Re: Re:New to all this- response to several posts (from Joan)

[Guest guest]

Note: Long Post ... I started writing for a "reason", but ended up rambling on and on about anything that flowed on in ...

the neurologist said it's justneurosarcoid.

Hi Lori,

Sorry you are here, but glad you found this group ... and trust me, no one will ever say "its just neurosarcoid" ... I'm hoping he/she meant "it is neurosaroid only; does not include pulmonary sarcoid" ... vs. how it sounds ... minimizing this disease.

There is nothing "just" about this disease!!! ... except perhaps, "just damn annoying and horrible".

I, too, am 43 or 44 ... I had to put my birthday on something a few days ago and swore I was 44. But that doesn't add up since I was born in '63.

Oh well, I am happy to realize I am a year younger than I thought! I was dx'ed with pulmonary sarc in 2000, then neurosarc in 2004 (but it clearly started in 2002). The thing is with this disease ... whatever I injure, hurt, bang up ... or come down with ... whatever it is that needs "fixing" by the body ... the immune system kicks in, fights way past the point of fighting that needs to be done, hence ... sarcoid in that part of my body. Example: hurt my back in 2002 ... from that point forward, I lose more and more neurological functioning since that time.

Ask your neuro if his/her body's immune system worked like that if it would "just be neurosarc"!

Oh well ... I haven't written much lately as my hands have a difficult time typing. My hands are also "neurologically challenged".

Anyway, getting back to us ... we are very close in age ... I left work 4/22/04 unable to sit, stand, lay down, walk, move, etc. ... I was in the most pain I had ever been in ... I literally crawed out to my car and had to press my lower spine, putting pressure there to move the nerve off the spine while I drove to the dr. I have been out of work since that time and am being told will never return. My poor boss is still having the girls under me cover. He refuses to fill my job ... with HR's okay. However, since my group always made my boss's boss look good while I was there, boss's boss is no longer looking so good without my being there. He wants my job filled with someone good if I cannot return by the end of this year.

Even tho it is my boss's boss' decision, my boss said he feels like he is abandoning me and turning on me. I told him that is what my body is doing to me ... my body has turned on me ... he hasn't. He said that even if I work at 50% of what I used to work at, it would still be better than what he has been dealing with for the last 2-1/2 years since I have been gone.

Also, after the first 6 months, I had no income for an entire year. I, too, had to borrow from everyone. My LTD company royally screwed me ... I thought I was protected ... paid into LTD for over 20 years. The Ins. Co. dr. only has a few years of experience; i.e., most dr.'s have never seen neurosarc, so he couldn't understand that someone could actually have it in his first few years of practice. (Also, he is in TX, while I am in NJ so he's never even examined me himself!) I had no choice but to get a lawyer. Oh, and with no income, I had to file for Bankruptcy; my bankruptcy atty lead me to my LTD attorney. I also retained a SS atty. I was lucky with SS ... they sent me to 3 of their doctors. Each one was very attentive and had great empathy for me. I was approved for SS upon the first application. The week I was approved for SS, I was also approved for LTD. However, none of my attorneys informed that I had to turn my lump sum SS check right back over to the LTD company (LTD pays 60% of my income ... after SS, that is). Anyway, even tho approved for LTD, they are withholding my checks until the balance is paid in full.

Now, I am at the next phase. My company's policy changes after 24 months. The first 24 months states "employee is unable to perform all tasks of his/her own job"; at 24 months, it changes to "employee is unable to perform any job". I am assuming that if I can stuff envelopes, I should be doing that (which I can't).

All of my dr.'s indicate I am "unemployable". I have strange "episodes" ... I go out of reality and talk about things that are not real or true. sometimes I remember and hear myself, but unable to stop. other times, I have no recollection of any of it. sometimes I hallucinate. I recently had a conversation with 2 cousins and 2 aunts in my bedroom. When I came out of whatever state I was in, no one was there ... oh, and one of the aunts I was talking to passed away last March. I am still unable to drive obviously. I could end up anywhere. I also fall asleep suddenly.

Anyway, regarding the ins. co's ... with the ERISA laws, they have absolutely nothing to lose by denying every claim that comes through their offices. You can take them to court, but there are no punitive damages...the most you can get is what they owe you originally. I am livid at this law ... it is unethical ... the ins. co.'s do not live up to their end of the contract, and their is no repercussion to them at all! But, it puts a lot of stress and hard times on the already sick and vulnerable. Fortunately, I had already sold my home before I left work. I knew I was getting physically sicker; I also had an emotional breakdown. We really need to gets these ins. co. laws changed ... people with children can lose their homes and everything they own if they should become sick!!! I am going to the Eyewitness News with this if I am denied this 24-month period. Stress makes us much sicker. I hope I can get the laws changed ... perhaps that would give my illness a "meaning" (as in "everything happens for a reason") ... there has been no "epiphany" on my part being stricken with such a serious chronic illness; no one has learned anything but anger, pain, hardship, and loss from it.

, when did you originally apply for and get denied SS? I thought you applied 2 years ago or so? If so, did you have the credits then? If so, call up a SS atty ... you might be umbrella'ed in or something. You don't need to schedule a person-to-person session with your atty ... meaning, you can do everything via the phone. I have never been to my SS atty's office.

Question to anyone who has Medicare: Beginning October, I will be receiving Medicare in addition to my employer's health insurance. Medicare will become my "primary" ins. carrier; employer's ins. will become "secondary". For those of you in similar situations, do you still pay "co-pays"? I know I need to contact my Employer's Service Center (that is what they call it) in order to find out what my employer has designated as our policy ... however, I dread doing so ... no matter what question I have ever asked -- whether it was for me or another employee -- I have always received an incorrect response ... you gotta love competent employees!

Okay, I'm done ... til I read something else that gets my mind rolling ...

Love, hugs, prayers to all,

Joan

[Guest guest]

Joan, Joannie, Joanness!!! Just here, scrambled brains like always been. You asked when I originally applied for S.S.D.I. Well that goes back to March, 2002. I found out I have Sarcoidosis after having a Ct-scan of my lungs in Janurary, 2002 and that was after having a Medianscopy (mispelled?) in December, 2001. Anyway after I applied for S.S.D.I. in March, 2002 this was denied in June, 2002. I replied in June or maybe it was July, 2002 and had a hearing downtown Grand Rapids, Michigan where hearings for S.S.D.I. take place. I got a letter of denial the second time in September, 2002. Up to late last year I believe, I thought that I was still eligible for this S.S.D.I. only until it was apparent I am was medically entitled to it. Now LO AND BEHOLD because I don't have ENOUGH work credits that I can't get this S.S.D.I. anyway. This WORK CREDITS STUFF IS A BUNCH OF B.S. Sometimes I think the whole frame of Government, the

Federal, the State, the Local, all just are SUCKSVILLE CITY!!!!!!!!!!!!!!!!!!!!! Unrelated to my response to my situation I wrote above is a example I remember I seen on Maury Povich Tv Talk Show. A year or two ago I was watching this one morning and it was one of those shows Maury has on there about "Who's the Daddy? or Who's the Father" to something of this subject matter. This woman wanted to find out who was the father of her kids. SHE JUST HAD 10 KIDS BY 8 DIFFERENT MEN AND WAS NEVER MARRIED AT ALL TO ANYONE OF THEM, PERIOD. It's like go ahead make as many babies you want even though you are not married and you can still collect Food Stamps, Medicaid (health care), and Welfare money. Bob (last name I'll leave blank) that lived for awhile across the street from where we are living now where we had lived before ourselves, got S.S.D.I. because he was soooooooooo depressed and had lower back pain due to injury in a factory. Well he may have

the pain in his lower back, but his so called depression was just a "fake". He told me he did this just so he wouldn't have to PAY ALIMONY to his exwife. There's no justice in the world here and there at times. But that has been going since Adam & Eve. I wanted to call that attorney back this last Friday. But I didn't have use of that silly thing called C-PHONE. Oh well, perhaps this Monday. 10-4, (alias )pickstands@... wrote: Note: Long Post ... I started writing for a "reason", but ended up rambling on and on about anything that flowed on in ... In a message dated 8/22/2006 3:49:26 P.M. Eastern Standard Time, mosaicgirl1 (AT) yahoo (DOT) com writes: the neurologist said it's justneurosarcoid. Hi Lori, Sorry you are here, but glad you found this group ... and trust me, no one will ever say "its just neurosarcoid" ... I'm hoping he/she meant "it is neurosaroid only; does not include

pulmonary sarcoid" ... vs. how it sounds ... minimizing this disease. There is nothing "just" about this disease!!! ... except perhaps, "just damn annoying and horrible". I, too, am 43 or 44 ... I had to put my birthday on something a few days ago and swore I was 44. But that doesn't add up since I was born in '63. Oh well, I am happy to realize I am a year younger than I thought! I was dx'ed with pulmonary sarc in 2000, then neurosarc in 2004 (but it clearly started in 2002). The thing is with this disease ... whatever I injure, hurt, bang up ... or come down with ... whatever it is that needs "fixing" by the body ... the immune system kicks in, fights way past the point of fighting that needs to be done, hence ...

sarcoid in that part of my body. Example: hurt my back in 2002 ... from that point forward, I lose more and more neurological functioning since that time. Ask your neuro if his/her body's immune system worked like that if it would "just be neurosarc"! Oh well ... I haven't written much lately as my hands have a difficult time typing. My hands are also "neurologically challenged". Anyway, getting back to us ... we are very close in age ... I left work 4/22/04 unable to sit, stand, lay down, walk, move, etc. ... I was in the most pain I had ever been in ... I literally crawed out to my car and had to press my lower spine, putting pressure there to move the nerve off the spine while I drove to the dr. I have been out of work since that

time and am being told will never return. My poor boss is still having the girls under me cover. He refuses to fill my job ... with HR's okay. However, since my group always made my boss's boss look good while I was there, boss's boss is no longer looking so good without my being there. He wants my job filled with someone good if I cannot return by the end of this year. Even tho it is my boss's boss' decision, my boss said he feels like he is abandoning me and turning on me. I told him that is what my body is doing to me ... my body has turned on me ... he hasn't. He said that even if I work at 50% of what I used to work at, it would still be better than what he has been dealing with for the last 2-1/2 years since I have been gone. Also, after the first 6 months, I had no income for an

entire year. I, too, had to borrow from everyone. My LTD company royally screwed me ... I thought I was protected ... paid into LTD for over 20 years. The Ins. Co. dr. only has a few years of experience; i.e., most dr.'s have never seen neurosarc, so he couldn't understand that someone could actually have it in his first few years of practice. (Also, he is in TX, while I am in NJ so he's never even examined me himself!) I had no choice but to get a lawyer. Oh, and with no income, I had to file for Bankruptcy; my bankruptcy atty lead me to my LTD attorney. I also retained a SS atty. I was lucky with SS ... they sent me to 3 of their doctors. Each one was very attentive and had great empathy for me. I was approved for SS upon the first application. The week I was approved for SS, I was also approved for LTD. However, none of my attorneys informed that I had to turn my lump sum SS check right

back over to the LTD company (LTD pays 60% of my income ... after SS, that is). Anyway, even tho approved for LTD, they are withholding my checks until the balance is paid in full. Now, I am at the next phase. My company's policy changes after 24 months. The first 24 months states "employee is unable to perform all tasks of his/her own job"; at 24 months, it changes to "employee is unable to perform any job". I am assuming that if I can stuff envelopes, I should be doing that (which I can't). All of my dr.'s indicate I am "unemployable". I have strange "episodes" ... I go out of reality and talk about things that are not real or true. sometimes I remember and hear myself, but unable to stop. other times, I have no recollection of any of it. sometimes I hallucinate. I

recently had a conversation with 2 cousins and 2 aunts in my bedroom. When I came out of whatever state I was in, no one was there ... oh, and one of the aunts I was talking to passed away last March. I am still unable to drive obviously. I could end up anywhere. I also fall asleep suddenly. Anyway, regarding the ins. co's ... with the ERISA laws, they have absolutely nothing to lose by denying every claim that comes through their offices. You can take them to court, but there are no punitive damages...the most you can get is what they owe you originally. I am livid at this law ... it is unethical ... the ins. co.'s do not live up to their end of the contract, and their is no repercussion to them at all! But, it puts a lot of stress and hard times on the already sick and vulnerable. Fortunately, I had already sold my home before I left work. I knew I

was getting physically sicker; I also had an emotional breakdown. We really need to gets these ins. co. laws changed ... people with children can lose their homes and everything they own if they should become sick!!! I am going to the Eyewitness News with this if I am denied this 24-month period. Stress makes us much sicker. I hope I can get the laws changed ... perhaps that would give my illness a "meaning" (as in "everything happens for a reason") ... there has been no "epiphany" on my part being stricken with such a serious chronic illness; no one has learned anything but anger, pain, hardship, and loss from it. , when did you originally apply for and get denied SS? I thought you applied 2 years ago or so? If so, did you have the credits then? If so, call up a SS atty ... you might be umbrella'ed in or something. You don't

need to schedule a person-to-person session with your atty ... meaning, you can do everything via the phone. I have never been to my SS atty's office. Question to anyone who has Medicare: Beginning October, I will be receiving Medicare in addition to my employer's health insurance. Medicare will become my "primary" ins. carrier; employer's ins. will become "secondary". For those of you in similar situations, do you still pay "co-pays"? I know I need to contact my Employer's Service Center (that is what they call it) in order to find out what my employer has designated as our policy ... however, I dread doing so ... no matter what question I have ever asked -- whether it was for me or another employee -- I have always received an incorrect response ... you gotta love competent employees! Okay,

I'm done ... til I read something else that gets my mind rolling ... Love, hugs, prayers to all, Joan

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.