for very> > long, it's so hard to explain to them how I feel,> > the more I use

my legs,> > the weaker they become and it's hard to explain> that> > weakness feeling. Well> > thanks for the information I really appreciate it!> > > Marla> > > > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>> wrote:> > > > > *Marla, Humira and Enbrel are both injections> > you can give yourself at> > > home. So you don't have the facility fee for the> > infusion. I'll have to> > > check, but I think it was Enbrel that works like> > Remicade-- in that it> > > targets the TNF-a protein, without attacking the> > entire immune system-- so> > > it is selective. I know Stinson was on Enbrel> and> > felt better as far as the> > > sarcoid-induced arthritis, but i know he became> so> > exhausted from the> > > lowered immune

system that he discontinued it. *> > > *I'll let others give you their take on these--*> > > *huggs*> > > *Tracie*> > >> > > In a message dated 2/10/2008 12:29:40 P.M.> > Pacific Standard Time,> > > mebramer (AT) gmail (DOT) com writes:> > >> > > I have questions some of you might be able to> > answer, I am still> > > fighting the insurance company for Remicade, and> > because they have no regard> > > for the "person" my hearing isn't until 3/12,> well> > by then I may not be able> > > to walk at all, not that they care.> > > My questions, my husband said maybe we should go> > head and start medication> > > and pay for it ourselves? I know some have had> > good results with Remicade> > > and some not.> > > How many are on, or

had good results from> Humaria,> > another drug the doctor> > > is talking about?> > > how about enberal anyone tried this one. I'm not> > sure what to go with, if> > > we start Remicade and the insurance company> denies> > it, we cannot continue to> > > do it, just too expensive. But what about the> > other drugs, I have looked up> > > costs on them, and they are all expensive, but> can> > do at home and not in the> > > hospital?> > > Any information would be greatly appreciated!> God> > Bless, Marla> > >> > > --> > >> > >> > >> > >> > > ------------ --------- ---------> > > Who's never won? Biggest Grammy Award surprises> of> > all time on AOL> >> Music.<http://music. aol.com/grammys/ pictures/> never-won- a-grammy? NCID=aolcmp00300 000002548>> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer (AT) marykay (DOT) com> > www.marykay. com/mbramer> > > > ____________ _________ _________ _________ _________> _________ _> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs> > > > > > > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Cathy, The cold does the same for me, Pain, and walking and cold, a lot of pain. I have a lot of trouble with my legs not wanting to go, even now that it's warmed up some, I can only walk so far no matter what. I do not have muscle cramping however, I do get the leg and back pain and will suffer all night if I push it. But I know what you mean about not giving it up, my son played Hockey last year and he had for 3 years and this was his senior year, I think I missed 1 game, I was there in those cold Hockey rinks watching him play, then having pain for the next 24 hours, but I was there. I hope it gets better for you, watch your walking, I will be praying that you can make it to all his games, like I said I know how important that is. Marla

Tracie, Thanks for the info on lactic acid. Do you know if there is anything we can do to clear the excess lactic acid other than stay well hydrated? Yesterday I went to my son's ball game an had to walk quite a way (way further than I had walked for months) to get to the ball diamond from the parking lot. Surprise surprise, I forgot my cell phone in the car and had to walk back to get it because my little sons were at their friends house. Of course my legs kept stopping on me as I tried to walk, hurting and the muscles were getting really tight. The game lasted for almost 4 hours and the temp outside was in the high 30s. I thought I was dressed warm enough but I could barely get back to the car. My legs were cramping and hurting so bad and really not wanting to move. My hips and back were hurting a lot too. Even after 2 pain pills I was awake off and on all night because of pain and today had to go back to using my walker. I suppose it was a combination of

so much walking and the cold weather. I have to figure out how to deal with this cold weather thing because I am not going to miss his games just because it hurts. My kids are the world to me. Does the cold do this to anyone else? Any suggestions on how to best deal with it?

Praying for painfree days filled with love and joy for all of you! Cathytracie feldhaus wrote:

Marla, I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so the fatigue to them is so much more intense.

Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the

neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement).

How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family.

You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more " embarrassing " to those we're with-- as they don't even think we need it-- (denial) so they fight these changes.

As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair!

and when they get pissy, run them over.....

Love you, Tracie

Re: questions re medication --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

> Thanks Tracie, I am still looking in to all this,> some days I

think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I

> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's hard to explain that> weakness feeling. Well

> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com> wrote:>

> > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like

>

Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so

> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> > *huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.

> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still

> > fighting the insurance company for Remicade, and> because they have no regard> > for the " person " my hearing isn't until 3/12,

well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had

> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm not

> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do it, just too expensive. But what about the> other drugs, I have looked up

> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --

> >>

>> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>

> > > >> > > > -- > Marla Bramer> Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com

> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Cathy, The cold does the same for me, Pain, and walking and cold, a lot of pain. I have a lot of trouble with my legs not wanting to go, even now that it's warmed up some, I can only walk so far no matter what. I do not have muscle cramping however, I do get the leg and back pain and will suffer all night if I push it. But I know what you mean about not giving it up, my son played Hockey last year and he had for 3 years and this was his senior year, I think I missed 1 game, I was there in those cold Hockey rinks watching him play, then having pain for the next 24 hours, but I was there. I hope it gets better for you, watch your walking, I will be praying that you can make it to all his games, like I said I know how important that is. Marla

Tracie, Thanks for the info on lactic acid. Do you know if there is anything we can do to clear the excess lactic acid other than stay well hydrated? Yesterday I went to my son's ball game an had to walk quite a way (way further than I had walked for months) to get to the ball diamond from the parking lot. Surprise surprise, I forgot my cell phone in the car and had to walk back to get it because my little sons were at their friends house. Of course my legs kept stopping on me as I tried to walk, hurting and the muscles were getting really tight. The game lasted for almost 4 hours and the temp outside was in the high 30s. I thought I was dressed warm enough but I could barely get back to the car. My legs were cramping and hurting so bad and really not wanting to move. My hips and back were hurting a lot too. Even after 2 pain pills I was awake off and on all night because of pain and today had to go back to using my walker. I suppose it was a combination of

so much walking and the cold weather. I have to figure out how to deal with this cold weather thing because I am not going to miss his games just because it hurts. My kids are the world to me. Does the cold do this to anyone else? Any suggestions on how to best deal with it?

Praying for painfree days filled with love and joy for all of you! Cathytracie feldhaus wrote:

Marla, I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so the fatigue to them is so much more intense.

Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the

neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement).

How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family.

You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more " embarrassing " to those we're with-- as they don't even think we need it-- (denial) so they fight these changes.

As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair!

and when they get pissy, run them over.....

Love you, Tracie

Re: questions re medication --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

> Thanks Tracie, I am still looking in to all this,> some days I

think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I

> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's hard to explain that> weakness feeling. Well

> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com> wrote:>

> > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like

>

Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so

> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> > *huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.

> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still

> > fighting the insurance company for Remicade, and> because they have no regard> > for the " person " my hearing isn't until 3/12,

well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had

> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm not

> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do it, just too expensive. But what about the> other drugs, I have looked up

> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --

> >>

>> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>

> > > >> > > > -- > Marla Bramer> Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com

> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Cathy, I am so glad that we are of help. That is what

this is all about. Enjoy those boys, mine turned 25

today-- and is still home.....

It's all good! At least for now, I know too much of

what he's up to...

LOL!

Tracie

--- Cathy Borden wrote:

> Thank you! I will try all of that! I really

> appreciate all of your knowlege!!!

> I can't explain how much hope this group has given

> me. I felt so alone in the dark and scared before.

> Not that I am still not scared about the future, but

> I am not alone any more and i am not completely in

> the dark. Thank you soooooo much!

> Is there anything to get rid of this very round

> face from prednisone? I look in the mirror and hate

> what I see. I don't look anything like me. But......

> I am alive and had another wonderful day with my 3

> wonderful sons.... so oh well. I guess it doesn't

> matter how I look. They still love me and I am still

> here thank God!!

> Thanks again!

> Cathy

>

> tracie feldhaus wrote:

> The Internist that I used to work for

> always took 2

> Rolaids before he went running. He swore that it

> kept

> the lactic acid from building up. Personally, I use

> the MSM Powder before I try to do anything that

> mimics

> exercise-- and then I eat a banana and get some

> extra

> fluids down (Gatorade works well to balance the

> electroylytes) and that seems to help.

> One thing to do before you start out is to do some

> stretches where you raise up on your toes, hold it--

> and repeat 5 or 6 times to get those calf muscles

> stretched out-- also if you can use a wedge of wood,

> or open the cupboard door and put your toes on it--

> and keep the heel on the floor-- just holding it

> there

> for a count of 30, working up to a minute to 90

> seconds-- this helps those calf muscles to keep a

> bit

> more flexible. START SLOW!!!!

> As far as the cold and body pain-- LAYER, LAYER

> LAYERS! Thermals under your pants, shirts, etc-- and

> a blanket to sit on and wrap up in-- so that you

> stay

> as warm as possible. A thermos of hot decaf tea

> works

> well also--

>

> Hope this helps,

> Tracie

> NS Co-owner/moderator

> --- Cathy Borden wrote:

>

> > Tracie,

> > Thanks for the info on lactic acid. Do you know if

> > there is anything we can do to clear the excess

> > lactic acid other than stay well hydrated?

> Yesterday

> > I went to my son's ball game an had to walk quite

> a

> > way (way further than I had walked for months) to

> > get to the ball diamond from the parking lot.

> > Surprise surprise, I forgot my cell phone in the

> car

> > and had to walk back to get it because my little

> > sons were at their friends house. Of course my

> legs

> > kept stopping on me as I tried to walk, hurting

> and

> > the muscles were getting really tight. The game

> > lasted for almost 4 hours and the temp outside was

> > in the high 30s. I thought I was dressed warm

> enough

> > but I could barely get back to the car. My legs

> were

> > cramping and hurting so bad and really not wanting

> > to move. My hips and back were hurting a lot too.

> > Even after 2 pain pills I was awake off and on all

> > night because of pain and today had to go back to

> > using my walker. I suppose it was a combination of

> > so much walking and

> > the cold weather. I have to figure out how to deal

> > with this cold weather thing because I am not

> going

> > to miss his games just because it hurts. My kids

> are

> > the world to me. Does the cold do this to anyone

> > else? Any suggestions on how to best deal with it?

> > Praying for painfree days filled with love and joy

> > for all of you!

> > Cathy

> >

> > tracie feldhaus wrote:

> > Marla,

> > I know I've talked about this-- but one thing I

> > learned from the dc is that when we exercise (for

> us

> > walk to the mailbox) or even try the grocery store

> > or the mall-- that the lactic acid that builds up

> in

> > our muscles isn't cleared out like it is in

> someone

> > healthy. We store all those toxins-- in our lymphs

> > and muscles, so the fatigue to them is so much

> more

> > intense.

> > Like you, I have had episodes (now more often) of

> > my legs wanting me to stop trying to hike the

> mall--

> > it's just too much. I also wonder how much of this

> > is due to the fact that if we are lung compromised

> > -- our bodies are trying to keep the oxygen going

> to

> > our vital organs-- so it deprives it from the

> > extremities. I know this plays a huge part in the

> > neuropathy of our hands and feet-- and at least to

> > me, it stands to reason that it would be effecting

> > the strength and recovery from exercise

> (movement).

> >

> > How long has it been since you've had a lung

> > function test? Where's your DLCO drop to when you

> > do go out on what would be a normal excursion for

> > the rest of the family.

> > You and I both know this goes back to the same

> > bottom line as the Disabled Persons Parking

> Placard.

> > It's alot more " embarrassing " to those we're

> with--

> > as they don't even think we need it-- (denial) so

> > they fight these changes.

> > As for you--- you need to do what you can to keep

> > yourself as functional as possible. If this means

> > that you get a chair-- get a chair! and when they

> > get pissy, run them over.....

> >

> > Love you,

> > Tracie

> >

> >

> > Re: questions re

> > medication

> >

> >

> > --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

> >

> > > Thanks Tracie, I am still looking in to all

> this,

> > > some days I think I really

> > > don't need this as I do OK, but on those days I

> > find

> > > I feel better because

> > > all I slept a lot that day, my family thinks

> it's

> > > crazy that I want a wheel

> > > chair, but I find I can't keep up with anyone,

> and

> > I

> > > can't walk for very

> > > long, it's so hard to explain to them how I

> feel,

> > > the more I use my legs,

> > > the weaker they become and it's hard to explain

> > that

> > > weakness feeling. Well

> > > thanks for the information I really appreciate

> it!

> >

> > > Marla

> > >

> > > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

> > wrote:

> > >

> > > > *Marla, Humira and Enbrel are both injections

> > > you can give yourself at

> > > > home. So you don't have the facility fee for

> the

> > > infusion. I'll have to

> > > > check, but I think it was Enbrel that works

> like

> > > Remicade-- in that it

> > > > targets the TNF-a protein, without attacking

> the

> > > entire immune system-- so

> > > > it is selective. I know Stinson was on Enbrel

> > and

> > > felt better as far as the

> > > > sarcoid-induced arthritis, but i know he

> became

> > so

> > > exhausted from the

> > > > lowered immune system that he discontinued it.

> *

> > > > *I'll let others give you their take on

> these--*

> > > > *huggs*

> > > > *Tracie*

>

=== message truncated ===

[Guest guest]

Cathy, I am so glad that we are of help. That is what

this is all about. Enjoy those boys, mine turned 25

today-- and is still home.....

It's all good! At least for now, I know too much of

what he's up to...

LOL!

Tracie

--- Cathy Borden wrote:

> Thank you! I will try all of that! I really

> appreciate all of your knowlege!!!

> I can't explain how much hope this group has given

> me. I felt so alone in the dark and scared before.

> Not that I am still not scared about the future, but

> I am not alone any more and i am not completely in

> the dark. Thank you soooooo much!

> Is there anything to get rid of this very round

> face from prednisone? I look in the mirror and hate

> what I see. I don't look anything like me. But......

> I am alive and had another wonderful day with my 3

> wonderful sons.... so oh well. I guess it doesn't

> matter how I look. They still love me and I am still

> here thank God!!

> Thanks again!

> Cathy

>

> tracie feldhaus wrote:

> The Internist that I used to work for

> always took 2

> Rolaids before he went running. He swore that it

> kept

> the lactic acid from building up. Personally, I use

> the MSM Powder before I try to do anything that

> mimics

> exercise-- and then I eat a banana and get some

> extra

> fluids down (Gatorade works well to balance the

> electroylytes) and that seems to help.

> One thing to do before you start out is to do some

> stretches where you raise up on your toes, hold it--

> and repeat 5 or 6 times to get those calf muscles

> stretched out-- also if you can use a wedge of wood,

> or open the cupboard door and put your toes on it--

> and keep the heel on the floor-- just holding it

> there

> for a count of 30, working up to a minute to 90

> seconds-- this helps those calf muscles to keep a

> bit

> more flexible. START SLOW!!!!

> As far as the cold and body pain-- LAYER, LAYER

> LAYERS! Thermals under your pants, shirts, etc-- and

> a blanket to sit on and wrap up in-- so that you

> stay

> as warm as possible. A thermos of hot decaf tea

> works

> well also--

>

> Hope this helps,

> Tracie

> NS Co-owner/moderator

> --- Cathy Borden wrote:

>

> > Tracie,

> > Thanks for the info on lactic acid. Do you know if

> > there is anything we can do to clear the excess

> > lactic acid other than stay well hydrated?

> Yesterday

> > I went to my son's ball game an had to walk quite

> a

> > way (way further than I had walked for months) to

> > get to the ball diamond from the parking lot.

> > Surprise surprise, I forgot my cell phone in the

> car

> > and had to walk back to get it because my little

> > sons were at their friends house. Of course my

> legs

> > kept stopping on me as I tried to walk, hurting

> and

> > the muscles were getting really tight. The game

> > lasted for almost 4 hours and the temp outside was

> > in the high 30s. I thought I was dressed warm

> enough

> > but I could barely get back to the car. My legs

> were

> > cramping and hurting so bad and really not wanting

> > to move. My hips and back were hurting a lot too.

> > Even after 2 pain pills I was awake off and on all

> > night because of pain and today had to go back to

> > using my walker. I suppose it was a combination of

> > so much walking and

> > the cold weather. I have to figure out how to deal

> > with this cold weather thing because I am not

> going

> > to miss his games just because it hurts. My kids

> are

> > the world to me. Does the cold do this to anyone

> > else? Any suggestions on how to best deal with it?

> > Praying for painfree days filled with love and joy

> > for all of you!

> > Cathy

> >

> > tracie feldhaus wrote:

> > Marla,

> > I know I've talked about this-- but one thing I

> > learned from the dc is that when we exercise (for

> us

> > walk to the mailbox) or even try the grocery store

> > or the mall-- that the lactic acid that builds up

> in

> > our muscles isn't cleared out like it is in

> someone

> > healthy. We store all those toxins-- in our lymphs

> > and muscles, so the fatigue to them is so much

> more

> > intense.

> > Like you, I have had episodes (now more often) of

> > my legs wanting me to stop trying to hike the

> mall--

> > it's just too much. I also wonder how much of this

> > is due to the fact that if we are lung compromised

> > -- our bodies are trying to keep the oxygen going

> to

> > our vital organs-- so it deprives it from the

> > extremities. I know this plays a huge part in the

> > neuropathy of our hands and feet-- and at least to

> > me, it stands to reason that it would be effecting

> > the strength and recovery from exercise

> (movement).

> >

> > How long has it been since you've had a lung

> > function test? Where's your DLCO drop to when you

> > do go out on what would be a normal excursion for

> > the rest of the family.

> > You and I both know this goes back to the same

> > bottom line as the Disabled Persons Parking

> Placard.

> > It's alot more " embarrassing " to those we're

> with--

> > as they don't even think we need it-- (denial) so

> > they fight these changes.

> > As for you--- you need to do what you can to keep

> > yourself as functional as possible. If this means

> > that you get a chair-- get a chair! and when they

> > get pissy, run them over.....

> >

> > Love you,

> > Tracie

> >

> >

> > Re: questions re

> > medication

> >

> >

> > --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

> >

> > > Thanks Tracie, I am still looking in to all

> this,

> > > some days I think I really

> > > don't need this as I do OK, but on those days I

> > find

> > > I feel better because

> > > all I slept a lot that day, my family thinks

> it's

> > > crazy that I want a wheel

> > > chair, but I find I can't keep up with anyone,

> and

> > I

> > > can't walk for very

> > > long, it's so hard to explain to them how I

> feel,

> > > the more I use my legs,

> > > the weaker they become and it's hard to explain

> > that

> > > weakness feeling. Well

> > > thanks for the information I really appreciate

> it!

> >

> > > Marla

> > >

> > > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

> > wrote:

> > >

> > > > *Marla, Humira and Enbrel are both injections

> > > you can give yourself at

> > > > home. So you don't have the facility fee for

> the

> > > infusion. I'll have to

> > > > check, but I think it was Enbrel that works

> like

> > > Remicade-- in that it

> > > > targets the TNF-a protein, without attacking

> the

> > > entire immune system-- so

> > > > it is selective. I know Stinson was on Enbrel

> > and

> > > felt better as far as the

> > > > sarcoid-induced arthritis, but i know he

> became

> > so

> > > exhausted from the

> > > > lowered immune system that he discontinued it.

> *

> > > > *I'll let others give you their take on

> these--*

> > > > *huggs*

> > > > *Tracie*

>

=== message truncated ===

[Guest guest]

Marla, thanks for your reply. I am glad you made it to all but one game! That's awesome! Thanks for telling me what your legs do too. It's nice to know I am not alone. Sometimes I just wonder if I've lost my mind. I am walking and after not very far, my legs just seem to stop. I stand there looking like an idiot because my legs wont go forward. I have learned to recognize it a bit sooner and if I stop and rest before they get to the point that they just wont go, I can usually make it farther. One more question if you don't mind. Today when we were leaving his game and walking across the grass, I was of course loosing my balance more than normal because it was really uneven. I told my husband that people who see me walk must think I am drunk (and I don't even drink). I wobble and sway. Even at home on flat floors I go sideways and crash into the walls frequently with no warning. I have begun walking with my hands on the wall beside me and I don't

crash as much. Does that happen to you too? Have a great day! CathyMarla Bramer wrote: Cathy, The cold does the same for me, Pain, and walking and cold, a lot of pain. I have a lot of trouble with my legs not wanting to go, even now that it's warmed up some, I can only walk so far no matter what. I do not have muscle cramping however, I do get the leg and back pain and will suffer all night if I push it. But I know what you mean about not giving it up, my son played

Hockey last year and he had for 3 years and this was his senior year, I think I missed 1 game, I was there in those cold Hockey rinks watching him play, then having pain for the next 24 hours, but I was there. I hope it gets better for you, watch your walking, I will be praying that you can make it to all his games, like I said I know how important that is. Marla On Tue, Mar 25, 2008 at 11:35 PM, Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: Tracie, Thanks for the info on lactic acid. Do you know if there is anything we can do to clear the excess lactic acid other than stay well hydrated? Yesterday I went to my son's ball game an had to walk quite a way (way further than I had walked for months) to get to the

ball diamond from the parking lot. Surprise surprise, I forgot my cell phone in the car and had to walk back to get it because my little sons were at their friends house. Of course my legs kept stopping on me as I tried to walk, hurting and the muscles were getting really tight. The game lasted for almost 4 hours and the temp outside was in the high 30s. I thought I was dressed warm enough but I could barely get back to the car. My legs were cramping and hurting so bad and really not wanting to move. My hips and back were hurting a lot too. Even after 2 pain pills I was awake off and on all night because of pain and today had to go back to using my walker. I suppose it was a combination of so much walking and the cold weather. I have to figure out how to deal with this cold weather thing because I am not going to miss his games just because it hurts. My kids are the world to me. Does the cold do this to anyone else? Any suggestions on how to best deal with it? Praying for painfree days filled with love and joy for all of you! Cathy tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote: Marla, I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so

the fatigue to them is so much more intense. Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement). How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family. You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more "embarrassing" to those we're with-- as they don't even think we need it-- (denial) so they fight these changes. As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair! and when they get pissy, run them over..... Love you, Tracie Re: questions re medication --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> Thanks Tracie, I am still looking in to all this,> some days I think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's

hard to explain that> weakness feeling. Well> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com> wrote:> > > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like> Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> >

*huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still> > fighting the insurance company for Remicade, and> because they have no regard> > for the "person" my hearing isn't until 3/12, well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm

not> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do it, just too expensive. But what about the> other drugs, I have looked up> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --> >> >> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>> > > >> > > > -- > Marla Bramer>

Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. -- Marla BramerIndependent Beauty

Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Marla, thanks for your reply. I am glad you made it to all but one game! That's awesome! Thanks for telling me what your legs do too. It's nice to know I am not alone. Sometimes I just wonder if I've lost my mind. I am walking and after not very far, my legs just seem to stop. I stand there looking like an idiot because my legs wont go forward. I have learned to recognize it a bit sooner and if I stop and rest before they get to the point that they just wont go, I can usually make it farther. One more question if you don't mind. Today when we were leaving his game and walking across the grass, I was of course loosing my balance more than normal because it was really uneven. I told my husband that people who see me walk must think I am drunk (and I don't even drink). I wobble and sway. Even at home on flat floors I go sideways and crash into the walls frequently with no warning. I have begun walking with my hands on the wall beside me and I don't

crash as much. Does that happen to you too? Have a great day! CathyMarla Bramer wrote: Cathy, The cold does the same for me, Pain, and walking and cold, a lot of pain. I have a lot of trouble with my legs not wanting to go, even now that it's warmed up some, I can only walk so far no matter what. I do not have muscle cramping however, I do get the leg and back pain and will suffer all night if I push it. But I know what you mean about not giving it up, my son played

Hockey last year and he had for 3 years and this was his senior year, I think I missed 1 game, I was there in those cold Hockey rinks watching him play, then having pain for the next 24 hours, but I was there. I hope it gets better for you, watch your walking, I will be praying that you can make it to all his games, like I said I know how important that is. Marla On Tue, Mar 25, 2008 at 11:35 PM, Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: Tracie, Thanks for the info on lactic acid. Do you know if there is anything we can do to clear the excess lactic acid other than stay well hydrated? Yesterday I went to my son's ball game an had to walk quite a way (way further than I had walked for months) to get to the

ball diamond from the parking lot. Surprise surprise, I forgot my cell phone in the car and had to walk back to get it because my little sons were at their friends house. Of course my legs kept stopping on me as I tried to walk, hurting and the muscles were getting really tight. The game lasted for almost 4 hours and the temp outside was in the high 30s. I thought I was dressed warm enough but I could barely get back to the car. My legs were cramping and hurting so bad and really not wanting to move. My hips and back were hurting a lot too. Even after 2 pain pills I was awake off and on all night because of pain and today had to go back to using my walker. I suppose it was a combination of so much walking and the cold weather. I have to figure out how to deal with this cold weather thing because I am not going to miss his games just because it hurts. My kids are the world to me. Does the cold do this to anyone else? Any suggestions on how to best deal with it? Praying for painfree days filled with love and joy for all of you! Cathy tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote: Marla, I know I've talked about this-- but one thing I learned from the dc is that when we exercise (for us walk to the mailbox) or even try the grocery store or the mall-- that the lactic acid that builds up in our muscles isn't cleared out like it is in someone healthy. We store all those toxins-- in our lymphs and muscles, so

the fatigue to them is so much more intense. Like you, I have had episodes (now more often) of my legs wanting me to stop trying to hike the mall-- it's just too much. I also wonder how much of this is due to the fact that if we are lung compromised -- our bodies are trying to keep the oxygen going to our vital organs-- so it deprives it from the extremities. I know this plays a huge part in the neuropathy of our hands and feet-- and at least to me, it stands to reason that it would be effecting the strength and recovery from exercise (movement). How long has it been since you've had a lung function test? Where's your DLCO drop to when you do go out on what would be a normal excursion for the rest of the family. You and I both know this goes back to the same bottom line as the Disabled Persons Parking Placard. It's alot more "embarrassing" to those we're with-- as they don't even think we need it-- (denial) so they fight these changes. As for you--- you need to do what you can to keep yourself as functional as possible. If this means that you get a chair-- get a chair! and when they get pissy, run them over..... Love you, Tracie Re: questions re medication --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> Thanks Tracie, I am still looking in to all this,> some days I think I really> don't need this as I do OK, but on those days I find> I feel better because> all I slept a lot that day, my family thinks it's> crazy that I want a wheel> chair, but I find I can't keep up with anyone, and I> can't walk for very> long, it's so hard to explain to them how I feel,> the more I use my legs,> the weaker they become and it's

hard to explain that> weakness feeling. Well> thanks for the information I really appreciate it! > Marla> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com> wrote:> > > *Marla, Humira and Enbrel are both injections> you can give yourself at> > home. So you don't have the facility fee for the> infusion. I'll have to> > check, but I think it was Enbrel that works like> Remicade-- in that it> > targets the TNF-a protein, without attacking the> entire immune system-- so> > it is selective. I know Stinson was on Enbrel and> felt better as far as the> > sarcoid-induced arthritis, but i know he became so> exhausted from the> > lowered immune system that he discontinued it. *> > *I'll let others give you their take on these--*> >

*huggs*> > *Tracie*> >> > In a message dated 2/10/2008 12:29:40 P.M.> Pacific Standard Time,> > mebramer (AT) gmail (DOT) com writes:> >> > I have questions some of you might be able to> answer, I am still> > fighting the insurance company for Remicade, and> because they have no regard> > for the "person" my hearing isn't until 3/12, well> by then I may not be able> > to walk at all, not that they care.> > My questions, my husband said maybe we should go> head and start medication> > and pay for it ourselves? I know some have had> good results with Remicade> > and some not.> > How many are on, or had good results from Humaria,> another drug the doctor> > is talking about?> > how about enberal anyone tried this one. I'm

not> sure what to go with, if> > we start Remicade and the insurance company denies> it, we cannot continue to> > do it, just too expensive. But what about the> other drugs, I have looked up> > costs on them, and they are all expensive, but can> do at home and not in the> > hospital?> > Any information would be greatly appreciated! God> Bless, Marla> >> > --> >> >> >> >> > ------------ --------- ---------> > Who's never won? Biggest Grammy Award surprises of> all time on AOL>Music.<http://music. aol.com/grammys/ pictures/ never-won- a-grammy? NCID=aolcmp00300 000002548>> > > >> > > > -- > Marla Bramer>

Independent Beauty Consultant> Kay> > mbramer (AT) marykay (DOT) com> www.marykay. com/mbramer> ____________ _________ _________ _________ _________ _________ _Never miss a thing. Make Yahoo your home page. http://www.yahoo. com/r/hs Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. -- Marla BramerIndependent Beauty

Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Cathy, I can tell you that the leg thing happens to

alot of us. I've found that this past year-- my

Christmas gift to myself was a cane. I grateful that

it wasn't a wheelchair..

Like you, if the ground is at all uneven-- and I

haven't found any that isn't anymore--- I am the sober

tilter of the group. I'll have to look back in the

ARCHIVES-- I know I've posted on the cranial nerves

that control balance-- but I can't recall what nerves

are involved, at least not tonight. It's weird- if I

can get stuff from my short term memory to my long

term memory- recall is pretty good. But add a couple

of long days (I've had a friend over cleaning my house

the last couple of days (this is gonna be a long haul

to get it back to clean as I've had to let it go, just

cannot do it anymore) so what little bit I've done has

wiped me out.

(One thing about sarc, you learn it's ok to name the

spiders, that way you can tell people they are your

pets) (oh, the the dustbunnies-- just drop a few

birth control pills around, and they don't multiply as

fast) and another- it's ok to write your name in my

dust, just don't date it.

Anyway back to what nerves effect balance-- it's

either the 7th or 8th cranials-- and since sarc loves

the 7th-- (Bells Palsy, that wonderful left side

facial droop) is probably the one.

I know Rose and Marla and Ron and I all are wall

huggers. Actually, Ron is now " wheeling " around-- but

he used to hug walls--

One of the biggest surrenders for all of us is to ask

for the parking placard-- so that you don't have to do

the cross country hikes. WE all know the fatigue of

just getting into the store wears us out, and if we've

parked in the lower forty, we've not got the energy to

get the groceries.

Each of these problems is another moment of humility--

or I should say humbleness. Personally, I'd rather be

healthy- but since that option isn't what i have for

now, I use my pretty blue disabilty placard, and if

anyone wants to confront me (and they do) I let them

know that they can have my placard if they take my

disease and the immunosuppressants and the...

Shuts em up pretty darn fast. I love it when they do

their judgement thing on Remicade day, " ya know, I've

just finished chemo, come closer, I'll see if I can

hit your shoes if I puke " is another good one.

Yep, I'm on a roll tonight.

Take care, and we are all glad you found the group,

and that we are able to help!

Hugs,

Tracie

NS Co-owner/moderator

--- Cathy Borden wrote:

> Marla,

> thanks for your reply. I am glad you made it to

> all but one game! That's awesome!

> Thanks for telling me what your legs do too. It's

> nice to know I am not alone. Sometimes I just wonder

> if I've lost my mind. I am walking and after not

> very far, my legs just seem to stop. I stand there

> looking like an idiot because my legs wont go

> forward. I have learned to recognize it a bit sooner

> and if I stop and rest before they get to the point

> that they just wont go, I can usually make it

> farther. One more question if you don't mind. Today

> when we were leaving his game and walking across the

> grass, I was of course loosing my balance more than

> normal because it was really uneven. I told my

> husband that people who see me walk must think I am

> drunk (and I don't even drink). I wobble and sway.

> Even at home on flat floors I go sideways and crash

> into the walls frequently with no warning. I have

> begun walking with my hands on the wall beside me

> and I don't crash as much. Does that happen to you

> too?

> Have a great day!

> Cathy

>

> Marla Bramer wrote:

> Cathy,

> The cold does the same for me, Pain, and walking and

> cold, a lot of pain. I have a lot of trouble with

> my legs not wanting to go, even now that it's warmed

> up some, I can only walk so far no matter what. I

> do not have muscle cramping however, I do get the

> leg and back pain and will suffer all night if I

> push it. But I know what you mean about not giving

> it up, my son played Hockey last year and he had for

> 3 years and this was his senior year, I think I

> missed 1 game, I was there in those cold Hockey

> rinks watching him play, then having pain for the

> next 24 hours, but I was there. I hope it gets

> better for you, watch your walking, I will be

> praying that you can make it to all his games, like

> I said I know how important that is. Marla

>

> On Tue, Mar 25, 2008 at 11:35 PM, Cathy Borden

> wrote:

>

> Tracie,

> Thanks for the info on lactic acid. Do you know if

> there is anything we can do to clear the excess

> lactic acid other than stay well hydrated? Yesterday

> I went to my son's ball game an had to walk quite a

> way (way further than I had walked for months) to

> get to the ball diamond from the parking lot.

> Surprise surprise, I forgot my cell phone in the car

> and had to walk back to get it because my little

> sons were at their friends house. Of course my legs

> kept stopping on me as I tried to walk, hurting and

> the muscles were getting really tight. The game

> lasted for almost 4 hours and the temp outside was

> in the high 30s. I thought I was dressed warm enough

> but I could barely get back to the car. My legs were

> cramping and hurting so bad and really not wanting

> to move. My hips and back were hurting a lot too.

> Even after 2 pain pills I was awake off and on all

> night because of pain and today had to go back to

> using my walker. I suppose it was a combination of

> so much walking and

> the cold weather. I have to figure out how to deal

> with this cold weather thing because I am not going

> to miss his games just because it hurts. My kids are

> the world to me. Does the cold do this to anyone

> else? Any suggestions on how to best deal with it?

> Praying for painfree days filled with love and joy

> for all of you!

> Cathy

>

>

> tracie feldhaus wrote:

>

>

>

> Marla,

> I know I've talked about this-- but one thing I

> learned from the dc is that when we exercise (for us

> walk to the mailbox) or even try the grocery store

> or the mall-- that the lactic acid that builds up in

> our muscles isn't cleared out like it is in someone

> healthy. We store all those toxins-- in our lymphs

> and muscles, so the fatigue to them is so much more

> intense.

> Like you, I have had episodes (now more often) of

> my legs wanting me to stop trying to hike the mall--

> it's just too much. I also wonder how much of this

> is due to the fact that if we are lung compromised

> -- our bodies are trying to keep the oxygen going to

> our vital organs-- so it deprives it from the

> extremities. I know this plays a huge part in the

> neuropathy of our hands and feet-- and at least to

> me, it stands to reason that it would be effecting

> the strength and recovery from exercise (movement).

>

> How long has it been since you've had a lung

> function test? Where's your DLCO drop to when you

> do go out on what would be a normal excursion for

> the rest of the family.

> You and I both know this goes back to the same

> bottom line as the Disabled Persons Parking Placard.

> It's alot more " embarrassing " to those we're with--

> as they don't even think we need it-- (denial) so

> they fight these changes.

> As for you--- you need to do what you can to keep

> yourself as functional as possible. If this means

> that you get a chair-- get a chair! and when they

> get pissy, run them over.....

>

> Love you,

> Tracie

>

>

> Re: questions re

> medication

>

>

> --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

>

> > Thanks Tracie, I am still looking in to all this,

> > some days I think I really

> > don't need this as I do OK, but on those days I

> find

> > I feel better because

> > all I slept a lot that day, my family thinks it's

> > crazy that I want a wheel

> > chair, but I find I can't keep up with anyone, and

> I

> > can't walk for very

> > long, it's so hard to explain to them how I feel,

> > the more I use my legs,

> > the weaker they become and it's hard to explain

> that

> > weakness feeling. Well

> > thanks for the information I really appreciate it!

>

> > Marla

> >

> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

> wrote:

> >

> > > *Marla, Humira and Enbrel are both injections

> > you can give yourself at

> > > home. So you don't have the facility fee for the

> > infusion. I'll have to

> > > check, but I think it was Enbrel that works like

> > Remicade-- in that it

> > > targets the TNF-a protein, without attacking the

> > entire immune system-- so

> > > it is selective. I know Stinson was on Enbrel

> and

> > felt better as far as the

> > > sarcoid-induced arthritis, but i know he became

> so

> > exhausted from the

> > > lowered immune system that he discontinued it. *

> > > *I'll let others give you their take on these--*

> > > *huggs*

> > > *Tracie*

> > >

> > > In a message dated 2/10/2008 12:29:40 P.M.

> > Pacific Standard Time,

> > > mebramer (AT) gmail (DOT) com writes:

> > >

> > > I have questions some of you might be able to

> > answer, I am still

> > > fighting the insurance company for Remicade, and

> > because they have no regard

> > > for the " person " my hearing isn't until 3/12,

> well

> > by then I may not be able

> > > to walk at all, not that they care.

> > > My questions, my husband said maybe we should go

> > head and start medication

> > > and pay for it ourselves? I know some have had

> > good results with Remicade

> > > and some not.

> > > How many are on, or had good results from

> Humaria,

> > another drug the doctor

> > > is talking about?

> > > how about enberal anyone tried this one. I'm not

> > sure what to go with, if

> > > we start Remicade and the insurance company

> denies

> > it, we cannot continue to

> > > do it, just too expensive. But what about the

> > other drugs, I have looked up

> > > costs on them, and they are all expensive, but

> can

> > do at home and not in the

>

=== message truncated ===

[Guest guest]

Cathy, I can tell you that the leg thing happens to

alot of us. I've found that this past year-- my

Christmas gift to myself was a cane. I grateful that

it wasn't a wheelchair..

Like you, if the ground is at all uneven-- and I

haven't found any that isn't anymore--- I am the sober

tilter of the group. I'll have to look back in the

ARCHIVES-- I know I've posted on the cranial nerves

that control balance-- but I can't recall what nerves

are involved, at least not tonight. It's weird- if I

can get stuff from my short term memory to my long

term memory- recall is pretty good. But add a couple

of long days (I've had a friend over cleaning my house

the last couple of days (this is gonna be a long haul

to get it back to clean as I've had to let it go, just

cannot do it anymore) so what little bit I've done has

wiped me out.

(One thing about sarc, you learn it's ok to name the

spiders, that way you can tell people they are your

pets) (oh, the the dustbunnies-- just drop a few

birth control pills around, and they don't multiply as

fast) and another- it's ok to write your name in my

dust, just don't date it.

Anyway back to what nerves effect balance-- it's

either the 7th or 8th cranials-- and since sarc loves

the 7th-- (Bells Palsy, that wonderful left side

facial droop) is probably the one.

I know Rose and Marla and Ron and I all are wall

huggers. Actually, Ron is now " wheeling " around-- but

he used to hug walls--

One of the biggest surrenders for all of us is to ask

for the parking placard-- so that you don't have to do

the cross country hikes. WE all know the fatigue of

just getting into the store wears us out, and if we've

parked in the lower forty, we've not got the energy to

get the groceries.

Each of these problems is another moment of humility--

or I should say humbleness. Personally, I'd rather be

healthy- but since that option isn't what i have for

now, I use my pretty blue disabilty placard, and if

anyone wants to confront me (and they do) I let them

know that they can have my placard if they take my

disease and the immunosuppressants and the...

Shuts em up pretty darn fast. I love it when they do

their judgement thing on Remicade day, " ya know, I've

just finished chemo, come closer, I'll see if I can

hit your shoes if I puke " is another good one.

Yep, I'm on a roll tonight.

Take care, and we are all glad you found the group,

and that we are able to help!

Hugs,

Tracie

NS Co-owner/moderator

--- Cathy Borden wrote:

> Marla,

> thanks for your reply. I am glad you made it to

> all but one game! That's awesome!

> Thanks for telling me what your legs do too. It's

> nice to know I am not alone. Sometimes I just wonder

> if I've lost my mind. I am walking and after not

> very far, my legs just seem to stop. I stand there

> looking like an idiot because my legs wont go

> forward. I have learned to recognize it a bit sooner

> and if I stop and rest before they get to the point

> that they just wont go, I can usually make it

> farther. One more question if you don't mind. Today

> when we were leaving his game and walking across the

> grass, I was of course loosing my balance more than

> normal because it was really uneven. I told my

> husband that people who see me walk must think I am

> drunk (and I don't even drink). I wobble and sway.

> Even at home on flat floors I go sideways and crash

> into the walls frequently with no warning. I have

> begun walking with my hands on the wall beside me

> and I don't crash as much. Does that happen to you

> too?

> Have a great day!

> Cathy

>

> Marla Bramer wrote:

> Cathy,

> The cold does the same for me, Pain, and walking and

> cold, a lot of pain. I have a lot of trouble with

> my legs not wanting to go, even now that it's warmed

> up some, I can only walk so far no matter what. I

> do not have muscle cramping however, I do get the

> leg and back pain and will suffer all night if I

> push it. But I know what you mean about not giving

> it up, my son played Hockey last year and he had for

> 3 years and this was his senior year, I think I

> missed 1 game, I was there in those cold Hockey

> rinks watching him play, then having pain for the

> next 24 hours, but I was there. I hope it gets

> better for you, watch your walking, I will be

> praying that you can make it to all his games, like

> I said I know how important that is. Marla

>

> On Tue, Mar 25, 2008 at 11:35 PM, Cathy Borden

> wrote:

>

> Tracie,

> Thanks for the info on lactic acid. Do you know if

> there is anything we can do to clear the excess

> lactic acid other than stay well hydrated? Yesterday

> I went to my son's ball game an had to walk quite a

> way (way further than I had walked for months) to

> get to the ball diamond from the parking lot.

> Surprise surprise, I forgot my cell phone in the car

> and had to walk back to get it because my little

> sons were at their friends house. Of course my legs

> kept stopping on me as I tried to walk, hurting and

> the muscles were getting really tight. The game

> lasted for almost 4 hours and the temp outside was

> in the high 30s. I thought I was dressed warm enough

> but I could barely get back to the car. My legs were

> cramping and hurting so bad and really not wanting

> to move. My hips and back were hurting a lot too.

> Even after 2 pain pills I was awake off and on all

> night because of pain and today had to go back to

> using my walker. I suppose it was a combination of

> so much walking and

> the cold weather. I have to figure out how to deal

> with this cold weather thing because I am not going

> to miss his games just because it hurts. My kids are

> the world to me. Does the cold do this to anyone

> else? Any suggestions on how to best deal with it?

> Praying for painfree days filled with love and joy

> for all of you!

> Cathy

>

>

> tracie feldhaus wrote:

>

>

>

> Marla,

> I know I've talked about this-- but one thing I

> learned from the dc is that when we exercise (for us

> walk to the mailbox) or even try the grocery store

> or the mall-- that the lactic acid that builds up in

> our muscles isn't cleared out like it is in someone

> healthy. We store all those toxins-- in our lymphs

> and muscles, so the fatigue to them is so much more

> intense.

> Like you, I have had episodes (now more often) of

> my legs wanting me to stop trying to hike the mall--

> it's just too much. I also wonder how much of this

> is due to the fact that if we are lung compromised

> -- our bodies are trying to keep the oxygen going to

> our vital organs-- so it deprives it from the

> extremities. I know this plays a huge part in the

> neuropathy of our hands and feet-- and at least to

> me, it stands to reason that it would be effecting

> the strength and recovery from exercise (movement).

>

> How long has it been since you've had a lung

> function test? Where's your DLCO drop to when you

> do go out on what would be a normal excursion for

> the rest of the family.

> You and I both know this goes back to the same

> bottom line as the Disabled Persons Parking Placard.

> It's alot more " embarrassing " to those we're with--

> as they don't even think we need it-- (denial) so

> they fight these changes.

> As for you--- you need to do what you can to keep

> yourself as functional as possible. If this means

> that you get a chair-- get a chair! and when they

> get pissy, run them over.....

>

> Love you,

> Tracie

>

>

> Re: questions re

> medication

>

>

> --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:

>

> > Thanks Tracie, I am still looking in to all this,

> > some days I think I really

> > don't need this as I do OK, but on those days I

> find

> > I feel better because

> > all I slept a lot that day, my family thinks it's

> > crazy that I want a wheel

> > chair, but I find I can't keep up with anyone, and

> I

> > can't walk for very

> > long, it's so hard to explain to them how I feel,

> > the more I use my legs,

> > the weaker they become and it's hard to explain

> that

> > weakness feeling. Well

> > thanks for the information I really appreciate it!

>

> > Marla

> >

> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>

> wrote:

> >

> > > *Marla, Humira and Enbrel are both injections

> > you can give yourself at

> > > home. So you don't have the facility fee for the

> > infusion. I'll have to

> > > check, but I think it was Enbrel that works like

> > Remicade-- in that it

> > > targets the TNF-a protein, without attacking the

> > entire immune system-- so

> > > it is selective. I know Stinson was on Enbrel

> and

> > felt better as far as the

> > > sarcoid-induced arthritis, but i know he became

> so

> > exhausted from the

> > > lowered immune system that he discontinued it. *

> > > *I'll let others give you their take on these--*

> > > *huggs*

> > > *Tracie*

> > >

> > > In a message dated 2/10/2008 12:29:40 P.M.

> > Pacific Standard Time,

> > > mebramer (AT) gmail (DOT) com writes:

> > >

> > > I have questions some of you might be able to

> > answer, I am still

> > > fighting the insurance company for Remicade, and

> > because they have no regard

> > > for the " person " my hearing isn't until 3/12,

> well

> > by then I may not be able

> > > to walk at all, not that they care.

> > > My questions, my husband said maybe we should go

> > head and start medication

> > > and pay for it ourselves? I know some have had

> > good results with Remicade

> > > and some not.

> > > How many are on, or had good results from

> Humaria,

> > another drug the doctor

> > > is talking about?

> > > how about enberal anyone tried this one. I'm not

> > sure what to go with, if

> > > we start Remicade and the insurance company

> denies

> > it, we cannot continue to

> > > do it, just too expensive. But what about the

> > other drugs, I have looked up

> > > costs on them, and they are all expensive, but

> can

> > do at home and not in the

>

=== message truncated ===

[Guest guest]

Hi Cathy, The round face goes away slowly when you are able to get of steroids, as it comes from the high doses of steroids you are taking, it took me awhile to get rid of it, but it's gone now, I am not on any steroids now and have been off for a few years, I like Tracie am on Plaquanil, Metotrexate, and with my NS flaring getting ready to add another drug to the list, but I really want to stay away from Prednisone if at all possible, I know what you mean about looking in the mirror, since my face is better it's easier, but I still have added weight, and that is hard for me, but again it is so true, God is good, we are here and able to be with our family. God BLess, Marl a

Thank you! I will try all of that! I really appreciate all of your knowlege!!! I can't explain how much hope this group has given me. I felt so alone in the dark and scared before. Not that I am still not scared about the future, but I am not alone any more and i am not completely in the dark. Thank you soooooo much!

Is there anything to get rid of this very round face from prednisone? I look in the mirror and hate what I see. I don't look anything like me. But...... I am alive and had another wonderful day with my 3 wonderful sons.... so oh well. I guess it doesn't matter how I look. They still love me and I am still here thank God!!

Thanks again! Cathytracie feldhaus wrote:

The Internist that I used to work for always took 2Rolaids before he went running. He swore that it keptthe lactic acid from building up. Personally, I usethe MSM Powder before I try to do anything that mimics

exercise-- and then I eat a banana and get some extrafluids down (Gatorade works well to balance theelectroylytes) and that seems to help. One thing to do before you start out is to do somestretches where you raise up on your toes, hold it--

and repeat 5 or 6 times to get those calf musclesstretched out-- also if you can use a wedge of wood,or open the cupboard door and put your toes on it--and keep the heel on the floor-- just holding it there

for a count of 30, working up to a minute to

90seconds-- this helps those calf muscles to keep a bitmore flexible. START SLOW!!!!As far as the cold and body pain-- LAYER, LAYERLAYERS! Thermals under your pants, shirts, etc-- anda blanket to sit on and wrap up in-- so that you stay

as warm as possible. A thermos of hot decaf tea workswell also-- Hope this helps,TracieNS Co-owner/moderator--- Cathy Borden wrote:

> Tracie,> Thanks for the info on lactic acid. Do you know if> there is anything we can do to clear the excess> lactic acid other than stay well hydrated? Yesterday> I went to my son's ball game an had to walk quite a

> way (way further than I had walked for months) to> get to the ball diamond from the parking lot.> Surprise surprise, I forgot my cell phone in the car> and had to walk back to get it because my little

> sons

were at their friends house. Of course my legs> kept stopping on me as I tried to walk, hurting and> the muscles were getting really tight. The game> lasted for almost 4 hours and the temp outside was

> in the high 30s. I thought I was dressed warm enough> but I could barely get back to the car. My legs were> cramping and hurting so bad and really not wanting> to move. My hips and back were hurting a lot too.

> Even after 2 pain pills I was awake off and on all> night because of pain and today had to go back to> using my walker. I suppose it was a combination of> so much walking and> the cold weather. I have to figure out how to deal

> with this cold weather thing because I am not going> to miss his games just because it hurts. My kids are> the world to me. Does the cold do this to anyone> else? Any suggestions on how to best deal with it?

> Praying for

painfree days filled with love and joy> for all of you!> Cathy> > tracie feldhaus wrote:> Marla,

> I know I've talked about this-- but one thing I> learned from the dc is that when we exercise (for us> walk to the mailbox) or even try the grocery store> or the mall-- that the lactic acid that builds up in

> our muscles isn't cleared out like it is in someone> healthy. We store all those toxins-- in our lymphs> and muscles, so the fatigue to them is so much more> intense.> Like you, I have had episodes (now more often) of

> my legs wanting me to stop trying to hike the mall--> it's just too much. I also wonder how much of this> is due to the fact that if we are lung compromised> -- our bodies are trying to keep the oxygen going to

> our vital organs-- so it deprives it

from the> extremities. I know this plays a huge part in the> neuropathy of our hands and feet-- and at least to> me, it stands to reason that it would be effecting> the strength and recovery from exercise (movement).

> > How long has it been since you've had a lung> function test? Where's your DLCO drop to when you> do go out on what would be a normal excursion for> the rest of the family.> You and I both know this goes back to the same

> bottom line as the Disabled Persons Parking Placard.> It's alot more " embarrassing " to those we're with--> as they don't even think we need it-- (denial) so> they fight these changes.

> As for you--- you need to do what you can to keep> yourself as functional as possible. If this means> that you get a chair-- get a chair! and when they> get pissy, run them over.....>

> Love you,> Tracie>

> > Re: questions re> medication> > > --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> > > Thanks Tracie, I am still looking in to all this,

> > some days I think I really> > don't need this as I do OK, but on those days I> find> > I feel better because> > all I slept a lot that day, my family thinks it's> > crazy that I want a wheel

> > chair, but I find I can't keep up with anyone, and> I> > can't walk for very> > long, it's so hard to explain to them how I feel,> > the more I use

my legs,> > the weaker they become and it's hard to explain> that> > weakness feeling. Well> > thanks for the information I really appreciate it!> > > Marla> >

> > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>> wrote:> > > > > *Marla, Humira and Enbrel are both injections> > you can give yourself at> > > home. So you don't have the facility fee for the

> > infusion. I'll have to> > > check, but I think it was Enbrel that works like> > Remicade-- in that it> > > targets the TNF-a protein, without attacking the> > entire immune system-- so

> > > it is selective. I know Stinson was on Enbrel> and> > felt better as far as the> > > sarcoid-induced arthritis, but i know he became> so> > exhausted from the

> > > lowered immune

system that he discontinued it. *> > > *I'll let others give you their take on these--*> > > *huggs*> > > *Tracie*> > >> > > In a message dated 2/10/2008 12:29:40 P.M.

> > Pacific Standard Time,> > > mebramer (AT) gmail (DOT) com writes:> > >> > > I have questions some of you might be able to> > answer, I am still> > > fighting the insurance company for Remicade, and

> > because they have no regard> > > for the " person " my hearing isn't until 3/12,> well> > by then I may not be able> > > to walk at all, not that they care.

> > > My questions, my husband said maybe we should go> > head and start medication> > > and pay for it ourselves? I know some have had> > good results with Remicade> > > and some not.

> > > How many are on, or

had good results from> Humaria,> > another drug the doctor> > > is talking about?> > > how about enberal anyone tried this one. I'm not> > sure what to go with, if

> > > we start Remicade and the insurance company> denies> > it, we cannot continue to> > > do it, just too expensive. But what about the> > other drugs, I have looked up

> > > costs on them, and they are all expensive, but> can> > do at home and not in the> > > hospital?> > > Any information would be greatly appreciated!> God> > Bless, Marla

> > >> > > --> > >> > >> > >> > >> > > ------------ --------- ---------> > > Who's never won? Biggest Grammy Award surprises

> of> > all time on AOL> >> Music.<http://music. aol.com/grammys/ pictures/> never-won- a-grammy? NCID=aolcmp00300 000002548>

> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer (AT) marykay (DOT) com

> > www.marykay. com/mbramer> > > > ____________ _________ _________ _________ _________> _________ _> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs

> > > > > > > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now.

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-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer