Tracie

[Guest guest]

Tracie, I typed up an long e-mail yesterday but wasn't sent out. Either because of being long itself or I didn't have the correct address in that "To:" portion listed above. Anyway here am I again I'll do a shorten version. I may wrote something of the sort before of what I'll write here below, but I don't remember if I did or not. Well here it is. If you had my medical conditions since my birth and ALL what YOU had and are having now was just SWITCHEROO (ha! ha! my terminalogy here) with myself, what would you do???? Please keep in mind of something here. I'am asking just for your opinion, your goal(s), or direction, or course to go with IF AND I SAY IF you have my current health matters and ALL YOUR PAST AND PRESENT did not exist with you now. I have that seasonal alergies, and that thing (is it fungus?) under both my big toenails. This is no big deal so just forget about

these things. The more important matters such as this pain in both my knees and inflammatary pain in both of the backside of my legs is going on. Pulmonary Sarcoidosis has stablelized and is in the "back burner" for concerns now. Again think if you had these matters of this pain in your legs & knees like I do. All the damage to your lungs and your need to have to use an oxygen tank does not exist. As I said, what I have now, you have. You're a high risk for stomach cancer (like I'am now) because of years of having that nuisance of Peptic Ulcer Disease. You've been told by a doctor that if you don't resolve having these Peptic Ulcers, you'll develope stomach cancer someday (was my doctor at the time right or wrong in that medcial asumption?) I know enough of these anti-inflammatary drugs that there is good aspects and bad ones. I know of this inflammatary pain going on that if it weren't for having my history of Stomach Peptic Ulcers, I

should been taking a drug like Prednisone starting at say 50 mg tablets a day and tappered down to say 5 or 10 mg tablets going back to last summer. Keep in mind of what I said previously that you Tracie, and not others had these health matters switch with myself. Why? Why? Why did I write this e-mail?? Because you and myself have something in common. What is that? You mentioned before you have symptoms of arthristis and I think you were refering to Sarcoid Arthristis. So If all said and done this pain in both of my knees is Sarcoid Arthristis and you have this along with the history of that dastardly stomach trouble, what would YOU do???? Just put yourself "in my shoes", figuretively that is. Would you feel like your screwed or just have that "throw in the towel syndrome" like I wrote before myself??? Again, I say for myself going on, I could easily take 40 or 50 mg of

Prednisone and have that tappered down like it is done with most people but AM NOT TAKING NOTHING OF THE SORT RIGHT NOW. Meanwhile all said and done the knee joints are gradually teariting along with muscle weakness. I know I should have a postive outlook about life, but it is so discouraging and depressing to put up with that pain in the knees and inflammatary pain in the legs. The V.A. doctors (rheumoidtolagist, neurologist, and pulmonary) won't put me on Prednisone of simliar type of drugs. 10-4,

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

,

Perhaps this is not my business but it is my concern. Yes, Tracie is

very knowledgeable and helpful but I fail to how that makes her

responsible for answering your questions. I see no obligation on the

part of anyone to participate, offer suggestions or complete

homework. Tracie indicated that she was " discussed out " . My gosh, I

give her credit for hanging in on the discussion as long as she did.

No means no, at least where I went to school. I believe the lady has

indicated that she no longer wishes to discuss the issue. I don't

blame her. From where I stand, she has gone out of her way to help,

only to have her efforts thrown back in her face. All in all, I

believe you owe Tracie an apology.

Let's face it, we may have different symptoms or other ailments but

we all fight the sarc beast in one way, shape or form. I may not

understand exactly what another member is going through, but I

understand that they have the same basic fears & concerns that I do.

Each of us shares what we can, when we can, in the hopes that we may

shed some light to alleviate another's concern or, perhaps, bring a

smile to an otherwise crummy day. The outpouring of support for

those who have fallen on tough times is incredible. We don't always

need to agree with another's opinion but we need to appreciate the

good intentions, camaraderie, and support. Enough said.

I wish you peace in your day and in all you do.

Tony

[Guest guest]

Dear Shirley, thank you for thinking of us. If you've read the recent messages, you know that I fell into a deep pit of depression, but caring people helped pull me out. I want you to know that Steve is not forgotten. His courage & your motherly love are beacons of light in the dark times. Rose

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: TracieDate: Fri, 29 Dec 2006 20:15:35 -0000

Tracie:I am still reading, every message, every day on the site, and am amazed at the way all of you can answer others needs and still be in such shape yourself.I think about Steve everyday, and how useless his death was. He was so young, and was suppose to outlive his Mom, not the other way around.He was in horrible shape, physical, financial and you name it. He was in a position where I, his mother, had to clean him up after a BM, and rub his legs at night when the pain was so bad, the morphine wouldn'nt touch it, and he would wake up screaming with the pain.Sure the meds were taken care of by Medicare and Medicaid, but there are all kinds of programs that help with drugs, you just have to do research to find them. Steve didn't have any extra money to spend for a Dairy Queen treat, or to pay for his car models to put together, but he did managed to find enough to buy a model for his 9 year old friend to put together. The pain didn't seem so bad when the two of them were working together.I have a lot of respect for you, Tracie, to try to help everyone, when you need help yourself.I will pray for all of you, and worry about those of you: Rose,Kim and all the rest who haven't been writing.Shirley (Steve's Mom)

Laugh, share and connect with Windows Live Messenger

[Guest guest]

Tracie,

First of

all, I think we all eat ice cream at our low points, I had “3”

creamsicles just last night, couldn’t fall asleep, thoughts racing

inside, why because I screwed up on my meds and was mad at myself, I take

the Lycera for the nerve pain and it’s wonderful, however yesterday I forgot

the am dose so took it at noon, then at 4 had some pain so took the next dose,

and then took my regular night time dose, too much of this makes me like my

body is going off inside, I feel like the nerves are all firing way to

fast! And my thoughts, so was up playing solitaire on the computer and

sucking down those yummy creamsicles, not this am I feel tired and “fat”lol!

Yes

boredom can sometime be a problem, sometimes I feel that way but still know I have

a million things to do! I will tell you one thing, quitting the nursing

field completely was and still I have my days, I always thought well maybe one

day, but with these new symptoms, limited mobility with the left leg, and told

this most likely will not reverse we just need to stay on top of it getting

worse, of course every day I feel like it’s getting worse. Anyway,

the cries are limited to just a few minutes now when I think about it, then I remember

what me job is, see we all need something, is there something you can take

up?

It’s

hard but we have to look at the positives we have and there are many. You

are still driving! You keep all of us educated, very big! You have

a wonderful family! There are so many, more then I know, and let me tell

you girl friend, we would be so lost without your support! We love youJ.

I am

blessed, I have my own business as you all know I sell Kay, well now I am

putting more time, not much, and more heart into it, and guess what, I just

finished my first month of car qualification, so I will be driving free! I

will take the cash as the car is a cute little Vibe, but my family won’t

fit in it! I have big plans to be a director by the end of the

year! Little by little, it keeps me going and positive!

So you

just hang in there, look in the mirror a find at least 5 different ways you can

SMILE :J

We love

you, can’t live without you!! Marla

Ps I get

lost driving and have to pull over until my brain kicks back in, and I sound

like an idiot some days, especially when I’m tired, but I won’t let

it get me down, I just look at the jewelry at earn selling MK and I smile J.

Really

we do all love you.

Marla

Bramer

" Faith

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

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

Sent: Monday, March 12, 2007 10:52

PM

To: Neurosarcoidosis

Subject: Re:

showers

Debbie,

I do understand, I think. I know when I'm having a really bad day, that

all I want to do is stay in my robe, and sit on the couch, or lay on it or go

back to bed.

I think what you're saying is that even to get up and shower-- is hard.

The effort alone is too much. Yeah, we need to do it-- but you are too

damn tired. Am I right with this?

I do know I'm fortunate, in that I've been able to get this monster under some

assemblance of control.

For me, the biggest issue is that I know that the brain stuff with the

cognitive skills is progressing slowly. I had a pain support group

meeting that I was to go to last week, and I actually drove the 30 minutes down

the hill to Chico, ended up at the grocery store, picked up a couple of things-

and started back up the hill. About half way home, I realized that I

hadn't gone down to go shopping, i was to go to this meeting. Well, too

late-- I wasn't about to turn around and go back down the hill.

So my coping has to be eating way too much icecream. Way too much!

I am at a point where I'm saying that I've researched, I've tried and taken

most of the meds, and yeah- I'm doing better than I was-- but I want

more. So, instead of trying to do what I know i need to do-- eat right,

take my walk, do my armchair stretchs-- I'm eating another bowl of ice

cream.

Now this hurts because my body no longer tolerates milk products-- they cause

more arthritic pain.

It also screws with my blood sugar-- which when it's high-- I have more

neuropathy.

I also fills me up so I don't drink as much fluid as I should-- and so I hurt

again in the joints.

Yeah, I know that the MSM helps ALOT-- (take it with juice or add it to water

and a touch of sweetner) and that if I do watch my diet that I feel

better. Much better.

So why the hell am I fighting this simple issue. I'm bored. That's

why. I'm having a hell of a time looking for answers. I figure that

if I preach that we should be eating right-- then I HAVE to live up to my

" talk. " and when I don't " walk " my " talk " --

then I've failed. I've failed myself. And I've failed those who

love me.

so that's where I'm at-- and I don't like it either. But if i totally

give up-- I might as well join those who try flying " lookout point "

on the Skyway. (20 people a year use this to commit suicide). Now,

there are so many cars over the edge-- that you can damn near drive down to the

bottom of the canyon 2000 foot below on the rooftops of the cars. And I

am " contracted " not to do that. So- no worry-- but we gotta

keep getting up- and doing what we can.

Thats my story,

Tracie

NS Co-owner/moderator

**************************************

AOL now offers free email to everyone. Find out more about what's free from AOL

at http://www.aol.com.

[Guest guest]

Marla,

This has and is a tough time right now. Generally, I can let things slide. My husband had me come with him to a 401K meeting at his work, and so I went. He's been with this company for 15 yrs, and they decided to change the program. In a huge way.

While I was there, I took a minute to share with his boss some info about one of their products. My suggestion was one of a way to make this work station better.

I guess that I truly am having a harder time communicating-- because she didn't understand. My husband didn't understand what I was trying to share. It just really makes me feel like I'm becoming more and more ineffective - on a daily basis.

Then to top it off, my two best friends didn't do anything for my 50th birthday. I had lunch scheduled with one of them a couple of days ago, and she cancelled on me. Granted, she was having huge issues with hotflashes-- and was and is uncomfortable. I understand, I've gone thru it 3x since the sarc has taken over my body and hormones.

So I sent a letter to both of them, explaining that it was so hurtful to not have gotten a phone call, or a lunchdate or a screw you-- from either of them.

I know that my focus is on keeping me going. I am doing all I can to take as good a care of me as I possibly can. I know that I depend too much on them for my social life. I know that our place of child raising, and all those issues are changing. I know that I'm lonesome and scared and not in the best place mentally.

I rarely admit that-- and I have to tell you that I don't do well even admitting it here. It's easier for me to give the advice, than to admit that I need to take my own advice.

I can have a huge audience of 70+ yo women, and yet their path is one that is end of life planning, and the issues of child raising is more one of grandchild raising for them. And they don't want to know what is happening to their grandkids- because that would mean that they have to admit getting older also.

I wish I felt like I was going to get to be 70 or 80 and have to deal with my mortality at that age. That should be how it works. But we all know that. I have in my mind that if I see 60, it will be a miracle.

I am just lost at this point. I know that I'll find that inner tough tracie, and that it will be ok. Yet for now, I have to allow myself to feel this frustration-- and let that be ok. We both know it's not -- but it has to be, so we'll plod along until the wave crests once again, and we're either on top, our under it. I think they call this "life cycles."

Thank you for understanding and sharing your i chronic illness. I wish that for all of us- that we have someone that can hold us when we feel nsight. I sure wish we could meet for coffee or ice cream and just hold each other in the ups and downs ofweak, and vulnerable. I also hope that as we grow in dealing with this, that we can learn to hold ourself when others can't be there. I'm sure that too is part of the "lesson."

Love ya,

Tracie

NS Co-owner/moderator************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Tracie, Happy 50th! I was there last year and also would have been disappointed if my friends had forgotten me, I've got my cup of coffee and am listening Tracie, we are there for you is spirit if not in person. I'm sending you a BIG BIG virtual hug and I do understand all the thoughts you have floating around in that smart, sweet head of yours. It is also hard for me to share with people. I feel like I can't communicate well anymore. So I often shut down in social settings. I usually act the clown cuz I can't do much else anymore. Sometimes it helps to just ask for time to formulate your thoughts cuz you don't feel well. People should get that but not all do. Damn those healthy ones! ...lol. Wish I didn't understand either so well! ...lol. The

ones who understand the most in my family are my sister with fibro and my mom who is 88. That is sad, huh? I can compare my aches and pains with an 88 year old! And I still have more than she does.... Hey can I bring a frozen Dove bar and commiserate with you? I got a package of paint brushes today and I was so happy. Getting packages in the mail is my joy lately. I have left the house three times since January 1st. Beofre eating my Dove bar I am putting on an Irish tape and dancing(no, not naked...Have Mercy!) in honor of Rose. ...LOL. Let's get jiggorous! hugs S.tiodaat@... wrote: Marla,This has and is a tough time right now. Generally, I can let things slide. My husband had me come with him to a 401K meeting at his work, and so I went. He's been with this company for 15 yrs, and they decided to change the program. In a huge way. While I was there, I took a minute to share with his boss some info about one of their products. My suggestion was one of a way to make this work station better. I guess that I truly am having a harder time communicating-- because she didn't understand. My husband didn't understand what I was trying to share. It just really makes me feel like I'm becoming more and more

ineffective - on a daily basis.Then to top it off, my two best friends didn't do anything for my 50th birthday. I had lunch scheduled with one of them a couple of days ago, and she cancelled on me. Granted, she was having huge issues with hotflashes-- and was and is uncomfortable. I understand, I've gone thru it 3x since the sarc has taken over my body and hormones.So I sent a letter to both of them, explaining that it was so hurtful to not have gotten a phone call, or a lunchdate or a screw you-- from either of them. I know that my focus is on keeping me going. I am doing all I can to take as good a care of me as I possibly can. I know that I depend too much on them for my social life. I know that our place of child raising, and all those issues are changing. I know that I'm lonesome and scared and not in the best place mentally. I rarely admit that-- and I have to tell you that I don't do well even admitting

it here. It's easier for me to give the advice, than to admit that I need to take my own advice. I can have a huge audience of 70+ yo women, and yet their path is one that is end of life planning, and the issues of child raising is more one of grandchild raising for them. And they don't want to know what is happening to their grandkids- because that would mean that they have to admit getting older also.I wish I felt like I was going to get to be 70 or 80 and have to deal with my mortality at that age. That should be how it works. But we all know that. I have in my mind that if I see 60, it will be a miracle.I am just lost at this point. I know that I'll find that inner tough tracie, and that it will be ok. Yet for now, I have to allow myself to feel this frustration-- and let that be ok. We both know it's not -- but it has to be, so we'll plod along until the wave crests once again, and we're either on top,

our under it. I think they call this "life cycles."Thank you for understanding and sharing your i chronic illness. I wish that for all of us- that we have someone that can hold us when we feel nsight. I sure wish we could meet for coffee or ice cream and just hold each other in the ups and downs ofweak, and vulnerable. I also hope that as we grow in dealing with this, that we can learn to hold ourself when others can't be there. I'm sure that too is part of the "lesson."Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.

[Guest guest]

Thanks for the virtual hug and the virtual Dove bar!

, I don't know how anyone can be at home and only get out 3 times since Jan 1. That is one of the things that scares me-- I'm not a "homebody".

I love my home, and it is nice-- but I need the stimulation.

So what is it that you paint? I've gotten some beads and such, and should be starting on some jewelry-- we'll see-- threading a needle, and having the dexterity in the fingers will be interesting.

As we all say, one day at a time.

Hugs,

Tracie************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Tracie, I am so sorry for what you are going through. I know how it is to feel as if you have lost all of the friends that you shared commonalities with. I just wish I could have lunch with you and sing Happy Birthday (you'd be real sorry that I did) but we could talk for hours and you could just let it all out. I found this old email that I got from someone and sometimes I feel like actually using it. I dialed a number and got the following

recording:"I am not available right now, butThank you for caring enough to call.I am making some changes in my life. Please leave a message after theBeep. If I do not return your call,You are one of the changes." I hope it brings a smile to your face and forgive me for butting into your email Barb tiodaat@... wrote: Marla,This has and is a tough time right now. Generally, I can let things slide. My husband had me come with him to a 401K meeting at his work, and so I went.

He's been with this company for 15 yrs, and they decided to change the program. In a huge way. While I was there, I took a minute to share with his boss some info about one of their products. My suggestion was one of a way to make this work station better. I guess that I truly am having a harder time communicating-- because she didn't understand. My husband didn't understand what I was trying to share. It just really makes me feel like I'm becoming more and more ineffective - on a daily basis.Then to top it off, my two best friends didn't do anything for my 50th birthday. I had lunch scheduled with one of them a couple of days ago, and she cancelled on me. Granted, she was having huge issues with hotflashes-- and was and is uncomfortable. I understand, I've gone thru it 3x since the sarc has taken over my body and hormones.So I sent a letter to both of them, explaining that it was so hurtful to not

have gotten a phone call, or a lunchdate or a screw you-- from either of them. I know that my focus is on keeping me going. I am doing all I can to take as good a care of me as I possibly can. I know that I depend too much on them for my social life. I know that our place of child raising, and all those issues are changing. I know that I'm lonesome and scared and not in the best place mentally. I rarely admit that-- and I have to tell you that I don't do well even admitting it here. It's easier for me to give the advice, than to admit that I need to take my own advice. I can have a huge audience of 70+ yo women, and yet their path is one that is end of life planning, and the issues of child raising is more one of grandchild raising for them. And they don't want to know what is happening to their grandkids- because that would mean that they have to admit getting older also.I wish I felt like I was going to get

to be 70 or 80 and have to deal with my mortality at that age. That should be how it works. But we all know that. I have in my mind that if I see 60, it will be a miracle.I am just lost at this point. I know that I'll find that inner tough tracie, and that it will be ok. Yet for now, I have to allow myself to feel this frustration-- and let that be ok. We both know it's not -- but it has to be, so we'll plod along until the wave crests once again, and we're either on top, our under it. I think they call this "life cycles."Thank you for understanding and sharing your i chronic illness. I wish that for all of us- that we have someone that can hold us when we feel nsight. I sure wish we could meet for coffee or ice cream and just hold each other in the ups and downs ofweak, and vulnerable. I also hope that as we grow in dealing with this, that we can learn to hold ourself when others can't be there.

I'm sure that too is part of the "lesson."Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

[Guest guest]

Tracie,

My heart

is breaking for you, I am so sorry to hear that your girlfriends didn’t

at least take you out to lunch, the problem with the world these days is that

everyone spends too much time focusing on themselves instead of those around

them. We are living in a “me” generation, even with my kids I

have to say hey wait a minute Life is NOT about YOU, get over it.

I too

wish we lived closer I would of taken you out to lunch, which just happens to

be one of my favorites things to do, but not to often. I’m glad you

feel you can release your feeling to me, that means a lot to me. You are

wonderful and so strong for everyone here in this group, but you are also

Tracie, and 50 is big, I turn 49 the end of the week, I bought myself a new

cell phone its pink! That way I won’t be disappointed when husband

and children buy me nothing, sometimes he gets me a cake, but usually not, it’s

life so I learned to take care of myself and do what I want, I love my phone,

and on my birthday I will look at it and be OK.

Maybe you

should if you can get yourself or do something for yourself that you wouldn’t

normally do!

Now close

your eyes(when you’re done reading of course) and picture me giving you a

big comforting hug, because that is what I’m sending to you right now,

and telling you everything will be alright, and WE will get through this

together. I hope that makes you feel better, I would have sent my friends

a card or emailed them too. I’m still hugging you, so feel the

warmth and comfort of a friend, like I am right there with you. Be good

to you! Love you, Marla

Ps. I heard

that the 50s is the new 20s, and the women I talk to that are in there 50s say

this is the best part of their life so far!!

Marla

Bramer

" Faith

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

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

Sent: Thursday, March 15, 2007

4:05 PM

To: Neurosarcoidosis

Subject: Re:

Tracie

Marla,

This has and is a tough time right now. Generally, I can let things

slide. My husband had me come with him to a 401K meeting at his work, and

so I went. He's been with this company for 15 yrs, and they decided to

change the program. In a huge way.

While I was there, I took a minute to share with his boss some info about one

of their products. My suggestion was one of a way to make this work

station better.

I guess that I truly am having a harder time communicating-- because she

didn't understand. My husband didn't understand what I was trying to

share. It just really makes me feel like I'm becoming more and more

ineffective - on a daily basis.

Then to top it off, my two best friends didn't do anything for my 50th

birthday. I had lunch scheduled with one of them a couple of days ago,

and she cancelled on me. Granted, she was having huge issues with

hotflashes-- and was and is uncomfortable. I understand, I've gone thru

it 3x since the sarc has taken over my body and hormones.

So I sent a letter to both of them, explaining that it was so hurtful to not

have gotten a phone call, or a lunchdate or a screw you-- from either of them.

I know that my focus is on keeping me going. I am doing all I can to take

as good a care of me as I possibly can. I know that I depend too much on

them for my social life. I know that our place of child raising, and all

those issues are changing. I know that I'm lonesome and scared and not in

the best place mentally.

I rarely admit that-- and I have to tell you that I don't do well even

admitting it here. It's easier for me to give the advice, than to admit

that I need to take my own advice.

I can have a huge audience of 70+ yo women, and yet their path is one that is

end of life planning, and the issues of child raising is more one of grandchild

raising for them. And they don't want to know what is happening to their

grandkids- because that would mean that they have to admit getting older also.

I wish I felt like I was going to get to be 70 or 80 and have to deal with my

mortality at that age. That should be how it works. But we all know

that. I have in my mind that if I see 60, it will be a miracle.

I am just lost at this point. I know that I'll find that inner tough tracie,

and that it will be ok. Yet for now, I have to allow myself to feel this

frustration-- and let that be ok. We both know it's not -- but it

has to be, so we'll plod along until the wave crests once again, and we're

either on top, our under it. I think they call this " life

cycles. "

Thank you for understanding and sharing your i chronic illness. I wish

that for all of us- that we have someone that can hold us when we feel

nsight. I sure wish we could meet for coffee or ice cream and just hold

each other in the ups and downs ofweak, and vulnerable. I also hope that

as we grow in dealing with this, that we can learn to hold ourself when others

can't be there. I'm sure that too is part of the " lesson. "

Love ya,

Tracie

NS Co-owner/moderator

**************************************

AOL now offers free email to everyone. Find out more about what's free from AOL

at http://www.aol.com.

[Guest guest]

Tracie, I totally missed the email about your girlfriends not taking you out to lunch.. I'm sorry!! I just read where someone wished you a happy birthday.. FORGIVE ME, PLEASE!!!.. I'm like Marla, if there is something I want I get it for myself.. that way,I'm not disappointed..All of my so called friends have hit the road years ago..when I was no longer fun to hang around because I couldn't stand up.. I have one long time friend that has just recently started sending me cards on holidays again.. well not that I'm holding a grudge, but...I don't know that I want her back in my life.. as she deserted me when I needed her most, and I see that as very shallow and not much of a friend.. when she sends these things now, I just say thank you.. and go on.. I don't make a big to do about it.. I don't look for anything come the next holiday..Damian, did come home with me a card that he had purchased himself..which meant more to me than anything anyone else could have ever done.. My parents, have never even wished me a happy birthday..that I can remember.. if they have then I must have been really really young.. then this year my brother the alcholic, they called him on his birthday and invited him to their house for lunch.. Well, needless to say that didn't go over well, when I heard about it..then the have the gall to invite me to their house on his birthday.. just forget it.. I turned 50 this year too..Oh well..

Hugs Sweetie.. and HAPPY BIRTHDAY, from those of us that COUNT!!!

-- RE: Tracie

Tracie,

My heart is breaking for you, I am so sorry to hear that your girlfriends didn’t at least take you out to lunch, the problem with the world these days is that everyone spends too much time focusing on themselves instead of those around them. We are living in a “me” generation, even with my kids I have to say hey wait a minute Life is NOT about YOU, get over it.

I too wish we lived closer I would of taken you out to lunch, which just happens to be one of my favorites things to do, but not to often. I’m glad you feel you can release your feeling to me, that means a lot to me. You are wonderful and so strong for everyone here in this group, but you are also Tracie, and 50 is big, I turn 49 the end of the week, I bought myself a new cell phone its pink! That way I won’t be disappointed when husband and children buy me nothing, sometimes he gets me a cake, but usually not, it’s life so I learned to take care of myself and do what I want, I love my phone, and on my birthday I will look at it and be OK.

Maybe you should if you can get yourself or do something for yourself that you wouldn’t normally do!

Now close your eyes(when you’re done reading of course) and picture me giving you a big comforting hug, because that is what I’m sending to you right now, and telling you everything will be alright, and WE will get through this together. I hope that makes you feel better, I would have sent my friends a card or emailed them too. I’m still hugging you, so feel the warmth and comfort of a friend, like I am right there with you. Be good to you! Love you, Marla

Ps. I heard that the 50s is the new 20s, and the women I talk to that are in there 50s say this is the best part of their life so far!!

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: Thursday, March 15, 2007 4:05 PMTo: Neurosarcoidosis Subject: Re: Tracie

Marla,This has and is a tough time right now. Generally, I can let things slide. My husband had me come with him to a 401K meeting at his work, and so I went. He's been with this company for 15 yrs, and they decided to change the program. In a huge way. While I was there, I took a minute to share with his boss some info about one of their products. My suggestion was one of a way to make this work station better. I guess that I truly am having a harder time communicating-- because she didn't understand. My husband didn't understand what I was trying to share. It just really makes me feel like I'm becoming more and more ineffective - on a daily basis.Then to top it off, my two best friends didn't do anything for my 50th birthday. I had lunch scheduled with one of them a couple of days ago, and she cancelled on me. Granted, she was having huge issues with hotflashes-- and was and is uncomfortable. I understand, I've gone thru it 3x since the sarc has taken over my body and hormones.So I sent a letter to both of them, explaining that it was so hurtful to not have gotten a phone call, or a lunchdate or a screw you-- from either of them. I know that my focus is on keeping me going. I am doing all I can to take as good a care of me as I possibly can. I know that I depend too much on them for my social life. I know that our place of child raising, and all those issues are changing. I know that I'm lonesome and scared and not in the best place mentally. I rarely admit that-- and I have to tell you that I don't do well even admitting it here. It's easier for me to give the advice, than to admit that I need to take my own advice. I can have a huge audience of 70+ yo women, and yet their path is one that is end of life planning, and the issues of child raising is more one of grandchild raising for them. And they don't want to know what is happening to their grandkids- because that would mean that they have to admit getting older also.I wish I felt like I was going to get to be 70 or 80 and have to deal with my mortality at that age. That should be how it works. But we all know that. I have in my mind that if I see 60, it will be a miracle.I am just lost at this point. I know that I'll find that inner tough tracie, and that it will be ok. Yet for now, I have to allow myself to feel this frustration-- and let that be ok. We both know it's not -- but it has to be, so we'll plod along until the wave crests once again, and we're either on top, our under it. I think they call this "life cycles."Thank you for understanding and sharing your i chronic illness. I wish that for all of us- that we have someone that can hold us when we feel nsight. I sure wish we could meet for coffee or ice cream and just hold each other in the ups and downs ofweak, and vulnerable. I also hope that as we grow in dealing with this, that we can learn to hold ourself when others can't be there. I'm sure that too is part of the "lesson."Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

I heard that the 50s is the new 20s, and the women I talk to that are in there 50s say this is the best part of their life so far!!

LOL! But for those of us that already have the 80's down pat-- and way ahead of ourself, feeling 50 would be a blessing!!!!!! LOL!

Love to you, and thanks for the hug!************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Thank you --it is so wonderful that we have this group-- and access to one another for support.

It scares me to think of the day when I may not be able to do all that I can now-- so I don't go there often.

Take care,

Tracie************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Tracie,

Virtual hugs and a birthday backrub to you! I turned 50 last June and

was worried nobody would remember. Luckily one of my renewed

acquaintances invited my husband and me for a lovely dinner. She gave

me a CD which I cherish. It wasn't big, but it was dear to me. Most of

my " friends " don't make time to keep up with me. I have to constantly

stay in touch with them. I find it hard on the ego. Many days I am

simply not up to it. What I am trying to say is I relate so much to

what you said. The difficulties coping with everyday activities, the

isolation --and it's hard to reach out, to admit we are needy, and

lonely. Thanks to all of you, I make it one day at a time. I don't

write very much because I find it hard, but I read every entry, and I

cry often thinking how much you are all like me. Tracie, you have

become a very dear friend. You give so much of your time. You are so

patient with all of us, all our questions, moaning and groaning.

But just think how it was even 5 or 6 years ago. Internet support

groups? Not many. I live in a very rural part of Canada. There is

nobody around here with anything like what I have. Now at least we

have each other. Thank you for sharing your innermost thoughts and

needs with us. I feel privileged. I am always here for you.

Your friend,

[Guest guest]

That's for sure!!Debbietiodaat@... wrote: I heard that the 50s is the new 20s, and the women I talk to that are in there 50s say this is the best part of their life so far!! LOL! But for those of us that already have the 80's down pat-- and way ahead of ourself,

feeling 50 would be a blessing!!!!!! LOL! Love to you, and thanks for the hug!************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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