Re: Re: Tips for living with IPF/PF/ILD

[Guest guest]

Oops, I always wondered who foot I ran over that day. Sincerest apologies but a girl has to have her ice cream!

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: Bruce Moreland

Sent: Friday, June 19, 2009 12:34 PM

To: Breathe-Support

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

PinkThen you can be one of those ladies who runs over everyone in Walmart. Ihave used a scooter there when i was in a hurry and needed to go aroundthe store. Just a couple of times. But I didn't run over any one. I haveseen some who just barrel down the aisles regardless of whether someoneis standing there.My shower is very nice but I sure do wish it was a bit bigger. When I doneed a shower seat it's going to be very tight.>>> 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 tostart at my beginning and the things I have learned> since. Somethings may not work for all but some will be happy to see adifferent 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.. TRIMthem 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 aspare room to put it in do that and crack a window. Also if you usetanks they should be stored in a room that is not to tight. I have mineoutside. 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 keyto open the bottles. (I have several.) and the little rubber and brasswashers for your regulator. I keep all these little things in a littlebag I call my tool bag.. never leave home without it.> Change out your cannula and hoses frequently. some do it weekly. I doit 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 littledifferently.>>> Showering and hair washing can really be a challenge unless you have afew helpers.> A shower chair is almost a must, sit relax an enjoy the soothing warmwater. Try not to use to hot of water if humidity is> a problem for you. Wash your hair then rest your arms while theshower 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 fewmin. 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 forour 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,

Out of all the tips I've recieved this one has been the best. Prior to living your 15 minute rule I was sick all the time. I would feel good do too much, get sick, do nothing, feel good, do too much, get sick, etc., etc. I get so much more accomplished and I am pretty good at a lot of facebook games now ( one has to do something during the resting time:). Haven't been on for a few weeks because I have been swamped with school work and finals. Getting caught up on my 1,300 posts so I hope everyone is well. R. (53) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Tips for living with IPF/PF/ILDTo: Breathe-Support Date: Friday, June 19, 2009, 12:49 PM

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@ yahoogroups. com> > 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.> >>