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Tracie, this is good advice as I was also advised to file when I was employed. However, you might expect to be "legally" terminated because some employers are beginning to see this as a liability. Nonetheless, it is the best solution in case you require surgery or something and need compensation. I would advise all the patients to utilize FMLA - it really worked for me! L. -Maye, Baltimore

To: Neurosarcoidosis Sent: Mon, December 14, 2009 2:56:41 PMSubject: Re: FMLA

Mitch, a second thought here-- you said you are still working and all. Make sure you file for FMLA--the federal FAMILY MEDICAL LEAVE ACT. It protects you if you need to take an extended leave of absence for either you taking care of you, or you taking care of your mom. What it does is pay you unemployment for the hours you can't be at work do to illness and caretaking, and you can't lose your job because of needing to do these things.

Take care,

Tracie

NS Co-owner/moderator

From: "mjcv29a (AT) aol (DOT) com" <mjcv29a (AT) aol (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Mon, December 14, 2009 4:46:08 AMSubject: Re: Coping with it all.

Rach,

I haven't been on much because I've been trying to be Superman, I lost my 'Father 3.5 years ago from NHL, I was diagnosed with Sarcoid 2.5 years ago but I've been sick with it for 8 years (it started in my nervous system and everyone diagnosed it) like it's normal for a man in his 40's to get 4-6 upper respiratory infections a year (1-2 of them turning into pneumonia, atetletecsis and pleural effusions), have on and off use of his right arm etc. When I was diagnosed it was the worst case anyone around here had seen, I had over 30 large lyph node site and the Cat and PET scan both said NHL. For 3 weeks they told me I had the same Cancer my Father (who I had just gotten over the severe grieving from) ( I made one of the decisions that killed him, long story for another time) The first pulmonologist told said "I would be his test case" because he had never seen it so bad. needless to say I'm no one's test case (without knowing it lol)

i found a great pulmonologist in NY who was in on a lot of the earlier research at Mt. Sinai and calls himself a "Sarcoidologist" but when it's not in my chest he just calls me an 'oddball' says it's a 'painless disease' lol .

4 weeks ago we found a mass in my Mother's lung and between me and my sister's we've been going back and 4th to NY and last week (2 weeks ago today I think) we found out it was lung cancer and they removed 1/2 her left lobe. I'm working from 9-8 today then driving to NJ to be able to take her at 7am on wed to NY.

I haven't had a moment for myself because the Sarcoid has been acting up for the past 3 weeks, breathing is a problem, my bones and joints are killing me, I can hardly use my arm and now my right eye is painful (new one) putting meds in but not helping. I'm back on Methotrexate and my prednisone is between 20-40 mg of all meds i hate that one the most)

You ask how we survive, because it still beats the alternative lol, seriously, it was finding this board about 2 months ago that allows me to get up every morning and do what I have to do. The support and love I received instantly, knowing I wasn't an "oddball' and that there are many other's who went through or are going through what I did is a comfort, why I don't know except I know I'lll never be alone again.

look around, it may not be a comfort to you but i see how many other's have it so worse then I do (not just this disease but everything, other disease's, family problems, life problems)

Count your blessings and not just the curses, it will be ok, I promise. It will be better, if not you can come and kick my ass (shouldn't be that hard, lol)

Good luck and remember there are so many people to lean on here

Mitch

Coping with it all.

When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?Rach

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I agree. File the FMLA. I am in the process of filing as a care giver in case I have to take time out to take care of . I currently teach and am working with my personnel department to file the necessary paperwork. Just in caseTake caremattSubject: Re: FMLATo: Neurosarcoidosis Date: Monday, December 14, 2009, 5:23 PM

Tracie, this is good advice as I was also advised to file when I was employed. However, you might expect to be "legally" terminated because some employers are beginning to see this as a liability. Nonetheless, it is the best solution in case you require surgery or something and need compensation. I would advise all the patients to utilize FMLA - it really worked for me! L. -Maye, Baltimore

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Mon, December 14, 2009 2:56:41 PMSubject: Re: FMLA

Mitch, a second thought here-- you said you are still working and all. Make sure you file for FMLA--the federal FAMILY MEDICAL LEAVE ACT. It protects you if you need to take an extended leave of absence for either you taking care of you, or you taking care of your mom. What it does is pay you unemployment for the hours you can't be at work do to illness and caretaking, and you can't lose your job because of needing to do these things.

Take care,

Tracie

NS Co-owner/moderator

From: "mjcv29a (AT) aol (DOT) com" <mjcv29a (AT) aol (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Mon, December 14, 2009 4:46:08 AMSubject: Re: Coping with it all.

Rach,

I haven't been on much because I've been trying to be Superman, I lost my 'Father 3.5 years ago from NHL, I was diagnosed with Sarcoid 2.5 years ago but I've been sick with it for 8 years (it started in my nervous system and everyone diagnosed it) like it's normal for a man in his 40's to get 4-6 upper respiratory infections a year (1-2 of them turning into pneumonia, atetletecsis and pleural effusions), have on and off use of his right arm etc. When I was diagnosed it was the worst case anyone around here had seen, I had over 30 large lyph node site and the Cat and PET scan both said NHL. For 3 weeks they told me I had the same Cancer my Father (who I had just gotten over the severe grieving from) ( I made one of the decisions that killed him, long story for another time) The first pulmonologist told said "I would be his test case" because he had never seen it so bad. needless to say I'm no one's test case (without knowing it lol)

i found a great pulmonologist in NY who was in on a lot of the earlier research at Mt. Sinai and calls himself a "Sarcoidologist" but when it's not in my chest he just calls me an 'oddball' says it's a 'painless disease' lol .

4 weeks ago we found a mass in my Mother's lung and between me and my sister's we've been going back and 4th to NY and last week (2 weeks ago today I think) we found out it was lung cancer and they removed 1/2 her left lobe. I'm working from 9-8 today then driving to NJ to be able to take her at 7am on wed to NY.

I haven't had a moment for myself because the Sarcoid has been acting up for the past 3 weeks, breathing is a problem, my bones and joints are killing me, I can hardly use my arm and now my right eye is painful (new one) putting meds in but not helping. I'm back on Methotrexate and my prednisone is between 20-40 mg of all meds i hate that one the most)

You ask how we survive, because it still beats the alternative lol, seriously, it was finding this board about 2 months ago that allows me to get up every morning and do what I have to do. The support and love I received instantly, knowing I wasn't an "oddball' and that there are many other's who went through or are going through what I did is a comfort, why I don't know except I know I'lll never be alone again.

look around, it may not be a comfort to you but i see how many other's have it so worse then I do (not just this disease but everything, other disease's, family problems, life problems)

Count your blessings and not just the curses, it will be ok, I promise. It will be better, if not you can come and kick my ass (shouldn't be that hard, lol)

Good luck and remember there are so many people to lean on here

Mitch

Coping with it all.

When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?Rach

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please stop all emails to me in the future. margaretshepherd@...

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: FMLATo: Neurosarcoidosis@ yahoogroups. comDate: Monday, December 14, 2009, 11:56 AM

Mitch, a second thought here-- you said you are still working and all. Make sure you file for FMLA--the federal FAMILY MEDICAL LEAVE ACT. It protects you if you need to take an extended leave of absence for either you taking care of you, or you taking care of your mom. What it does is pay you unemployment for the hours you can't be at work do to illness and caretaking, and you can't lose your job because of needing to do these things.

Take care,

Tracie

NS Co-owner/moderator

From: "mjcv29a (AT) aol (DOT) com" <mjcv29a (AT) aol (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Mon, December 14, 2009 4:46:08 AMSubject: Re: Coping with it all.

Rach,

I haven't been on much because I've been trying to be Superman, I lost my 'Father 3.5 years ago from NHL, I was diagnosed with Sarcoid 2.5 years ago but I've been sick with it for 8 years (it started in my nervous system and everyone diagnosed it) like it's normal for a man in his 40's to get 4-6 upper respiratory infections a year (1-2 of them turning into pneumonia, atetletecsis and pleural effusions), have on and off use of his right arm etc. When I was diagnosed it was the worst case anyone around here had seen, I had over 30 large lyph node site and the Cat and PET scan both said NHL. For 3 weeks they told me I had the same Cancer my Father (who I had just gotten over the severe grieving from) ( I made one of the decisions that killed him, long story for another time) The first pulmonologist told said "I would be his test case" because he had never seen it so bad. needless to say I'm no one's test case (without knowing it lol)

i found a great pulmonologist in NY who was in on a lot of the earlier research at Mt. Sinai and calls himself a "Sarcoidologist" but when it's not in my chest he just calls me an 'oddball' says it's a 'painless disease' lol .

4 weeks ago we found a mass in my Mother's lung and between me and my sister's we've been going back and 4th to NY and last week (2 weeks ago today I think) we found out it was lung cancer and they removed 1/2 her left lobe. I'm working from 9-8 today then driving to NJ to be able to take her at 7am on wed to NY.

I haven't had a moment for myself because the Sarcoid has been acting up for the past 3 weeks, breathing is a problem, my bones and joints are killing me, I can hardly use my arm and now my right eye is painful (new one) putting meds in but not helping. I'm back on Methotrexate and my prednisone is between 20-40 mg of all meds i hate that one the most)

You ask how we survive, because it still beats the alternative lol, seriously, it was finding this board about 2 months ago that allows me to get up every morning and do what I have to do. The support and love I received instantly, knowing I wasn't an "oddball' and that there are many other's who went through or are going through what I did is a comfort, why I don't know except I know I'lll never be alone again.

look around, it may not be a comfort to you but i see how many other's have it so worse then I do (not just this disease but everything, other disease's, family problems, life problems)

Count your blessings and not just the curses, it will be ok, I promise. It will be better, if not you can come and kick my ass (shouldn't be that hard, lol)

Good luck and remember there are so many people to lean on here

Mitch

Coping with it all.

When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?Rach

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