CHECKING IN

[Guest guest]

HELLO TO ALL, HAPPY BELATED BIRTHDAYS TO

THOSE I HAVE MISSED!!! WELL I JUST HAD MY FIRST BOUGHT OF THE SARC MONSTER THAT REALLY KNOCKED ME DOWN HARD!!! I HAD SYMPTOMS OF A STROKE ENDED UP IN THE HOSPITAL FOR A WEEK . THEY DID EVERYTHING BUT ANAL PROBED ME LOL!! I HAD ABOUT 6 MRIS 4 CAT SCANS , EKG, ECOCARDIOGRAM WITH BUBBLE STUDY, CRANIAL ANGIOGRAM,SPINAL TAP, TEE (WHICH IS REALLY FUN SWALLOWING A CAMERA,) CAROTID SONOGRAM, EEG AND THEN A 24 HOUR EEG WHICH AS MY HUSBAND SAID LOOKED LIKE A DISPLACED PERSON WITH AN UPSIDE DOWN EASTER BASKET!!! IF I EVER FIGURE OUT HOW TO PUT THE PICTURE ON THE WEB SITE I WILL. NOT MUCH PRIVACY WITH THE WHOLE EEG I AM SURE I WILL BE ON U-TUBE FOR MY POTTY PORN LOL!! ANYWAY ON A SERIOUS NOTE THAT SUCKED AND THEY NEVER FOUND ANY THING WRONG EXCEPT THEY GET THIS THEY THINK IT IS THE NS IN THE BRAIN. WELL MY HUBBY HAD ,HAD ENOUGH OF ME GETTING POKED AND PRODED THAT HE AGAINST MEDICAL ADVICE TOOK ME OUT OF THERE. (BESIDES I COULD NOT STAND BEING AWAY FROM MY KIDS AGES 11,12,AND 16.ANY MORE!!! MY HUSBAND DAVID CALLED CLEVELAND CLINIC AND THE DOC THERE SAID GOOD THAT HE GOT ME OUT OF THERE WHEN HE DID!! SHOULD HEAR ABOUT THE REMICADE INFUSIONS BY THE END OF THIS WEEK!! ANY THING I MIGHT NEED TO KNOW BEFORE I GO THIS ROUTE? I KNOW THIS IS A SLOW MOVING DISEASE BUT I WAS JUST DIAGNOSED IN AUG 08 AND AM 38 YEARS OLD AND HAVING ALOT OF TROUBLE RATHER QUICKLY!! HOPE EVERYONE IS FEELING BETTER. I KNOW I AM SINCE I AM HOME THERE IS KNOW PLACE LIKE HOME!! BLESSING TO ALL ,

BARB

[Guest guest]

Hey Barb

Welcome home. My NS came on all of a sudden and I spent 31 days in the hospital and 5 months in a Nursing Home. I had 6 spinal taps in a month and all the other crap too. It was hell. Well I am home and doing really well except for this no eating thing right now. So I guess it never acts quite the same with everyone. You take care of you and God Bless.

Jackie

Fwd: CHECKING IN

HELLO TO ALL, HAPPY BELATED BIRTHDAYS TOTHOSE I HAVE MISSED!!! WELL I JUST HAD MY FIRST BOUGHT OF THE SARCMONSTER THAT REALLY KNOCKED ME DOWN HARD!!! I HAD SYMPTOMS OF A STROKEENDED UP IN THE HOSPITAL FOR A WEEK . THEY DID EVERYTHING BUT ANALPROBED ME LOL!! I HAD ABOUT 6 MRIS 4 CAT SCANS , EKG, ECOCARDIOGRAM WITH BUBBLE STUDY, CRANIAL ANGIOGRAM,SPINAL TAP, TEE (WHICH IS REALLYFUN SWALLOWING A CAMERA,) CAROTID SONOGRAM, EEG AND THEN A 24 HOUR EEGWHICH AS MY HUSBAND SAID LOOKED LIKE A DISPLACED PERSON WITH AN UPSIDEDOWN EASTER BASKET!!! IF I EVER FIGURE OUT HOW TO PUT THE PICTURE ON THEWEB SITE I WILL. NOT MUCH PRIVACY WITH THE WHOLE EEG I AM SURE I WILL BEON U-TUBE FOR MY POTTY PORN LOL!! ANYWAY ON A SERIOUS NOTE THAT SUCKEDAND THEY NEVER FOUND ANY THING WRONG EXCEPT THEY GET THIS THEY THINK ITIS THE NS IN THE BRAIN. WELL MY HUBBY HAD ,HAD ENOUGH OF ME GETTINGPOKED AND PRODED THAT HE AGAINST MEDICAL ADVICE TOOK ME OUT OF THERE.(BESIDES I COULD NOT STAND BEING AWAY FROM MY KIDS AGES 11,12,AND16.ANY MORE!!! MY HUSBAND DAVID CALLED CLEVELAND CLINIC AND THE DOCTHERE SAID GOOD THAT HE GOT ME OUT OF THERE WHEN HE DID!! SHOULD HEARABOUT THE REMICADE INFUSIONS BY THE END OF THIS WEEK!! ANY THING I MIGHTNEED TO KNOW BEFORE I GO THIS ROUTE? I KNOW THIS IS A SLOW MOVINGDISEASE BUT I WAS JUST DIAGNOSED IN AUG 08 AND AM 38 YEARS OLD ANDHAVING ALOT OF TROUBLE RATHER QUICKLY!! HOPE EVERYONE IS FEELING BETTER.I KNOW I AM SINCE I AM HOME THERE IS KNOW PLACE LIKE HOME!! BLESSING TOALL ,BARB--- End forwarded message ---

[Guest guest]

it took 7 yrs to diagnose my ns. I've had the same exams you've had. it does suck.

there's been some improvement, but there's a ways to go. God Bless

Subject: Re: Fwd: CHECKING INTo: Neurosarcoidosis Date: Monday, February 9, 2009, 5:22 PM

Hey Barb

Welcome home. My NS came on all of a sudden and I spent 31 days in the hospital and 5 months in a Nursing Home. I had 6 spinal taps in a month and all the other crap too. It was hell. Well I am home and doing really well except for this no eating thing right now. So I guess it never acts quite the same with everyone. You take care of you and God Bless.

Jackie

Fwd: CHECKING IN

HELLO TO ALL, HAPPY BELATED BIRTHDAYS TOTHOSE I HAVE MISSED!!! WELL I JUST HAD MY FIRST BOUGHT OF THE SARCMONSTER THAT REALLY KNOCKED ME DOWN HARD!!! I HAD SYMPTOMS OF A STROKEENDED UP IN THE HOSPITAL FOR A WEEK . THEY DID EVERYTHING BUT ANALPROBED ME LOL!! I HAD ABOUT 6 MRIS 4 CAT SCANS , EKG, ECOCARDIOGRAM WITH BUBBLE STUDY, CRANIAL ANGIOGRAM,SPINAL TAP, TEE (WHICH IS REALLYFUN SWALLOWING A CAMERA,) CAROTID SONOGRAM, EEG AND THEN A 24 HOUR EEGWHICH AS MY HUSBAND SAID LOOKED LIKE A DISPLACED PERSON WITH AN UPSIDEDOWN EASTER BASKET!!! IF I EVER FIGURE OUT HOW TO PUT THE PICTURE ON THEWEB SITE I WILL. NOT MUCH PRIVACY WITH THE WHOLE EEG I AM SURE I WILL BEON U-TUBE FOR MY POTTY PORN LOL!! ANYWAY ON A SERIOUS NOTE

THAT SUCKEDAND THEY NEVER FOUND ANY THING WRONG EXCEPT THEY GET THIS THEY THINK ITIS THE NS IN THE BRAIN. WELL MY HUBBY HAD ,HAD ENOUGH OF ME GETTINGPOKED AND PRODED THAT HE AGAINST MEDICAL ADVICE TOOK ME OUT OF THERE.(BESIDES I COULD NOT STAND BEING AWAY FROM MY KIDS AGES 11,12,AND16.ANY MORE!!! MY HUSBAND DAVID CALLED CLEVELAND CLINIC AND THE DOCTHERE SAID GOOD THAT HE GOT ME OUT OF THERE WHEN HE DID!! SHOULD HEARABOUT THE REMICADE INFUSIONS BY THE END OF THIS WEEK!! ANY THING I MIGHTNEED TO KNOW BEFORE I GO THIS ROUTE? I KNOW THIS IS A SLOW MOVINGDISEASE BUT I WAS JUST DIAGNOSED IN AUG 08 AND AM 38 YEARS OLD ANDHAVING ALOT OF TROUBLE RATHER QUICKLY!! HOPE EVERYONE IS FEELING BETTER.I KNOW I AM SINCE I AM HOME THERE IS KNOW PLACE LIKE HOME!! BLESSING TOALL ,BARB--- End forwarded message ---

[Guest guest]

Hi Matt, That's a Friday, I will keep the whole day open for you, so call me when you know the time you will be in town. Will be good to see you again! Marla

Will do, have my appt on the 29 of April thru may 1 so hope to see u around then, Matt

Hi Matt, I should be here, at this point of no plans as na is still in

school then, so let me know when you are passing through. Love to see you, Marla

HI Marla, I will be going back to NJH on the 29 of April and would love to meet up with u again if u are going to be around. Hope all is well with you, Matt in Seattle

Hi Cherisse,

That's one of the big questions, losing the prednisone weight? I just read a post that said she lost all her steroid wt. that is awesome,

I think many of us struggle with this, I have lost some of the weight, but I am trying, I have only lost like 5, only to gain back 10.

But then I had a liver Bx and was told I had a " fatty liver " , and needed to lose " 10% of my body wt. in 6 months " Well it's been 5 months and

I've only lost 1/2 the weight. It is a difficult thing to do. I also think it is harder, as we find ourselves home more, which at least for me,

means grazing all day, and that's not on grass! It's important to learn to live with the Sarcoid, that means life style changes,

job change or maybe no job, this is difficult if we have worked all our life It is better to learn to live with it, not that we shouldn't be

treating it, yes, anyway to make life easier is important, and that is living with it too.

Blessings, Marla

Hello everyone just a little check note.The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go away

Has anyone lost any weight whilst on steroids?From Cherisse

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...

www.marykay.com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine upon

You,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

-- Marla BramerIndependent Beauty Consultant Kay

mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

I hope everyone had a wonderful Christmas and any other holiday our members celebrate. Mine was bitter sweet. My mother lost her battle with lung cancer one week ago today. All she wanted was to see the grandkids, great grands and one great, great grand she had never seen before. My daughter got a roll of film developed and was able to send her some pictures. You would have thought my mother had hit the lottery the way she talked and talked about baby Ava. I'll be in and out as I learn how to deal with this grief knowing I have friends here even if I'm not online often. Treasure all your loved ones, family and friends. Hug them tightly and often. Always end your visits or phone conversations with " Join our Sock

Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, December 24, 2009, 12:57 PM

Tracie,

In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie

[Guest guest]

Always end your phone conversations and visits with "I LOVE YOU"

Sorry I messed up with the mouse. I'm starting to have a little trouble with the hand eye coordination stuff.

Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, December 24, 2009, 12:57 PM

Tracie,

In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie

[Guest guest]

, I'm sorry to hear about your Mother, yes it is very hard to lose a parent, My 

Dads been gone 22 years, and it still feels like yesterday.  It does however get easier with time, the first years is the hardest for sure.  My Mom is here 

until 1/3, we all love having her around, I know what you mean by Cherish our loved ones.  Please know you are in my prayers. 

Marla 

 

I hope everyone had a wonderful Christmas and any other holiday our members celebrate.  Mine was bitter sweet.  My mother lost her battle with lung cancer one week ago today.  All she wanted was to see the grandkids, great grands and one great, great grand she had never seen before.  My daughter got a roll of film developed and was able to send her some pictures.  You would have thought my mother had hit the lottery the way she talked and talked about baby Ava.  I'll be in and out as I learn how to deal with this grief knowing I have friends here even if I'm not online often.  Treasure all your loved ones, family and friends.  Hug them tightly and often.  Always end your visits or phone conversations with "  

Join our Sock

Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/

grannylunatic@...

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. com

Date: Thursday, December 24, 2009, 12:57 PM

Tracie,

 

        In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

 

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed. 

Wish you all a merry Christmas

 

Hugs,

Tracie

[Guest guest]

My condolences to you & your family. We will keep you in our hearts and prayers. Take care of yourself. Matt

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, December 24, 2009, 12:57 PM

Tracie,

In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie

[Guest guest]



I lost my father in 1970. Although it is getting easier there are still times I miss him so much. My mother just had a bypass with open heart surgery and we watch her like a hawk.

I know there is nothing to be said to ease the pain but know you are in my prayers. Remember the good times and smile.

Jackie

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie

[Guest guest]

Dearest :

My condolences to you and your family.

I totally agree about ending telephone conversations and visits with "I Love you."

There is a song by Garth , "If tomorrow Never Comes". The verse he sings states: Tell the people that you love, just what you're thinking of--if tomorrow never comes.

My prayers go out to you, your family and "our" Neurosarcoidosis family, as well.

On that note, I'd like to leave with all--- a passage from the bible, which I turn to, when I'm having a bad day.

"Trust in the Lord, with all thine heart, and lean not

unto thine own understanding. In all thine ways,

acknowledge him, and he will direct thy path".

Proverbs 3:5 & 6

So , I Love You and also the brothers & sisters at Neurosarcoidosis Group! God Bless.

June Heileman

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, December 24, 2009, 12:57 PM

Tracie,

In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie

[Guest guest]

Dear ,

I am sorry for your loss. I too lost my Mom from lung cancer. It will be two years this April. She struggled so hard to survive but after 23 months it was her time to rest. The memories we have of her carry us through each day. Sometimes just a word will trigger a memory and will make me either smile or cry...but we do remember her...and we always will.

Your words, "always end your phone conversations with "I love you" is something you learned from your Mom...and what a great lesson that was! Thank you and God Bless.

from the centre of Canada

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, December 24, 2009, 12:57 PM

Tracie,

In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie

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