Re: I have systemic sarcoidosis and a liver transplant

[Guest guest]

Sissy, welcome. I have terrible memory so i can only direct you to look through the site for any info you might need. But I try to be here for talking about our lives and will be here for you if you need to vent. I will have my first granddaughter sometime in January so we do have that in common. I am 52 years young.....lol. You have many more physical problems than I do but I would try to be a friend if you need one. Hopefully others will help with any questions you need answered. Please be patient because we are all sick, too, and don't always get back and answer posts as quickly as we'd like to. Hang in there and we will try to support you through this. hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

Subject: I have systemic sarcoidosis and a liver transplantTo: Neurosarcoidosis Date: Tuesday, November 18, 2008, 11:06 PM

Since age five when I was diagnosed with Sarcoidosis. It has interrupted my life with serious illnesses and surgeries, to include a liver transplant in 1996. I am in quite a dilemma here because since the transplant I've been on immunosupressants. I've also lost other internal organs. I am a lovely 50 years old now, and I've still got lots to live for. I an writing this to find someone who might be in my perdicament or close to it. What is bothering me now is that other things are going wrong. I have begun to feel aches and pains in my joints and muscles. I am not financially able to have private insurance, and I an not on disability; it doesn't pay enough to live on. So I go to the local VA clinic because, yes I'm, a veteran. However; I know that the care I'm getting there is far below the best, I have no other choice. I would like to know if there is a foundation or organization who could or

maybe would help me. Nine months ago my beautiful grand daughter was born. I was thinking kinda negative until then, now I would like to be around for a while longer. If no one on this site can lead me in the direction of help, I would still appreciate chatting with others who understand what I'm feeling.

[Guest guest]

Hi Jackie,

I am so pleased that someone wrote me back! I was nervous about putting my life out there for the world to see, but it will help me greatly if I could talk to others like yourself from time to time. If nothing else we can pray for each other.

To: Neurosarcoidosis Sent: Wednesday, November 19, 2008 9:08:25 PMSubject: Re: I have systemic sarcoidosis and a liver transplant

Welcome to the group Sissy. I have NS for three years now. It has affected my every day life in so many ways.

I too was thinking negatively at one point. My grandchildren keep me going. I want to see them get married and have children of their own. Although they are no longer babies, three twelve year olds and one eleven, I get such enjoyment from them.

This is the best place I have found to get information about this monster. I sing their praises daily.

I am sorry you had to meet us this way but oh so happy you found us.

Prayers for you and yours.

Jackie

I have systemic sarcoidosis and a liver transplant

Since age five when I was diagnosed with Sarcoidosis. It has interrupted my life with serious illnesses and surgeries, to include a liver transplant in 1996. I am in quite a dilemma here because since the transplant I've been on immunosupressants. I've also lost other internal organs. I am a lovely 50 years old now, and I've still got lots to live for. I an writing this to find someone who might be in my perdicament or close to it. What is bothering me now is that other things are going wrong. I have begun to feel aches and pains in my joints and muscles. I am not financially able to have private insurance, and I an not on disability; it doesn't pay enough to live on. So I go to the local VA clinic because, yes I'm, a veteran. However; I know that the care I'm getting there is far below the best, I have no other choice. I would like to know if there is a foundation or organization who could or maybe

would help me. Nine months ago my beautiful grand daughter was born. I was thinking kinda negative until then, now I would like to be around for a while longer. If no one on this site can lead me in the direction of help, I would still appreciate chatting with others who understand what I'm feeling.

[Guest guest]

Thank you for writing me. It is very nice of you take the time to do so. Someone else in the group wrote me too. I feel blessed. Today I went to see a Dr. at Shands hospital here in Florida. I had some good news and some bad news, it seems that the meds I was given for my transplant may have damaged my kidneys somewhat. I live in another part of Florida so the trip back home was kinda crazy. I didn't know if I should laugh or cry, but in the end I decided to keep on smiling. I'll keep looking for info and follow doctor's orders and maybe tomorrow I'll have better news. One day at a time.....

Thanks for the hugs,

sissy

To: Neurosarcoidosis Sent: Wednesday, November 19, 2008 3:17:55 PMSubject: Re: I have systemic sarcoidosis and a liver transplant

Sissy, welcome. I have terrible memory so i can only direct you to look through the site for any info you might need. But I try to be here for talking about our lives and will be here for you if you need to vent. I will have my first granddaughter sometime in January so we do have that in common. I am 52 years young.....lol. You have many more physical problems than I do but I would try to be a friend if you need one. Hopefully others will help with any questions you need answered. Please be patient because we are all sick, too, and don't always get back and answer posts as quickly as we'd like to. Hang in there and we will try to support you through this. hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).

From: sissymilton <sissymilton@ yahoo.com>Subject: I have systemic sarcoidosis and a liver transplantTo: Neurosarcoidosis@ yahoogroups. comDate: Tuesday, November 18, 2008, 11:06 PM

Since age five when I was diagnosed with Sarcoidosis. It has interrupted my life with serious illnesses and surgeries, to include a liver transplant in 1996. I am in quite a dilemma here because since the transplant I've been on immunosupressants. I've also lost other internal organs. I am a lovely 50 years old now, and I've still got lots to live for. I an writing this to find someone who might be in my perdicament or close to it. What is bothering me now is that other things are going wrong. I have begun to feel aches and pains in my joints and muscles. I am not financially able to have private insurance, and I an not on disability; it doesn't pay enough to live on. So I go to the local VA clinic because, yes I'm, a veteran. However; I know that the care I'm getting there is far below the best, I have no other choice. I would like to know if there is a foundation or organization who could or

maybe would help me. Nine months ago my beautiful grand daughter was born. I was thinking kinda negative until then, now I would like to be around for a while longer. If no one on this site can lead me in the direction of help, I would still appreciate chatting with others who understand what I'm feeling.

[Guest guest]

Hi Greg

I just went to the hospital today because myliver functions were off, only to find that my liver function appears to be getting better, but the meds I'm taking for the transplant have negatively affected my kidneys. I'm always greatful for prayers and I will pray for you and all the others who have written me. I have dealt with this as I said previously, for 45 years and I know that I am truly blessed. I know that God must have a purpose for me here, so I plan on living one day at a time. Oh yeah! Great to hear from a fellow vet. I was in the intelligence and security command (INSCOM) and spent most of my time in the Far East.

sissy

To: Neurosarcoidosis Sent: Tuesday, November 18, 2008 9:08:16 PMSubject: Re: I have systemic sarcoidosis and a liver transplant

sissymilton,I am new this group. But like to welcome you anyway. I have beendiagnosed with neurosarcoidosis in the last 9 months. I am also aVeteran 82nd ABN DIV 2 conflicts. I was suggest asking the moderatorsthe seem to have alot of experience and good advice cause I am stilllearning about this monster. But I will be glad to chat with you. Ifyou do not mind I will add to my prayers.Greg aka Krumdawg>> Since age five when I was diagnosed with Sarcoidosis. It has > interrupted my life with serious illnesses and surgeries, to include > a liver transplant in 1996. I am in quite a dilemma here because > since the transplant I've been on immunosupressants.

I've also lost > other internal organs. I am a lovely 50 years old now, and I've still > got lots to live for. I an writing this to find someone who might be > in my perdicament or close to it. What is bothering me now is that > other things are going wrong. I have begun to feel aches and pains in > my joints and muscles. I am not financially able to have private > insurance, and I an not on disability; it doesn't pay enough to live > on. So I go to the local VA clinic because, yes I'm, a veteran. > However; I know that the care I'm getting there is far below the > best, I have no other choice. I would like to know if there is a > foundation or organization who could or maybe would help me. Nine > months ago my beautiful grand daughter was born. I was thinking kinda > negative until then, now I would like to be around for a while > longer. If no one on this site

can lead me in the direction of help, > I would still appreciate chatting with others who understand what I'm > feeling.>

[Guest guest]

Thank you so much for writing, several members have written to me and today it made a great deal of difference. God is so good. He allowed to find this site so that I could see that I was not alone. I came here looking for help and I have found it in many ways. I hope that I can be of help to someone. Be blessed.

sissy

To: Neurosarcoidosis Sent: Wednesday, November 19, 2008 12:16:55 PMSubject: Re: I have systemic sarcoidosis and a liver transplant

Welcome Sissy,

You have found a wonderful caring family here, we are all dealing with Sarcoidosis in one way or another, and we welcome your questions, thoughts, and more.

As Tracie told you MSM is very helpful for the joints, I know she get powder, I have just been

buying it at any drug store, I take it twice a day, I also have my husband on it, as he has

a family history of arthritis and started complaining about his joints. I find it works great for

me. also hydration, drink to keep the fluids in your joints, so they don't dry out, some days

I forget and can tell a difference.

I have a niece that was diagnosed with Rheumatoid Arthritis when she was just 2, and has had

good days and bad, so I'm sure that was difficult to be diagnosed with a disease such as this

at such an early life, but happy to hear you have a reason to hang on and keep going, I too am

a lovely 50 years old, I like the way you said that. So welcome and know that we are here for you.

Blessings,

Marla

On Wed, Nov 19, 2008 at 1:06 AM, sissymilton <sissymilton@ yahoo.com> wrote:

Since age five when I was diagnosed with Sarcoidosis. It has interrupted my life with serious illnesses and surgeries, to include a liver transplant in 1996. I am in quite a dilemma here because since the transplant I've been on immunosupressants. I've also lost other internal organs. I am a lovely 50 years old now, and I've still got lots to live for. I an writing this to find someone who might be in my perdicament or close to it. What is bothering me now is that other things are going wrong. I have begun to feel aches and pains in my joints and muscles. I am not financially able to have private insurance, and I an not on disability; it doesn't pay enough to live on. So I go to the local VA clinic because, yes I'm, a veteran. However; I know that the care I'm getting there is far below the best, I have no other choice. I would like to know if there is a foundation or organization who could or maybe

would help me. Nine months ago my beautiful grand daughter was born. I was thinking kinda negative until then, now I would like to be around for a while longer. If no one on this site can lead me in the direction of help, I would still appreciate chatting with others who understand what I'm feeling.-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer

[Guest guest]

Welcome to the group Sissy. I have NS for three years now. It has affected my every day life in so many ways.

I too was thinking negatively at one point. My grandchildren keep me going. I want to see them get married and have children of their own. Although they are no longer babies, three twelve year olds and one eleven, I get such enjoyment from them.

This is the best place I have found to get information about this monster. I sing their praises daily.

I am sorry you had to meet us this way but oh so happy you found us.

Prayers for you and yours.

Jackie

I have systemic sarcoidosis and a liver transplant

Since age five when I was diagnosed with Sarcoidosis. It has interrupted my life with serious illnesses and surgeries, to include a liver transplant in 1996. I am in quite a dilemma here because since the transplant I've been on immunosupressants. I've also lost other internal organs. I am a lovely 50 years old now, and I've still got lots to live for. I an writing this to find someone who might be in my perdicament or close to it. What is bothering me now is that other things are going wrong. I have begun to feel aches and pains in my joints and muscles. I am not financially able to have private insurance, and I an not on disability; it doesn't pay enough to live on. So I go to the local VA clinic because, yes I'm, a veteran. However; I know that the care I'm getting there is far below the best, I have no other choice. I would like to know if there is a foundation or organization who could or maybe would help me. Nine months ago my beautiful grand daughter was born. I was thinking kinda negative until then, now I would like to be around for a while longer. If no one on this site can lead me in the direction of help, I would still appreciate chatting with others who understand what I'm feeling.

[Guest guest]

sissy

That seems to be the only way we can treat this monster, one day at a time. I am sorry to hear about your bad news but keep the faith girl. My doctor thought I would never walk again and here I am 3 years later walking. not a far distance but You won't find me in bed on my back anymore.

I used to ride motorcycle and that is my dream. too do that again.

Hey you can talk to me anytime. And this group is the bomb. Friendly, loving and impressive. Everyone.

Know that you are NOT ALONE in this. We are ALL here for you.

Blessings to you. Keep smiling now.

Jackie From Wisconsin

I have systemic sarcoidosis and a liver transplantTo: Neurosarcoidosis@ yahoogroups. comDate: Tuesday, November 18, 2008, 11:06 PM

Since age five when I was diagnosed with Sarcoidosis. It has interrupted my life with serious illnesses and surgeries, to include a liver transplant in 1996. I am in quite a dilemma here because since the transplant I've been on immunosupressants. I've also lost other internal organs. I am a lovely 50 years old now, and I've still got lots to live for. I an writing this to find someone who might be in my perdicament or close to it. What is bothering me now is that other things are going wrong. I have begun to feel aches and pains in my joints and muscles. I am not financially able to have private insurance, and I an not on disability; it doesn't pay enough to live on. So I go to the local VA clinic because, yes I'm, a veteran. However; I know that the care I'm getting there is far below the best, I have no other choice. I would like to know if there is a foundation or organization who could or maybe would help me. Nine months ago my beautiful grand daughter was born. I was thinking kinda negative until then, now I would like to be around for a while longer. If no one on this site can lead me in the direction of help, I would still appreciate chatting with others who understand what I'm feeling.

[Guest guest]

Joy,

For your stomach problems, try a gastro dr. Mine has been helping me with meds. although I have still been having tests done. I have had bad nausea and vomiting for over a year now and I know it sucks big time. At least the meds help some. Nausea is one of the worst symptoms to have continuosly.

Take care,

Debbie T.

Co-moderator

Subject: Re: I have systemic sarcoidosis and a liver transplantTo: Neurosarcoidosis Date: Tuesday, November 18, 2008, 9:39 PM

Sissy,I am so sorry. I was recently diagnosed with pulmonary sarcoidosis last month. I also have the joint pain, diabetes, stomach issues, (all of my issues are from Prednisone). I sure hope someone can lead you in the right direction. I sure hope things improve for you!! My heart goes out to you. >> Since age five when I was diagnosed with Sarcoidosis. It has > interrupted my life with serious illnesses and surgeries, to include > a liver transplant in 1996. I am in quite a dilemma here because > since the transplant I've been on immunosupressants. I've also lost > other internal organs. I am a lovely 50 years old now, and I've still > got lots to live for. I an writing this to find

someone who might be > in my perdicament or close to it. What is bothering me now is that > other things are going wrong. I have begun to feel aches and pains in > my joints and muscles. I am not financially able to have private > insurance, and I an not on disability; it doesn't pay enough to live > on. So I go to the local VA clinic because, yes I'm, a veteran. > However; I know that the care I'm getting there is far below the > best, I have no other choice. I would like to know if there is a > foundation or organization who could or maybe would help me. Nine > months ago my beautiful grand daughter was born. I was thinking kinda > negative until then, now I would like to be around for a while > longer. If no one on this site can lead me in the direction of help, > I would still appreciate chatting with others who understand what I'm >

feeling.>

[Guest guest]

Krumdawg,

It doesn't take long to learn " the monster " term really fits the disease

does it.

Terri G.

> >

> > Since age five when I was diagnosed with Sarcoidosis. It has

> > interrupted my life with serious illnesses and surgeries, to include

> > a liver transplant in 1996. I am in quite a dilemma here because

> > since the transplant I've been on immunosupressants. I've also lost

> > other internal organs. I am a lovely 50 years old now, and I've

still

> > got lots to live for. I an writing this to find someone who might be

> > in my perdicament or close to it. What is bothering me now is that

> > other things are going wrong. I have begun to feel aches and pains

in

> > my joints and muscles. I am not financially able to have private

> > insurance, and I an not on disability; it doesn't pay enough to live

> > on. So I go to the local VA clinic because, yes I'm, a veteran.

> > However; I know that the care I'm getting there is far below the

> > best, I have no other choice. I would like to know if there is a

> > foundation or organization who could or maybe would help me. Nine

> > months ago my beautiful grand daughter was born. I was thinking

kinda

> > negative until then, now I would like to be around for a while

> > longer. If no one on this site can lead me in the direction of help,

> > I would still appreciate chatting with others who understand what

I'm

> > feeling.

> >

>

[Guest guest]

Terrie G.,

No it doesn't take long the learn about the real monster.

Prior to NS the Monster was PTSD. Now NS is my Monster to slay or tame.

Greg

> > >

> > > Since age five when I was diagnosed with Sarcoidosis. It has

> > > interrupted my life with serious illnesses and surgeries, to include

> > > a liver transplant in 1996. I am in quite a dilemma here because

> > > since the transplant I've been on immunosupressants. I've also lost

> > > other internal organs. I am a lovely 50 years old now, and I've

> still

> > > got lots to live for. I an writing this to find someone who might be

> > > in my perdicament or close to it. What is bothering me now is that

> > > other things are going wrong. I have begun to feel aches and pains

> in

> > > my joints and muscles. I am not financially able to have private

> > > insurance, and I an not on disability; it doesn't pay enough to live

> > > on. So I go to the local VA clinic because, yes I'm, a veteran.

> > > However; I know that the care I'm getting there is far below the

> > > best, I have no other choice. I would like to know if there is a

> > > foundation or organization who could or maybe would help me. Nine

> > > months ago my beautiful grand daughter was born. I was thinking

> kinda

> > > negative until then, now I would like to be around for a while

> > > longer. If no one on this site can lead me in the direction of help,

> > > I would still appreciate chatting with others who understand what

> I'm

> > > feeling.

> > >

> >

>