RE: neurosarcoidosis suffer for 6 years

[Guest guest]

I am so sorry to hear that you

lost your husband through all this, I am very thankful for having Sherif,!!! At

times though I don’t think he truly understands how I feel. He can say he

does but He has no idea !!! a very long time ago I was going to my

x-family dr !! yes that’s right “x” because she looked at me

and said “ you need to learn to live with it, its just a headache”

and me and my late husband got up and walked out the door never to look back.

When people stop having compassion

for others feelings that’s when I am going.

Good luck Jackie Edge.

Many hugs and a pain free day

In Pa(((()))))

From:

Neurosarcoidosis [mailto:Neurosarcoidosis ] On

Behalf Of JACKIE EDGE

Sent: Monday, June 02, 2008 10:27 AM

To: Neurosarcoidosis

Subject: neurosarcoidosis suffer for 6 years

hi my name is jackie i have just read a few emails on partners not

understanding please think how lucky you are to have a partner to talk to mine

left just after i came out of hospital he told me he no longer loved me on

getting home from hospital i had been in for a month he stayed in a hotel with

someone else while i was in hospital i did not know anything was wrong we had

been married 25 years and were planing to go away for our silver wedding

aniversiry i wish i still had him with me now but i know he was a cowid and

cheat i believed nothing was wrong with our marrage so you can see what a shock

this was i live with my son and daughter who he has not contacted since so i

suppose i just had to email to say how lucky you are and i hope you all stay

together i know how hard this illness is i have all the sytoms but no one to

talk to i cry inside my heart but cant let the kids know how i feel i am lonley

and scared i dont know what the future holds and pray in my way each day i do

wish you could all feel better please excuse the spellings but that seems to be

going too

[Guest guest]

Hi Jackie, I'm so sorry for what you are going through. I do have to stop myself at times, and thank god that I do have a partner that is with me, might not understand what I am going through, but hey, I dont even understand what i am going through. But, thankful that I do have somebody. You are right. next time I feel like complaining, I will think of this email you wrote. I hope you are hanging in there the best you can. Lean on us...between everyone in this support group, we have large shoulders to cry on. We are here for you, Jackie, in anyway we can be. You are in my prayers.

Christy

Subject: neurosarcoidosis suffer for 6 yearsTo: Neurosarcoidosis Date: Monday, June 2, 2008, 9:26 AM

hi my name is jackie i have just read a few emails on partners not understanding please think how lucky you are to have a partner to talk to mine left just after i came out of hospital he told me he no longer loved me on getting home from hospital i had been in for a month he stayed in a hotel with someone else while i was in hospital i did not know anything was wrong we had been married 25 years and were planing to go away for our silver wedding aniversiry i wish i still had him with me now but i know he was a cowid and cheat i believed nothing was wrong with our marrage so you can see what a shock this was i live with my son and daughter who he has not contacted since so i suppose i just had to email to say how lucky you are and i hope you all stay together i know how hard this illness is i have all the sytoms but no one to talk to i cry inside my heart but cant let the kids know how i feel i am lonley and scared i dont know what the future holds

and pray in my way each day i do wish you could all feel better please excuse the spellings but that seems to be going too

[Guest guest]

Jackie, I am sorry for the delay in this email, and I'm sorry to hear about your marriage, I hear it so much anymore, but that doesn't make it right. I'm sorry you are lonely, can you not talk to your kids about your illness? I find that is what gets me through the days, even my 12 year daughter knows I'm sick, she says it sucks and I agree but we can talk about it, it's especially hard in the summer when she wants to do so much, and I just can't, I can't make plans because I don't know how I am going to feel. I have two boys, 19 and 23, that still live at home, and another " adopted " as we call him boy 18, and they all know I'm sick, and if they didn't I could not imagine life, I rely on my kids for many things, sometimes it's just to listen to me on how I feel. I really think you would be surprised. when I get down on the floor to do something (I forget I can't get back up) I just yell for one of my kids to come and help me up. My 19yo likes to tell me I'm faking, I just smile, but the other day when I was on the floor and asked him to help me, he gave me his hand, and pulled and I just swung around like a monkey in a tree, he said boy you really can't get up, and had to put his arms under my arms and PULL me up, I think he was surprised, and said you shouldn't get on the ground like that again. Then you don't have to hide things, you have someone to talk with, and mind you my family doesn't like to hear about it all the time, sometimes, I get, " Ya Mom I know, you've told me before " , and I either say, OK, or " well you can just hear it again " . I don't hide it from anyone. Now do I keep some things from them, yes, some days I cry alone, frustrated, nothing seems to be going right, etc.. you know. like tonight I feel like being sad alone.

then thought about checking the emails I haven't had time to respond to, you know if you had cancer, or MS, or something like that, people would listen, so why do we want to keep Sarcoid from our family and friends. The more we get out there, the more likely we will find others, that we can help, and maybe even get more funding, so we can get our drugs easier, and disability easier.

I really believe we should not keep this to ourselves or in our self, that only makes it hurt more. I hope you find this helpful. But most of all I want you to know that you can talk all you want about it here, as we do understand what you are going through, so ask questions, rant and rave, cry or just be here. We want to be your friend, we are a great big family of Sarcoidsois here and welcome you. Please lean on us.

Marla

hi my name is jackie i have just read a few emails on partners not understanding please think how lucky you are to have a partner to talk to mine left just after i came out of hospital he told me he no longer loved me on getting home from hospital i had been in for a month he stayed in a hotel with someone else while i was in hospital i did not know anything was wrong we had been married 25 years and were planing to go away for our silver wedding aniversiry i wish i still had him with me now but i know he was a cowid and cheat i believed nothing was wrong with our marrage so you can see what a shock this was i live with my son and daughter who he has not contacted since so i suppose i just had to email to say how lucky you are and i hope you all stay together i know how hard this illness is i have all the sytoms but no one to talk to i cry inside my heart but cant let the kids know how i feel i am lonley and scared i dont know what the future holds and pray in my way each

day i do wish you could all feel better please excuse the spellings but that seems to be going too

-- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com

'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope

[Guest guest]

Jackie what a horrible experience. It is so very painful when people

we love and trust betray us. I also have had experiences similar to

yours. My stepmother threw me out of the house the day after my dad

died unexpectedly. My mom had died when I was 12.

The best thing I can suggest is looking for a support group in

addition to being with your online family. I am sending you the

bigest hug you have ever received. Hang in there. The responsibility

for what happened is not you. He was the jerk that did not live up to

his commitment.

Judy in PA

>

> hi my name is jackie i have just read a few emails on partners not

understanding please think how lucky you are to have a partner to

talk to mine left just after i came out of hospital he told me he no

longer loved me on getting home from hospital i had been in for a

month he stayed in a hotel with someone else while i was in hospital

i did not know anything was wrong we had been married 25 years and

were planing to go away for our silver wedding aniversiry i wish i

still had him with me now but i know he was a cowid and cheat i

believed nothing was wrong with our marrage so you can see what a

shock this was i live with my son and daughter who he has not

contacted since so i suppose i just had to email to say how lucky you

are and i hope you all stay together i know how hard this illness is

i have all the sytoms but no one to talk to i cry inside my heart but

cant let the kids know how i feel i am lonley and scared i dont know

what the future holds and pray in my way each

> day i do wish you could all feel better please excuse the

spellings but that seems to be going too

>