[Guest guest]

,

Could you please email me a picture of your legs? I have never seen sarcoid of

the skin. Thanks.

Terri

>

> I have skin sarcoid, and they start as you described. They do look like spider

bites and then they develop pus under them.

>

> I sent a picture of my sarc on my legs a while back. It was a very gross

looking picture. Not sure if you saw it or not.

>

> I did have my spots biopsied and it did come back sarcoid. YAHOOOOOO!!! How

exciting huh??? oh mylanta..... Sorry I do have a very warped sense of humor....

>

> If you would like me to resend those pics let me know. I did tell someone they

could put them on the website under skin sarc, but they are not there yet. Oh

well, such is life in the big city.

>

> Oh my spots are very painful. Like if someone touches or bumps into my legs I

wanna about go through the roof.........

>

> Take care, i hope this has helped somewhat.

>

> from Iowa'

>

[Guest guest]

Hey lady,

How are you doing? I was just reading your post--it's good to see the history of your illness. What an ordeal.

so the Plaquenil and Imuran aren't working any longer, so they really do need to fight to get you on the Remicade. If I'm recalling --didn't you just get a denial on that from the insurance?

Both Dr. Baughman and Dr. Sharma have multiple articles on Remicade and multi-system sarc. If you can do a search with Om Sharma, MD and Remicade (inflixamab) you'll get a bunch of hits. These articles are great support when it comes to the appeal. Do that for Dr. B also. Print them out and give them to your MD.

Hang in there, we'll continue to help where we can,

Hugs,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi

,

I have the craziest

question to ask you, but it’s been on my mind for quite a while. How long have you been a group

member? Every time I see your name

the same thought comes to mind…..did your son love and collect keys when

he was younger? I probably am

completely off the wall and it was someone else, but for some reason I keep thinking

it was your son.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

Sorry not me. My son just turned 21 a few weeks ago and next month my daughter turns 17. I only joined the group about the time my husband first went into the hospital in dec 2006 so I wasn't on here very long when I lost him but I did learn a few things that helped us in that short time. __________________________________________________

[Guest guest]

I would like to thank all of you who posted notes in my husbands guestbook on legacy.com. Your sentiments are greatly appreciated. Hettinger __________________________________________________

[Guest guest]

Maybe check if posts are being accidentally sent to spam

Ian

I'm having problems receiving e-mail posts from your site and was wondering how I could change it back to where I could receive your posts .Thank you mfisher@... Also be advised that I did in fact just change servers. So maybe there is glitch in the settings.

-- Ian Cribb P.Eng.

[Guest guest]

Maybe check if posts are being accidentally sent to spam

Ian

I'm having problems receiving e-mail posts from your site and was wondering how I could change it back to where I could receive your posts .Thank you mfisher@... Also be advised that I did in fact just change servers. So maybe there is glitch in the settings.

-- Ian Cribb P.Eng.

[Guest guest]

Thanx ...........CT on Monday showed no advancement of the IPF and no recurrence of cancer........YA-HOOOOOOOOO. The pulmodude can't explain why my O2 needs have increased.........he says...and I quote......."some patient's disease advances and gets worse and they don't feel any worse, whereas, some, like you, are the opposite." My response.............."what???" I never got a satisfactory answer.........I've changed pulmodudes !! but can't be seen until June.

Carpal Tunnel...........I had both done, not at the same time. Instant relief !!! The key is proper diagnosis........they sent me to a physiatrist........yup, I'd never heard of such. An MD that specializes in this sort of thing. Basically he hooked me up to a machine, stuck a needle into a nerve between my shoulder and spine.....then with another needle he worked his way down my arm clear to my fingertips. The machine measures the amount of time it takes for a pulse to get from one needle to the other. There are WNL (within normal limits) times for the travel. If the times exceed the limit it means there is something blocking the nerve. 'Voila........carpal tunnel. The needles are so tiny that I didn't know he was sticking me until he got to my arm where I could see the needle. It was actually fascinating....he'd show me on the machine the times it took the signal to travel, tell me ahead of time, "okay, this should take 0.025 of a second, or

whatever. They can pinpoint to location of the obstruction down to "the" spot. When I came out of there I was absolutely certain of the diagnosis. That was 7-8 years ago.........still okay. My symptoms came on fast (6-7 weeks) to the point that I could hardly use my hands. I wanted both done but the surgeon would not do it. I hope you can find some relief, I still remember......was very unpleasant!!

Now........I'm in Anchorage, they have a fresh foot and a half of snow......absolute chaos......people don't know how to drive.......that's right.....living here and don't know how. We in the Bush usually believe that the 250,000 people living in Anc don't even know they are in Alaska......like they're only a wee bit north of Seattle. So, Eva and I have decided that we'd sure rather be there, in NSW........warm (hot?), fresh fruit and veges, flowers, warm water, best of friends, Toohey's Old, Toohey's Old..........oh, did I mention Toohey's Old ?? But it's not in the cards.........maybe we'll ask Santa.........if he doesn't get killed in Anc traffic.

jim IPF 05

alaska

Subject: Alaskan JimTo: Breathe-Support Date: Monday, December 1, 2008, 3:50 PM

All the best for all your appointments AJ... man do I HATE going to the Dentist, even thought it's usually only for a check n' clean... Hate, Hate , HATE it! I want your drugs pretty please...... .

Can I ask you about your Carpal Tunnel Surgery... I've suspected I've had that for years & have just been forced to acknowledge it (numb hands/ arms at night) & confirmed by nerve conduction tests. Of course the recommendation is bi-lateral surgery BUT I'm wary!

The numb hands thing is also possibly being caused by compressed nerves in my neck due to confirmed osteoarthritis present there. I'm currently having psyio for that in the hope that it shows an improvment. ( Had a dirty great truck run up the back of my little 2-door sedan years ago... OUCH!)

If it is my neck causing the numbness & NOT the Carpal Tunnel is it worth the risks & hassle to have it done. My grip & ability to open lids etc has always been hopeless BUT would that get better anyway?????

What was your experience?? ??

Write to me privately so the Board doesn't get fed up with this topic!

If anyone else has had this surgery on the Board I'd appreciate you feedback too!

Cheers,

in Oz

> > Date: Saturday, November 29, 2008, 2:00 PM> > > > > > > > > > > > i compare it to my toothache-- around the time of the listing recommendation, i had a toothache, the dentist suggested root canal, and i immediately went for it-- no more toothache, what a relief!!!>

>

[Guest guest]

Jim ... I am SO glad to read about your clean CT scans! Oh Glory BE and Yahooooo is right. Hugs to you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Alaskan JimTo: Breathe-Support Date: Monday, December 1, 2008, 3:50 PM

All the best for all your appointments AJ... man do I HATE going to the Dentist, even thought it's usually only for a check n' clean... Hate, Hate , HATE it! I want your drugs pretty please...... .

Can I ask you about your Carpal Tunnel Surgery... I've suspected I've had that for years & have just been forced to acknowledge it (numb hands/ arms at night) & confirmed by nerve conduction tests. Of course the recommendation is bi-lateral surgery BUT I'm wary!

The numb hands thing is also possibly being caused by compressed nerves in my neck due to confirmed osteoarthritis present there. I'm currently having psyio for that in the hope that it shows an improvment. ( Had a dirty great truck run up the back of my little 2-door sedan years ago... OUCH!)

If it is my neck causing the numbness & NOT the Carpal Tunnel is it worth the risks & hassle to have it done. My grip & ability to open lids etc has always been hopeless BUT would that get better anyway?????

What was your experience?? ??

Write to me privately so the Board doesn't get fed up with this topic!

If anyone else has had this surgery on the Board I'd appreciate you feedback too!

Cheers,

in Oz

> > Date: Saturday, November 29, 2008, 2:00 PM> > > > > > > > > > > > i compare it to my toothache-- around the time of the listing recommendation, i had a toothache, the dentist suggested root canal, and i immediately went for it-- no more toothache, what a relief!!!> >

[Guest guest]

Jim ... I am SO glad to read about your clean CT scans! Oh Glory BE and Yahooooo is right. Hugs to you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Alaskan JimTo: Breathe-Support Date: Monday, December 1, 2008, 3:50 PM

All the best for all your appointments AJ... man do I HATE going to the Dentist, even thought it's usually only for a check n' clean... Hate, Hate , HATE it! I want your drugs pretty please...... .

Can I ask you about your Carpal Tunnel Surgery... I've suspected I've had that for years & have just been forced to acknowledge it (numb hands/ arms at night) & confirmed by nerve conduction tests. Of course the recommendation is bi-lateral surgery BUT I'm wary!

The numb hands thing is also possibly being caused by compressed nerves in my neck due to confirmed osteoarthritis present there. I'm currently having psyio for that in the hope that it shows an improvment. ( Had a dirty great truck run up the back of my little 2-door sedan years ago... OUCH!)

If it is my neck causing the numbness & NOT the Carpal Tunnel is it worth the risks & hassle to have it done. My grip & ability to open lids etc has always been hopeless BUT would that get better anyway?????

What was your experience?? ??

Write to me privately so the Board doesn't get fed up with this topic!

If anyone else has had this surgery on the Board I'd appreciate you feedback too!

Cheers,

in Oz

> > Date: Saturday, November 29, 2008, 2:00 PM> > > > > > > > > > > > i compare it to my toothache-- around the time of the listing recommendation, i had a toothache, the dentist suggested root canal, and i immediately went for it-- no more toothache, what a relief!!!> >

[Guest guest]

Jim ... I am SO glad to read about your clean CT scans! Oh Glory BE and Yahooooo is right. Hugs to you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Alaskan JimTo: Breathe-Support Date: Monday, December 1, 2008, 3:50 PM

All the best for all your appointments AJ... man do I HATE going to the Dentist, even thought it's usually only for a check n' clean... Hate, Hate , HATE it! I want your drugs pretty please...... .

Can I ask you about your Carpal Tunnel Surgery... I've suspected I've had that for years & have just been forced to acknowledge it (numb hands/ arms at night) & confirmed by nerve conduction tests. Of course the recommendation is bi-lateral surgery BUT I'm wary!

The numb hands thing is also possibly being caused by compressed nerves in my neck due to confirmed osteoarthritis present there. I'm currently having psyio for that in the hope that it shows an improvment. ( Had a dirty great truck run up the back of my little 2-door sedan years ago... OUCH!)

If it is my neck causing the numbness & NOT the Carpal Tunnel is it worth the risks & hassle to have it done. My grip & ability to open lids etc has always been hopeless BUT would that get better anyway?????

What was your experience?? ??

Write to me privately so the Board doesn't get fed up with this topic!

If anyone else has had this surgery on the Board I'd appreciate you feedback too!

Cheers,

in Oz

> > Date: Saturday, November 29, 2008, 2:00 PM> > > > > > > > > > > > i compare it to my toothache-- around the time of the listing recommendation, i had a toothache, the dentist suggested root canal, and i immediately went for it-- no more toothache, what a relief!!!> >

[Guest guest]

Hi , Jump in. Everything and anything is the right thing to ask. We're here. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 

[Guest guest]

Hi , anything you want to ask just hit

the reply button type and send. Anyone can answer and anyone can agree to

disagree. Just a bigger and happier family now that we found that there is help

out there . My Dx is very mush like yours, still up in the air. For me that almost

as bad as knowing. Good luck & ask away. Bob –York, PA

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Lainfiesta

Sent: Saturday, December 06, 2008

10:26 PM

To: Breathe-Support

Subject: Re:

Alyce

Beth (and group),

I am not really sure how to participate. Do I just jump in? The information

that you all share is amazing, much more than I have been able to obtain from

other sources, including the docs. Please advise, as I am not sure of protocol.

Thanks,

NSIP or IPF, still up in the air.

> From: Beth <mbmurtha (AT) yahoo (DOT) com>

> Subject: Re: Alyce

> To: Breathe-Support

> Date: Saturday, December 6, 2008, 9:18 PM

> Peggy,

> She hasn't joined yet. I sent the invitation to her a

> couple of hours ago. Do you know if she's received it?

>

> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> " Maybe Christmas, " he thought, " doesn't

> come from a store. Maybe Christmas... perhaps... means a

> little bit more. "

> Dr. Seuss

>

>

>

>

> ________________________________

> From: Peggy <pac17734747 (AT) yahoo (DOT) com>

> To: Breathe-Support

> Sent: Saturday, December 6, 2008 8:53:08 PM

> Subject: Alyce

>

>

> Hi Alyce, I do hope you have found the messages. you can

> reply to this

> message or post a new one.

>

> Group, I am trying to help a lady friend of mine to get

> into our group.

> Her name is Alyce. I am hoping she finds us..

>

> Peggy

[Guest guest]

Hi ... yes, you just jump in like you did. Someone here will give you any help you need.

Beth is our moderator and she is very good to respond.

Sorry to hear about your IPF (NSIP is only one of the more then 200 kinds of PF).

You are in the best place you can be however. You've already seen the help we are to each other.

Tell us in what state you live, your age, how long ago were you dx (diagnosed) and how... Do you have family for support??That will get you started!

I was dx 3-06 with IPF. Have been fairly stable since, except for becoming more SOB (short of breath). I do use O2.

Anyway, welcome.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Alyce> > > Hi Alyce, I do hope you have found the messages. you can> reply to this> message or post a new one. > > Group, I am trying to help a lady friend of mine to get> into our group.> Her name is Alyce. I am hoping she finds us..> > Peggy

[Guest guest]

he says...and I quote....... " some patient's disease advances and gets worse and they don't feel any worse, whereas, some, like you, are the opposite. "

As my son the pilot would say: " Whiskey Tango Foxtrot?!? " Wow. Sounds like pulmodude has a penchant for non-clarity.jon--

Two wrongs don't make a right,but two 's make an airplane.

[Guest guest]

... I too sweat during the day and can't explain why. IPF? Meds? I hate it! I sweat enough to drip down onto my shoulders from my hair/face!

If YOU find a reason be sure and share it.

I too have that exhaustion, that 'lead' feeling. Not as severe as you describe but I sure relate to you.

It's a BIG TIME job being single w/kids (been there done that) and your mother AND a job! My goodness, no wonder you're exhausted!

I'm glad you have a job where you can use the o2. How do you manage that??

Sure you're scared, we all are but IPF is no longer foremost in my mind every minute. Believe me, it does get easier to deal with.

God Bless and keep on keepin' on.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Alyce> > >> > >> > > Hi Alyce, I do hope you have found the messages. you can> > > reply to this> > > message or post a new one.> > >> > > Group, I am trying to help a lady friend of mine to get> > > into our group.> > > Her name is Alyce. I am hoping she finds us..> > >> > > Peggy> >>

[Guest guest]

I live in Garner, North Carolina. I am 52 yrs old, single with 3 children, (2

at home), caregiver to my mother, working full time. Going to Duke for

treatment. Actually, have an appointment tomorrow the 9th. On o2 at 2 liters

currently. dx is currently still in the air. although I think leaning towards

NSIP with an autoimmune disease component and a connective tissue side, per doc.

Sounds like a catch all umbrella for any and everything.!

>

> >

> > Subject: Re: Alyce

> > To: Breathe-Support

> > Date: Saturday, December 6, 2008, 9:18 PM

> > Peggy,

> > She hasn't joined yet. I sent the invitation to

> her a

> > couple of hours ago. Do you know if she's

> received it?

> >

> > Beth in North Carolina

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> > " Maybe Christmas, " he thought,

> " doesn't

> > come from a store. Maybe Christmas... perhaps...

> means a

> > little bit more. "

> > Dr. Seuss

> >

> >

> >

> >

> > ________________________________

> >

> > To: Breathe-Support

> > Sent: Saturday, December 6, 2008 8:53:08 PM

> > Subject: Alyce

> >

> >

> > Hi Alyce, I do hope you have found the messages. you

> can

> > reply to this

> > message or post a new one.

> >

> > Group, I am trying to help a lady friend of mine to

> get

> > into our group.

> > Her name is Alyce. I am hoping she finds us..

> >

> > Peggy

[Guest guest]

How do I manage at work with o2? well. honestly, I am definitely

noticeable..silly wheels squeal, so everyone knows where I am. No element of

surprise any more;). Add to that, I usually arrive gasping for air, and

crashing into walls and corners (thank goodness I did not need to take a drivers

test to maneuver this thing, I would have failed!) I usually have to take 2

large tanks in the car, and one emergency smaller back up, just in case. I

waltz in with one and 5 hours later go to car and switch them out.

I HATE the sweating. I look like something the cat tried to drown. And I swear

if one more idiot asks if it is menopause I think that I will become deranged

and take them out! And that of course would only confirm their opinion that it

must be hormonal.

I also have been getting dizzy and my vision has been really burry, is that

something with this disease?

Later,

dx 08 still pending

>

> Subject: Re: Re:

> To: Breathe-Support

> Date: Monday, December 8, 2008, 12:14 PM

> ... I too sweat during the day and can't

> explain why. IPF? Meds? I hate it! I sweat enough to drip

> down onto my shoulders from my hair/face!

> If YOU find a reason be sure and share it.

> I too have that exhaustion, that 'lead' feeling.

> Not as severe as you describe but I sure relate to you.

> It's a BIG TIME job being single w/kids (been there

> done that) and your mother AND a job! My goodness, no wonder

> you're exhausted!

> I'm glad you have a job where you can use the o2. How

> do you manage that??

> Sure you're scared, we all are but IPF is no longer

> foremost in my mind every minute. Believe me, it does get

> easier to deal with.

> God Bless and keep on keepin' on.

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> Alyce

> > > >

> > > >

> > > > Hi Alyce, I do hope you have found the

> messages. you can

> > > > reply to this

> > > > message or post a new one.

> > > >

> > > > Group, I am trying to help a lady friend

> of mine to get

> > > > into our group.

> > > > Her name is Alyce. I am hoping she finds

> us..

> > > >

> > > > Peggy

> > >

> >

[Guest guest]

ask your doctor about the dizzyness and blurry vision

it might be the disease or it might be the medication

i once asked the doc about a few things and she said they were due to prednisone

the opthamologist needs to check your eyes on a regular basis for changes that the prednisone might do

in the beginning, he saw me several times a year, now it's every six months

Pink Joyce IPF 3/06 Pennsylvania

Donate Life> From: Sher Bauman <bofus (AT) wbcable (DOT) net>> Subject: Re: Re: > To: Breathe-Support@ yahoogroups. com> Date: Monday, December 8, 2008, 12:14 PM> ... I too sweat during the day and can't> explain why. IPF? Meds? I hate it! I sweat enough to drip> down onto my shoulders from my hair/face!> If YOU find a reason be sure and share it.> I too have that exhaustion, that 'lead' feeling.> Not as severe as you describe but I sure relate to you.> It's a BIG TIME job being single w/kids (been there> done that) and your mother AND a job! My goodness, no wonder> you're

exhausted!> I'm glad you have a job where you can use the o2. How> do you manage that??> Sure you're scared, we all are but IPF is no longer> foremost in my mind every minute. Believe me, it does get> easier to deal with.> God Bless and keep on keepin' on.> > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> >

Alyce> > > >> > > >> > > > Hi Alyce, I do hope you have found the> messages. you can> > > > reply to this> > > > message or post a new one.> > > >> > > > Group, I am trying to help a lady friend> of mine to get> > > > into our group.> > > > Her name is Alyce. I am hoping she finds> us..> > > >> > > > Peggy> > >> >

[Guest guest]

Thanks! I just thought I'd share a little. BPeggy wrote: Barb, Love the new pictures..Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet,when our wings have trouble remembering how to fly."Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do

not give up. Galatians 6:9

[Guest guest]



Peggy... you and have a wonderful trip, as I know you will.

You know our saying, "Take pictures" lol.

I'm so grateful you feel better and are anxious to hit the road!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Hi Air Family, What a really good Christmas this has been. Heavy hearted without some of the grands but we have had a good time. There is a family down the road that have 4 boys and we had them here to eat today and oh were those little boys happy. We sent all the left overs home with them. Tomorrow we start it all over again. Oh what a weighty week-end this will be. �LOL

and I went to the gro. today then to get her hair cut. We were gone for about three hours or so. What a good time I had. When we got home had the Motor home here. I was so excited. It is so cute. plenty big.

I'll post a picture tomorrow. I am ready to go. Ray's vacation has just started and I am ready to go SOMEWHERE..

ANYWHERE,, lol �I am still not sure where all we are going other that Laurel Ms.

Have a Great rest of the Week-End. God Bless each and every one of you.

Kerry honey, we are here waiting and will always be here for you.

Love & Prayers, Peggy

Florida, �IPF/UIP 2004

"I believe that friends are quiet angels�who lift us to our feet,�

when our wings�have trouble remembering how to fly."�

[Guest guest]

That RV sure looks snazzy Peggy. What fun you will have.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Bills getting a speeding ticket.. LOL so silly

Our Mobil home for a week or so.

..My get the mail buggy...

[Guest guest]

That RV sure looks snazzy Peggy. What fun you will have.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Bills getting a speeding ticket.. LOL so silly

Our Mobil home for a week or so.

..My get the mail buggy...

[Guest guest]

That RV sure looks snazzy Peggy. What fun you will have.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Bills getting a speeding ticket.. LOL so silly

Our Mobil home for a week or so.

..My get the mail buggy...

[Guest guest]

Peggy

i think someone on the board talked about getting one yesterday or today

maybe it was ???

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: To: Breathe-Support Date: Wednesday, January 7, 2009, 5:53 PM

Hi group, Does anyone have an electronic book reader ? They say you can download thousands of books free and read on the go without carrying a book. I would love to get one but would like to know the pros & cons of them. She does so much for me and I would

love to get her one. maybe..lol

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."