Re: been away for months...

[Guest guest]

HI SHANNON,

I WANT TO ENCOURAGE YOU.I AM SO SORRY FOR YOUR LOST.YOU HAVE A GROUP OF MEMBERS HERE THAT ARE WILLING TO BE HERE WHEN YOU NEED US.WE CARE ABOUT YOU AND WE HURT WHEN YOU HURT.YOUR CHILDREN WILL BE OK.AS LONG AS THEY KNOW YOU LOVE THEM.I DONT TAKE PAIN MEDS.I TAKE TYLENOL WHEN I HURT.SHANNON I WILL KEEP YOU AND YOUR CHILDREN IN MY PRAYERS.I HAVE SARCOIDSIS IN THE EYES,LUNGS,BRAIN AND SARCOID ARTHIRITIS.SHANNON BE ENCOURAGED.THE OTHERS MEMBERS WILL FOLLOW WITH SUGGESTION ABOUT PAIN MEDS.I WANTED TO WELCOME YOU BACK AND ENCOURAGE YOUR SPPIRIT.

HELEN

Subject: been away for months...To: Neurosarcoidosis Date: Wednesday, January 27, 2010, 9:29 PM

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.

[Guest guest]

Helen,Thank you for your kind words. It means a lot. I pray for all of us. If I may ask? I have wide spread Sarc also, and this isa diagnosis long overdue. It seems like I have these horrible relentless attacking flares. They finish one organ system only tomove to another. Is this typical? I feel embarrassed and tend to just withdrawl rather than keep complaining about my horrificpain,neurological problems, or overwhelming fatigue. Does this make sense? Thank You, To: Neurosarcoidosis Sent: Wed, January 27, 2010 11:25:19 PMSubject: Re: been away for months...

HI SHANNON,

I WANT TO ENCOURAGE YOU.I AM SO SORRY FOR YOUR LOST.YOU HAVE A GROUP OF MEMBERS HERE THAT ARE WILLING TO BE HERE WHEN YOU NEED US.WE CARE ABOUT YOU AND WE HURT WHEN YOU HURT.YOUR CHILDREN WILL BE OK.AS LONG AS THEY KNOW YOU LOVE THEM.I DONT TAKE PAIN MEDS.I TAKE TYLENOL WHEN I HURT.SHANNON I WILL KEEP YOU AND YOUR CHILDREN IN MY PRAYERS.I HAVE SARCOIDSIS IN THE EYES,LUNGS,BRAIN AND SARCOID ARTHIRITIS.SHANNON BE ENCOURAGED.THE OTHERS MEMBERS WILL FOLLOW WITH SUGGESTION ABOUT PAIN MEDS.I WANTED TO WELCOME YOU BACK AND ENCOURAGE YOUR SPPIRIT.

HELEN

From: <shannon.stemple@ yahoo.com>Subject: been away for months...To: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 27, 2010, 9:29 PM

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.

[Guest guest]



Don't withdraw. Keep your chin up and smile.

The Group here recommends a book I think it is "but you don't look sick" I have read it and have passed it on to my family. Now I have a whole group of advocates to help me through this monster Sarc.

And when ever I need it I come here and my spirits are lifted if nothing else but the understand and love from this group.

I pray for you and those you love to understand with empathy the ups and downs of this illness.

I cried because I had no shoes, until I saw the man who had no feet. My words to live by.

Love and prayers

Jackie

been away for months...To: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 27, 2010, 9:29 PM

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.

[Guest guest]

HI SHANNON,

I DON'T KNOW IF HAVING SARC IN SEVERAL PLACES IN YOUR BODY IS TYPICAL.I DON'T HAVE A LOT OF PAIN UNLESS THE SARCOID ARTHRITIS FLARES.I HAVE HAD ONGOING PAIN IN THE PAST.THE PAIN WAS IN MY ENTIRE LEG FROM MY HIP TO MY ANKLES. I WOULD GET A TORADOL SHOT FROM MY PRIMARY CARE DOCTOR WHEN THE PAIN WOULD GO ON NONSTOP.MY ANKLES HURT A LOT AND MY SKIN FROM MY ANKLES TO MY CALF TURNS DARK AND REALLY FIRM.CONTINUE TO BE ENCOURAGED.KISS AND HUG YOUR CHILDREN OFTEN.THEIR LOVE HAS HEALING POWER ALSO.I LOOK FORWARD TO HEARING FROM YOU AGAIN SOON.THIS GROUP AND SUCH AN ENCOURAGING SPIRIT.STAY SAFE AND BE BLESSED.

HELEN

From: <shannon.stemple@ yahoo.com>Subject: been away for months...To: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 27, 2010, 9:29 PM

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.

[Guest guest]

Hi and ll,

I have systemic Sarcoidosis, it affects my liver, lymph nodes, lungs,bones, and muscle, and now I am having skin issues. I also have neuro-sarcoidosis. So if it isn't one pain it is another, or I'm wheezing and can't breath My pryers is with this group.

alice

To: Neurosarcoidosis Sent: Sat, January 30, 2010 10:16:54 PMSubject: Re: been away for months...

HI SHANNON,

I DON'T KNOW IF HAVING SARC IN SEVERAL PLACES IN YOUR BODY IS TYPICAL.I DON'T HAVE A LOT OF PAIN UNLESS THE SARCOID ARTHRITIS FLARES.I HAVE HAD ONGOING PAIN IN THE PAST.THE PAIN WAS IN MY ENTIRE LEG FROM MY HIP TO MY ANKLES. I WOULD GET A TORADOL SHOT FROM MY PRIMARY CARE DOCTOR WHEN THE PAIN WOULD GO ON NONSTOP.MY ANKLES HURT A LOT AND MY SKIN FROM MY ANKLES TO MY CALF TURNS DARK AND REALLY FIRM.CONTINUE TO BE ENCOURAGED.KISS AND HUG YOUR CHILDREN OFTEN.THEIR LOVE HAS HEALING POWER ALSO.I LOOK FORWARD TO HEARING FROM YOU AGAIN SOON.THIS GROUP AND SUCH AN ENCOURAGING SPIRIT.STAY SAFE AND BE BLESSED.

HELEN

From: <shannon.stemple@ yahoo.com>Subject: been away for months...To: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 27, 2010, 9:29 PM

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.