Hi

[Guest guest]

---, that is so great!!! only a few more days--i am so excited

for you. wish it was me already, but my day is coming. maybe i will

talk to you on the chat on sunday, if not, have a great surgery & i

will hear from you when you get out on the other side. who is your

angel, so I can watch for the post? Take good care.

ogretta

pre-op & ready to go

may 11, 2001

dr inabnet

In duodenalswitch@y..., " " wrote:

> Not to butt in but we got a hotel for a week in Fairfax for $40 a

> night through priceline.com. The hotel is a 2 star hotel, so it

> isn't the Ritz Carlton, but I think it will be ok. They have a

> recliner in the room that turns into a bed too. (For those of you

> who prefer to sleep sitting up after the surgery.) My surgery with

> Dr. E is April 12th. Pre-tested, pre-insured and ready to go!

>

>

> BMI42

> w/co-morbids

> surgery 4/12/01

> Dr. Elariny

> Trigon BC/BS Key Advantage

[Guest guest]

Hello I have 2 children with RSS and I know they would love to talk to you.

They are 17 and 15. 17 is a girl and the 15 year old is a boy. Email me at

minschluv@....

[Guest guest]

Welcome back Theresa. Good to see you here with us again! Debbietiodaat@... wrote: Hey Kid, I see you came back! Welcome back. Your knowledge and humor will be good to have back with us. Hugs, Tracie NS Co-owner/moderator

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

[Guest guest]

Hey Rose, thanks for the welcome back, I appreciate it. Unfortunately, Sarcoid has taken a hard turn on me, and I'm waiting for Feburary 6th where I'll have a biopsy of granulomas under my skin, if the prove to be sarcoid, I will be placed on Remicade or Cytoxan. So I'm still fighting with doctors and trying to inform them of current treatments, and what is acceptable for me and what's not.. lol, I think I'm loosing the battle here in Nashville.

Hugz.

-- Re: Hi

Hey, girlfriend! I'm glad to see you back. I hope you are feeling "weller" and still singing.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Hi Date: Tue, 24 Jan 2006 11:45:33 -0800 (PST)

Welcome back Theresa. Good to see you here with us again! Debbietiodaat@... wrote: Hey Kid,I see you came back! Welcome back. Your knowledge and humor will be good to have back with us.Hugs,TracieNS Co-owner/moderator

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Here's wishing you all a great day tomorrow!!!!!!!!

May it be weller for all of you....

Indulge in some or or or a . Wash it down with some or . Then have a as an extra treat...

Someone in Iowa is thinking about you....

[Guest guest]

Genie... sorry to hear about your car accident and of course I hope you are doing better day by day.

Not good news either that you are having some progression.

If you don't feel like posting read the posts frequently...you'll read something from someone that will be helpful to you too.

I know you are down right now so I send you a hug and a prayer!

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

Hi

Sorry I have not answered any of the posts lately. I just totaled mycar and ended up with a concussion. I also learned that one of mypulmonary nodules is growing. Have not felt like talking to anyonelately. I wish you all well. Genie

[Guest guest]

Thanks Margaret.To: Breathe-Support Sent: Monday, March 2, 2009 7:41:52 PMSubject: Re: Hi

Genie, I am so sorry to hear about your accident. I believe one of the signs of my diseases was falling asleep at the wheel of my car and rolling it. No one else was involved and I didn't have a scratch on me but I now believe it was due to sleep apnea which can add to heart/lung diseases. I had already been diagnosed with pneumonitis, finally went to a sleep lab and was given a c-pap but not examined any further to see if I already had other damage from it. Finally a cardiologist diagnosed PH and sent me to a pulmonologist who then added COPD, PF and heart/lung failure over the last two years. I know how I was in shock from the car accident so maybe you can take yours as a reason to insist on more thorough and complete tests in order for you to

get necessary treatment as early as possible. The sooner you are treated the longer you have for the treatments to work. Do what you need to do to take care of yourself and know that we are all here for you. Have that concussion followed up to see that there are no long term lingering effects.

Margaret

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Monday, March 2, 2009 7:49:27 AMSubject: Re: Hi

Genie... sorry to hear about your car accident and of course I hope you are doing better day by day.

Not good news either that you are having some progression.

If you don't feel like posting read the posts frequently.. .you'll read something from someone that will be helpful to you too.

I know you are down right now so I send you a hug and a prayer!

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

Hi

Sorry I have not answered any of the posts lately. I just totaled mycar and ended up with a concussion. I also learned that one of mypulmonary nodules is growing. Have not felt like talking to anyonelately. I wish you all well. Genie

[Guest guest]

Thanks Margaret.To: Breathe-Support Sent: Monday, March 2, 2009 7:41:52 PMSubject: Re: Hi

Genie, I am so sorry to hear about your accident. I believe one of the signs of my diseases was falling asleep at the wheel of my car and rolling it. No one else was involved and I didn't have a scratch on me but I now believe it was due to sleep apnea which can add to heart/lung diseases. I had already been diagnosed with pneumonitis, finally went to a sleep lab and was given a c-pap but not examined any further to see if I already had other damage from it. Finally a cardiologist diagnosed PH and sent me to a pulmonologist who then added COPD, PF and heart/lung failure over the last two years. I know how I was in shock from the car accident so maybe you can take yours as a reason to insist on more thorough and complete tests in order for you to

get necessary treatment as early as possible. The sooner you are treated the longer you have for the treatments to work. Do what you need to do to take care of yourself and know that we are all here for you. Have that concussion followed up to see that there are no long term lingering effects.

Margaret

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Monday, March 2, 2009 7:49:27 AMSubject: Re: Hi

Genie... sorry to hear about your car accident and of course I hope you are doing better day by day.

Not good news either that you are having some progression.

If you don't feel like posting read the posts frequently.. .you'll read something from someone that will be helpful to you too.

I know you are down right now so I send you a hug and a prayer!

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

Hi

Sorry I have not answered any of the posts lately. I just totaled mycar and ended up with a concussion. I also learned that one of mypulmonary nodules is growing. Have not felt like talking to anyonelately. I wish you all well. Genie

[Guest guest]

Sorry to disappoint you but I don't have an accent.... YOU do! HA!

My fave accent is Scots......I wanna talk just like Bonnie May!

Well we've been following a similar course of action although you seem way more dedicated than me...I mix my action up a little ... water work, walking, strength traingin at the gym, Tai Chi, housework & gardening! BUT I'm not up to doing big stuff everyday! When I'm at this computer I always jump up when I hear the hourly news bulletin & do somestretching while I listen....apparentlythe action of getting up & down from a chair is a great 'wake-uo' to our body system... especially our muscle tone! How easy is THAT......

I do wonder if you've been overdoing it without the assistance of O2....do you monitor yourself with an Oximeter. I know my Sats have been dropping more .. down into the low-mid 80's with bed-making. They recover after about 5 minutes sit-down but when I'm on a roll I don't always bother to measure OR sit.

'Fess up now... how careful are you with your Sats????

I do suspect that those of us on the Borderline with needing O2 can easily compromise our lung function.

GIO/SGIO

>> Start off with I need to tell you I have a thing for women with accents, I think they are very sexy sounding---my next door neighbor gal is from England and I always ask her questions just so I can listen to her talk. I had the same effect when I was back east (USA), my son played pro baseball in Tennessee, West Virginia, New York and Illinois, I would just stand by the concession stand and listen to the women ask for different types of food-----lovedddddd to hear them talk. Now that I got that out of the way. > I haven't seen my pulmodude for 6 months because I am involved with the Bosentan study and everything I have needed, I have been able to get from the study Dr. and he relays all information to my regular pulmodude. I haven't had any issues that required any attention until about a month ago, I have felt a sudden change in my ability to take a very deep breath, but I just attributed it to the cold weather. When I did the PFTs at the trial study appointment, it showed that it had gone down to 49% but nothing else chanced at all. The study pulmodude was suprised that nothing else change also, but he said it may be because of the high level of activity and exercise that I have been doing. I just went to my regular pulmodude a week after I did the PFTs and he was shocked at how good I looked since I had last seen him. When I became ill(2006), I weighed 288 pounds, but I have been eating better and exercising regularly and am now 239> pounds, hopefully to lose 15 more pounds. I am not on o2 yet but do think I'm not to far away from it. I'm SURE that the weight loss and exercising has probably saved me from the o2 tanks so far and maybe even my life.> I do go down to the athletic center 5 times a week and work out for about 1-1/2 hours and come home take my dog (3 times a day) down to a park and play with him for about an hour. Usually before I get back home I end up talking to 3 or 4 people about things going on in our community,----so all the activity keep me busy but not to tired. Thanks to my wife,--I have been able to live a very stress free life and that has been a tremendous help with this disease.> I would be very interested on how your Dr visit turns out with the 15kg weight loss. I would think it would help, but I have been told there isn't much we can do about the loss in our DLCO readings-----it is what it is---and its gonna do what its gonna do! If anybody knows something different PLEASE share the info.> Hope everything else is good with you and let me know if your DLCO changes?> G. UIP/IPF 5/07 AZ.> >

[Guest guest]

Sorry to disappoint you but I don't have an accent.... YOU do! HA!

My fave accent is Scots......I wanna talk just like Bonnie May!

Well we've been following a similar course of action although you seem way more dedicated than me...I mix my action up a little ... water work, walking, strength traingin at the gym, Tai Chi, housework & gardening! BUT I'm not up to doing big stuff everyday! When I'm at this computer I always jump up when I hear the hourly news bulletin & do somestretching while I listen....apparentlythe action of getting up & down from a chair is a great 'wake-uo' to our body system... especially our muscle tone! How easy is THAT......

I do wonder if you've been overdoing it without the assistance of O2....do you monitor yourself with an Oximeter. I know my Sats have been dropping more .. down into the low-mid 80's with bed-making. They recover after about 5 minutes sit-down but when I'm on a roll I don't always bother to measure OR sit.

'Fess up now... how careful are you with your Sats????

I do suspect that those of us on the Borderline with needing O2 can easily compromise our lung function.

GIO/SGIO

>> Start off with I need to tell you I have a thing for women with accents, I think they are very sexy sounding---my next door neighbor gal is from England and I always ask her questions just so I can listen to her talk. I had the same effect when I was back east (USA), my son played pro baseball in Tennessee, West Virginia, New York and Illinois, I would just stand by the concession stand and listen to the women ask for different types of food-----lovedddddd to hear them talk. Now that I got that out of the way. > I haven't seen my pulmodude for 6 months because I am involved with the Bosentan study and everything I have needed, I have been able to get from the study Dr. and he relays all information to my regular pulmodude. I haven't had any issues that required any attention until about a month ago, I have felt a sudden change in my ability to take a very deep breath, but I just attributed it to the cold weather. When I did the PFTs at the trial study appointment, it showed that it had gone down to 49% but nothing else chanced at all. The study pulmodude was suprised that nothing else change also, but he said it may be because of the high level of activity and exercise that I have been doing. I just went to my regular pulmodude a week after I did the PFTs and he was shocked at how good I looked since I had last seen him. When I became ill(2006), I weighed 288 pounds, but I have been eating better and exercising regularly and am now 239> pounds, hopefully to lose 15 more pounds. I am not on o2 yet but do think I'm not to far away from it. I'm SURE that the weight loss and exercising has probably saved me from the o2 tanks so far and maybe even my life.> I do go down to the athletic center 5 times a week and work out for about 1-1/2 hours and come home take my dog (3 times a day) down to a park and play with him for about an hour. Usually before I get back home I end up talking to 3 or 4 people about things going on in our community,----so all the activity keep me busy but not to tired. Thanks to my wife,--I have been able to live a very stress free life and that has been a tremendous help with this disease.> I would be very interested on how your Dr visit turns out with the 15kg weight loss. I would think it would help, but I have been told there isn't much we can do about the loss in our DLCO readings-----it is what it is---and its gonna do what its gonna do! If anybody knows something different PLEASE share the info.> Hope everything else is good with you and let me know if your DLCO changes?> G. UIP/IPF 5/07 AZ.> >

[Guest guest]

Sorry to disappoint you but I don't have an accent.... YOU do! HA!

My fave accent is Scots......I wanna talk just like Bonnie May!

Well we've been following a similar course of action although you seem way more dedicated than me...I mix my action up a little ... water work, walking, strength traingin at the gym, Tai Chi, housework & gardening! BUT I'm not up to doing big stuff everyday! When I'm at this computer I always jump up when I hear the hourly news bulletin & do somestretching while I listen....apparentlythe action of getting up & down from a chair is a great 'wake-uo' to our body system... especially our muscle tone! How easy is THAT......

I do wonder if you've been overdoing it without the assistance of O2....do you monitor yourself with an Oximeter. I know my Sats have been dropping more .. down into the low-mid 80's with bed-making. They recover after about 5 minutes sit-down but when I'm on a roll I don't always bother to measure OR sit.

'Fess up now... how careful are you with your Sats????

I do suspect that those of us on the Borderline with needing O2 can easily compromise our lung function.

GIO/SGIO

>> Start off with I need to tell you I have a thing for women with accents, I think they are very sexy sounding---my next door neighbor gal is from England and I always ask her questions just so I can listen to her talk. I had the same effect when I was back east (USA), my son played pro baseball in Tennessee, West Virginia, New York and Illinois, I would just stand by the concession stand and listen to the women ask for different types of food-----lovedddddd to hear them talk. Now that I got that out of the way. > I haven't seen my pulmodude for 6 months because I am involved with the Bosentan study and everything I have needed, I have been able to get from the study Dr. and he relays all information to my regular pulmodude. I haven't had any issues that required any attention until about a month ago, I have felt a sudden change in my ability to take a very deep breath, but I just attributed it to the cold weather. When I did the PFTs at the trial study appointment, it showed that it had gone down to 49% but nothing else chanced at all. The study pulmodude was suprised that nothing else change also, but he said it may be because of the high level of activity and exercise that I have been doing. I just went to my regular pulmodude a week after I did the PFTs and he was shocked at how good I looked since I had last seen him. When I became ill(2006), I weighed 288 pounds, but I have been eating better and exercising regularly and am now 239> pounds, hopefully to lose 15 more pounds. I am not on o2 yet but do think I'm not to far away from it. I'm SURE that the weight loss and exercising has probably saved me from the o2 tanks so far and maybe even my life.> I do go down to the athletic center 5 times a week and work out for about 1-1/2 hours and come home take my dog (3 times a day) down to a park and play with him for about an hour. Usually before I get back home I end up talking to 3 or 4 people about things going on in our community,----so all the activity keep me busy but not to tired. Thanks to my wife,--I have been able to live a very stress free life and that has been a tremendous help with this disease.> I would be very interested on how your Dr visit turns out with the 15kg weight loss. I would think it would help, but I have been told there isn't much we can do about the loss in our DLCO readings-----it is what it is---and its gonna do what its gonna do! If anybody knows something different PLEASE share the info.> Hope everything else is good with you and let me know if your DLCO changes?> G. UIP/IPF 5/07 AZ.> >

[Guest guest]

Years ago I was having back problems and went to doctors, got treatment,

pain center, sports rehab, nothing worked. Then someone smart made a

suggestion and that was to use a timer at my desk and once every hour to

take a ten minute break from the desk. Back trouble disappeared quickly.

So, I kept a little timer on my desk for quite a while. Might make sense

for both of us to do by our computers.

>

> Yea, I do the same thing at the computer----stand up and stretch

periodically, it does feel good. Working at the computer seems to be

the hardest thing to do, for me---makes it harder to breathe, so I try

not to spend to much time in front of it, problem is I get carried away

trying to read all the posts and the next thing you know 2 or three

hours has gone by.

>

> I do use my oximeter very religiously when exercising and I also

check it during the day. I am not afraid of getting the o2 when it is

time, but I don't feel the need for it just yet.

> The exercise routine is getting " old " if you know what I mean!!!!! It

would be nice to just kick back, relax and enjoy my retired life, but we

know that ain't gonna happen.

> G. UIP/IPF 5/07 AZ.

>

[Guest guest]

I worked as a computer paraprofessional in an elementary school in Minnesota.

We were teaching young computer users in the early 90's to take a break every 15

minutes to do finger stretches, arm stretches and to get up and move around.

The reason... to help stave off problems with carpel tunnel, eye strain and

general fitness. We actually had the kids doing finger exercises. The

upshot... we should have anyone who uses a computer do this because it promotes

fewer problems with hands as they age. I can type pretty fast even at 60 (65-70

wpm) . . . I can type faster than many younger people because I have always

practiced these exercises. I also played piano as a youth and I think it helped

me develop good habits early on. A break from the computer is a must. Take

care.

Stefani

> >

> > Yea, I do the same thing at the computer----stand up and stretch

> periodically, it does feel good. Working at the computer seems to be

> the hardest thing to do, for me---makes it harder to breathe, so I try

> not to spend to much time in front of it, problem is I get carried away

> trying to read all the posts and the next thing you know 2 or three

> hours has gone by.

> >

> > I do use my oximeter very religiously when exercising and I also

> check it during the day. I am not afraid of getting the o2 when it is

> time, but I don't feel the need for it just yet.

> > The exercise routine is getting " old " if you know what I mean!!!!! It

> would be nice to just kick back, relax and enjoy my retired life, but we

> know that ain't gonna happen.

> > G. UIP/IPF 5/07 AZ.

> >

>

[Guest guest]

Yes I get the 'tired' Routine stuff.. I've been avoiding the Gym bit of my program ... it's not air-conditioned & the heat & humidity make it a 'close' experience even though it is tucked away in the coolest part of the Building it's in (it's the cheapest gym in town & is a no-frills set-up which I generally prefer!)

My favourite place is the Swimming Pool... very low-key too.. ourdoors.. fresh air... beautiful morning air & warmed water....

I find I work best incorporating Ballet & Tai Chi moves into my wandering arounfd the house Routine... throwing a few 'Moves' on my way to make a Cuppa or while waiting for something to cook... or the washing Machine to stop a cycle etc etc

If Google Earth could see inside MY house they'd have to pay for the entertainment value of watching this Loon at her Daily Games!

SGIO>> Yea, I do the same thing at the computer----stand up and stretch periodically, it does feel good. Working at the computer seems to be the hardest thing to do, for me---makes it harder to breathe, so I try not to spend to much time in front of it, problem is I get carried away trying to read all the posts and the next thing you know 2 or three hours has gone by.> > I do use my oximeter very religiously when exercising and I also check it during the day. I am not afraid of getting the o2 when it is time, but I don't feel the need for it just yet.> The exercise routine is getting "old" if you know what I mean!!!!! It would be nice to just kick back, relax and enjoy my retired life, but we know that ain't gonna happen.> G. UIP/IPF 5/07 AZ.>

[Guest guest]

Hey all of those out there that dislike exercise... My mom turned 91 this last

February. She is a dyed in the wool Jack LaLaine follower. She doesn't

exercise anywhere but at home. She gets up every morning and stretches against

the door frame. Left side then right, bend left, then right. Bend forward.

She uses soup cans for weights and keeps her arms in shape. She has done this

as long as I can remember. She stretches every night before going to bed. When

Jack LaLaine had the TV show she would exercise with him every day (half hour).

Facial exercises and chair exercises. Nothing too strenuous, but activity

none-the-less. The exercise gurus say that even in 10-15 minute segments about

30-60 minutes total a day is good. Just to keep everything moving easily. I do

the 'ballet' throughout my house as well. I get close to the sofa or stair

railing and I am lifting each leg and rotating it around. I am up on my toes

and squatting all of the time. I don't do anything that hurts a lot... I

usually do the stretch until it feels refreshing. I do chest expansions with

soup cans as I figure it can't hurt. With this PF diagnosis, I fear my mother

may outlive me. She has an older sister who is 97 and her other 3 sisters were

mid-90s when they passed away. AND all of them were heavy smokers and drinkers

in their day. Makes you wonder.

Take Care, and keep moving

Stefani

> >

> > Yea, I do the same thing at the computer----stand up and stretch

> periodically, it does feel good. Working at the computer seems to be

> the hardest thing to do, for me---makes it harder to breathe, so I try

> not to spend to much time in front of it, problem is I get carried away

> trying to read all the posts and the next thing you know 2 or three

> hours has gone by.

> >

> > I do use my oximeter very religiously when exercising and I also

> check it during the day. I am not afraid of getting the o2 when it is

> time, but I don't feel the need for it just yet.

> > The exercise routine is getting " old " if you know what I mean!!!!! It

> would be nice to just kick back, relax and enjoy my retired life, but we

> know that ain't gonna happen.

> > G. UIP/IPF 5/07 AZ.

> >

>

[Guest guest]

INSPIRATIONAL.....

What a great Role Model....

GIO> > >> > > Yea, I do the same thing at the computer----stand up and stretch> > periodically, it does feel good. Working at the computer seems to be> > the hardest thing to do, for me---makes it harder to breathe, so I try> > not to spend to much time in front of it, problem is I get carried away> > trying to read all the posts and the next thing you know 2 or three> > hours has gone by.> > >> > > I do use my oximeter very religiously when exercising and I also> > check it during the day. I am not afraid of getting the o2 when it is> > time, but I don't feel the need for it just yet.> > > The exercise routine is getting "old" if you know what I mean!!!!! It> > would be nice to just kick back, relax and enjoy my retired life, but we> > know that ain't gonna happen.> > > G. UIP/IPF 5/07 AZ.> > >> >>