Re: Tips for living with IPF/PF/ILD

[Guest guest]

Pink

Then you can be one of those ladies who runs over everyone in Walmart. I

have used a scooter there when i was in a hurry and needed to go around

the store. Just a couple of times. But I didn't run over any one. I have

seen some who just barrel down the aisles regardless of whether someone

is standing there.

My shower is very nice but I sure do wish it was a bit bigger. When I do

need a shower seat it's going to be very tight.

>

>

> From: Peggy pac1773@...

> Subject: Tips for living with IPF/PF/ILD

> To: Breathe-Support

> Date: Friday, June 19, 2009, 10:56 AM

>

>

> I am hoping this will help some newbies a little. I'm going to try to

start at my beginning and the things I have learned

> since. Somethings may not work for all but some will be happy to see a

different way to do things.

>

>

> First since we first look at out 02 like it is going to eat us alive..

relax it is a lifeline. the cannula you get can be adjusted.

> Some of us have a problem with the nose prongs being to long.. TRIM

them off just a little at a time until it is more comfortable.

>

>

> Your concentrator is loud and creates a lot of heat. So if you have a

spare room to put it in do that and crack a window. Also if you use

tanks they should be stored in a room that is not to tight. I have mine

outside. It is fine except in cold weather. As

> long as it is protected from the elements.

>

>

> Have extra hoses, connectors ( to attach hoses to cannula) Extra key

to open the bottles. (I have several.) and the little rubber and brass

washers for your regulator. I keep all these little things in a little

bag I call my tool bag.. never leave home without it.

> Change out your cannula and hoses frequently. some do it weekly. I do

it every two to three weeks on the hoses. My cannula probably the same.

I wash it in the shower with warm soapy water. (works for me. )

>

>

> GET OUT AND ENJOY YOUR LIFE.. It can be done just a little

differently.

>

>

> Showering and hair washing can really be a challenge unless you have a

few helpers.

> A shower chair is almost a must, sit relax an enjoy the soothing warm

water. Try not to use to hot of water if humidity is

> a problem for you. Wash your hair then rest your arms while the

shower rinses it. I also have a wonderful back brush.

> It is heaven.

>

> Wrap a towel around your head and slip on a terry robe. sit for a few

min. catch up to yourself them you are going to feel so good

>

>

> Eat small meals it helps the full tunny feeling after.

>

>

> I want to add more here but must go to bake a few cakes with Amber for

our PJ party.. lol.

>

>

> I hope these little things help some.

>

>

>

>

>

>

>

>

> Love and Prayers, Peggy

> IPF 2004, Florida

>

>

>

> Worry looks around,

> Sorry looks back,

> Faith looks up.

>

[Guest guest]

Remember the 15 min rule, when you have a job to do, set a timer for 15mins, when the alarm goes off, REST. once you've rested, set the timer for another 15mins and go again. You'll get a lot acheived and you won't make yourself too tired.

Love Ze xx> >> >> > From: Peggy pac1773@> > Subject: Tips for living with IPF/PF/ILD> > To: Breathe-Support > > Date: Friday, June 19, 2009, 10:56 AM> >> >> > I am hoping this will help some newbies a little. I'm going to try to> start at my beginning and the things I have learned> > since. Somethings may not work for all but some will be happy to see a> different way to do things.> >> >> > First since we first look at out 02 like it is going to eat us alive..> relax it is a lifeline. the cannula you get can be adjusted.> > Some of us have a problem with the nose prongs being to long.. TRIM> them off just a little at a time until it is more comfortable.> >> >> > Your concentrator is loud and creates a lot of heat. So if you have a> spare room to put it in do that and crack a window. Also if you use> tanks they should be stored in a room that is not to tight. I have mine> outside. It is fine except in cold weather. As> > long as it is protected from the elements.> >> >> > Have extra hoses, connectors ( to attach hoses to cannula) Extra key> to open the bottles. (I have several.) and the little rubber and brass> washers for your regulator. I keep all these little things in a little> bag I call my tool bag.. never leave home without it.> > Change out your cannula and hoses frequently. some do it weekly. I do> it every two to three weeks on the hoses. My cannula probably the same.> I wash it in the shower with warm soapy water. (works for me. )> >> >> > GET OUT AND ENJOY YOUR LIFE.. It can be done just a little> differently.> >> >> > Showering and hair washing can really be a challenge unless you have a> few helpers.> > A shower chair is almost a must, sit relax an enjoy the soothing warm> water. Try not to use to hot of water if humidity is> > a problem for you. Wash your hair then rest your arms while the> shower rinses it. I also have a wonderful back brush.> > It is heaven.> >> > Wrap a towel around your head and slip on a terry robe. sit for a few> min. catch up to yourself them you are going to feel so good> >> >> > Eat small meals it helps the full tunny feeling after.> >> >> > I want to add more here but must go to bake a few cakes with Amber for> our PJ party.. lol.> >> >> > I hope these little things help some.> >> >> >> >> >> >> >> >> > Love and Prayers, Peggy> > IPF 2004, Florida> >> >> >> > Worry looks around,> > Sorry looks back,> > Faith looks up.> >>

[Guest guest]

Zena

Is this US minutes or UK Metric minutes? just kidding.

Maybe the greatest thing I ever derived from this board was learning how

to live with the disease. As a result I consider my life good, very

good. In October, I won't be running across the field to meet those in

Chattanooga, but I can assure you it will be good. Peggy will be moving

slow but she'll still give incredible hugs.

But we do have to pace. The other thing I do is try to limit the number

of activities in a given day. Then if I do just have too many on one

day, I plan to take the next day off (off from activities) and recover.

Plan based on what you know you can handle. Life doesn't have to be

lived at a fast pace. In fact, slowing down is sort of nice in many

ways. Just would have preferred doing it by choice instead of force.

No guilt is something else I'll toss out. Don't think about what you

can't do, just what you can. But don't feel guilty about getting others

to help or any of your limits. Your value as a person isn't related to

how much you can do. I use to do the work of three but I wasn't nearly

the person I am now. Thats a weakness of the world the way it has

evolved, that we equate self worth sometimes to productivity.

> > >

> > >

> > > From: Peggy pac1773@

> > > Subject: Tips for living with IPF/PF/ILD

> > > To: Breathe-Support

> > > Date: Friday, June 19, 2009, 10:56 AM

> > >

> > >

> > > I am hoping this will help some newbies a little. I'm going to try

> to

> > start at my beginning and the things I have learned

> > > since. Somethings may not work for all but some will be happy to

see

> a

> > different way to do things.

> > >

> > >

> > > First since we first look at out 02 like it is going to eat us

> alive..

> > relax it is a lifeline. the cannula you get can be adjusted.

> > > Some of us have a problem with the nose prongs being to long..

TRIM

> > them off just a little at a time until it is more comfortable.

> > >

> > >

> > > Your concentrator is loud and creates a lot of heat. So if you

have

> a

> > spare room to put it in do that and crack a window. Also if you use

> > tanks they should be stored in a room that is not to tight. I have

> mine

> > outside. It is fine except in cold weather. As

> > > long as it is protected from the elements.

> > >

> > >

> > > Have extra hoses, connectors ( to attach hoses to cannula) Extra

key

> > to open the bottles. (I have several.) and the little rubber and

brass

> > washers for your regulator. I keep all these little things in a

little

> > bag I call my tool bag.. never leave home without it.

> > > Change out your cannula and hoses frequently. some do it weekly. I

> do

> > it every two to three weeks on the hoses. My cannula probably the

> same.

> > I wash it in the shower with warm soapy water. (works for me. )

> > >

> > >

> > > GET OUT AND ENJOY YOUR LIFE.. It can be done just a little

> > differently.

> > >

> > >

> > > Showering and hair washing can really be a challenge unless you

have

> a

> > few helpers.

> > > A shower chair is almost a must, sit relax an enjoy the soothing

> warm

> > water. Try not to use to hot of water if humidity is

> > > a problem for you. Wash your hair then rest your arms while the

> > shower rinses it. I also have a wonderful back brush.

> > > It is heaven.

> > >

> > > Wrap a towel around your head and slip on a terry robe. sit for a

> few

> > min. catch up to yourself them you are going to feel so good

> > >

> > >

> > > Eat small meals it helps the full tunny feeling after.

> > >

> > >

> > > I want to add more here but must go to bake a few cakes with Amber

> for

> > our PJ party.. lol.

> > >

> > >

> > > I hope these little things help some.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Love and Prayers, Peggy

> > > IPF 2004, Florida

> > >

> > >

> > >

> > > Worry looks around,

> > > Sorry looks back,

> > > Faith looks up.

> > >

> >

>

[Guest guest]

If you're having a bad day, make it 15 new york minutes

> > > >> > > >> > > > From: Peggy pac1773@> > > > Subject: Tips for living with IPF/PF/ILD> > > > To: Breathe-Support > > > > Date: Friday, June 19, 2009, 10:56 AM> > > >> > > >> > > > I am hoping this will help some newbies a little. I'm going to try> > to> > > start at my beginning and the things I have learned> > > > since. Somethings may not work for all but some will be happy to> see> > a> > > different way to do things.> > > >> > > >> > > > First since we first look at out 02 like it is going to eat us> > alive..> > > relax it is a lifeline. the cannula you get can be adjusted.> > > > Some of us have a problem with the nose prongs being to long..> TRIM> > > them off just a little at a time until it is more comfortable.> > > >> > > >> > > > Your concentrator is loud and creates a lot of heat. So if you> have> > a> > > spare room to put it in do that and crack a window. Also if you use> > > tanks they should be stored in a room that is not to tight. I have> > mine> > > outside. It is fine except in cold weather. As> > > > long as it is protected from the elements.> > > >> > > >> > > > Have extra hoses, connectors ( to attach hoses to cannula) Extra> key> > > to open the bottles. (I have several.) and the little rubber and> brass> > > washers for your regulator. I keep all these little things in a> little> > > bag I call my tool bag.. never leave home without it.> > > > Change out your cannula and hoses frequently. some do it weekly. I> > do> > > it every two to three weeks on the hoses. My cannula probably the> > same.> > > I wash it in the shower with warm soapy water. (works for me. )> > > >> > > >> > > > GET OUT AND ENJOY YOUR LIFE.. It can be done just a little> > > differently.> > > >> > > >> > > > Showering and hair washing can really be a challenge unless you> have> > a> > > few helpers.> > > > A shower chair is almost a must, sit relax an enjoy the soothing> > warm> > > water. Try not to use to hot of water if humidity is> > > > a problem for you. Wash your hair then rest your arms while the> > > shower rinses it. I also have a wonderful back brush.> > > > It is heaven.> > > >> > > > Wrap a towel around your head and slip on a terry robe. sit for a> > few> > > min. catch up to yourself them you are going to feel so good> > > >> > > >> > > > Eat small meals it helps the full tunny feeling after.> > > >> > > >> > > > I want to add more here but must go to bake a few cakes with Amber> > for> > > our PJ party.. lol.> > > >> > > >> > > > I hope these little things help some.> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Love and Prayers, Peggy> > > > IPF 2004, Florida> > > >> > > >> > > >> > > > Worry looks around,> > > > Sorry looks back,> > > > Faith looks up.> > > >> > >> >>

[Guest guest]

,

That's quite a picture you paint.....LOL

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, June 20, 2009 1:17:31 AMSubject: Tips for living with IPF/PF/ILD

Hi Peggy,

I love your tips on the bathing process but suprised you didn't mention that people with scooters,--- can go thru car washes,--- drop the robe half way thru--- get a massage (if you get close enough to the brushes) and blow dry and you are in and out in 5 minutes. Great way to go in Arizona, its a dry heat and you are dry before you get home LOL.

G.

[Guest guest]

oh, i just love this way to bathe. Have to run out and get me a scooter.. LOL

Patti Friend, 7'06 ipf, 2'07 pulm HTN, raynaud's, scleroderma,etc.

>

> Hi Peggy,

>      I love your tips on the bathing process but suprised you didn't mention

that people with scooters,--- can go thru car washes,--- drop the robe half way

thru--- get a massage (if you get close enough to the brushes) and blow dry and

you  are in and out in 5 minutes.  Great way to go in Arizona, its a dry heat

and you are dry before you get home LOL.

>   G.

>