Thank you

[Guest guest]

Hi guys...

As I sit in front of this computer screen tonight, I began reading my email for the day, emotions running down my face... The love, friendship, support, and encouragement I have received over the course of my preop journey has changed my life... As my day draws closer, many who have touched me deeply have taken the time to contact me via phone or letter, wishing me well and encouraging me on... me... ~shaking my head, tears of joy streaming~ If you would have asked me last year at this time if I could ever love people on this or any other email list, I would have probably told you that it might be possible to make friends over a drawn-out period of time, but it took having an actual relationship to feel love... Well, I can honestly say that I have relationships with many here on these lists and love them more than I could have ever thought possible... It was just a year ago that I was beginning to believe those who said that I deserved to be healthy and happy, that I owed it to myself to (for once) put my needs first... Some very special people had stepped into my life and truly believed in me... me.... just for being me... This may not seem like a big deal to some, but my dh and children were really the only others that had ever had this type of unwavering, unconditional faith... I was overwhelmed by it, and it changed me... forever... These people were patient and kind in the beginning as they answered all my (thousands of) questions. The truly amazing thing is that they are still just as loving, if not more... My personal journey was quite emotional at times, yet they stayed by my side... When I hurt, they cried with me... When I healed, they sat with me... When I rejoiced, they danced with me... They are not only my mentors, role models, and heroes, but are my true friends as well...

I guess what I am trying to say is thank you... You know who you are... Many do not hear these words enough, so I will say them again and again... You make a difference... You are worth your weight in gold... and your comments and presence on these lists affect more lives than you will ever see... You are each a pebble in a pond... The love and kindness you show touches those close to you in a very big way as a pebble being dropped makes a splash... Yet the difference does not stop there... It spirals out to each that are touched by those you have touched with your love and kindness... You have made a difference in many lives... You made a difference in mine... I am humbled and inspired (as well as a tad sappy) as I prepare to join your ranks...

As I begin this new chapter in my life, I want to remember what is most important within me now that I want to carry forward with me... My family... My friends... Compassion... Caring... Honor... Integrity... and mostly Love... These are the pieces that have mattered most in my life thus far, and I wish to keep them as my cornerstones, regardless of my size or health... Perhaps as I shed some of my.... "excess baggage", there will be more room for these pieces that matter so much to me to grow and expand... Perhaps even I will one day have the honor of touching others the way I have been touched... and perhaps I may even make a "splash"...

Thanks again...

~hugs to each~Rabecca, Portland ORTo Be Switched by Dr Baltasar, SpainOn June 15, 2001

[Guest guest]

At 11:57 AM -0400 7/2/01, Sue wrote:

Well after

the week from hell I think I am finally on the up swing- aside from

not being able to eat or drink last week- I realized that my pressure

meds had a water pill in it that was making me very ill- i was passing

out all over the place- I finally got through to Dr Pomp's nurse,

Alice, since Yvonne was not in and she confired with Dr Pomp and

he told me to stop the water pill-

Sue,

A few weeks out, I almost passed out

in the shower. I was taking my diuretic (water pill), and it

was depleting my potassium levels. so, now, I take a potassium

supplement along with the diuretic.

my diuretic: hydrochlorothiazide 50 mg

potassium supplement: K-tab 10 mEq

Both prescription.

Be well,

Seve

--

[Guest guest]

Sue-

I'm sooo glad you're feeling better! Keep on sipping, honey!

Hugs,

Liane

> Well after the week from hell I think I am finally on the up swing-

aside from not being able to eat or drink last week- I realized that

my pressure meds had a water pill in it that was making me very ill- i

was passing out all over the place- I finally got through to Dr Pomp's

nurse, Alice, since Yvonne was not in and she confired with Dr Pomp

and he told me to stop the water pill- I took the advice of many of

you and ate anythng I could get down that had liquid in it like ices

and watered down juice and started eating a teaspoonful of yogurt etc-

it is finally working - Alice was also nice enough to have the

nutritionis call me this morning to go over my choices and to make

sure all was ok..

>

> You are all terrific and I thank each and every one of you for your

help and thoughful suggestions.

>

> Sue-

> " going down " permanently

> starting bmi 53

> post-op bpd/ds w/ Dr Gagner

> 6/18/01

> Mt Sinai- 6.18.01

[Guest guest]

YES, just put their email addy in the TO box instead of the list name..

yes, there are many bi-racial folks with CF as well as many full

Afro-American

folks. I have some friends in Miami , that have 2 children, a boy & a girl

with CF . they are young adults now. I have know them about 10 years. They

are fine. & have many others bi-racial too. I have one who is Indian in CA

also. they attend our CFRI conf each year there.............So NO , dear gal

..You all are NOT alone............This is your family too & Gee, we are all

folks of all races & nationalities too:)

LOVE & HUGS,

grandmomBEv

Irish American

Thank You

To all those who answered me about my son Chas, Thank You!! This is the

first I have had a chance to hear from others who are either biracial or

100% black. Could someone tell me how to email privately? DO I just send to

the individual email? I am eager to talk topeople who could guide me to the

right place to learn more about my son's situation. I probably will also be

asking all kinds of questions because I have so many and I am so overwhelmed

with life and this disease. Right now I am struggling to maintain my sanity

and I want to keep it together so I can take proper care of Chas. He had a

great Well check up today, but I am feeling very alone about trying to keep

him healthy!!

Thanks to everyone again and I will email some of you as soon as I can to

ask some more specific questions if that's ok?!

le, mom of Chas(18 mos) wcf

[Guest guest]

Please remove me from the e-mail list. Thank you. I have enjoyed all I have read

but feel I'm unable to help at this time. Thank you again Debi

[Guest guest]

Well, we all know who did not sign her post!

n

[Guest guest]

-Jodi, I am so glad for you and your family I knew the prayer chain I

sent out would help, GOD works in mysterious ways !!!! I think

about you all way to often and how much Max has gone through

especially at his tough age of being a teenager!! He is so strong .

He is so lucky to have such loving parents and family !! All of us!!!

Good luck on the Job I wish I was there so could be in your

class when he get's bigger!! You are going to make a great teacher!!

Love and Hugs and God Bless!!!

- In RSS-

Support , " Jodi Zwain " wrote:

> Thanks, everyone, for the great messages. We are all back to

normal

> now, for the timebeing, at least. Max is not even using the g-j

> button! The little " rat " is eating well enough that he does not

> need the pump feedings. He was so angry and depressed at the

> thought of being tube fed that it motivated him to try eating and

> the food is staying down. What a way to motivate a kid, huh?

>

> Tomorrow is a big day for all of us. Max is going back to school,

> I'm starting my new job, and my husband is signing the contract for

> his new job. Finally things are turning around for us!

>

> Really, I cannot tell you all how much your support means to me.

It

> is so great that so many people I have not met or see just once a

> year at the convention can care so much and have such warm thoughts

> for us. Life with Max is really difficult at times, but you all

> help me get through it.

>

> Jodi

[Guest guest]

Hi Conny:-)

Thank you..my eyes teared up from your message. It meant a lot to me that

you sent it. We really miss Janelle's joyous spirit.

J

>

> Reply-To: RSS-Support

> Date: Mon, 15 Dec 2003 18:37:48 -0000

> To: RSS-Support

> Subject: Thank you

>

> Dear Jovanovich,

>

> I wanted to take a moment and thank you for continuing to stay with

> us and share all of your expertise on RSS. It is a tribute to

> Janelle that you are using what you learned with her to help us.

>

> I will be thinking of you and your family as you go through this

> holiday season. I know than Janelle is one of the littlest angels in

> heaven and will be with you in spirit. Take care of yourselves. We

> need you and love you.

>

> Conny, 's great aunt

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi

I've not been a member of magic long but read on the newsletter about the death

of janelle. I didnt look into having RSS until a few months ago and have found

the support sites of invaluable support and info. I hope you and your family

are continuing to cope and I thank you for the support you give the site.

Your with warmest regards

Jovanovich @...> wrote:

Hi Conny:-)

Thank you..my eyes teared up from your message. It meant a lot to me that

you sent it. We really miss Janelle's joyous spirit.

J

> From: " colson45 "

> Reply-To: RSS-Support

> Date: Mon, 15 Dec 2003 18:37:48 -0000

> To: RSS-Support

> Subject: Thank you

>

> Dear Jovanovich,

>

> I wanted to take a moment and thank you for continuing to stay with

> us and share all of your expertise on RSS. It is a tribute to

> Janelle that you are using what you learned with her to help us.

>

> I will be thinking of you and your family as you go through this

> holiday season. I know than Janelle is one of the littlest angels in

> heaven and will be with you in spirit. Take care of yourselves. We

> need you and love you.

>

> Conny, 's great aunt

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I want to thank the group for their helpful suggestions regarding the MELAS

diagnosis of my brother (negative). I am usually a lurker but I find the

broad base of knowledge and suggested resources wonderfully helpful. As

confirmed MELAS mutant (hmmm I do appreciate all the accumulated knowledge

of the

group. It has been helpful to me, my children and for my brother throughout

the years I have been a Mitoldie. Bravo!

a

[Guest guest]

Hi Darlene,

First of all I would like to welcome you to the group. Sorry I am

late at welcoming you but things have been hectic in my life lately

I know what you mean about most people in our age group who either

have children or are planning on having children. I am 45 yrs.old.

Never had children. And now I am glad that I didn't. My husband is

disabled and that was the main reason why we decided not to have

children. We both didn't want to take a chance that our children

would end up like their Daddy. And then years later we found out that

I have Mitochondrial disease/MELAS. So in the long run it turned out

that our decision was right for us.

But since i don't have children, I talk a lot about my dogs and the

showing and breeding of them that I did before I got too sick to

continue. So I guess I am just as guilty as the mothers who talk

about their children, only that my children have FOUR LEGS instead of

TWO!! :-)

About your weight issue, I am sorry but I can't help you with that. I

am struggling to gain weight and it is very difficult for me. I am

now on a J tube to help with that. And also on TPN to make sure that

my body gets enough fluids.

I am sure that someone here on the list will be able to give you some

hints on losing weight. I am sure that it is just as hard as gaining

weight, so my thoughts are with you. I hope that you are able to lose

the weight and that it will help you with the Mito disease as well.

Good Luck

Hugs,

Ann-Marie

At 11:59 PM 10/23/2005, you wrote:

>Thank you all for your responses! You have all been so nice. It's hard to

>talk to people sometimes because I don't have that much in common with most

>people I come into contact with, partly because I can't have

>children and most

>people my age can talk about nothing but their kids.

>

>I have been having trouble losing weight. I gained almost 90 lbs in 5 years

>making me 211. I have lost 12 lbs of that but I seem to have hit a plateau.

>I would really like to lose this extra weight because I have been

>thin most of

>my life and the extra weight makes the mito even harder to deal with. Any

>suggestions?

>

>Darlene

>

>

>

[Guest guest]

Hi Ann-Marie

When my sister was a teenager, she couldn't gain weight. She has multiple

sclerosis (I'm not sure one has anything to do with the other). The doctors

told her to drink a milk shake everyday. That was a long time ago and it

doesn't

sound like something drs. would say today but it worked. She was 89 lbs at

17 years old. Although eating to my heart's content sounds like it would be

wonderful, I'm sure it is just as frustrating not being able to gain weight as

it is not being able to lose it.

I know exactly what you mean about dogs. I love dogs so much and I have had

them my entire life. Unfortunately, now when I need one most, I can't have

one. My parents moved in with my husband and I to help out since I can't work

anymore and they don't want any dogs. Last year, I lost " my baby " Buffy. She

was a Norwegian Elkhound and very beautiful. We left her with someone to take

care of her for awhile and that person gave her away to a stranger without

our permission. I miss her terribly. I don't care what anyone says, she was my

daughter. That is what my husband and I always called her- our daughter.

Darlene

[Guest guest]

Hi RH

Thanks for the advice. My doctor told me the Atkins diet is bad and to stay

away from it so I never tried it but in a way, I've been on it for years. I

love meat and I'm not a big fan of carbs.

Kind of a funny story- years ago, when the Atkins diet was first becoming

popular, I was a vegetarian. I worked at an athletic club and one of the tennis

players was on the Atkins diet. He was telling me about it and how he was

losing so much weight (and it was evident that he was) and I told him I didn't

eat meat. He made a bet with me over a St. Louis Cardinals baseball game. If

the Cardinals win, he would eat a salad (including cheese and croutons) and if

the Cardinals lose, I would have to eat a Quarter Pounder from Mcs.

Well, the Cards lost and now I am a recovering fast foodaholic! hmmm...maybe

that's why I gained so much weight!

Good luck with your bunny!

Darlene

[Guest guest]

Thanks, Laurie. What a sweet thing to say! I'll try your suggestion and

hope that I have the discipline for it.

Darlene

[Guest guest]

Hi Sunny

My sister in law swears by the South Beach diet. I bought books on it and I

asked my doctor about it. He sounded a little perturbed at me because I had

previously asked him about the Atkins diet. He told me to forget the fad diets

and just eat healthy and exercise. Of course, this same doctor told me my

brain MRI was fine and later another doctor diagnosed Cerebellar Degeneration

after looking at the same MRI.

Darlene

[Guest guest]

A few things - I have both two and four legged children, the latter

being my bunny rabbits that live in the house and use litter boxes.

I probably talk about my non-human children more than my children

Right now, one of our poor bunnies has a jaw abcess that needs to be

cleaned twice a day, so me and my husband put a priority on that, and

the kids just have to wait until that's done!

Regarding diet, I've had success with the Atkins diet, and it helps

my symptoms, BUT it doesn't work and maybe a bad idea for some with

mito. It should be something you discuss thoroughly with a doctor

who is familiar with mito, and essentially losing weight is " a

treatment plan " that needs to be followed and tracked for any

positive or negative changes due to it. I've found that the high

protein high fat diet has helped decrease my absence seizures

tremendously and increased my stamina, but I know it negatively

affects others.

Only hint that " shouldn't " hurt anyone is that I love celery, and try

to eat a lot of it, usually with some soft cream cheese with chives.

That seems to help me stave off hunger, although the Atkins diet also

decreased my hunger a lot. Also a bit of advice, I don't recommend

planning anything stressful or driving a lot during the first day or

two of the Atkins diet as your body adjusts...

It does seem that we are either " too heavy or too light " on this

list I'm sure we average out LOL.

Take care,

RH

>

>

>

>

> Hi Darlene,

>

> First of all I would like to welcome you to the group. Sorry I am

> late at welcoming you but things have been hectic in my life

lately

>

> I know what you mean about most people in our age group who either

> have children or are planning on having children. I am 45 yrs.old.

> Never had children. And now I am glad that I didn't. My husband is

> disabled and that was the main reason why we decided not to have

> children. We both didn't want to take a chance that our children

> would end up like their Daddy. And then years later we found out

that

> I have Mitochondrial disease/MELAS. So in the long run it turned

out

> that our decision was right for us.

>

> But since i don't have children, I talk a lot about my dogs and the

> showing and breeding of them that I did before I got too sick to

> continue. So I guess I am just as guilty as the mothers who talk

> about their children, only that my children have FOUR LEGS instead

of

> TWO!! :-)

>

> About your weight issue, I am sorry but I can't help you with that.

I

> am struggling to gain weight and it is very difficult for me. I am

> now on a J tube to help with that. And also on TPN to make sure

that

> my body gets enough fluids.

>

> I am sure that someone here on the list will be able to give you

some

> hints on losing weight. I am sure that it is just as hard as

gaining

> weight, so my thoughts are with you. I hope that you are able to

lose

> the weight and that it will help you with the Mito disease as well.

>

> Good Luck

> Hugs,

> Ann-Marie

[Guest guest]

Darlene

Many of us deal with extra weight. If our bodies aren't matabolizing

the fuel correctly, then it has to go somewhere. The only thing that I

have found that helps is when I feel hungry, I ask myself " is it

because I need the food for proper nutrition or do I need the energy? "

If the answer is energy, then I lay down to recharge instead of

eating. This is not very possible if working or raising children. My

weight has been an issue for many, many years. I have been told that I

shouldn't loose more than a pound every other week. At that rate, I

had better live a long time. .

Good luck with trying to loose the weight, but never feel that you are

less than you are inside, because of it.

laurie

> Thank you all for your responses! You have all been so nice. It's hard to

> talk to people sometimes because I don't have that much in common with most

> people I come into contact with, partly because I can't have children and

> most

> people my age can talk about nothing but their kids.

>

> I have been having trouble losing weight. I gained almost 90 lbs in 5

> years

> making me 211. I have lost 12 lbs of that but I seem to have hit a

> plateau.

> I would really like to lose this extra weight because I have been thin most

> of

> my life and the extra weight makes the mito even harder to deal with. Any

> suggestions?

>

> Darlene

>

>

>

[Guest guest]

As usual RH has good thoughts about losing weight. I will add my

experience. I didn't really need to lose that much, but when I started

to pay attention to the category of foods, not just the calories, I

found that carbs made me very very tired afterwards, and when I overate

it was with carbs -in my case, potatos, pasta and bread, not sweets,

but I think it works the same way with sweets for ppl. I too feel

better on a diet that restricts carbs. I don't do it as drastically

as the Atkins, but I am careful to limit my carbs. I make choices in

the direction of known health benefits, and will eat fruits and the

less starchy veggies, but skip the breads, pastas, potatos, and other

high glycemic index carbs. Atkins, The South Beach Diet, and even the

Zone diet will give a breakdown of the food categories and what are the

worst carbs to eat. The problem is modern living! The high carb stuff

is so convenient, and cooking fresh good veggies and protein is so

time consuming, but I feel better when I do it right. I do feel there

are other health considerations with the Atkins diet - eg the nitrates

in bacon and sausages, and the total amount of saturated fat bothers

me, so I try to avoid the known detrimental parts of that diet, but use

it as a guide. For sure, I will go into a dive that can put me to

sleep if I overeat carbs, and that keeps me faithful. An added benefit

is that my weight is only few pounds over what it should be, where it

the past it has been many many more.

Good Luck

Sunny

> Regarding diet, I've had success with the Atkins diet, and it helps

> my symptoms, BUT it doesn't work and maybe a bad idea for some with

> mito.  It should be something you discuss thoroughly with a doctor

> who is familiar with mito, and essentially losing weight is " a

> treatment plan " that needs to be followed and tracked for any

> positive or negative changes due to it.  I've found that the high

> protein high fat diet has helped decrease my absence seizures

> tremendously and increased my stamina, but I know it negatively

> affects others. 

>

> Only hint that " shouldn't " hurt anyone is that I love celery, and try

> to eat a lot of it, usually with some soft cream cheese with chives. 

> That seems to help me stave off hunger, although the Atkins diet also

> decreased my hunger a lot.  Also a bit of advice, I don't recommend

> planning anything stressful or driving a lot during the first day or

> two of the Atkins diet as your body adjusts...

>

> It does seem that we are either " too heavy or too light " on this

> list   I'm sure we average out LOL.

>

> Take care,

> RH

>

> -

[Guest guest]

Thank you re: my bunny I eat vegetables (peppers, string beans,

black soy beans, and celery frequently, others sparingly) and fruit

(strawberries and peaches are relatively low carb, smoothies with

cream are a good thing). I find that when one is first starting this

type diet, try to leave off of the fruits for at least a week, then

slowly reintroduce them. Celery and peppers are almost unlimited for

me (usually two small or one regular pepper per day, four or more

stalks of celery).

I think one can eat minimal amounts of meat and be on the Atkins

diet, but it would be difficult. I have friends that only eat

chicken, cheese, and eggs in addition to plant products, and they

could follow the Atkins diet pretty easily. I also get a lot of

wheat bran from eating low carb bread and hot cereals. No one is

forced to eat steaks with bacon on the diet. Mornings I usually have

egg beaters and sausage, lunch maybe an ounce or two of cheese and a

few ounces of meat. Dinner might be burgers with onions and peppers

and cheese. Snacks of course celery, and sometimes low carb candy

(Werther's caramel drops are great!).

Unfortunately, most doctors aren't metabolic experts and also most

people don't read Atkins' specific advice on his diet - he doesn't

advocate unhealthy food, just a different mix of foods. I think the

food pyramid they give says it all:

http://www.atkins.com/articles/food-pyramid

One thing I heard that can work if one sticks with it is to figure

out how much you want, then cut it in half and put the rest away.

The theory is that people tend to eat what's on their plate, but may

debate taking more if the food isn't in front of them. I was on a

diabetic diet, and was really stressed out - not that I didn't

comply, but all that weighing and measuring and constant care as to

what I ate and how much bothered me. What does your doctor

recommend - low fat low calorie?

An interesting thing I found is that my hunger is different when I

stick to the Atkins-type diet - it is more like " when I was a kid " -

when you were hungry your body felt hungry, not your mind. I feel

that I am able to let go of some of the " psychological hunger " when

on this diet. Just my experience, YMMV. I would also recommend

checking one's urine for ketones when on this diet, especially if

trying to lose more than 20 lbs.

Take care,

RH

>

> Hi RH

>

> Thanks for the advice. My doctor told me the Atkins diet is bad

and to stay

> away from it so I never tried it but in a way, I've been on it for

years. I

> love meat and I'm not a big fan of carbs.

>

> Kind of a funny story- years ago, when the Atkins diet was first

becoming

> popular, I was a vegetarian. I worked at an athletic club and one

of the tennis

> players was on the Atkins diet. He was telling me about it and

how he was

> losing so much weight (and it was evident that he was) and I told

him I didn't

> eat meat. He made a bet with me over a St. Louis Cardinals

baseball game. If

> the Cardinals win, he would eat a salad (including cheese and

croutons) and if

> the Cardinals lose, I would have to eat a Quarter Pounder from

Mcs.

> Well, the Cards lost and now I am a recovering fast foodaholic!

hmmm...maybe

> that's why I gained so much weight!

>

> Good luck with your bunny!

>

> Darlene

>

>

>

[Guest guest]

Interesting, here is a site that shows there are " real " scientists

who believe in the Atkins diet:

http://www.nmsociety.org/index.htm

I assume many people have heard of the ketogenic diet for

uncontrollable seizures, although from what I understand it is a MUCH

more limited diet, even though some people get into ketosis on the

Atkins diet (and I was in ketosis from a low fat low calorie diet).

Take care,

RH

>

> Hi Sunny

>

> My sister in law swears by the South Beach diet. I bought books on

it and I

> asked my doctor about it. He sounded a little perturbed at me

because I had

> previously asked him about the Atkins diet. He told me to forget

the fad diets

> and just eat healthy and exercise. Of course, this same doctor

told me my

> brain MRI was fine and later another doctor diagnosed Cerebellar

Degeneration

> after looking at the same MRI.

>

> Darlene

>

>

>

[Guest guest]

I personally think that weight watchers is avery good way to lose weight, and be

part of a support group at the same time. I am also a huge animal lover and

would love to talk about your animals at anytime. I have three wonderful pets.

Carmen

DarleneASP@... wrote:Thanks, Laurie. What a sweet thing to say! I'll try

your suggestion and

hope that I have the discipline for it.

Darlene

[Guest guest]

So do we need a " mitopets " group? Continuing on the animal subject,

I would think there is a support group for people with service

animals, or one should be started There must be some additional

issues for service animals way beyond issues for pets (for example

logistics, like leashes, collars, halters, etc.). I know the human

accommodations/tools people have mentioned on this list have helped

me a lot.

Take care,

RH

Thanks, Laurie. What a sweet thing to say!

I'll try your suggestion and

> hope that I have the discipline for it.

>

> Darlene

>

>

>

[Guest guest]

I just wanted to thank all of you for your support. As a group owner as well as a moderator-- it is important that we do focus on how to support one another-- and Tony has put it so well.

We are here to hold each other through the tough stuff-- the emotional burdens of chronic illness with sarcoidosis as well as the different options to treat our illness.

We can only share from personal experience, and the hours that all our moderators put in researching this disease and sharing that knowledge is a gift beyond --way beyond what any of us ever thought we'd be doing.

None of us are doctors, and yes, we have many RN's, LVN's, teachers and educators--as well as laymen on this board. We all want just one thing-- for each of us to be as healthy as we can be.

From the bottom of my heart, it is an honor and blessing that I get to be a part of this group-- and do what I've always had a desire to do-- possibly make a difference in someone elses life.

Blessings to us all,

Tracie

NS Co-owner/moderator

[Guest guest]

You make a difference in my life Tracie,

and I thank you for it, you are a very special, blessed person and we are

blessed to have you.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Wednesday, January 17, 2007

10:59 PM

To: Neurosarcoidosis

Subject: Re:

Thank you

I just wanted to thank all of

you for your support. As a group owner as well as a moderator-- it is

important that we do focus on how to support one another-- and Tony has put it

so well.

We are here to hold each other through the tough stuff-- the emotional burdens

of chronic illness with sarcoidosis as well as the different options to treat

our illness.

We can only share from personal experience, and the hours that all our

moderators put in researching this disease and sharing that knowledge is a gift

beyond --way beyond what any of us ever thought we'd be doing.

None of us are doctors, and yes, we have many RN's, LVN's, teachers and

educators--as well as laymen on this board. We all want just one thing--

for each of us to be as healthy as we can be.

From the bottom of my heart, it is an honor and blessing that I get to be a

part of this group-- and do what I've always had a desire to do-- possibly make

a difference in someone elses life.

Blessings to us all,

Tracie

NS Co-owner/moderator

[Guest guest]

I second that emotion, Tracie. I truly appreciate your dedication to the group, your willingness to answer & research the many questions we pose to you. I know how I feel on a daily basis with my high and lows, and I can only imagine you may be going through the same and sometimes worse, but you still do your best to help us out. That is an awesome undertaking and I am so thankful!! Naa KoshieMarla Bramer wrote: You make a difference in my life Tracie, and I thank you for it, you are a very special, blessed person and we are blessed to have you. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat (AT) aol (DOT) comSent: Wednesday, January 17, 2007 10:59 PMTo: Neurosarcoidosis Subject: Re: Thank you I just wanted to thank all of you for your support. As a group owner as well as a moderator-- it is important that we do focus on how to support one another-- and Tony has put it so well.We are here to hold each other through the tough stuff-- the emotional burdens of chronic illness with sarcoidosis as well as the different options to treat our illness.We can only

share from personal experience, and the hours that all our moderators put in researching this disease and sharing that knowledge is a gift beyond --way beyond what any of us ever thought we'd be doing. None of us are doctors, and yes, we have many RN's, LVN's, teachers and educators--as well as laymen on this board. We all want just one thing-- for each of us to be as healthy as we can be. From the bottom of my heart, it is an honor and blessing that I get to be a part of this group-- and do what I've always had a desire to do-- possibly make a difference in someone elses life.Blessings to us all,TracieNS Co-owner/moderator "How far you go in life depends on your being tender with the

young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver

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