Re: Re:been away/ UPDATE

February 5, 2010

Hello All,Thank you for you input and comfort. Unfortunately, I suffered a complex seizure and mild stroke last week.I was just released from the hospital last night. I tried driving to altitude to spend the day in the mountainswith my children. When I got there, respitory distress set in, then neuro confusion/ seizure/and stroke.Wow, did I ever step in it. My last chest HRCT showed 40-50 new cysts in my lungs compared tolast year. I seem to have more cysts than I do scarring. Has anyone else experienced this?ThanksTo: Neurosarcoidosis Sent: Mon, February 1, 2010 12:35:30 PMSubject: Re:been away for months..(SHANNON).

Hi ,

Sorry I have been unable to answer your email until now. My computer

crashed Saturday morning and I have been working on it since then.

First, you have NOT failed. This awful disease is not your fault.

You,

like so many of us, have been dealt this awful hand and we must fight to

stay alive and on top of the old Sarc Monster..... (I named him that back in

1997) :-) I am so sorry you have lost your marriage, your career, your

house, and that you have no family to help. I am fortunate in that sense.

I

have a WONDERFUL HUSBAND who stands by me to help and does help

me a lot. I had to give up my career also, but we do have a home and I have

a big, loving, and understanding family. I am truly blessed. I have 5

grown

children, 11 grandchildren, and am getting my 4th great grandchild in a few

days. 3 1/2 years ago, I spent over 3 months in the hospital and almost

died....

called the family in 3 times and I had ALL the children at the hospital for

about a week and then they made sure at least 2 were there with me around

the clock! I was not left alone. And......... we live 100 miles from the

hospital.

So........I am truly blessed and I know it.

Sorry to be so long, but I want you to know that none of this is

your fault.

I see you had a stroke a couple of years ago, also. How are you doing with

that??

It is common for Sarc to attack all parts of the body and in some people it

is more

than others...... .sounds like you have the lung problem, eyes, and the pain.

My sarc

started in my lungs and mine are heavily damaged. I also have the eye

problem, and

the pain. I cannot take a lot of pain meds because of allergies, so I can

only take

Motrin. It does not stop the pain, but it does make it bearable. My sarc

invades the

organs it wants to and when it wants to. I have a lot of bowel trouble,

stomach trouble, and skin problems.

What I want to get across to you is this: NEVER GIVE UP THE

FIGHT! We have 600+ members here and we are a loving, caring, family.

There are so many who

are knowledgeable about this disease and have worked in the medical field.

There are

many who generously post help when questions are answered and they have

experience

to help. Please, do not be afraid to ask questions. I see a couple of our

members have answered your email and I appreciate that. Sorry I was not

here sooner.

Sending lots of hugs and prayers,

Hugs,

Darlene

NS Co-Owner/Moderator

been away for months...

> Just wanted to reconnect. I joined late August when I finally was dx'd

> after nearly dying from a torn artery in my brain. So many emotions run

> through your body throughout the day it can be exhausting. Not even

> counting the physical aspects.

> Somehow, I guess I thought that after finally getting a correct diagnosis,

> I would finally get help, be cured and go back to my life. Or at least be

> stable. Life has been anything but and I feel like I have failed.

> I lost my marriage, career, my house, and am raising children alone with

> no other living family. Friendships fell too.

> I did finally get my brain sort of back on track but.... the rest of my

> body has now fallen apart. This started for me as a sudden stroke 2 years

> ago. I never realized what was in store for me after that.

>

> Suddenly, my body is in unbearable pain and my lungs look like swiss

> cheese. Oh god, my vision! I lost my drivers license too.

>

> I am so sorry for complaining, I guess I just finally accepted that this

> disease has consumed me and I need help. First, I am on blood thinners so

> NSAIDS are contraindicated. Narcotics make me vomit!

> Can anyone make a suggestion on what to take for pain? It is excrutiating

> right now. So bad at night I cannot sleep. I have never experienced this

> before and this acute flare is going on over 1 month now.

> I spend all the energy I have these days on just surviving financially,

> taking care of my children and keeping a roof over our heads.

> Thank you all for listening and I look froward to participating more.

>

> ------------ --------- --------- ------

>

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February 8, 2010

Glad you are out of the hospital. Hope you are feeling better now. Take care of yourself. MattSubject: Re: Re:been away/ UPDATETo: Neurosarcoidosis Date: Friday, February 5, 2010, 9:08 PM

Hello All,Thank you for you input and comfort. Unfortunately, I suffered a complex seizure and mild stroke last week.I was just released from the hospital last night. I tried driving to altitude to spend the day in the mountainswith my children. When I got there, respitory distress set in, then neuro confusion/ seizure/and stroke.Wow, did I ever step in it. My last chest HRCT showed 40-50 new cysts in my lungs compared tolast year. I seem to have more cysts than I do scarring. Has anyone else experienced this?ThanksTo: Neurosarcoidosis@ yahoogroups. comSent: Mon, February 1, 2010 12:35:30 PMSubject: Re:been away for months..(SHANNON) .