Question

[Guest guest]

MB. Yes, I am concerned about my heart rate as it goes into the 100's when I am just walking around. I do have a rapid heart beat so I am not sure if this is causing it. I also have PVC's To: Breathe-Support Sent: Mon, January 4, 2010 8:08:47 AMSubject: Re: Re: question

,

Yes it does. My resting heart rate is in the low 70's. My heart rate jumps into the high 80's low 90's when I move around at home. When I exercise it moves into the 120's. This would not be normal for someone else but for me it's fine.

When I was diagnosed with the lung disease in 2006 I was also in congestive heart failure. My heart recovered from that but my speedy heart rate is a consequence of that bout of chf.

Are you concerned about your heart rate? Some increase when we are active is to be expected as our hearts try to get oxygen around our bodies. Since our lungs provide a limited amount, our heart tries to compensate by beating faster. That underscores the importance of keeping our sats above 90, to lessen the strain on our heart.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 4, 2010 7:31:47 AMSubject: Re: Re: question

Bruce/MBDoes your heart rate go up when you are up and around?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MBI also use a liter miter but I'm on liquid and have a 75 foot hose andam not experiencing any loss over that distance. However, I should alsomention my hose is one piece, not a 25 and 50 connected by swivelconnector. I'd advise everyone to have a liter miter. Also make sure youkeep a check on your connector from the hose to the cannula. Putting itin water while in use to look for leaks is always good.> >> > MB,> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay upin> the 90's.. Does that mean that I have to raise the level. When sitting> down on

3,2

or nothing the oxygen stays in the high 90's.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 12:45:00 PM> > Subject: Re: question> >> >> > Basically it means that your lungs can't keep up with your bodiesneed> for oxygen when you are exerting yourself. You don't say how low your> sats drop but if they drop below 90 while you are active you should be> using oxygen for exertion. Many of us can maintain resting sats above90> without O2. That's not at all unusual with pulmonary fibrosisespecially> in the early to middle stages of the disease.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis

11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: iltopaint iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 9:56:43 AM> > Subject: question> >> >> > what does it mean when your oxygen level goes down when you areactive> and once you sit down it automatically goes back up into the high90's.> > It happens at pulmonary rehab and the pt doesn't say why.> >> >> > __.._,_.___> > Reply to sender | Reply to group Messages in this topic (84)> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1> > Visit Your Group Start a New Topic> > MARKETPLACE> > Going Green: Your Yahoo! Groups resource for green living>

>> > Switch to: Text-Only, Daily Digest • Unsubscribe• Terms> of Use> > .> >>

[Guest guest]

,

If you are concerned about your heart the best thing you can do is consult your doctor. Perhaps you should see a cardiologist.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, January 4, 2010 8:45:39 AMSubject: Re: Re: question

MB. Yes, I am concerned about my heart rate as it goes into the 100's when I am just walking around. I do have a rapid heart beat so I am not sure if this is causing it. I also have PVC's

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 4, 2010 8:08:47 AMSubject: Re: Re: question

,

Yes it does. My resting heart rate is in the low 70's. My heart rate jumps into the high 80's low 90's when I move around at home. When I exercise it moves into the 120's. This would not be normal for someone else but for me it's fine.

When I was diagnosed with the lung disease in 2006 I was also in congestive heart failure. My heart recovered from that but my speedy heart rate is a consequence of that bout of chf.

Are you concerned about your heart rate? Some increase when we are active is to be expected as our hearts try to get oxygen around our bodies. Since our lungs provide a limited amount, our heart tries to compensate by beating faster. That underscores the importance of keeping our sats above 90, to lessen the strain on our heart.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 4, 2010 7:31:47 AMSubject: Re: Re: question

Bruce/MBDoes your heart rate go up when you are up and around?

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 2:39:30 PMSubject: Re: question

/MBI also use a liter miter but I'm on liquid and have a 75 foot hose andam not experiencing any loss over that distance. However, I should alsomention my hose is one piece, not a 25 and 50 connected by swivelconnector. I'd advise everyone to have a liter miter. Also make sure youkeep a check on your connector from the hose to the cannula. Putting itin water while in use to look for leaks is always good.> >> > MB,> > I am on oxygen (3 ltrs) for

exertion but the oxygen doesn't stay upin> the 90's.. Does that mean that I have to raise the level. When sitting> down on 3,2 or nothing the oxygen stays in the high 90's.> > > >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 12:45:00 PM> > Subject: Re: question> >> >> > Basically it means that your lungs can't keep up with your bodiesneed> for oxygen when you are exerting yourself. You don't say how low your> sats drop but if they drop below 90 while you are active you should be> using oxygen for exertion. Many of us can maintain resting sats above90> without O2. That's not at all unusual with pulmonary fibrosisespecially> in the early to

middle stages of the disease.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > ____________ _________ _________ __> > From: iltopaint iltopaint (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sat, January 2, 2010 9:56:43 AM> > Subject: question> >> >> > what does it mean when your oxygen level goes down when you areactive> and once you sit down it automatically goes back up into the high90's.> > It happens at pulmonary rehab and the pt doesn't say why.> >> >> > __.._,_.___> > Reply to sender | Reply to group Messages in this topic (84)> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1> > Visit Your

Group Start a New Topic> > MARKETPLACE> > Going Green: Your Yahoo! Groups resource for green living> >> > Switch to: Text-Only, Daily Digest • Unsubscribe• Terms> of Use> > .> >>

[Guest guest]

Yes, it does. Mine goes up more now than it did but thats a sign of the

condition of the right side of my heart which is severely dilated.

> > >

> > > MB,

> > > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay

up

> in

> > the 90's. Does that mean that I have to raise the level. When

sitting

> > down on 3,2 or nothing the oxygen stays in the high 90's.

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Beth mbmurtha@

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Sat, January 2, 2010 12:45:00 PM

> > > Subject: Re: question

> > >

> > >

> > > Basically it means that your lungs can't keep up with your bodies

> need

> > for oxygen when you are exerting yourself. You don't say how low

your

> > sats drop but if they drop below 90 while you are active you should

be

> > using oxygen for exertion. Many of us can maintain resting sats

above

> 90

> > without O2. That's not at all unusual with pulmonary fibrosis

> especially

> > in the early to middle stages of the disease.

> > >

> > > Beth

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Sat, January 2, 2010 9:56:43 AM

> > > Subject: question

> > >

> > >

> > > what does it mean when your oxygen level goes down when you are

> active

> > and once you sit down it automatically goes back up into the high

> 90's.

> > > It happens at pulmonary rehab and the pt doesn't say why.

> > >

> > >

> > > __.._,_.___

> > > Reply to sender | Reply to group Messages in this topic (84)

> > > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > > Visit Your Group Start a New Topic

> > > MARKETPLACE

> > > Going Green: Your Yahoo! Groups resource for green living

> > >

> > > Switch to: Text-Only, Daily Digest •

Unsubscribe

> • Terms

> > of Use

> > > .

> > >

> >

>

[Guest guest]

Bruce,What does it do when you put it in water? Do you mean just put the cannula in water?PatTo: Breathe-Support Sent: Sat, January 2, 2010 1:39:30 PMSubject: Re:

question

/MB

I also use a liter miter but I'm on liquid and have a 75 foot hose and

am not experiencing any loss over that distance. However, I should also

mention my hose is one piece, not a 25 and 50 connected by swivel

connector. I'd advise everyone to have a liter miter. Also make sure you

keep a check on your connector from the hose to the cannula. Putting it

in water while in use to look for leaks is always good.

> >

> > MB,

> > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay up

in

> the 90's. Does that mean that I have to raise the level. When sitting

> down on 3,2 or nothing the oxygen stays in the high 90's.

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Beth mbmurtha@

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 12:45:00 PM

> > Subject: Re: question

> >

> >

> > Basically it means that your lungs can't keep up with your bodies

need

> for oxygen when you are exerting yourself. You don't say how low your

> sats drop but if they drop below 90 while you are active you should be

> using oxygen for exertion. Many of us can maintain resting sats above

90

> without O2. That's not at all unusual with pulmonary fibrosis

especially

> in the early to middle stages of the disease.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sat, January 2, 2010 9:56:43 AM

> > Subject: question

> >

> >

> > what does it mean when your oxygen level goes down when you are

active

> and once you sit down it automatically goes back up into the high

90's.

> > It happens at pulmonary rehab and the pt doesn't say why.

> >

> >

> > __.._,_.___

> > Reply to sender | Reply to group Messages in this topic (84)

> > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > Visit Your Group Start a New Topic

> > MARKETPLACE

> > Going Green: Your Yahoo! Groups resource for green living

> >

> > Switch to: Text-Only, Daily Digest • Unsubscribe

• Terms

> of Use

> > .

> >

>

[Guest guest]

I mean take the area where the connector is and put the connector and

the hoses on each side of it and dip into a glass or bowl of water. If

you have a leak you will see bubbles. The connectors are cheap plastic

and do break at times. If you're like me, you catch it on the bottom of

the refrigerator and other places too. Of course, I also have a cat that

grabs the connector, sometimes with her paws, sometimes by putting her

entire body on it, and sometimes with her mouth. So more potential

reasons for mine to get damaged and leak.

> > >

> > > MB,

> > > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay

up

> in

> > the 90's. Does that mean that I have to raise the level. When

sitting

> > down on 3,2 or nothing the oxygen stays in the high 90's.

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Beth mbmurtha@

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Sat, January 2, 2010 12:45:00 PM

> > > Subject: Re: question

> > >

> > >

> > > Basically it means that your lungs can't keep up with your bodies

> need

> > for oxygen when you are exerting yourself. You don't say how low

your

> > sats drop but if they drop below 90 while you are active you should

be

> > using oxygen for exertion. Many of us can maintain resting sats

above

> 90

> > without O2. That's not at all unusual with pulmonary fibrosis

> especially

> > in the early to middle stages of the disease.

> > >

> > > Beth

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Sat, January 2, 2010 9:56:43 AM

> > > Subject: question

> > >

> > >

> > > what does it mean when your oxygen level goes down when you are

> active

> > and once you sit down it automatically goes back up into the high

> 90's.

> > > It happens at pulmonary rehab and the pt doesn't say why.

> > >

> > >

> > > __.._,_.___

> > > Reply to sender | Reply to group Messages in this topic (84)

> > > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > > Visit Your Group Start a New Topic

> > > MARKETPLACE

> > > Going Green: Your Yahoo! Groups resource for green living

> > >

> > > Switch to: Text-Only, Daily Digest •

Unsubscribe

> • Terms

> > of Use

> > > .

> > >

> >

>

[Guest guest]

Thanks Bruce, I will check this out. I'm always getting caught on something or someone in my family will step on the hose. It's getting to be a joke in our family. "Don't choke grandma." lolPatTo: Breathe-Support Sent: Mon, January 4, 2010 3:37:26 PMSubject: Re: question

I mean take the area where the connector is and put the connector and

the hoses on each side of it and dip into a glass or bowl of water. If

you have a leak you will see bubbles. The connectors are cheap plastic

and do break at times. If you're like me, you catch it on the bottom of

the refrigerator and other places too. Of course, I also have a cat that

grabs the connector, sometimes with her paws, sometimes by putting her

entire body on it, and sometimes with her mouth. So more potential

reasons for mine to get damaged and leak.

> > >

> > > MB,

> > > I am on oxygen (3 ltrs) for exertion but the oxygen doesn't stay

up

> in

> > the 90's. Does that mean that I have to raise the level. When

sitting

> > down on 3,2 or nothing the oxygen stays in the high 90's.

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Beth mbmurtha@

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Sat, January 2, 2010 12:45:00 PM

> > > Subject: Re: question

> > >

> > >

> > > Basically it means that your lungs can't keep up with your bodies

> need

> > for oxygen when you are exerting yourself. You don't say how low

your

> > sats drop but if they drop below 90 while you are active you should

be

> > using oxygen for exertion. Many of us can maintain resting sats

above

> 90

> > without O2. That's not at all unusual with pulmonary fibrosis

> especially

> > in the early to middle stages of the disease.

> > >

> > > Beth

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > >

> > >

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: iltopaint iltopaint (AT) yahoo (DOT) com>

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Sat, January 2, 2010 9:56:43 AM

> > > Subject: question

> > >

> > >

> > > what does it mean when your oxygen level goes down when you are

> active

> > and once you sit down it automatically goes back up into the high

> 90's.

> > > It happens at pulmonary rehab and the pt doesn't say why.

> > >

> > >

> > > __.._,_.___

> > > Reply to sender | Reply to group Messages in this topic (84)

> > > Recent Activity: * New Members 4 * New Photos 6 * New Links 1

> > > Visit Your Group Start a New Topic

> > > MARKETPLACE

> > > Going Green: Your Yahoo! Groups resource for green living

> > >

> > > Switch to: Text-Only, Daily Digest •

Unsubscribe

> • Terms

> > of Use

> > > .

> > >

> >

>

[Guest guest]

I say any symptoms such as those you described need medical attention.

Yes, the pains may simply be muscle but there are other things to

eliminate too. How long since you had an echocardiogram? There are other

things they might want to do as well such as a VQ if they feel

warranted. I'm not sure either symptom alone would bring me to say it

but you have three specific symptoms.

Now, it may be muscle. It may be the cold time of the year impacting

you. It may well be nothing but I still would want a doctor to tell me

that.

>

> * Beth, Bruce, P., Peggy et all.*.I have a question.Do you

> have any ideas on how to lessen the following things for me?

> Lately I have felt SOB...the oximeter says otherwise. My upper chest

> just feels tight.

> My Sat's and heart rate are fine, my blood pressure is fine. I've been

> using the heating pad to make the muscles

> feel better.It seems to help slightly. I can't use any muscle

> creams...the stink kills me!

> It's just uncomfortable.. It comes out of nowhere, I haven't been

doing

> anything outrageous.

> Thanks in advance.

> --

>

>

> Z 65, fibriotic NSIP/05/PA

>

>

> And " mild " PH/10/07

>

> No, NSIP was not self-inflicted...I never smoked!

>

> Potter, reader,carousel lover and MomMom to Darah and Sara

>

> " *I'm gonna be iron like a lion in Zion " Bob Marley*

>

> *Vinca Minor-periwinkle is my flower*

>

[Guest guest]

Bruce, My GP seems to feel that

it's muscle...my latest echo was just in November and

all was fine. He did a cardiogram while I was there yesterday..nothing

wrong there.

I just reread my post and I had neglected to say I'd been to the GP..

OD strikes again!...

I'm going with muscle...he said to try heat (moist =heat). Any other

ideas for comfort?

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Bruce wrote:

I say any symptoms such as those you described need medical attention.

Yes, the pains may simply be muscle but there are other things to

eliminate too. How long since you had an echocardiogram? There are other

things they might want to do as well such as a VQ if they feel

warranted. I'm not sure either symptom alone would bring me to say it

but you have three specific symptoms.

Now, it may be muscle. It may be the cold time of the year impacting

you. It may well be nothing but I still would want a doctor to tell me

that.

>

> * Beth, Bruce, P., Peggy et all.*.I have a question.Do you

> have any ideas on how to lessen the following things for me?

> Lately I have felt SOB...the oximeter says otherwise. My upper

chest

> just feels tight.

> My Sat's and heart rate are fine, my blood pressure is fine. I've

been

> using the heating pad to make the muscles

> feel better.It seems to help slightly. I can't use any muscle

> creams...the stink kills me!

> It's just uncomfortable.. It comes out of nowhere, I haven't

been

doing

> anything outrageous.

> Thanks in advance.

> --

>

>

> Z 65, fibriotic NSIP/05/PA

>

>

> And "mild" PH/10/07

>

> No, NSIP was not self-inflicted...I never smoked!

>

> Potter, reader,carousel lover and MomMom to Darah and Sara

>

> "*I'm gonna be iron like a lion in Zion" Bob Marley*

>

> *Vinca Minor-periwinkle is my flower*

>

[Guest guest]

Sounds somewhat like what I've experienced in terms of the pain but I

still would watch the shortness of breath to see how it goes. My doctor

told me to always check to see if I could replicated the pain by touch.

As long as I continued to be able to do that (I've had all tests), then

it was still pain external to any organs. I've had these pains since my

VATS in addition so some others that are more at the points of biopsy.

But the ones I'm describing aren't as strong as yours. I just keep

checking by touching it and I can always recreate the pain. So it

becomes " when I touch here or do this I feel pain " with the old

vaudeville line " then don't do that. "

Ok, sitting posture. We do sit a lot and based on where our positioning

is different. I'd switch it up some with pillows or a different chair or

more moving around or whatever. I find for instance if I spend too much

time in one recliner, then when I get up and active straightening to a

more upright position I pull tight in a certain area. Other than the

heat I have no real ideas. However, if it got too bad, I'd get a

referral and make a couple of trips to a physical therapist. Amazing how

they can address a point of pain like that.

> > >

> > > * Beth, Bruce, P., Peggy et all.*.I have a question.Do

you

> > > have any ideas on how to lessen the following things for me?

> > > Lately I have felt SOB...the oximeter says otherwise. My upper

chest

> > > just feels tight.

> > > My Sat's and heart rate are fine, my blood pressure is fine. I've

been

> > > using the heating pad to make the muscles

> > > feel better.It seems to help slightly. I can't use any muscle

> > > creams...the stink kills me!

> > > It's just uncomfortable.. It comes out of nowhere, I haven't been

> > doing

> > > anything outrageous.

> > > Thanks in advance.

> > > --

> > >

> > >

> > > Z 65, fibriotic NSIP/05/PA

> > >

> > >

> > > And " mild " PH/10/07

> > >

> > > No, NSIP was not self-inflicted...I never smoked!

> > >

> > > Potter, reader,carousel lover and MomMom to Darah and Sara

> > >

> > > " *I'm gonna be iron like a lion in Zion " Bob Marley*

> > >

> > > *Vinca Minor-periwinkle is my flower*

> > >

> >

> >

>

[Guest guest]

Hi , I do understand the SOB in your chest. I have had that for a while. It started with a feeling that I couldn't get enough air even though my sats were mid 90'sI have quite a bit of that now and am using a nebulizer with albuterol. That helps, then when it is muscle spasms I use the morphine. I am pretty sure what you are experiencing is an advancement of this monster.. My Dr. told me when my sats are good and my heart rate is good, we know my heart is good.. It's the disease.. It canbe very scary. The only way I know to help is to get really quite and try to breathe easy for 5 minutes or so. I am that way about all the time now. I also turn my 02 up a little. I am about out of numbers on this regulator. I don't realize it because it is now my norm. "I HATE THIS DISEASE."Read information about your heating pad. Mine says don't use in oxygen enriched area... LOL I have been doing it for at least four years. Just be careful.I may be having a rough time breathing but I am having fun with my go fast....... I have to get pics but I have to get dressed---boooo.lol Take care my friend

Love & PrayersPeggyIPF, 2004

[Guest guest]

Heya SISTA...great about the house sale...not so great about your discomfprt & concern with those weird symptoms....the good 'ol familiar STRESS can bring about chest pain...selling Houses is jolly stressful...it ranks among the top five Stress Factors that bring on nasty symptoms.

Stress Bucket from the Shops for YOU too m'dear....Queenie Bee has just got hers & training herself up to DUMP......use them (at both your Front & Back Doors now!)

Visualise Your Stress AWAY Sista......

See if that makes a difference......

Lotsa,

> > >> > > * Beth, Bruce, P., Peggy et all.*.I have a question.Do you> > > have any ideas on how to lessen the following things for me?> > > Lately I have felt SOB...the oximeter says otherwise. My upper chest> > > just feels tight.> > > My Sat's and heart rate are fine, my blood pressure is fine. I've been> > > using the heating pad to make the muscles> > > feel better.It seems to help slightly. I can't use any muscle> > > creams...the stink kills me!> > > It's just uncomfortable.. It comes out of nowhere, I haven't been> > doing> > > anything outrageous.> > > Thanks in advance.> > > --> > >> > >> > > Z 65, fibriotic NSIP/05/PA> > >> > >> > > And "mild" PH/10/07> > >> > > No, NSIP was not self-inflicted...I never smoked!> > >> > > Potter, reader,carousel lover and MomMom to Darah and Sara> > >> > > "*I'm gonna be iron like a lion in Zion" Bob Marley*> > >> > > *Vinca Minor-periwinkle is my flower*> > >> >> >>

[Guest guest]

Happy Birthday

Love & PrayersPeggyIPF, 2004

[Guest guest]

Peggy

You're so cute and funny....I love following this:

1-Read the information about your heating pad.

2-Mine says don't use it in oxygen enriched area.

3-I've been using it in the area for 4 years.

4-Be careful

Now, I'm just wondering.....why read the information? lol....

I'm with you though. I'd use it and be careful. Basically they tell us

not to use anything around oxygen. I know an electric razor is one.

Well, I do. I realize there is danger of a spark and problem and if so

I'll get on the move out. It's just like cooking and some of the other

things. They issue warnings to the extreme to cover their liability but

if we followed them all, we'd end up living in bubbles.

I'm glad the nebulizer and the morphine both help you. Every time I read

one of your posts I just look hoping you're feeling comfortable and

looking for the smile in your voice. You seem to be balancing things

very well and using the morphine in a way for it to help with the least

so that you're relieved of pain but having fun.

So, have you run over anyone yet with the Hoveround? Been back out? How

is feeling today? I hope better. For him to let it knock him out of

action, I know he was feeling pretty miserable.

>

> Hi , I do understand the SOB in your chest. I have had that for a

while. It started with a feeling that I couldn't get enough air even

though my sats were mid 90's

> I have quite a bit of that now and am using a nebulizer with

albuterol. That helps, then when it is muscle spasms I use the morphine.

I am pretty sure what you are experiencing is an advancement of this

monster.. My Dr. told me when my sats are good and my heart rate is

good, we know my heart is good.. It's the disease.. It can

> be very scary. The only way I know to help is to get really quite and

try to breathe easy for 5 minutes or so. I am that way about all the

time now. I also turn my 02 up a little. I am about out of numbers on

this regulator.

> I don't realize it because it is now my norm. " I HATE THIS DISEASE. "

>

> Read information about your heating pad. Mine says don't use in oxygen

enriched area... LOL I have been doing it for at least four years. Just

be careful.

> I may be having a rough time breathing but I am having fun with my go

fast....... I have to get pics but I have to get dressed---boooo.

> lol Take care my friend

>

>

>

> Love & Prayers

> Peggy

> IPF, 2004

>

[Guest guest]

It takes one of us to get the ball rolling! Happy Birthday to you ...

Hugs.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Peggy

Sent: Wednesday, January 20, 2010 1:23 PM

To: Breathe-Support

Subject: Re: Question

Happy Birthday

Love & Prayers

Peggy

IPF, 2004

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2634 - Release Date: 01/20/10 01:12:00

[Guest guest]

,

The only suggestion I would make is to double check and make sure you don't have something like a bit of bronchitis going on. I know you probably have no fever but since you're on a low dose of prednisone you wouldn't necessarily run a fever with an infection. You might want to just be checked to be certain.

It may be the winter cold, (the cold makes me short of breath and gives me chest tightness and pain) it may be stress, it may just be one of those weird unexplained things that happens to us. I don't agree with Peggy that this kind of discomfort means progression although obviously that's possible.

I feel short of breath every day without a corresponding drop in sats. Most of the time this happens when I'm exercising though not always. My lungs are not flexible and I can tell that every time I try to make them expand beyond the limits of my scarring.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, January 20, 2010 12:27:44 PMSubject: Question

Beth, Bruce, P., Peggy et all..I have a question.Do you have any ideas on how to lessen the following things for me?Lately I have felt SOB...the oximeter says otherwise. My upper chest just feels tight.My Sat's and heart rate are fine, my blood pressure is fine. I've been using the heating pad to make the musclesfeel better.It seems to help slightly. I can't use any muscle creams...the stink kills me!It's just uncomfortable. . It comes out of nowhere, I haven't been doing anything outrageous.Thanks in advance.

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

[Guest guest]

I know, That all goes along with don't use Vasoline in our noses... I for one am NOT going to stick a flame up my nose... Oh I just get tickled at all the STUFF they tell us.. I wonder sometimes if there is any "common since" left in this crazy world.. LOL I always have some fun during most every day. Oh one thing my hair dryer. If I look into the back, there is a red hot coil.. not good me thinks.. Oh well is usually holdingit.. Have a good evening..

Love & PrayersPeggyIPF, 2004

[Guest guest]

a similar thing happens to me a lot too

sats are good, but funny feeling in chest, sometimes like SOB, but sats are good

mary beth explained it a few months ago

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: QuestionTo: Breathe-Support Date: Wednesday, January 20, 2010, 5:45 PM

,

The only suggestion I would make is to double check and make sure you don't have something like a bit of bronchitis going on. I know you probably have no fever but since you're on a low dose of prednisone you wouldn't necessarily run a fever with an infection. You might want to just be checked to be certain.

It may be the winter cold, (the cold makes me short of breath and gives me chest tightness and pain) it may be stress, it may just be one of those weird unexplained things that happens to us. I don't agree with Peggy that this kind of discomfort means progression although obviously that's possible.

I feel short of breath every day without a corresponding drop in sats. Most of the time this happens when I'm exercising though not always. My lungs are not flexible and I can tell that every time I try to make them expand beyond the limits of my scarring.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, January 20, 2010 12:27:44 PMSubject: Question

Beth, Bruce, P., Peggy et all..I have a question.Do you have any ideas on how to lessen the following things for me?Lately I have felt SOB...the oximeter says otherwise. My upper chest just feels tight.My Sat's and heart rate are fine, my blood pressure is fine. I've been using the heating pad to make the musclesfeel better.It seems to help slightly. I can't use any muscle creams...the stink kills me!It's just uncomfortable. . It comes out of nowhere, I haven't been doing anything outrageous.Thanks in advance.

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

[Guest guest]

Beth and Peggy and Bruce too.The

GP said my lungs sounded good!!!

I'm not coughing at all and it's just this tight feeling across my

upper chest. The EKG was fine, my SAT's

are good and my blood pressure and heart rate are normal. Go figure!

Thanks for the congrats on the house sale...it's a burden of our backs

for sure...maybe it will

be a burden off my chest too!

The heating pad helped a bit and I found unscented self heating things

from ThermaCare that heat up

on contact with air...they work like heating pads but no wires.. they

stick with a sticky side

.. right to the  painful area...they are for arthritis pain..they have

helped today. I found them at CVS.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Beth wrote:

 

,

The only suggestion I would make is to double check and make

sure you don't have something like a bit of bronchitis going on. I know

you probably have no fever but since you're on a low dose of prednisone

you wouldn't necessarily run a fever with an infection. You might want

to just be checked to be certain.

 

It may be the winter cold, (the cold makes me short of breath

and gives me chest tightness and pain) it may be stress, it may just be

one of those weird unexplained things that happens to us. I don't agree

with Peggy that this kind of discomfort means progression although

obviously that's possible.

 

I feel short of breath every day without a corresponding drop in

sats. Most of the time this happens when I'm exercising though not

always. My lungs are not flexible and I can tell that every time I try

to make them expand beyond the limits of my scarring. 

 

Beth

Moderator

Fibrotic

NSIP 06/06 Dermatomyositis 11/08

 

 

From:

Zion <ljz741 (AT) verizon (DOT) net>

To: Breathe-Support

Sent: Wed, January 20,

2010 12:27:44 PM

Subject:

Question

 

Beth, Bruce, P., Peggy   et all..I

have a question.Do you have any ideas on how to lessen the following

things for me?

Lately I have felt SOB...the oximeter says otherwise. My upper chest

just feels tight.

My Sat's and heart rate are fine, my blood pressure is fine. I've been

using the heating pad to make the muscles

feel better.It seems to help slightly.  I can't use any muscle

creams...the stink kills me!

It's just uncomfortable. . It comes out of nowhere, I haven't been

doing anything outrageous.

Thanks in advance.

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I

never smoked!

Potter, reader,carousel lover and

MomMom to Darah and Sara      

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca Minor-periwinkle is my

flower

 

 

[Guest guest]

Bruce I want to address this to you. Not sure this is the correct way. Diagnosis Pulmonary Fibrosis in June 09 on NAC: Diagnosed by pulmonary function test. cat scan and bronch biopsy. My only symptoms are shortness of breathe and slight cough and runny nose. I have a oxcimeter and my oxygen falls when I am exerting (walking, cleaning, etc.) Went through Pulmonary rehab and tolorated it well. Learned correct breathing excercises etc. I have had very few problems, no colds, chest pains = tiredness yes' I have just repeated my pulmonary function test and it had improved from about 45 to 65 I believe. Cat scan still shows fibrosis and he wants a lung biopsy this spring to see what type of PF I

have. He did put me on predisone starting at 40 and tapering to 5 in three months to see the results of a repeat Pulmonary Function test. He also put me on Advair. I have a sister who has PF and is on oxy 24/7 and not good at all. I asked him if that is what he could see for me and he said not necesarily He said there are 5 kinds of pf and he wants to find out what I have thus the biopsy. I have never heard of different kinds if Pulmonary Fibrosis could you fill me in barbt] Re: QuestionTo: Breathe-Support Date: Wednesday, January 20, 2010, 4:51 PM

PeggyYou're so cute and funny....I love following this:1-Read the information about your heating pad.2-Mine says don't use it in oxygen enriched area.3-I've been using it in the area for 4 years.4-Be carefulNow, I'm just wondering... ..why read the information? lol....I'm with you though. I'd use it and be careful. Basically they tell usnot to use anything around oxygen. I know an electric razor is one.Well, I do. I realize there is danger of a spark and problem and if soI'll get on the move out. It's just like cooking and some of the otherthings. They issue warnings to the extreme to cover their liability butif we followed them all, we'd end up living in bubbles.I'm glad the nebulizer and the morphine both help you. Every time I readone of your posts I just look hoping you're feeling comfortable andlooking for the smile in your voice. You seem to be balancing

thingsvery well and using the morphine in a way for it to help with the leastso that you're relieved of pain but having fun.So, have you run over anyone yet with the Hoveround? Been back out? Howis feeling today? I hope better. For him to let it knock him out ofaction, I know he was feeling pretty miserable.>> Hi , I do understand the SOB in your chest. I have had that for awhile. It started with a feeling that I couldn't get enough air eventhough my sats were mid 90's> I have quite a bit of that now and am using a nebulizer withalbuterol. That helps, then when it is muscle spasms I use the morphine.I am pretty sure what

you are experiencing is an advancement of thismonster.. My Dr. told me when my sats are good and my heart rate isgood, we know my heart is good.. It's the disease.. It can> be very scary. The only way I know to help is to get really quite andtry to breathe easy for 5 minutes or so. I am that way about all thetime now. I also turn my 02 up a little. I am about out of numbers onthis regulator.> I don't realize it because it is now my norm. "I HATE THIS DISEASE.">> Read information about your heating pad. Mine says don't use in oxygenenriched area... LOL I have been doing it for at least four years. Justbe careful.> I may be having a rough time breathing but I am having fun with my gofast....... I have to get pics but I have to get dressed---boooo.> lol Take care my friend>>>> Love & Prayers> Peggy> IPF,

2004>

[Guest guest]

, Sister

in OZ I like the "Stress Bucket at the door" it ranks up

there with the 15 minute rule for really good

advice for coping with this disease.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

grangi49 wrote:

Heya SISTA...great

about the house sale...not so great about your discomfprt & concern

with those weird symptoms....the good 'ol familiar STRESS can

bring about chest pain...selling Houses is jolly stressful...it

ranks among the top five Stress Factors that bring on nasty symptoms.

Stress Bucket from the

Shops for YOU too m'dear....Queenie Bee has just got hers &

training herself up to DUMP......use them (at both your Front &

Back Doors now!)

Visualise Your Stress

AWAY Sista......

See if that makes a

difference......

Lotsa,

> > >

> > > * Beth, Bruce, P., Peggy et all.*.I have a

question.Do you

> > > have any ideas on how to lessen the following things for

me?

> > > Lately I have felt SOB...the oximeter says otherwise. My

upper chest

> > > just feels tight.

> > > My Sat's and heart rate are fine, my blood pressure is

fine. I've been

> > > using the heating pad to make the muscles

> > > feel better.It seems to help slightly. I can't use any

muscle

> > > creams...the stink kills me!

> > > It's just uncomfortable.. It comes out of nowhere,

I haven't been

> > doing

> > > anything outrageous.

> > > Thanks in advance.

> > > --

> > >

> > >

> > > Z 65, fibriotic NSIP/05/PA

> > >

> > >

> > > And "mild" PH/10/07

> > >

> > > No, NSIP was not self-inflicted...I never smoked!

> > >

> > > Potter, reader,carousel lover and MomMom to Darah and

Sara

> > >

> > > "*I'm gonna be iron like a lion in Zion" Bob Marley*

> > >

> > > *Vinca Minor-periwinkle is my flower*

> > >

> >

> >

>

[Guest guest]

Barbara

To be blunt you need to get to another doctor if that is what he said.

There are over 200 forms of PF, not 5. Now generally the doctors will

refer to them as Interstitial Lung Diseases (nearly all of which have

fibrosis).

Why did he give you the advair? Thats not typically prescribed for PF

but for obstructive lung diseases?

Did they express a preliminary opinion as to the type based on the CT

and the bronch?

You say your PFT increased from 45 to 65. What reading do you mean? Your

FVC, FEV1, DLCO, TLC? It could increase because you did better on the

test, it could be because you're in better general physical condition,

it could increase because the Advair helped with a condition other than

PF such as Asthma or COPD? Have either of these ever been mentioned to

you? Pulmonary rehab could have accounted for some improvement. PFT's

are also not precise and will vary.

The fact your sister has PF certainly makes one curious as to the

possibility of it either being familial or in some way caused by

environment that you both were exposed to.

Has a complete panel been run to check on any possible connective tissue

diseases?

How long have you been on the prednisone and how long were you prior to

the new PFT's?

I don't know where you live or where you've been but I'd strongly

recommend a teaching hospital with an Interstitial Lung Disease

department such as the IPF Centers of Excellence. www.ipfnet.org

You'll get a thorough diagnosis and complete understanding and then and

only then can you decide on the appropriate choices.

I know I shot back with many questions and you don't have the answers to

some at least but they're all things you need to know. You need copies

of all your reports and you need to understand them. Being told you have

45% or 65% means nothing if you don't know what it's referring to. I'm

always glad to try to assist in answering anything as are the other

forum members.

I won't bombard you with more in this response but pursue knowledge just

as you are. You will face decisions and choices, but only can with

information. Also, you so want to be sure what the diagnosis is to this

point and then what would be gained by a biopsy other than pain and

knowledge that you weren't going to use to change anything. I used mine

to determine treatment, but you're already receiving treatment. Most

importantly, another opinion before any decisions and get it at an ILD

center in a teaching hospital.

> >

> > Hi , I do understand the SOB in your chest. I have had that for

a

> while. It started with a feeling that I couldn't get enough air even

> though my sats were mid 90's

> > I have quite a bit of that now and am using a nebulizer with

> albuterol. That helps, then when it is muscle spasms I use the

morphine.

> I am pretty sure what you are experiencing is an advancement of this

> monster.. My Dr. told me when my sats are good and my heart rate is

> good, we know my heart is good.. It's the disease.. It can

> > be very scary. The only way I know to help is to get really quite

and

> try to breathe easy for 5 minutes or so. I am that way about all the

> time now. I also turn my 02 up a little. I am about out of numbers on

> this regulator.

> > I don't realize it because it is now my norm. " I HATE THIS DISEASE. "

> >

> > Read information about your heating pad. Mine says don't use in

oxygen

> enriched area... LOL I have been doing it for at least four years.

Just

> be careful.

> > I may be having a rough time breathing but I am having fun with my

go

> fast....... I have to get pics but I have to get dressed---boooo.

> > lol Take care my friend

> >

> >

> >

> > Love & Prayers

> > Peggy

> > IPF, 2004

> >

>

[Guest guest]

Hi ,

Sometimes I get discomfort in my chest too. I've used Ibuprofen and it relieved it.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Wed, January 20, 2010 9:27:44 AMSubject: Question

Beth, Bruce, P., Peggy et all..I have a question.Do you have any ideas on how to lessen the following things for me?Lately I have felt SOB...the oximeter says otherwise. My upper chest just feels tight.My Sat's and heart rate are fine, my blood pressure is fine. I've been using the heating pad to make the musclesfeel better.It seems to help slightly. I can't use any muscle creams...the stink kills me!It's just uncomfortable. . It comes out of nowhere, I haven't been doing anything outrageous.Thanks in advance.

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

[Guest guest]

Z.... a huge WHOO HOOOO on the sale of your house! Oh I do know the relief when a house sells. Now, on for bigger and better things!

Hugs.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Zion

Sent: Wednesday, January 20, 2010 4:44 PM

To: Breathe-Support

Subject: Re: Question

Beth and Peggy and Bruce too.The GP said my lungs sounded good!!!I'm not coughing at all and it's just this tight feeling across my upper chest. The EKG was fine, my SAT's are good and my blood pressure and heart rate are normal. Go figure!Thanks for the congrats on the house sale...it's a burden of our backs for sure...maybe it willbe a burden off my chest too!The heating pad helped a bit and I found unscented self heating things from ThermaCare that heat upon contact with air...they work like heating pads but no wires.. they stick with a sticky side. right to the painful area...they are for arthritis pain..they have helped today. I found them at CVS.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Beth wrote:

,

The only suggestion I would make is to double check and make sure you don't have something like a bit of bronchitis going on. I know you probably have no fever but since you're on a low dose of prednisone you wouldn't necessarily run a fever with an infection. You might want to just be checked to be certain.

It may be the winter cold, (the cold makes me short of breath and gives me chest tightness and pain) it may be stress, it may just be one of those weird unexplained things that happens to us. I don't agree with Peggy that this kind of discomfort means progression although obviously that's possible.

I feel short of breath every day without a corresponding drop in sats. Most of the time this happens when I'm exercising though not always. My lungs are not flexible and I can tell that every time I try to make them expand beyond the limits of my scarring.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support Sent: Wed, January 20, 2010 12:27:44 PMSubject: Question

Beth, Bruce, P., Peggy et all..I have a question.Do you have any ideas on how to lessen the following things for me?Lately I have felt SOB...the oximeter says otherwise. My upper chest just feels tight.My Sat's and heart rate are fine, my blood pressure is fine. I've been using the heating pad to make the musclesfeel better.It seems to help slightly. I can't use any muscle creams...the stink kills me!It's just uncomfortable. . It comes out of nowhere, I haven't been doing anything outrageous.Thanks in advance.

--

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 271.1.1/2636 - Release Date: 01/20/10 23:34:00

[Guest guest]

Connie, I know your not around a lot with working and all, I sure hope your doing OK.  I've decided to move forward with Disability, somehow I thought I was on the SS web, and filled in some info, just to have an attorney call me.  

Anyway, that doesn't mean I have to use him, that's for sure.  I do have a question for anyone,  They talk about a supplement amount, and another amount, for me that's the difference of $200.  Don't completely understand that.

And with either one of these, do you automatically get medicare?  My biggest fear, and I think it will come, is what to do when the Remicade no longer helps, and I need to go to another drug.  With our health Insurance we had to fight for a year for the Remicade,

What if I have to fight again. When I go in and get my Remicade, there are plenty of young people, OK young as in my age (50's) and they are getting there Remicade NO problem because they have Medicare benefits with their disability.  So do you just get it too??? 

Right now I am overwhelmed with life. My son has managed to get $500 in overdraft fees, was over $600, but the were willing to take $100 off, I think they should take off more, and I'm fighting for him, as he works 8-5, and they are not listening to him anyway.  blowing him off as a dumb kid, it's really sad.

My daughter is flunking 1/2 her classes,  missing papers, being lazy, she's grounded, and can't get her driving permit until she has all C's and better, boy that would  motivate me, but so far not her.

I think I've been holding up for my husband, lot's of stress with work, and he's finally coping better, so I guess that I let my dam break.  Sorry for all the whining but I do feel better:) Thanks for listening, and  hopefully someone will know about the SS questions.

Or I may be calling you Connie.  OK it's 2pm I'm still in my Robe, I guess I better do the shower and dress thing! Rose I hope your doing better, did you get the epidural?  Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

[Guest guest]

Marla, I'm so sorry that you have all this stress from your kids. I honestly would pick my physical problems over kid/grandkid problems, if I had a choice. Unfortunately, I hit the lottery & got both. Could there be something else going on with your daughter? Somebody messing with her, or even some questions in her mind about her heritage? My 2 granddaughters in San were raised mostly by their dad & were very involved in Mexican culture. The two up here in Indiana have had almost no exposure to their dad's culture. They haven't expressed much interest, although I had what I called a "Hoosier Quinceneria" for them when they turned 15. Just a family party & some of the traditional quinceneria gifts. They seemed to enjoy it, but haven't really talked about it since. It's so hard to guess what's in their minds, but it really may be more than just laziness or disinterest.

I don't know if it's just in Indiana, or the entire country, but once I was approved for SS disability, I had to wait 2 years for Medicare to kick in. So I went all that time without insurance coverage & got myself in a pretty deep hole. Lost my house, a good chunk of my retirement money, etc. But at least I had some retirement money to use when I needed it, so can't complain too much about that.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: neurosarcoidosis From: mebramer@...Date: Thu, 17 Mar 2011 13:59:43 -0600Subject: Question

Connie, I know your not around a lot with working and all, I sure hope your doing OK. I've decided to move forward with Disability, somehow I thought I was on the SS web, and filled in some info, just to have an attorney call me. Anyway, that doesn't mean I have to use him, that's for sure. I do have a question for anyone, They talk about a supplement amount, and another amount, for me that's the difference of $200. Don't completely understand that. And with either one of these, do you automatically get medicare? My biggest fear, and I think it will come, is what to do when the Remicade no longer helps, and I need to go to another drug. With our health Insurance we had to fight for a year for the Remicade, What if I have to fight again. When I go in and get my Remicade, there are plenty of young people, OK young as in my age (50's) and they are getting there Remicade NO problem because they have Medicare benefits with their disability. So do you just get it too??? Right now I am overwhelmed with life. My son has managed to get $500 in overdraft fees, was over $600, but the were willing to take $100 off, I think they should take off more, and I'm fighting for him, as he works 8-5, and they are not listening to him anyway. blowing him off as a dumb kid, it's really sad. My daughter is flunking 1/2 her classes, missing papers, being lazy, she's grounded, and can't get her driving permit until she has all C's and better, boy that would motivate me, but so far not her.I think I've been holding up for my husband, lot's of stress with work, and he's finally coping better, so I guess that I let my dam break. Sorry for all the whining but I do feel better:) Thanks for listening, and hopefully someone will know about the SS questions. Or I may be calling you Connie. OK it's 2pm I'm still in my Robe, I guess I better do the shower and dress thing! Rose I hope your doing better, did you get the epidural? Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb