Re: sad and angry tonight - need to vent!!

[Guest guest]

Nan,

Have you gotten on the phone and called your insurance co.? Or have the drs.

office do it. There has to be a way. Dont give up !

Miranda

LA / 28yrs old

IPF 05

>

> I got a letter from my ins. saying that my O2 needs weren't severe enough to

need O2. So, I contacted my pulmodude's office. The nurse had me go in and walk.

Problem solved! (or at least I thought)

> Well, this evening, I got another letter from ins. co. NOW they're saying " ok,

we'll pay for your O2. BUT, we'll only pay for gas tanks because liquid is too

expensive and you don't need it. "

> The whole reason for ordering the liquid is because I have RA and fibromyalgia

and I'm not able to manage the tanks. How much do the tanks weigh? Can anyone

tell me that? I'm going on what the doc said as far as lifting them. I've never

lifted one but the doc says they're too heavy for me.

> I live alone and if they take the liquid away, I'll be confined to the house.

> I was supposed to start a medically monitered exercise program this week. But,

I've had extreme pain in my knees. My primary sent me to an orthodude. He said

don't do any more walking than necessary until we figure out if this pain is

because the Prednisone that I've been taking tapers of for years has caused

aseptic necrosis. If so, that means surgery!

> I've done everything that the doctors have told me. I've advocated for myself

in learning about this awful illness that has added it's self to my list of

problems.

> I'm so tired of being sick and tired! I'm not even 50 and I feel like my body

is just giving up! It seems like what I need to do for one problem, I can't do

because of another problem.

> All the exercises I can do for the breathing, bother the RA and fibro. And all

the exercises that I can do for the RA and fibro bother the breathing. I'm told

I can do water therapy. But, there aren't any theraputic pools or even a pool

that has stairs so that I can get in and out.

>

> Days like this are the ones that make me want to just throw my hands up in the

air!! Thanks for indulging me in a rant. I'm sure tomorrow will be better.

>

> Nan 49, MA

> List started '84

> ILD '04

> PF '08

> Asthma '09

>

[Guest guest]

Hi Miranda,

I got the mail at 8:30 this evening. So, it was too late to call anyone. I've

started a list of people I need to call in the morning. I'll be calling primary

and pulmodude both.

Can't wait for the symposium on the 12th. I can't help but feel that if I had a

pulmo that treats PF, I wouldn't have to fight the ins. co. for everything that

I need. Also, starting to feel like my primary is getting overwhelmed with the

laundry list of problems. I find it hard to juggle long enough to get the proper

care. Taking everything into consideration.

Nan 49, MA

List started '84

ILD '04

PF '08

Asthma '09

> >

> > I got a letter from my ins. saying that my O2 needs weren't severe enough to

need O2. So, I contacted my pulmodude's office. The nurse had me go in and walk.

Problem solved! (or at least I thought)

> > Well, this evening, I got another letter from ins. co. NOW they're saying

" ok, we'll pay for your O2. BUT, we'll only pay for gas tanks because liquid is

too expensive and you don't need it. "

> > The whole reason for ordering the liquid is because I have RA and

fibromyalgia and I'm not able to manage the tanks. How much do the tanks weigh?

Can anyone tell me that? I'm going on what the doc said as far as lifting them.

I've never lifted one but the doc says they're too heavy for me.

> > I live alone and if they take the liquid away, I'll be confined to the

house.

> > I was supposed to start a medically monitered exercise program this week.

But, I've had extreme pain in my knees. My primary sent me to an orthodude. He

said don't do any more walking than necessary until we figure out if this pain

is because the Prednisone that I've been taking tapers of for years has caused

aseptic necrosis. If so, that means surgery!

> > I've done everything that the doctors have told me. I've advocated for

myself in learning about this awful illness that has added it's self to my list

of problems.

> > I'm so tired of being sick and tired! I'm not even 50 and I feel like my

body is just giving up! It seems like what I need to do for one problem, I can't

do because of another problem.

> > All the exercises I can do for the breathing, bother the RA and fibro. And

all the exercises that I can do for the RA and fibro bother the breathing. I'm

told I can do water therapy. But, there aren't any theraputic pools or even a

pool that has stairs so that I can get in and out.

> >

> > Days like this are the ones that make me want to just throw my hands up in

the air!! Thanks for indulging me in a rant. I'm sure tomorrow will be better.

> >

> > Nan 49, MA

> > List started '84

> > ILD '04

> > PF '08

> > Asthma '09

> >

>