Terri, I Understand... Ron

[Guest guest]

Terri,

As I read your post I got really sad, especially how the illness has

impacted your husband too.

I too can see the pain in my love ones eyes. There are times when I

am so emotional that I shake without any control. My whole body just

start shaking from head to toe. And this is when someone will grab

me, (usually my Mom) and just hold me, and cry and pray until the

shaking stops. Sometimes it doesn't stop for a while.

But I share that with you to let you know that I am here and I am

their also. I wet the bed everynight. So don't feel bad. My sheets

are changed so much til its depressing watching my mother, brother,

nephew and sister in law changing my linen. I just sit there and

watch.

I do not have seizures, but I imagine they can be very exhausting.

You will be in my prayers my dear one. And thats a fact jack!

Love you and I do understand what you are going through.

Brother

>

> Hello Everyone,

>

> This is the other Terrie () I'm still here. The Sarcoidosis

has been

> kicking my body bad. I have the VNA & Meals on wheels to help me

now. My

> motorized wheelchair and hospital bed are real life savers. The

meds aren't

> working again so they're planning on keeping the Steroids, Cellcept

and

> Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

The Imuran,

> Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

I've never

> had a remission since my diagnosis in December 1998. For those who

have had

> a remission do you still have to take the meds? I've been on

steroids for 6

> ½ years and unable to get off, every time they start to lower the

dose the

> Sarcoidosis flares real bad. Enough of my babbling on.

>

> I've tried to get into chat but the Sarcoidosis brain caused me

to be

> unable to figure it out. If I'm awake at the next chat time I'll

try again.

> I don't post very often but I try to read all the emails. My best

wishes to

> all of you and hope for a pain free day. Those who are still able

to work

> pace your self and good luck. Before I ended up in the wheelchair

due to my

> bone Sarcoidosis in my hip & knees I was a Nurse for over 25

years. I

> really miss working and being independent. When I have a bad

seizure and wet

> the bed, I'm at my lowest because my husband has to change it. It's

hard for

> him to deal with, he has said to the MD's the hardest thing is

watching

> someone you love dying in front of you and your unable to do

anything.

> Today's a hard day for me; I've been crying and feeling down. But

enough of

> my pity party. Take Care everyone and I'll try to post more often.

Love to

> all Terrie

>

>

>

> PS Congrats on your upcoming Marriage , I'm very happy for

you

>

>

>

>

>

>

>

> Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat

rooms? How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know

you've been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you?

How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome. You've

found a

> place to ask questions, get some support and let out some

frustration or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back

after my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at

us.

> WE'll get to them within a day or so. We are still here for all

of you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

[Guest guest]

Hello

Ron, 

Thanks so much for your kind words. I had tears when reading your post;

it means so much to have you share what you are going through and all of my Sarcoidosis

friends on line. People always are saying I know so and so and they have Sarcoid

and they aren’t sick like you. Or they have a friend who is working with Sarcoid,

etc. But I got so sick so fast it seems like I went from healthy to sick over

night. I was 130 pounds and a marathon runner & now about 250 approx since

I can’t stand any more.  It’s a really hard place to be in.

I’m so dependent on everyone and it scares me. I’ve

always been really close to my parents & brother and they come down to help

my husband so he can go to work. But my parents are getting older and it’s

getting too hard for them and their own health is failing. So I know how lucky

I am but bad days like yesterday when I can’t breathe make positive

thinking hard.

When I find my pictures I post them. Thanks for being there and may

your day be pain free and my thoughts are with you. Love Terrie

Check in time!

>

>

>

> Ok gang,

>

> It's time for roll-call. the list has been quiet lately, and we're

> wondering what's up with everyone. Have ya all gone to the chat

rooms? How

> do you like the chats-- we could use some feedback.

>

> I know that for the last bit, we had a shortage of chat hosts-- to

many of

> us have been to sick or recovering from surgery to be there.

>

> and Rose, hows the carpal tunnel sx healing? Ron, I know

you've been

> going thru some personal stuff-- I do hope you're ok. I saw that

you'll be

> back at the chats now. Thank you. Marla, what is up with you?

How are

> you?

>

> Debbie, Quint, Rose, Connie, it's good to see all of you post.

>

> We are up to 420+ members, and for the " newbies " -- welcome.

You've

found a

> place to ask questions, get some support and let out some

frustration or

> share some joy and laughter.

>

> As for me, I'm finding it takes a few days longer to bounce back

after my

> infusions, and this time I ended up with a whopper of a sinus

infection- so

> it's antibiotic time. Uggg.

>

> Kuwaiti Kim, are you out there? We're worried about you.

>

> Joan, check in my friend, I hope you're doing ok.

>

> To all the others, please if you've got questions, concerns,

whatever----

> let us know. Rose and Debbie and I are holding down the fort until

Darlene

> can be back-- so know that if you do have questions-- fire them at

us.

> WE'll get to them within a day or so. We are still here for all

of you.

>

> With compassion and empathy for all of us,

> Tracie

> NS co-owner/moderator

>

[Guest guest]

Hi Terri, I am no longer able to work. I was a nurse for more than 30 years when I had to quit due to the Sarcoidosis. I have never had a remission but on the other hand I am not as sick as many of the others on this site. I do however have some sort of siezure. The doctor still is not convinced that it is not Myoclonus due to the medication. My PCP thinbks it looks like a siezure. He has actually seen it. You would think the anti siezure medication would take care of those things. Mine is not severe but is getting worse. So far it involves my speech, my dropping things and occasionally falling. I know bad times are coming. I feel so sorry for you that you are having a hard time breathing that is just the worst thing to have to go through . I will pray for you. Take care of yourself, Barb J Terrie & Tarbox wrote: Hello Ron,? Thanks so much for your kind words. I had tears when reading your post; it means so much to have you share what you are going through and all of my Sarcoidosis friends on line. People always are saying I know so and so and they have Sarcoid and they aren’t sick like you. Or they have a friend who is working with Sarcoid, etc. But I got so sick so fast it seems like I went from healthy to sick over night. I was 130 pounds and a marathon runner & now about 250 approx since I can’t stand any more. ?It’s a really

hard place to be in. I’m so dependent on everyone and it scares me. I’ve always been really close to my parents & brother and they come down to help my husband so he can go to work. But my parents are getting older and it’s getting too hard for them and their own health is failing. So I know how lucky I am but bad days like yesterday when I can’t breathe make positive thinking hard. When I find my pictures I post them. Thanks for being there and may your day be pain free and my thoughts are with you. Love Terrie Check in time!> > > > Ok gang,> > It's time for roll-call. the list has been quiet lately, and we're> wondering what's up with everyone. Have ya all gone to the chat rooms? How> do you like the chats-- we could use some feedback.> > I know that for the last bit, we had a shortage of chat hosts-- to many of> us have been to sick or recovering from surgery to be there.> > and Rose, hows the carpal tunnel sx healing? Ron, I know

you've been> going thru some personal stuff-- I do hope you're ok. I saw that you'll be> back at the chats now. Thank you. Marla, what is up with you? How are> you?> > Debbie, Quint, Rose, Connie, it's good to see all of you post. > > We are up to 420+ members, and for the "newbies"-- welcome. You've found a> place to ask questions, get some support and let out some frustration or> share some joy and laughter.> > As for me, I'm finding it takes a few days longer to bounce back after my> infusions, and this time I ended up with a whopper of a sinus infection- so> it's antibiotic time. Uggg. > > Kuwaiti Kim, are you out there? We're worried about you. > > Joan, check in my friend, I hope you're doing ok. > > To all the others, please if you've got questions, concerns, whatever----> let us know. Rose and

Debbie and I are holding down the fort until Darlene> can be back-- so know that if you do have questions-- fire them at us.> WE'll get to them within a day or so. We are still here for all of you.> > With compassion and empathy for all of us,> Tracie> NS co-owner/moderator>

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Hey Barb,

This is the other Terri. What type of speech problems do you have? I

have had speech problems in the past and am starting to have some more

lately when I am really tired.

Thanks.

Terri G.

> >

> > Hello Everyone,

> >

> > This is the other Terrie () I'm still here. The Sarcoidosis

> has been

> > kicking my body bad. I have the VNA & Meals on wheels to help me

> now. My

> > motorized wheelchair and hospital bed are real life savers. The

> meds aren't

> > working again so they're planning on keeping the Steroids, Cellcept

> and

> > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

> The Imuran,

> > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

> I've never

> > had a remission since my diagnosis in December 1998. For those who

> have had

> > a remission do you still have to take the meds? I've been on

> steroids for 6

> > ? years and unable to get off, every time they start to lower the

> dose the

> > Sarcoidosis flares real bad. Enough of my babbling on.

> >

> > I've tried to get into chat but the Sarcoidosis brain caused me

> to be

> > unable to figure it out. If I'm awake at the next chat time I'll

> try again.

> > I don't post very often but I try to read all the emails. My best

> wishes to

> > all of you and hope for a pain free day. Those who are still able

> to work

> > pace your self and good luck. Before I ended up in the wheelchair

> due to my

> > bone Sarcoidosis in my hip & knees I was a Nurse for over 25

> years. I

> > really miss working and being independent. When I have a bad

> seizure and wet

> > the bed, I'm at my lowest because my husband has to change it. It's

> hard for

> > him to deal with, he has said to the MD's the hardest thing is

> watching

> > someone you love dying in front of you and your unable to do

> anything.

> > Today's a hard day for me; I've been crying and feeling down. But

> enough of

> > my pity party. Take Care everyone and I'll try to post more often.

> Love to

> > all Terrie

> >

> >

> >

> > PS Congrats on your upcoming Marriage , I'm very happy for

> you

> >

> >

> >

> >

> >

> >

> >

> > Check in time!

> >

> >

> >

> > Ok gang,

> >

> > It's time for roll-call. the list has been quiet lately, and we're

> > wondering what's up with everyone. Have ya all gone to the chat

> rooms? How

> > do you like the chats-- we could use some feedback.

> >

> > I know that for the last bit, we had a shortage of chat hosts-- to

> many of

> > us have been to sick or recovering from surgery to be there.

> >

> > and Rose, hows the carpal tunnel sx healing? Ron, I know

> you've been

> > going thru some personal stuff-- I do hope you're ok. I saw that

> you'll be

> > back at the chats now. Thank you. Marla, what is up with you?

> How are

> > you?

> >

> > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> >

> > We are up to 420+ members, and for the " newbies " -- welcome. You've

> found a

> > place to ask questions, get some support and let out some

> frustration or

> > share some joy and laughter.

> >

> > As for me, I'm finding it takes a few days longer to bounce back

> after my

> > infusions, and this time I ended up with a whopper of a sinus

> infection- so

> > it's antibiotic time. Uggg.

> >

> > Kuwaiti Kim, are you out there? We're worried about you.

> >

> > Joan, check in my friend, I hope you're doing ok.

> >

> > To all the others, please if you've got questions, concerns,

> whatever----

> > let us know. Rose and Debbie and I are holding down the fort until

> Darlene

> > can be back-- so know that if you do have questions-- fire them at

> us.

> > WE'll get to them within a day or so. We are still here for all

> of you.

> >

> > With compassion and empathy for all of us,

> > Tracie

> > NS co-owner/moderator

> >

>

>

>

>

>

>

>

>

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

> Stay in the know. Pulse on the new Yahoo.com. Check it out.

>

[Guest guest]

Other Terri, I know you were addressing Barb but what happened to me was knowing what I wanted to say and couldn't get it out. Like I know what a hammer is and I could be looking at one but couldn't say the word. The other thing was looking at a word like "somebody" but when I would try to say it, it would come out so.....mebo....dy. Hi guys, I haven't had access to a computer for a while. I know, I know, grief it's back////Lots of hugs, Conniemosaicgirl1 wrote: Hey Barb,This is the other Terri. What type of speech problems do you have? Ihave had speech problems in the past and am starting to have some morelately when I am really tired.Thanks.Terri G.> >> > Hello Everyone,> >> > This is the other Terrie () I'm still here. The Sarcoidosis> has been> > kicking my body bad. I have the VNA & Meals on wheels to help me> now. My> > motorized wheelchair and hospital bed are real life savers. The> meds aren't> > working again so they're planning on keeping the Steroids, Cellcept> and> > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.> The

Imuran,> > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.> I've never> > had a remission since my diagnosis in December 1998. For those who> have had> > a remission do you still have to take the meds? I've been on> steroids for 6> > ? years and unable to get off, every time they start to lower the> dose the> > Sarcoidosis flares real bad. Enough of my babbling on.> >> > I've tried to get into chat but the Sarcoidosis brain caused me> to be> > unable to figure it out. If I'm awake at the next chat time I'll> try again.> > I don't post very often but I try to read all the emails. My best> wishes to> > all of you and hope for a pain free day. Those who are still able> to work> > pace your self and good luck. Before I ended up in the wheelchair> due to my> > bone Sarcoidosis in my

hip & knees I was a Nurse for over 25> years. I> > really miss working and being independent. When I have a bad> seizure and wet> > the bed, I'm at my lowest because my husband has to change it. It's> hard for> > him to deal with, he has said to the MD's the hardest thing is> watching> > someone you love dying in front of you and your unable to do> anything.> > Today's a hard day for me; I've been crying and feeling down. But> enough of> > my pity party. Take Care everyone and I'll try to post more often.> Love to> > all Terrie> >> >> >> > PS Congrats on your upcoming Marriage , I'm very happy for> you> >> >> >> >> >> >> >> > Check in time!> >> >> >> > Ok gang,> >> > It's time for roll-call. the list has been quiet lately, and we're> > wondering what's up with everyone. Have ya all gone to the chat> rooms? How> > do you like the chats-- we could use some feedback.> >> > I know that for the last bit, we had a shortage of chat hosts-- to> many of> > us have been to sick or recovering from surgery to be there.> >>

> and Rose, hows the carpal tunnel sx healing? Ron, I know> you've been> > going thru some personal stuff-- I do hope you're ok. I saw that> you'll be> > back at the chats now. Thank you. Marla, what is up with you?> How are> > you?> >> > Debbie, Quint, Rose, Connie, it's good to see all of you post.> >> > We are up to 420+ members, and for the "newbies"-- welcome. You've> found a> > place to ask questions, get some support and let out some> frustration or> > share some joy and laughter.> >> > As for me, I'm finding it takes a few days longer to bounce back> after my> > infusions, and this time I ended up with a whopper of a sinus> infection- so> > it's antibiotic time. Uggg.> >> > Kuwaiti Kim, are you out there? We're worried about you.> >> >

Joan, check in my friend, I hope you're doing ok.> >> > To all the others, please if you've got questions, concerns,> whatever----> > let us know. Rose and Debbie and I are holding down the fort until> Darlene> > can be back-- so know that if you do have questions-- fire them at> us.> > WE'll get to them within a day or so. We are still here for all> of you.> >> > With compassion and empathy for all of us,> > Tracie> > NS co-owner/moderator> >>>>>>>>>> ---------------------------------> Stay in the know. Pulse on the new Yahoo.com. Check it out.>

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Connie,

I get weird stuff like that; I might hear a phone ringing, know I need

to do something with it but can't remember what. The other thing I have

had happen is that I might read a word and think it says Monarch but it

is really Spinach. Go figure.

Terri G.

> > >

> > > Hello Everyone,

> > >

> > > This is the other Terrie () I'm still here. The Sarcoidosis

> > has been

> > > kicking my body bad. I have the VNA & Meals on wheels to help me

> > now. My

> > > motorized wheelchair and hospital bed are real life savers. The

> > meds aren't

> > > working again so they're planning on keeping the Steroids,

Cellcept

> > and

> > > Remicade but changing the IV to ever 4 weeks instead of 8 weeks.

> > The Imuran,

> > > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working.

> > I've never

> > > had a remission since my diagnosis in December 1998. For those who

> > have had

> > > a remission do you still have to take the meds? I've been on

> > steroids for 6

> > > ? years and unable to get off, every time they start to lower the

> > dose the

> > > Sarcoidosis flares real bad. Enough of my babbling on.

> > >

> > > I've tried to get into chat but the Sarcoidosis brain caused me

> > to be

> > > unable to figure it out. If I'm awake at the next chat time I'll

> > try again.

> > > I don't post very often but I try to read all the emails. My best

> > wishes to

> > > all of you and hope for a pain free day. Those who are still able

> > to work

> > > pace your self and good luck. Before I ended up in the wheelchair

> > due to my

> > > bone Sarcoidosis in my hip & knees I was a Nurse for over 25

> > years. I

> > > really miss working and being independent. When I have a bad

> > seizure and wet

> > > the bed, I'm at my lowest because my husband has to change it.

It's

> > hard for

> > > him to deal with, he has said to the MD's the hardest thing is

> > watching

> > > someone you love dying in front of you and your unable to do

> > anything.

> > > Today's a hard day for me; I've been crying and feeling down. But

> > enough of

> > > my pity party. Take Care everyone and I'll try to post more often.

> > Love to

> > > all Terrie

> > >

> > >

> > >

> > > PS Congrats on your upcoming Marriage , I'm very happy for

> > you

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Check in time!

> > >

> > >

> > >

> > > Ok gang,

> > >

> > > It's time for roll-call. the list has been quiet lately, and we're

> > > wondering what's up with everyone. Have ya all gone to the chat

> > rooms? How

> > > do you like the chats-- we could use some feedback.

> > >

> > > I know that for the last bit, we had a shortage of chat hosts-- to

> > many of

> > > us have been to sick or recovering from surgery to be there.

> > >

> > > and Rose, hows the carpal tunnel sx healing? Ron, I know

> > you've been

> > > going thru some personal stuff-- I do hope you're ok. I saw that

> > you'll be

> > > back at the chats now. Thank you. Marla, what is up with you?

> > How are

> > > you?

> > >

> > > Debbie, Quint, Rose, Connie, it's good to see all of you post.

> > >

> > > We are up to 420+ members, and for the " newbies " -- welcome. You've

> > found a

> > > place to ask questions, get some support and let out some

> > frustration or

> > > share some joy and laughter.

> > >

> > > As for me, I'm finding it takes a few days longer to bounce back

> > after my

> > > infusions, and this time I ended up with a whopper of a sinus

> > infection- so

> > > it's antibiotic time. Uggg.

> > >

> > > Kuwaiti Kim, are you out there? We're worried about you.

> > >

> > > Joan, check in my friend, I hope you're doing ok.

> > >

> > > To all the others, please if you've got questions, concerns,

> > whatever----

> > > let us know. Rose and Debbie and I are holding down the fort until

> > Darlene

> > > can be back-- so know that if you do have questions-- fire them at

> > us.

> > > WE'll get to them within a day or so. We are still here for all

> > of you.

> > >

> > > With compassion and empathy for all of us,

> > > Tracie

> > > NS co-owner/moderator

> > >

> >

> >

> >

> >

> >

> >

> >

> >

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

> > Stay in the know. Pulse on the new Yahoo.com. Check it out.

> >

>

>

>

>

>

>

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

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

>

[Guest guest]

Terrie and all,I'm so sorry to hear of your struggles. One thing that is especially frightening about this disease is that I never know what is around the corner. I went to the dentist yesterday and had a simple filling (with the short acting anesthetic) but the shots wore off REALLY quick and I ended up feeling everything...not a good feeling. As soon as I got home I noticed my left eye was starting to hurt. It was red and inflamed and aching. So back to the sarcoid affecting my left eye, maybe from the stress of the procedure...next step is to have another 3 teeth removed and then that will complete my dental work so I can begin the Cellcept. That should be Oct 4 (teeth pulled). MY question Terrie is this: how long have you been on the Cellcept, who do you see that prescribes it (or where do you go: what clinic?) and how are your side effects from the Cellcept? I know this is a lot of questions but there's no info out there about cellcept and sarcoid. Best to

all,Becky.oui mosaicgirl1 wrote: Connie, I get weird stuff like that; I might hear a phone ringing, know I need to do something with it but can't remember what. The other thing I have had happen is that I might read a word and think it says Monarch but it is really Spinach. Go figure. Terri G. > > > > > > Hello Everyone, > > > > > > This is the other Terrie () I'm still here. The Sarcoidosis > > has been > > > kicking my body bad. I have the VNA & Meals on wheels to help me > > now. My > > > motorized wheelchair and hospital bed are real life

savers. The > > meds aren't > > > working again so they're planning on keeping the Steroids, Cellcept > > and > > > Remicade but changing the IV to ever 4 weeks instead of 8 weeks. > > The Imuran, > > > Cytoxan (po), Plaqinel, methotrexate etc. haven't been working. > > I've never > > > had a remission since my diagnosis in December 1998. For those who > > have had > > > a remission do you still have to take the meds? I've been on > > steroids for 6 > > > ? years and unable to get off, every time they start to lower the > > dose the > > > Sarcoidosis flares real bad. Enough of my babbling on. > > > > > > I've tried to get into chat but the Sarcoidosis brain caused me > > to be > > > unable to figure it out. If I'm awake at the next chat time I'll > >

try again. > > > I don't post very often but I try to read all the emails. My best > > wishes to > > > all of you and hope for a pain free day. Those who are still able > > to work > > > pace your self and good luck. Before I ended up in the wheelchair > > due to my > > > bone Sarcoidosis in my hip & knees I was a Nurse for over 25 > > years. I > > > really miss working and being independent. When I have a bad > > seizure and wet > > > the bed, I'm at my lowest because my husband has to change it. It's > > hard for > > > him to deal with, he has said to the MD's the hardest thing is > > watching > > > someone you love dying in front of you and your unable to do > > anything. > > > Today's a hard day for me; I've been crying and feeling down. But > > enough

of > > > my pity party. Take Care everyone and I'll try to post more often. > > Love to > > > all Terrie > > > > > > > > > > > > PS Congrats on your upcoming Marriage , I'm very happy for > > you > > > > > > > > > > > > > > > > > > > > > > > > Check

in time! > > > > > > > > > > > > Ok gang, > > > > > > It's time for roll-call. the list has been quiet lately, and we're > > > wondering what's up with everyone. Have ya all gone to the chat > > rooms? How > > > do you like the chats-- we could use some feedback. > > > > > > I know that for the last bit, we had a shortage of chat hosts-- to > > many of > > > us have been to sick or recovering from surgery to be there. > > > > > > and Rose, hows the carpal tunnel sx healing? Ron, I know > > you've been > > > going thru some personal stuff-- I do hope you're ok. I saw that > > you'll be > > > back at the chats now. Thank you. Marla, what is up with you? > > How are > > > you? > > > > > >

Debbie, Quint, Rose, Connie, it's good to see all of you post. > > > > > > We are up to 420+ members, and for the "newbies"-- welcome. You've > > found a > > > place to ask questions, get some support and let out some > > frustration or > > > share some joy and laughter. > > > > > > As for me, I'm finding it takes a few days longer to bounce back > > after my > > > infusions, and this time I ended up with a whopper of a sinus > > infection- so > > > it's antibiotic time. Uggg. > > > > > > Kuwaiti Kim, are you out there? We're worried about you. > > > > > > Joan, check in my friend, I hope you're doing ok. > > > > > > To all the others, please if you've got questions, concerns, > > whatever---- > > > let us know. Rose and Debbie and

I are holding down the fort until > > Darlene > > > can be back-- so know that if you do have questions-- fire them at > > us. > > > WE'll get to them within a day or so. We are still here for all > > of you. > > > > > > With compassion and empathy for all of us, > > > Tracie > > > NS co-owner/moderator > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > Stay in the know. Pulse on the new Yahoo.com. Check it out. > > > > > > > > > --------------------------------- > Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. >

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

Thanks Terri,

For some reason stuff isn't so scary when you find out

your not in the boat alone....Connie

--- mosaicgirl1 mosaicgirl1@...> wrote:

>

> Connie,

>

> I get weird stuff like that; I might hear a phone

> ringing, know I need

> to do something with it but can't remember what.

> The other thing I have

> had happen is that I might read a word and think it

> says Monarch but it

> is really Spinach. Go figure.

>

> Terri G.

>

> > > >

> > > > Hello Everyone,

> > > >

> > > > This is the other Terrie () I'm still

> here. The Sarcoidosis

> > > has been

> > > > kicking my body bad. I have the VNA & Meals on

> wheels to help me

> > > now. My

> > > > motorized wheelchair and hospital bed are real

> life savers. The

> > > meds aren't

> > > > working again so they're planning on keeping

> the Steroids,

> Cellcept

> > > and

> > > > Remicade but changing the IV to ever 4 weeks

> instead of 8 weeks.

> > > The Imuran,

> > > > Cytoxan (po), Plaqinel, methotrexate etc.

> haven't been working.

> > > I've never

> > > > had a remission since my diagnosis in December

> 1998. For those who

> > > have had

> > > > a remission do you still have to take the

> meds? I've been on

> > > steroids for 6

> > > > ? years and unable to get off, every time they

> start to lower the

> > > dose the

> > > > Sarcoidosis flares real bad. Enough of my

> babbling

=== message truncated ===

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[Guest guest]

Terri,

Is Cellcept some kind of replacement for prednisone.

Prednisone gives my body a fit, but I needs what it

does for my breathing, etc.///Connie

--- Mac Tosh macandtosh626@...> wrote:

> Terrie and all,

> I'm so sorry to hear of your struggles. One thing

> that is especially frightening about this disease is

> that I never know what is around the corner. I went

> to the dentist yesterday and had a simple filling

> (with the short acting anesthetic) but the shots

> wore off REALLY quick and I ended up feeling

> everything...not a good feeling. As soon as I got

> home I noticed my left eye was starting to hurt. It

> was red and inflamed and aching. So back to the

> sarcoid affecting my left eye, maybe from the stress

> of the procedure...next step is to have another 3

> teeth removed and then that will complete my dental

> work so I can begin the Cellcept. That should be Oct

> 4 (teeth pulled). MY question Terrie is this: how

> long have you been on the Cellcept, who do you see

> that prescribes it (or where do you go: what

> clinic?) and how are your side effects from the

> Cellcept? I know this is a lot of questions but

> there's no info out there about cellcept and

> sarcoid.

> Best to all,

> Becky

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> .oui

>

> mosaicgirl1 mosaicgirl1@...> wrote:

>

> Connie,

>

> I get weird stuff like that; I might hear a phone

> ringing, know I need

> to do something with it but can't remember what.

> The other thing I have

> had happen is that I might read a word and think it

> says Monarch but it

> is really Spinach. Go figure.

>

> Terri G.

>

> > > Hello Ron,?

> > > Thanks so much for your kind words. I had tears

> when reading your

> > post; it means so much to have you share what you

> are going through

> and

> > all of my Sarcoidosis friends on line. People

> always are saying I know

> > so and so and they have Sarcoid and they aren’t

> sick like you.

> Or

> > they have a friend who is working with Sarcoid,

> etc. But I got so sick

> > so fast it seems like I went from healthy to sick

> over night. I was

> 130

> > pounds and a marathon runner & now about 250

> approx since I

> can’t

> > stand any more. ?It’s a really hard place to be

> in.

> > > I’m so dependent on everyone and it scares

> me. I’ve

> > always been really close to my parents & brother

> and they come down to

> > help my husband so he can go to work. But

> my parents are getting

> > older and it’s getting too hard for them and

> their own health

> is

> > failing. So I know how lucky I am but bad days

> like yesterday when I

> > can’t breathe make positive thinking hard.

> > > When I find my pictures I post them. Thanks for

> being there and may

> > your day be pain free and my thoughts are with

> you. Love Terrie

> > >

> > > Terri, I

> Understand... Ron

> > >

> > > Terri,

> > >

> > > As I read your post I got really sad,

> especially how the illness has

> > > impacted your husband too.

> > >

> > > I too can see the pain in my love ones eyes.

> There are times when I

> > > am so emotional that I shake without any

> control. My whole body just

> > > start shaking from head to toe. And this is

> when someone will grab

> > > me, (usually my Mom) and just hold me, and cry

> and pray until the

> > > shaking stops. Sometimes it doesn't stop for a

> while.

> > >

> > > But I share that with you to let you know that

> I am here and I am

> > > their also. I wet the bed everynight. So don't

> feel bad. My sheets

> > > are changed so much til its depressing watching

> my mother, brother,

> > > nephew and sister in law changing my linen. I

> just sit there and

> > > watch.

> > >

> > > I do not have seizures, but I imagine they can

> be very exhausting.

> > >

> > > You will be in my prayers my dear one. And

> thats a fact jack!

>

=== message truncated ===

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[Guest guest]

Hi,

I've experienced the samer type of problems, wanting to sat something and it comes out something different completely or looking at something and not remembering what's it for.

Viced Pomy

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Terri, I Understand... RonDate: Sat, 28 Oct 2006 13:45:28 -0700 (PDT)

Thanks Terri,For some reason stuff isn't so scary when you find outyour not in the boat alone....Connie--- mosaicgirl1 <mosaicgirl1 (AT) yahoo (DOT) com> wrote:> > Connie,> > I get weird stuff like that; I might hear a phone> ringing, know I need> to do something with it but can't remember what. > The other thing I have> had happen is that I might read a word and think it> says Monarch but it> is really Spinach. Go figure.> > Terri G.> > > > >> > > > Hello Everyone,> > > >> > > > This is the other Terrie () I'm still> here. The Sarcoidosis> > > has been> > > > kicking my body bad. I have the VNA & Meals on> wheels to help me> > > now. My> > > > motorized wheelchair and hospital bed are real> life savers. The> > > meds aren't> > > > working again so they're planning on keeping> the Steroids,> Cellcept> > > and> > > > Remicade but changing the IV to ever 4 weeks> instead of 8 weeks.> > > The Imuran,> > > > Cytoxan (po), Plaqinel, methotrexate etc.> haven't been working.> > > I've never> > > > had a remission since my diagnosis in December> 1998. For those who> > > have had> > > > a remission do you still have to take the> meds? I've been on> > > steroids for 6> > > > ? years and unable to get off, every time they> start to lower the> > > dose the> > > > Sarcoidosis flares real bad. Enough of my> babbling === message truncated ===__________________________________________________________We have the perfect Group for you. Check out the handy changes to Yahoo! Groups (http://groups.yahoo.com)

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