Birthday update from Irene-WARNING LONG

July 20, 2008

Hi All,

As my birthday is once again approaching,my 51st!! its time to

reflect on the past year. I dont post often but I do read the posts

as often as I can.

I have had a very stress filled year, and as we all know stress on

top of illness isn't a good thing. But I have survived another year

with this dreaded disease and all of the things that life in general

has thrown at me in the last year. Last year July the company I work

for from home was sold to new owners-the owners seem to be fine but

the new sales manager is just not qualified to be in this position.

He is hot tempered, rude and extremely inexperienced 26 year old

giving me daily worry that this company will not survive much longer.

Since he has been hired last January the company has lost seven of

the the ten people in my position and he is pushing the remaining

three to the brink, including me. My biggest problem, its impossible

to find another job that will pay me NY money to work from my NC

home. My husband is also disabled. Hw has MS and is on social

security. His SSD is $200 month short of the mortgage payment so the

$200 plus everything else in LIFE is all on me to earn. I worked for

the company in NY for the first 2 years-I was in the office for the

first 6 mos and then they allowed me to work from my home office. I

had already had 8 years of experience from my previous employer

working from home because they too knew I was ill. I could no longer

afford to live on Long Island so in Feb of 04, with their approval I

moved to NC. Its a long story but suffice it to say where I live now

there are NO jobs especially anything that will let you work from

home. I am making a lot of money compared to the people in this

state, and I need it just to cover everything. We are not living the

high life by any means but we are just getting by.

In addition to the crazy job stress my Dad who is 74 and has heart

disease and diabetes was diagnosed with bladder cancer in NY-the

doctors in NY refused to operate on him due to the other two diseases

so we packed up the parents and moved them to NC after finding a Dr

here that would perform the cancer surgery. My sister went to NY and

packed up everything they owned and last June they officially

arrived. She had bought them a house in January 07 to live in that

needed a lot of work- it took us all four months to make it a nice

home for them, I was working like crazy 1/2 hour away from my house

after working all day and working Saturdays and Sundays just to get

it ready. The surgery was done June 30,07 and went well, however the

15 hour drive for my Dad from NY had created blisters on both of his

big toes. Due to neuropathy of both of his feet from the diabetes he

didnt feel pain from this. He got a staph infection while in the

hospital on both big toes which no one realized until my 50th

Birthday. Yes my 50th birthday was horrible- my parents came but had

to leave within half an hour because my Dad felt really sick-my

sister followed them home- she took his temp and it was 105, she was

helping him get dressed to go to the hospital and saw both of his

toes were BLACK from gangerine-back for more surgery, he had to have

one removed and 1/2 of the other. between cancer treatment and IV

antibiotics he was in treatment right up until the week before

Christmas.

Then on to more family stress- my daughter got dumped by her

boyfriend of 2 1/2 years on Dec 15th. I had a hysterical 21 year old

for a few weeks. He was the " love of her life " I told her she would

be fine. She just met the new " love of her life " on this Feb 14th. on

May 10th they got engaged and told me they wanted to get married on

June 14th!! My new son in law is a marine and is being deployed to

Iraq in early Aug. They wanted to be married before he leaves. I had

the stress of why so soon- you barely know each other and all of that

but it was falling on deaf ears. No she didn't " have to " get married-

no unexpected grandchild is on the way. Keep in mind this is my only

child, a daughter, and of course and I get to pay for a wedding!! Not

only that but I literally had five WEEKS to plan the whole thing. I

love the internet- I got her a georgous designer wedding gown on EBAY

brand new for $68 including the shipping- I got silk flowers

wholesale for under $100 for all the table decorations the bouquets

the wrist corsages and everything.We had 75 invited guests., some

from California, New York and Gorgia (he is from GA) The wedding was

performed by one of the Chaplins from Camp LeJeune at a gazebo on the

on the intercoastal waterway on Topsail Island then we had the

reception in town in Sneads Ferry at the Clamdigger Resturant.

Everything was perfect and went off without a hitch but the stress

for the five weeks just about killed me doing all of the planning and

putting every last detail in place- my daughter works and wanted to

spend all her time with my son in law so she didn't do very much to

help. I have heard from every friend and relative that she is

selfish, lazy ect. I already know this but she hasn't had the easiest

life either with two sick parents. I know that doesn't give her any

excuse, but I have to just deal with it. So I have spent the last

five weeks trying to recover from the whole thing. My new son in law

was sent to California for training on July 4th so they literally

only had less than three weeks together before he left. As soon as he

comes back from training he is being sent to Iraq so this is even

more stress for at least the next 7 months.....

Physically I have had many bad days-this is not a big surprise given

the circumstances. I am now getting almost daily migraines and have

severe bone pain. I am having problems with my vision and also with

my hearing. I havent been to a real Dr since I left NY, but I have

been to the clinic in town and seen by a physicans assistant a few

times in the last 4 1/2 years I am here. She renews my RX for Fiorcet

for the migraines, but has no knowledge of NS at all. I dont think

she has any desire to read about it either. She has a copy of all my

medical records from NY but I doubt that she has ever read them. I

only go there to get the RX renewed and if I get a very bad

bronchitis or illness that she can actually do something about. The

insurance I have is basically a total waste of money- they have

covered NOTHING and I have had out of pocket expenses of over three

thousand dollars for bloodwork and a couple of EKG's at her office. I

was having very bad chest pains for a while there and she sent me for

an ultrasound of the heart. Of course I was supposed to go back to a

cardiologist for the results but I quite frankly cant afford it.

Hopefully they have the decency to call me if there was a serious

problem. I am assuming there wasnt because as soon as the office

staff heard the insurance I had she said well you would have to pay

up front and the visit will be $275 to get the results from the Dr!!!

I told her well I cant afford that and she said if you ever can let

us know. Not exactly an attitude I think is right. Anyway as I had

warned this has been very long- I thank you for the reminder about my

birthday- if not for that I may have forgotten it myself. Regards to

all and I pray you all have more pain free days than painful. Irene

>

> Reminder from: Neurosarcoidosis Yahoo! Group

> http://groups.yahoo.com/group/Neurosarcoidosis/cal

>

> Irene's Birthday

> Tuesday July 22, 2008

> All Day

> (This event repeats every year.)

>

> Notes:

> Happy Birthday Irene!

>

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July 20, 2008

Irene,

What can I say but WOW. You have had quite the year. Many ups and downs. I am happy to read that there was some positive things that happened and not all negative. I am happy your Dad turned out to be Ok after the surgery. (Still Ok right?) I hope so. He's not that old. I hope he is well. Congrats on the new addition to the family! I hope she is happy. I will hope and pray that you can now begin to slowly take a little time for yourself, and rest. Don't over do it! I'm sure you hear that alot. Does the Fioricet work for you? My doctor was going to put me back on that, but when I was on it in 2000, it didn't really do anything for me. I'm sorry to hear that you aren't feeling that well physically. I hope like I said you can take it easy a little bit, and take care of you. Have a great birthday. (At least a better one than last year!)

Christy

Subject: Birthday update from Irene-WARNING LONGTo: Neurosarcoidosis Date: Sunday, July 20, 2008, 10:21 AM

Hi All,As my birthday is once again approaching, my 51st!! its time to reflect on the past year. I dont post often but I do read the posts as often as I can.I have had a very stress filled year, and as we all know stress on top of illness isn't a good thing. But I have survived another year with this dreaded disease and all of the things that life in general has thrown at me in the last year. Last year July the company I work for from home was sold to new owners-the owners seem to be fine but the new sales manager is just not qualified to be in this position. He is hot tempered, rude and extremely inexperienced 26 year old giving me daily worry that this company will not survive much longer. Since he has been hired last January the company has lost seven of the the ten people in my position and he is pushing the remaining three to the brink, including me. My biggest problem, its impossible to

find another job that will pay me NY money to work from my NC home. My husband is also disabled. Hw has MS and is on social security. His SSD is $200 month short of the mortgage payment so the $200 plus everything else in LIFE is all on me to earn. I worked for the company in NY for the first 2 years-I was in the office for the first 6 mos and then they allowed me to work from my home office. I had already had 8 years of experience from my previous employer working from home because they too knew I was ill. I could no longer afford to live on Long Island so in Feb of 04, with their approval I moved to NC. Its a long story but suffice it to say where I live now there are NO jobs especially anything that will let you work from home. I am making a lot of money compared to the people in this state, and I need it just to cover everything. We are not living the high life by any means but we are just getting

by. In addition to the crazy job stress my Dad who is 74 and has heart disease and diabetes was diagnosed with bladder cancer in NY-the doctors in NY refused to operate on him due to the other two diseases so we packed up the parents and moved them to NC after finding a Dr here that would perform the cancer surgery. My sister went to NY and packed up everything they owned and last June they officially arrived. She had bought them a house in January 07 to live in that needed a lot of work- it took us all four months to make it a nice home for them, I was working like crazy 1/2 hour away from my house after working all day and working Saturdays and Sundays just to get it ready. The surgery was done June 30,07 and went well, however the 15 hour drive for my Dad from NY had created blisters on both of his big toes. Due to neuropathy of both of his feet from the diabetes he didnt feel pain from this. He

got a staph infection while in the hospital on both big toes which no one realized until my 50th Birthday. Yes my 50th birthday was horrible- my parents came but had to leave within half an hour because my Dad felt really sick-my sister followed them home- she took his temp and it was 105, she was helping him get dressed to go to the hospital and saw both of his toes were BLACK from gangerine-back for more surgery, he had to have one removed and 1/2 of the other. between cancer treatment and IV antibiotics he was in treatment right up until the week before Christmas. Then on to more family stress- my daughter got dumped by her boyfriend of 2 1/2 years on Dec 15th. I had a hysterical 21 year old for a few weeks. He was the "love of her life" I told her she would be fine. She just met the new "love of her life" on this Feb 14th. on May 10th they got engaged and told me they wanted to get married on

June 14th!! My new son in law is a marine and is being deployed to Iraq in early Aug. They wanted to be married before he leaves. I had the stress of why so soon- you barely know each other and all of that but it was falling on deaf ears. No she didn't "have to" get married-no unexpected grandchild is on the way. Keep in mind this is my only child, a daughter, and of course and I get to pay for a wedding!! Not only that but I literally had five WEEKS to plan the whole thing. I love the internet- I got her a georgous designer wedding gown on EBAY brand new for $68 including the shipping- I got silk flowers wholesale for under $100 for all the table decorations the bouquets the wrist corsages and everything.We had 75 invited guests., some from California, New York and Gorgia (he is from GA) The wedding was performed by one of the Chaplins from Camp LeJeune at a gazebo on the on the intercoastal

waterway on Topsail Island then we had the reception in town in Sneads Ferry at the Clamdigger Resturant. Everything was perfect and went off without a hitch but the stress for the five weeks just about killed me doing all of the planning and putting every last detail in place- my daughter works and wanted to spend all her time with my son in law so she didn't do very much to help. I have heard from every friend and relative that she is selfish, lazy ect. I already know this but she hasn't had the easiest life either with two sick parents. I know that doesn't give her any excuse, but I have to just deal with it. So I have spent the last five weeks trying to recover from the whole thing. My new son in law was sent to California for training on July 4th so they literally only had less than three weeks together before he left. As soon as he comes back from training he is being sent to Iraq so this is even

more stress for at least the next 7 months.....Physically I have had many bad days-this is not a big surprise given the circumstances. I am now getting almost daily migraines and have severe bone pain. I am having problems with my vision and also with my hearing. I havent been to a real Dr since I left NY, but I have been to the clinic in town and seen by a physicans assistant a few times in the last 4 1/2 years I am here. She renews my RX for Fiorcet for the migraines, but has no knowledge of NS at all. I dont think she has any desire to read about it either. She has a copy of all my medical records from NY but I doubt that she has ever read them. I only go there to get the RX renewed and if I get a very bad bronchitis or illness that she can actually do something about. The insurance I have is basically a total waste of money- they have covered NOTHING and I have had out of pocket expenses of

over three thousand dollars for bloodwork and a couple of EKG's at her office. I was having very bad chest pains for a while there and she sent me for an ultrasound of the heart. Of course I was supposed to go back to a cardiologist for the results but I quite frankly cant afford it. Hopefully they have the decency to call me if there was a serious problem. I am assuming there wasnt because as soon as the office staff heard the insurance I had she said well you would have to pay up front and the visit will be $275 to get the results from the Dr!!! I told her well I cant afford that and she said if you ever can let us know. Not exactly an attitude I think is right. Anyway as I had warned this has been very long- I thank you for the reminder about my birthday- if not for that I may have forgotten it myself. Regards to all and I pray you all have more pain free days than painful. Irene>> Reminder from: Neurosarcoidosis Yahoo! Group> http://groups. yahoo.com/ group/Neurosarco idosis/cal> > Irene's Birthday> Tuesday July 22, 2008> All Day> (This event repeats every year.)> > Notes:> Happy Birthday Irene!> > > All Rights Reserved> Copyright © 2008 > Yahoo! Inc.> http://www.yahoo. com> > Privacy Policy:> http://privacy. yahoo.com/

privacy/us> > Terms of Service:> http://docs. yahoo.com/ info/terms/>

July 20, 2008

Hi Christy,

Yes it sure has been one heck of a year. My Dad got a cancer free

diagnosis fromn the Dr about two weeks ago, just after teh one year

anniversary of the surgery. Thank you, God. He will have to continue

to go back every six months but thats fine. We are all thrilled that

despite it all it came out ok in the end. The Fiorcet works so far

for me still-sometimes I have to take two but it is still working

(crossing fingers). Taking it easy is a great plan, I truly have to

try that sometime, lol. On to the next disaster of my life- my AC

just died literally 1/2 an hour ago. Its original to the house and

that makes it 22 years old. I cant believe it, what lousy timing. I

live in NC, its supposed to be 99 tomorrow, ah life certainly can be

a challenge cant it? Irene

> >

> > Reminder from: Neurosarcoidosis Yahoo! Group

> > http://groups. yahoo.com/ group/Neurosarco idosis/cal

> >

> > Irene's Birthday

> > Tuesday July 22, 2008

> > All Day

> > (This event repeats every year.)

> >

> > Notes:

> > Happy Birthday Irene!

> >

> > Yahoo! Inc.

> > http://www.yahoo. com

> >

> > Privacy Policy:

> > http://privacy. yahoo.com/ privacy/us

> >

> > Terms of Service:

> > http://docs. yahoo.com/ info/terms/

> >

>

July 20, 2008

Irene,

Man, Like you said..with the air conditioning, timing is everything. But 22 years!! wow. Hope you have alot of fans available. I live in Iowa, it has been one crazy, hot and humid summer here, too. Well, I am glad to hear the good news about your Dad. Take care. It is great talking with you. I'm on here just about daily, if you need me for anything.

Christy

Subject: Re: Birthday update from Irene-WARNING LONGTo: Neurosarcoidosis Date: Sunday, July 20, 2008, 2:26 PM

Hi Christy,Yes it sure has been one heck of a year. My Dad got a cancer free diagnosis fromn the Dr about two weeks ago, just after teh one year anniversary of the surgery. Thank you, God. He will have to continue to go back every six months but thats fine. We are all thrilled that despite it all it came out ok in the end. The Fiorcet works so far for me still-sometimes I have to take two but it is still working (crossing fingers). Taking it easy is a great plan, I truly have to try that sometime, lol. On to the next disaster of my life- my AC just died literally 1/2 an hour ago. Its original to the house and that makes it 22 years old. I cant believe it, what lousy timing. I live in NC, its supposed to be 99 tomorrow, ah life certainly can be a challenge cant it? Irene > >> > Reminder from: Neurosarcoidosis Yahoo! Group> > http://groups. yahoo.com/ group/Neurosarco idosis/cal> > > > Irene's Birthday> > Tuesday July 22, 2008> > All Day> > (This event repeats every year.)> > > > Notes:> > Happy Birthday Irene!> > > > > > All Rights Reserved> > Copyright © 2008 > > Yahoo! Inc.> > http://www.yahoo. com> > >

> Privacy Policy:> > http://privacy. yahoo.com/ privacy/us> > > > Terms of Service:> > http://docs. yahoo.com/ info/terms/> >>

July 20, 2008

Irene, I'm sorry you have been through so much, I hope you now get the well deserved rest you need, it's time to take time for you. I know that staying in contact with us can sometimes be overwhelming with all the emails to read, but please know that we are

here for you, maybe you just want to vent or ask for prayers, you can just post what you need too, without worry about reading all the emails. Please know you are in our prayers, and I do hope you can get some rest now.

Peace be with you, Marla