joyce

[Guest guest]

Joyce, I think this is the worst about this disease it makes us feel so old. Even though logically, there are plenty of young people who are ill and need walkers, oxygen, hospital beds, etc., and plenty of 90 year olds rushing around the mall without any of the "sickbed paraphernalia." I think we so associate young with well and sick with old when really it has nothing to do with age. Now if I could just "feel" logically instead of just think logically I would have this whipped! Sarcoid/PF 3/2006 California Re: Joyce

Peggy,

My new lovely bed (not) is motorized. I just spent my first night. It does feel better than a chair, but that mattress is lousy. The pad feels so good. I wonder if I could put memory foam between the mattress and APP pad? Hmm. I will eventually get it like I want it.

I went into the bathroom, locked the door and cried when that thing came. I am 63 not 93. I want to be zipping out the door on my way to the Mall, not getting into a hospital bed. Aaaaargh!

Hugs, Joyce D.>> Joyce, Sam's Club sells a memory foam pad that I have on all my beds. > they are less than a hundred. and are sooooooo> comfy. also if use a full size sheet they stay on the ends better. > You just tuck in the long side a little further.> Is it electric or does it have the crank?> Wishing you sweet comfy sleep and lots of rest.> > > Love and Prayers, Peggy> ipf 6/04 Florida> "Worry looks around,> Sorry looks back,> Faith looks up.">

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[Guest guest]

'''''I am so very tired. And a little scared. When I finished rehab

in August and began maintainence, I was walking 30 minutes on the

treadmill at 5L...plus other excersizes. A very few months later, I

can not walk 2 minutes.

My whole life has changed. I don't drive, I barely get out of the

house at all. '''''

joyce i found this so articulate and i am so sorry this is happening to

you. you have mentioned before about a slide in your health but this

above brings it truly into sight how much things have changed for you.

its very hard to sometimes get from the posts when something major has

happened for someone. having problems from air suppliers is so morally

wrong. society as a whole just does not understand that chronic and

terminal illnesses are made so much worse by issues of medical and

bureaucratic incompetance. i totally agree with you about lungs in

general. people really dont have much sympathy.

i dont know if you have heard of the uk soak 'coronation street'. one

of the characters 'vera duckworth' has just retired due to emphysema

after playing the role for 30 years and they just lost a huge

opportunity to promote o2 use and/or lung transplants in her final

storyline. liz dawn, the acress, used o2 but wasn't seen on screen

with it. my view is that she and/or the story liners didn't have the

courage to feature an issue that was crying out to be given some air

time. our soaps generally love airing issues too. transplants are big

news here in the uk too as the government is trying to change our

system from opt in to opt out and our new prime minister has came out

in favour. (his youngest son has mild cf).

i personally feel any airing of any lung issue will help all of us and

soaps are the quickest way to get messages across. btw, i've just been

told by my 'active living - doctor referral' co-ordinator that i can't

bring my o2 to exercise class for health and safety reasons. they made

comment about deteriorating since first coming to them. i said this

wasn't so but that they need to get a plan in action and said they plan

to look at it. my consultant, respiratory nurse, doctor etc are not

going to be pleased when they hear this.

may

uip 06.06, glasgow