Re: Chronic illness/Relationships

March 22, 2004

Pat,

So many of us, in fact all of us had had to deal with this same issue.

One of the biggest things that happens with chronic illness is that because

it doesn't have a crutch, cast, bandage, IV, baldness, and can't be treated

with a 10 day course of antibiotics, we must be faking it.

There is a wonderful booklet, BUT YOU LOOK GOOD!, that is written by a woman

that has MS and NS (I believe.) Use this address to read the first section:

http://groups.yahoo.com/group/Neurosarcoidosis/links

I know many of us have invested in several copies of this booklet, and in

sharing them with friends and family, along with an explanation that it is a

" must read " , so that they too can understand what you are going thru.

Pat, I hope this helps.

Tracie

March 23, 2004

Tracie, I have a question, that book by Ida, can you buy it at a bookstore,

I have to put my charge card info on the internet because last year someone

got my info off the internet and charged up mega stuff that we basically had

to pay for in the long run. I got some of the money back but it was a mess.

I hope things are going better for you today and that you have a good day.

I have to go to the hospital for the neurosurgeon to drain fluid oh yeah,

but hopefully will be back later this evening. Your friend in Texas

-- Re: Chronic illness/Relationships

Pat,

So many of us, in fact all of us had had to deal with this same issue.

One of the biggest things that happens with chronic illness is that because

it doesn't have a crutch, cast, bandage, IV, baldness, and can't be treated

with a 10 day course of antibiotics, we must be faking it.

There is a wonderful booklet, BUT YOU LOOK GOOD!, that is written by a woman

that has MS and NS (I believe.) Use this address to read the first section:

http://groups.yahoo.com/group/Neurosarcoidosis/links

I know many of us have invested in several copies of this booklet, and in

sharing them with friends and family, along with an explanation that it is a

" must read " , so that they too can understand what you are going thru.

Pat, I hope this helps.

Tracie

March 23, 2004

Tracie, by the way if you couldn't figure out what I was trying to say I

meant I hate to put my charge card info on the internet not I have to. And

this is from Jeanna. Boy I need to go and see if I left my brain in the bed

or something, ha. Your friend in Texas, Jeanna

-- Re: Chronic illness/Relationships

Pat,

So many of us, in fact all of us had had to deal with this same issue.

One of the biggest things that happens with chronic illness is that because

it doesn't have a crutch, cast, bandage, IV, baldness, and can't be treated

with a 10 day course of antibiotics, we must be faking it.

There is a wonderful booklet, BUT YOU LOOK GOOD!, that is written by a woman

that has MS and NS (I believe.) Use this address to read the first section:

http://groups.yahoo.com/group/Neurosarcoidosis/links

I know many of us have invested in several copies of this booklet, and in

sharing them with friends and family, along with an explanation that it is a

" must read " , so that they too can understand what you are going thru.

Pat, I hope this helps.

Tracie

March 23, 2004

In a message dated 3/23/04 6:40:33 AM Pacific Standard Time,

Jeanna@... writes:

> that book by Ida, can you buy it at a bookstore,

>

This booklet, by Invisible Disabilities Advocate, is not available in

bookstores. You can order and send a check directly. They do have that option.

It

is so worth the investment. I know that the Caring Ministry at our church has

purchased multiple copies for the people that do the home ministry program

for the shut-ins. Great teacher for them.

Tracie

March 23, 2004

LOL! I got it-- and boy do I understand that part of leaving one's brain

behind.

Speaking of which-- has anyone seen mine lately.

Hugs,

Tracie

March 23, 2004

Pat,

It is so good to see you posting again. I'm glad that I could help.

Hugs,

Tracie

March 23, 2004

Tracie

Thank you for the information I hope to order the book after the first of next

month.

It really seems to say the things that I can't seem to put into words.

It always feels good when I feel like I'm not the only one. I would not wish

this or any chronic illness on anyone but it is nice not to be alone.

Pat

Re: Chronic illness/Relationships

Pat,

So many of us, in fact all of us had had to deal with this same issue.

One of the biggest things that happens with chronic illness is that because

it doesn't have a crutch, cast, bandage, IV, baldness, and can't be treated

with a 10 day course of antibiotics, we must be faking it.

There is a wonderful booklet, BUT YOU LOOK GOOD!, that is written by a woman

that has MS and NS (I believe.) Use this address to read the first section:

http://groups.yahoo.com/group/Neurosarcoidosis/links

I know many of us have invested in several copies of this booklet, and in

sharing them with friends and family, along with an explanation that it is a

" must read " , so that they too can understand what you are going thru.

Pat, I hope this helps.

Tracie

March 25, 2004

I've been lurking for a couple of days. My sister-in-law was just diagnosed

with neurosarcoidosis (man, is that hard to type), after a year of getting

fobbed off by doctors. It started last summer with one of her eyes. Then pain

everywhere. Then difficulty walking. Loss of weight. Memory loss. Tired all the

time.

I was on vacation in Fla, and she and my brother came down for a few days--I

figured a good rest and sunshine and fresh fruit would help anyone. Wrong.

What is this booklet? Sounds like it might be helpful to me. And my

sister-in-law's husband and grown kids. How do I get it?

Finally, she found a doctor (halfway across the state) who put her in the

hospital for two weeks of tests, fought with her insurance company, and finally

came up with the diagnosis. Now we're all finding out all we can about it.

Thanks for your help.

____________________________________________

Earline Faulkingham

March 26, 2004

I got the booklet and it was very helpful and was an eye opener to me indeed.

Now if I could get my friends and family to read it too it doesn't take long at

all.

Time is a very precious gift of God;

so precious that it's only given to us

moment by moment..............

~~~~~~Amelia Barr

Jan

March 26, 2004

Hi Earline and welcome to our group my name is Jan i'm sorry your sister-in-law

has neurosarc but we have a load of information here and very kind and

compassionate people feel free to ask questions, vent, or whatever and there

are several moderators and other group members that may be able to help stir you

in the right direction. Hope you get answers soon from the doctors and hugs to

you and your sister-in-law and family.

Time is a very precious gift of God;

so precious that it's only given to us

moment by moment..............

~~~~~~Amelia Barr

Jan

March 26, 2004

Your sister has an angel on her shoulder. Thank you for " lurking. "

The booklet you're talking about is from " Invisible Disabilities Advocate "

and is titled " But You Look Good! " . You'll have to go to the website

http://www.invisibledisabilities.com/ and then follow the links to order the

booklet.

It is not available at any bookstores.

This booklet has touched so many of us in such a personal way. The author

lives with chronic illness, and was able to find the words to explain what she's

going thru, and comes up against, daily.

Also, make sure that you go to the Elderwyn site for NS. It really is a

wonderful roadmap for those of us with this disease.

http://www.elderwyn.com/neurosarcoidosis/

Our very own Aisha- the founder, creator, of this support group put together

the article, and has been recognized and published in medical journals for her

many hours of research into this disease. Her article has been awarded The

Golden Lifesaver Award from the Worldwide Sarcoidosis Society. (Not to mention

she is one sweetheart of a lady and a dear friend to all of us.)

Let us know how we can help,

Compassionately,

Tracie

NS Moderator/Co-Owner

March 26, 2004

Thanks, Tracie, for the information about the booklet. I just ordered it.

Especially thanks for the welcome. I found this group from Aisha Elderwyn's

website. I printed that article out for my mother to read, so more people in my

family are informed. Our family is pretty well spread out across eastern US,

and the net is a godsend with stuff like this happening.

Now my hope is that (my sister-in-law, the one with neurosarcoidosis)

will want to join this group. I sent her the link to Aisha Elderwyn's website.

I wish churches put out the kind of open-armed unconditional love that you

folks do.

Again, thanks.

____________________________________________

Earline Faulkingham

March 26, 2004

Thanks for your welcome, Jan. I sent my sister-in-law the link to Aisha

Elderwyn's article; from there, perhaps she'll find this group. It's how I found

you all.

I have a chronic illness myself--COPD--and I have prednisone battles, too.

However, I'm watching my sister-in-law, who's just discovered that she has NS.

Does this group welcome watchers? I love her as my very own sister, and I feel

so helpless in the face of this.

____________________________________________

Earline Faulkingham

March 26, 2004

In a message dated 3/26/04 9:08:07 PM Pacific Standard Time, EarlineF@...

writes:

> Does this group welcome watchers? I love her as my very own sister, and I

> feel

> so helpless in the face of this.

>

We sure do! Earline, Your sister-in-law is so lucky to have you helping her

with this. From reading your post to Jan, I see you have COPD. So you know

what it's like to have a chronic illness. Many of us started with pulmonary

sarcoidosis. When the sarc is in your lungs, you get the shortness of breath,

find that any exercise leaves you totally wiped out because our diffusion

capacity gets screwed up. For us, it's actually ROPD-- Restrictive Obstructive

Pulm Disease. The lungs become hardened, and look like an old sponge instead of

a new one. Air can't cross over the lungs fast enough to be taken into the

red blood cells and out to our bodies. So we also end up with extremity

numbness.

Ayway, you are totally welcome to hang around- ask questions, get some

answers, share with your sister-in-law the info you get, come to the chats on

Monday

and Friday nights.

Several of our members are supporting care-givers for the person whos sick.

So they can share insight into how to help from that angle.

Welcome aboard,

Tracie

March 26, 2004

Earline, I can definitely tell you that this group does not discriminate

from watchers on down, we will love them all. I will be praying for your

sister in law and that her symptoms will be light and she will eventually

become symptom free once she gets on some good medications. I have been on

Methotrexate since 1995, but before that I was on high dose solumedrol and

it just about did me in. I am on 10 alternating with 20 Methotrexate and

30mg of cortisone and that has taken pretty much care of things up until

lately and now they are going to have to add another immunosuppressive

because my brain has decided to act up again but I think with that many

years in between I have done pretty good. My case has been complicated by

hydrocephalus but I think everyone here has had complications due to some

other illness on top of this one, but we all pray for each other and gather

as much info we can to help each other. Welcome to the group and I will be

there to help as much as I can. Your friend in Texas, Jeanna

-- Re: Chronic illness/Relationships

Thanks for your welcome, Jan. I sent my sister-in-law the link to Aisha

Elderwyn's article; from there, perhaps she'll find this group. It's how I

found

you all.

I have a chronic illness myself--COPD--and I have prednisone battles, too.

However, I'm watching my sister-in-law, who's just discovered that she has

NS.

Does this group welcome watchers? I love her as my very own sister, and I

feel

so helpless in the face of this.

____________________________________________

Earline Faulkingham

March 27, 2004

You are welcome Earline and i'm so glad you found this site we are just one big

family here and of course like so many others have said family is incouraged to

participate so yes you are welcome here. Hope you are having a good day,

many hugs and good thoughts and prayers for you and your family,

Time is a very precious gift of God;

so precious that it's only given to us

moment by moment..............

~~~~~~Amelia Barr

Jan

March 31, 2004

Thank you for the excellent way you explain the disease I know and have been

told many times but can't remember how to explain it to other people so I

finally got smart and made a copy of the e-mail so I can have them read it.

The diagnosis for me was delayed because I was originally disabled because of

post traumatic brain injury or the now popular concussion syndrome. The doctors

thought I was just depressed and lacked energy because the symptoms cross over

with the exception of the pain and the lung lesions. I finally grew large lung

lesions and had rt. middle lobe of lung removed, then was still misdiagnosed

and finally a year later diagnosed with sarc. Now I don't how much is sarc or

brain or diabetes. With all the nerve involvement and spells where I think I'm

going to just pass out or drop. I don't get dizzy I just feel like I'm going to

go down and my legs feel like wet noodles. How do you cope with all the pain?

I'm going loaded with copies when I go to the docs next time. I really

appreciate all the information that everyone has to offer.

Putting things into words is hard for me but I really wish everyone the best and

pray for good days for all.

Pat

Re: Chronic illness/Relationships

In a message dated 3/26/04 9:08:07 PM Pacific Standard Time, EarlineF@...

writes:

> Does this group welcome watchers? I love her as my very own sister, and I

> feel

> so helpless in the face of this.

>

We sure do! Earline, Your sister-in-law is so lucky to have you helping her

with this. From reading your post to Jan, I see you have COPD. So you know

what it's like to have a chronic illness. Many of us started with pulmonary

sarcoidosis. When the sarc is in your lungs, you get the shortness of breath,

find that any exercise leaves you totally wiped out because our diffusion

capacity gets screwed up. For us, it's actually ROPD-- Restrictive

Obstructive

Pulm Disease. The lungs become hardened, and look like an old sponge instead

of

a new one. Air can't cross over the lungs fast enough to be taken into the

red blood cells and out to our bodies. So we also end up with extremity

numbness.

Ayway, you are totally welcome to hang around- ask questions, get some

answers, share with your sister-in-law the info you get, come to the chats on

Monday

and Friday nights.

Several of our members are supporting care-givers for the person whos sick.

So they can share insight into how to help from that angle.

Welcome aboard,

Tracie

March 31, 2004