Jump to content


Rate this topic

Guest guest

Recommended Posts

Good morning!

I'm feeling better today, the last time I was sick to my stomach was around 10 o'clock last night so I think the worst is over. I feel tired today and definitely not hungry but I think I'll live.

I'm so glad you took a trial run in the camper. It's too long of a trip to be in an uncomfortable vehicle. I'm not going to worry, I know will take good care of you but you take good care of him too!

I'll talk to you before you go. Happy New Year!!!

Love ya!

Beth in North Carolina


Fibrotic NSIP 06/06 Dermatomyositis 11/08


To: Breathe-Support Sent: Wednesday, December 31, 2008 10:36:41 PMSubject: Re: Re: new and scaredMB, NO GETTING SICKKKKK.. Thats the RULE.. I am going to report you-- to somebody--

Happy New Year Nurse , Wonderful Moderator, and mainly good friend..

My nephew isn't doing well. He is on comfort only. He has about 3 or 4 codes today.

Just unbelievable.

We took the Motor home down to pick Ray up and I am so disappointed.. I hurt my back yesterday and

just can't get comfortable in it. The drivers seat is a bit small and tight for so I think we are just going to

take my car. I can stuff the back seat with pillows and get comfy. Oh well It sure did look like a perfect trip.

I am just so glad we did a trial trip. Anyhow I am not sure but I think we will leave Sunday after Church.

I'll let ya know. Please Take Care of you.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."


I will answer this in more detail tomorrow but for now I can tell you that there is a 6 month waiting period from the date you become disabled till you can begin collecting SSDI. If you quit work on April 1,2009 that is likely the date they will pick as "date of disability". My last day of work was May 26, 2006 and that was my "date of disability". That means you will be eligible for payment of your SSDI October 1, 2009.

Prior to collecting SSDI my company paid my full salary for 10 weeks after I stopped working and after that I was able to collect NY Workers Comp for a non work related illness for I believe it was 3 months.

Medicare won't begin until after you've been on SSDI for 2 years. I began collecting SSDI in November of 06 and my Medicare coverage just began in November of 08.

I'm going to go back to my recliner for now, since I seem to have a pukey stomach bug. I'll answer more in depth tomorrow.

Please yell and scream till you get the doctors to listen to you!!

Beth in North Carolina


Fibrotic NSIP 06/06 Dermatomyositis 11/08


From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, December 31, 2008 8:39:46 PMSubject: Re: Re: new and scared

Ok, let me try this again!! DUH!!!

Hi MB!!

I was wondering about filing for disability. I am PLANNING to work until April if at all possible and then quitting my job and filing for disability. I have a disability plan through work that pays up to $1000/month for 2 years (dependent on what SSDI pays). I got a letter in the mail the other day from SS that says if I were to become disabled this year, what the amount would be per month (which was around $1250). I know there is usually a waiting period for somewhere between a month or two to maybe even 6 months. My question is that I have heard some people when they get their first check get back paid from the date they filed. I was planning not to count on anything except the monthly amount (that way I wouldn't be disappointed if I didn't get anything else). I am a little scared I won't be able to float during the waiting period, but I am hoping my pulmo doc will help me out with

some samples until I get approved as far as the meds go. Several of my meds are on the Wal-Mart $4 plan, so that will help, but some do not have generic and those are quite expensive, as most of us already know! Anything you know that could help move my application along faster would be greatly appreciated! ! I would try anything at this point.

For the weight issue, I have managed to put on another 10 pounds through the Holidays and cannot seem to lose any. I bought all of this salad stuff and ate healthy yesterday, but today, I was just thinking, gosh, that doesn't even look good!! I guess I am going to have to make myself eat it!! I can't exercise much any more because of the back problems and it is too cold to get outside and walk. Really limited on the exercise at this stage. I was thinking of purchasing a treadmill, but I am in small apartment and really don't have room for it.

Also, I am a little, well a lot, disappointed in my pulmo office right now. I have been sick for 6 weeks now with cough, wheezing, congestion, headache, sore throat, flu/pneumonia symptoms, and the coughing is not helping the back any at all. I have called them 4 times already, twice to tell them I have been coughing up yellow/green sputum with blood in it. I have been through 2 rounds of antibiotics and I thought I was beginning to get some better yesterday (maybe it was the veggies! Anyhoo, today I am feeling crappy again. Nose is all stuffed up and my chest is burning and I feel really tired again. I even took a nap this afternoon

for 2 hours when I finished work. Clinic is closed tomorrow, so can't call them until Friday. (They don't even have an answering service!!) I feel if I call, all they will do is call me in another round of antibiotics. What I want to know is why has he not even called me in to even listen to my chest or anything? Sometimes I feel like I am just another list on his paycheck.

I thought it was kinda funny though, that after 8-1/2 years, I chose to quit my job the first week of April. Guess I am going to call in and say

Hear me talk! !! I'm gettin'the heck out of dodge!!


From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: new and scaredTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 31, 2008, 6:16 PM


Sher is absolutely correct. I don't know where you heard that most IPF patients die before getting disability but it's simply not true. My SSDI was approved in less than 6 months. I remember one specific individual in this group whose SSDI was approved in less than 2 months.

If you decide to go down that road there are things you can do to help your application along and increase your chances of being approved quickly.

I also feel your pain on the weight issue. I've struggled with my weight since I was a teenager and that struggle is not helped now by how difficult it is to exercise safely. I am losing weight but very slowly. I just keep trying to move in that direction and not stress over it.

I've been living with pulmonary fibrosis for two and a half years now and for that entire time I've been on oxygen 24/7. It is possible to continue to live a good and productive life with supplemental O2. You are not alone!!

Beth in North Carolina


Fibrotic NSIP 06/06 Dermatomyositis 11/08


From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, December 31, 2008 6:34:44 PMSubject: Re: Re: new and scared

Eileen...your last line reads 'most IPF pts die before getting disability'. ..I don't think that is true. There are some on the board who have disability.. . Beth for one. I'm already on S/S so I cannot apply for SDI. Those who have it will respond to you I'm sure.

I know, losing weight is so difficult and especially if you're on prednisone.

Don't panic Eileen, you are not going to die next week. I thought I was going to die in a matter of days when I was first dx. It will be three years ago in March.

I hope you will consider filing for SDI. Lots of us here on it... that may help your worry about the house/salary needed. Are 's wages enough to keep you afloat?

Take a deep breath and just forge ahead. We're all here for you and you will learn many helpful things.

Keep on keepin' on...

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

new and scared> > > Hi > My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have > actually been doing very well till this Thanksgiving. I got the flu > and my oxygen dropped. The doctor put me on 02 temporarily saying he > thought I would go back up but I have not. Monday he told me I have to > face the possibility my fibrosis has worsened and I will need to stay > on 02. I happen to be off from work this week so I am trying to take > it easy but I am scared. I am so tired. How am I going to keep > working? If I don't work we will lose our house. Not a good market to > have to sell now. I am just scared and need someone who knows what it > is like to talk to.>

Link to comment
Share on other sites

  • 1 month later...


Well, rest enough tomorrow to make up for today and the blood vultures

tomorrow. I swear sometimes I think about what if I'd just sold all this

blood to some blood bank or something instead. I might be rich. Between

22 tubes in Chicago and one period of it being taken 4 out of 5 days.

Now mainly my rheumatologist and nephrologist but that adds up to more

than once a month before adding any others.



> Hi Bev,

> I also use individual email to get the messages from the board. I

tried the Digest version when I first came to the board and didn't care

for it for the same reasons you gave. Yahoo needs to work on that a

bit. In my opinion it doesnt' work very well.

> I hope you are feeling ok today. I had a very long day and I am pooped

this afternoon!


> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08





> ________________________________

> From: sparrow_98367 sparrow4 (AT) localnet (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Monday, February 2, 2009 4:18:47 PM

> Subject: daily digest



> I have just switched back to individual e-mail. I can't handle the

> digests. I get too many and much of the same over and over. I click to

> try to answer a post and nothing happens. None of the links work. Then

> I go to the site and I can't always find the post that I want to

> answer. I can't get high speed internet here except for satellite and

> I can't afford that. Anyhow, I wanted to answer the post from . I

> lived in Port Orchard for 40 years. I still feel like that is home. My

> breathing problems have always been worse here where it is dry. My

> nose is so dry here that it scabs up and bleeds. I have been to

> Aberdeen several times but it was always pouring rain when I was

> there. Port Orchard doesn't seem to have as much as they do closer to

> the ocean. I had a son who passed away in 2004. He lived in Olympia.

> My grandson still lives there. I have a daughter in Gig Harbor and

> sons in Port Orchard and Lynnwood. I need to get back there where they

> can help me some. Maybe after living here for over 4 years I might

> have trouble getting acclimatized again but I doubt it. I hate it

> here. In the winter it is too cold to go outside and in the summer it

> is too hot. I have never had problems going out in the rain. I have

> been to Phoenix a few times and I can't breathe there because it is

> just too hot. I have never done well with hot weather. I have gotten

> so many questions answered in the short time that I have been with

> this group. It is great. I think that I made a mistake last night. I

> vented to my fibro group. There are only about 8 of us who post and I

> have been with them for so many years that they are my friends. They

> don't understand what I am going through though. Fibro. isn't

> terminal. Just very painful and tiring. Bev


Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...