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Pink Joyce,

I wish I didn't have to, but my family has health insurance thru my company so

until a doctor tells me to stay home I have to go. I'm just so glad they are so

understanding here and everyone is always joking around. For example, a

co-worker went to see U2 in concert and she and her husband were in the last row

of Giants Stadium. She said to her husband, " I should have borrowed nne's

portable oxygen " and I told her I would have definitely charged her for renting

it. (LOL)- nne

> >

> > I want to let you know that the UTI could be making you feel so rotten that

is what happened to me the antibiotics they gave me werent doing the trick .

Stay on top with the infection and ask for something more potent if possible .

Take care of yourself . I felt just like you do .

> > IPF sclerodrema sjogrens raynauds Il

> >

>

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  • 3 weeks later...

nne,

Boy do I wish there was something I could say to make this all go away. My magic wand just doesn't work anymore.

I'm sorry about the Sjorgrens and I hope they can get it under control without too much difficulty.

That co-pay (I'm assuming it's a co-pay) for your pulmonary rehab is horrible. Back in 2006 when my insurance was with Aetna I had a $20 monthly co-pay for pulmonary rehab but that was it. Total $60. Yours is really high. May I make a suggestion? I would talk to the folks at Hackensack Hospital to see if some or all of that co-pay can be waived. They may have some type of financial hardship program (many many hospitals do) It doesn't hurt to ask, the worst they can say is "I'm sorry, no." And they might very well say yes. I've gotten help like that in the past and I've learned to ask.

Please know that you are in my thoughts and prayers.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 26, 2009 9:07:18 PMSubject: Re: MamaSher to PJ re Sjogren's

Sher,I can't believe on the same day I get a Sjogren's diagnosis I log on and find you facing the same thing! I had my evaluation at NY Presbyterian on Oct 16 and I told the pulmo dr about the muscle pain/weakness, low grade fever that comes and goes and swelling in my joints especially my hands and I have had dry eyes, dry mouth and dental problems for at least 2 yrs. I have been in constant pain for about a month, my local pulmo dude gave me antibiotics thinking it was a URI but nothing changed and he took blood which showed a high SED rate. The Presbyterian pulmo took more blood work and I got the news today that I definitely have Sjogren's and polymyalgia. So now I know how my lungs got damaged. Two rheumatologists thought I had fibromyalgia because the muscle pain started in 2005 and blood work was always negative. Ironically my diagnosis of asthma was also in 2005.The pulmo-dudette at Presbyterian said that unless collagen vascular

disease is under control I cannot be considered for a transplant since my body will start attacking the new lungs. Also I have a weight issue so I have to loose weight. Anyway I start Pulmonary Rehab at Hackensack University Hospital in North Jersey near my office on Friday. It will be for 8 weeks, 3 days a week and I have to pay $30.00 per session according to Cigna. Where is this money coming from????? We have already told our kids and family-no xmas presents this year. BTW- if the rehab goes into new year if I miss a session it will be $40.00. I just LOVE having health insurance. This year our share of medical bills have been piling up. I drag myself to work most of the time in pain since it's worse in the morning. The earliest I can see rheumy is Nov 5 and Alleve does NOTHING for the pain. My hands are so weak- I am always dropping things and can barely hold the steering wheel to drive to work. But I have to go, my family relies on me for insurance.

I wish I could just die already- I hate being a burden on my family like this.nne, ILD 6/09, Sjogren's 10/09 > > > > > > > > Hi > > all,> > > > iIwas having problems with 2 CORNS on my feet.One of them > > has been > > > > with me for 25 yrs now . i am in pain all > > the time , i used corn caps > > > > andid all sorts of > > thing s even excised them from time to time but > > > > > > they kept coming back , here i am house bound stay in a prtotected > > > > > > envirnment all day why should i have the at all,? but they > > were > > > > making life hell fo rme , though imust say > > have a lot of tolerance

> > > > for pain.> > > > > > To cut it short I decided to get them removed surgically.last > > week i > > > > went to a nearby > > hospital and met a gen .surgeon there who said it > > > > > > was a simple enough thing he would excise them and cautorise > > if > > > > necssary.> > > > he did that and put > > stitch too for the smaller one but he couldnt > > > > > > stitch the bigger corn which was excatly in the centre of my > > heel > > > > about 3mm in diameter and he gored > > it deep and removed it. he told > > > > me not > > to step on it for a few days .Easier said than done ,when > >

i > > > > reached home and was trying to get on to the > > wheelchair from the car > > > > my foot accidently came > > down , Gosh !!!it started gushing bloodi > > > > > > immediedetely lost at least 300ml. of blood ,we drove back to > > the > > > > hospital where ithe dotcor s and nurses > > stemmed the bleeding and he > > > > had to stitich and > > cautorise again . It was so much painn and agony > > > > > > all bought on myself. since then I have been moving about on > > the > > > > wheel chair and the foot ist still healing > > .> > > > I shoulnt have come home at once after the procedure ,and > > the doctor >

> > > sholndnt have sent me home at once. It > > was a costly mistake.i bleed > > > > very easily asnd he > > kept saying he did not expect so much blood from > > > > > > the hee! !This was second episode of bleeding after my nose > > bleed > > > > 2yrs back> > > > > > > > > > Lesson to be learnt ' be careful all the > > time'> > > > > > Geeta> > > >>

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/ Beth,

Thank you for responding. I just feel so alone with all this. The latest

obstacle for the pulmon rehab is time away from work. HR is looking into whether

the co short term disability can kick in but if it can't I am going to be

getting less pay per week. Plus now that I will have a rheumy doc to see

regularly, there's more money I don't have. But enough complaining- I should be

thankful that God has given me one more day of life since I'm trying to only

think one day at a time. It's kind of ironic with all this pain I'm feeling

especially pain and numbness in my hands- I almost forget that I can't breathe

too-I've been forgetting to use my O2!

> >

> >

> > >

> >

> >

> > > Hi

> >

> > all,

> >

> >

> > > iIwas having problems with 2 CORNS on my feet.One of them

> >

> > has been

> >

> >

> > > with me for 25 yrs now . i am in pain all

> >

> > the time , i used corn caps

> >

> >

> > > andid all sorts of

> >

> > thing s even excised them from time to time but

> >

> >

> > >

> >

> > they kept coming back , here i am house bound stay in a prtotected

> >

> >

> >

> >

> > > envirnment all day why should i have the at all,? but they

> >

> > were

> >

> >

> > > making life hell fo rme , though imust say

> >

> > have a lot of tolerance

> >

> >

> > > for pain.

> >

> >

> > >

> >

> > To cut it short I decided to get them removed surgically.last

> >

> > week i

> >

> >

> > > went to a nearby

> >

> > hospital and met a gen .surgeon there who said it

> >

> >

> > >

> >

> > was a simple enough thing he would excise them and cautorise

> >

> > if

> >

> >

> > > necssary.

> >

> >

> > > he did that and put

> >

> > stitch too for the smaller one but he couldnt

> >

> >

> > >

> >

> > stitch the bigger corn which was excatly in the centre of my

> >

> > heel

> >

> >

> > > about 3mm in diameter and he gored

> >

> > it deep and removed it. he told

> >

> >

> > > me not

> >

> > to step on it for a few days .Easier said than done ,when

> >

> > i

> >

> >

> > > reached home and was trying to get on to the

> >

> > wheelchair from the car

> >

> >

> > > my foot accidently came

> >

> > down , Gosh !!!it started gushing bloodi

> >

> >

> > >

> >

> > immediedetely lost at least 300ml. of blood ,we drove back to

> >

> > the

> >

> >

> > > hospital where ithe dotcor s and nurses

> >

> > stemmed the bleeding and he

> >

> >

> > > had to stitich and

> >

> > cautorise again . It was so much painn and agony

> >

> >

> > >

> >

> > all bought on myself. since then I have been moving about on

> >

> > the

> >

> >

> > > wheel chair and the foot ist still healing

> >

> > .

> >

> >

> > > I shoulnt have come home at once after the procedure ,and

> >

> > the doctor

> >

> >

> > > sholndnt have sent me home at once. It

> >

> > was a costly mistake.i bleed

> >

> >

> > > very easily asnd he

> >

> > kept saying he did not expect so much blood from

> >

> >

> > >

> >

> > the hee! !This was second episode of bleeding after my nose

> >

> > bleed

> >

> >

> > > 2yrs back

> >

> >

> > >

> >

> >

> > >

> >

> > Lesson to be learnt ' be careful all the

> >

> > time'

> >

> >

> > >

> >

> > Geeta

> >

> >

> > >

> >

>

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