Insomnia Introduction

[Guest guest]

Hi Eliz,

Welcome to the family. We truly wish you did not have to be here, but since you are-- we welcome you.

You've found over 400+ people all with a common illness. Many of us have had sarcoidosis for years, and have been able to get it under control and stay employed. Some of us haven't been that lucky.

Our ARCHIVES and LINKS have a huge amount of wonderful information, on current articles that explain NS, how to go about getting SSDI if you're not able to work, medical questions and answers, different meds that are being used, and some "hoots" to keep you laughing.

Steroids are great to get the inflammation of sarcoidosis down quickly, and many people do well on them long term. Personally, it tossed me into diabetes, depression, anxiety and hyperactivity-- but I sure couldn't direct the direction I was trying to go..

Many of us have found that with a combination of medications (only add 1 at a time so you know if it helps) that we are able to do most of the daily stuff.

The exhaustion and fatigue-- which is so much more than the "i've got the flu, exhaustion) is what makes us learn to pace ourself. I don't know anyone on this site that wasn't a "very very active" person before sarc.

Life does change with sarcoidosis, and many of the changes are hard -- but many also will let you grow in ways you never imagined.

You'll find that we are family, and that we laugh, cry, swear, throw a few temper tantrums, then we laugh, brush ourself off, and go at it again.

There is so much information available now, that even 4 yrs ago wasn't out there-- so please, feel free to ask questions, and we'll do our best to help you find answers.

Sincerely,

Tracie

NS Co-owner/moderator

PS. We're all sick with this disease, so if it does take a day or two-- be patient, we'll get to you asap. If you scroll down, this and every email should give you the LINKS to the links- and archives.************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi. I am glad to have found this site on a sleepless night. I have

been really sick the past 6 months, and was finally diagnosed with

neurosarcoidosis. I am definately happy to have a diagnosis, but also

frustrated at what the diagnosis is. I have had to stop working,

driving, walking much. I was a very active person before all of this,

and am having a hard time with the loss of so much of my life when I

was just looking forward to starting a family (I started getting

really sick a month after being married)

I have sarcoid in my liver, spleen, lymph nodes, glands, bones,

sinuses, it has destroyed my pituitary, is giving me neuropothy in

arms and legs and partial numbness, and I have had a couple seizures,

terrible headaches and memory lapses. I have really low blood counts,

abnormal liver functions, lots of things going on that we could have

prevented if I was diagnosed earlier. At the place I was first

hospitalized for extreme weight loss they apparently weren't taking me

seriously because they ran drug tests on me after I had seizures.

That was helpful. Then I was told I have an extremely rare disease,

Necrobiotic Xanthogranuloms. Then I was hospitalized again because of

such a high abnormal heart rate and they said it was probably a

granulomatous infectious disease b/c I started getting really sick on

my honeymoon in the Carribean (but I now realize I had been sick

longer.) But once they took an MRI and they caught my adrenal

insuffeciency and lots of other pituitary insuffeciencies - it all

added up to sarcoid.

I am just starting treatment - 40 mg. of prednisone and then up the

dose and/or add methotrexate in a month. I just hope I start to feel

better, I want juat part of my life back.

I am trying to have a positive attitude, eat even healthier than

usual, I am trying acupuncture, meditating, and yoga although I can

hardly do it anymore. I'm hoping I will be better enough to go back

to work part time, but I will also be happy with pain free walking or

driving. There are hours, days though where I am just stuck in my bed

in pain and depressed and I don't have the energy to get up and go to

the bathroom (which is a lot from the diabeties insipidus). Six months

ago I would have loved a day to myself with all the things I can do.

Now it's not so fun.

In my old life, I had a job I absolutely loved, I did a lot of crafts,

hiking, gardening, volunteering, I liked to be around people. Now I

can't do most of these things and it is hard to hang out with friends

or co-workers because their slow speed is ultra fast for me, and I am

not even used to me being so slow.

I have a wonderful husband and a supportive family, I am very thankful

for that.

Lately I just feel too crappy to be strong and positive, and all of

this just stinks.

[Guest guest]

,

Your story sounds like it could one of many on this site. We have all

had to go through all of the stages of " death " of your old life. You

will read many stories of many people that had vibrant, active lives

that now are relagated to staying at home almost 24/7. First of all,

you have to realize there is nothing you can do but take your meds and

take care of yourself. The sooner you stop fighting with yourself and

stressing yourself out, the better.

Yoga is something I enjoy when I can do it and as you know it does a

great deal for your stress levels. There is a dvd out there you may be

able to find at Best Buy that is called " Healing Yoga " . You might be

able to do that. It is very gentle.

I am sorry you are here because this awful disease but remember we are

all here to listen to you and be there for you. Rose will even give you

a score if you want to rant. It can be a lot of fun; I have done it a

number of times.

Take care of yourself and I look forward to hearing more from you.

Terri G.

>

> Hi. I am glad to have found this site on a sleepless night. I have

> been really sick the past 6 months, and was finally diagnosed with

> neurosarcoidosis. I am definately happy to have a diagnosis, but also

> frustrated at what the diagnosis is. I have had to stop working,

> driving, walking much. I was a very active person before all of this,

> and am having a hard time with the loss of so much of my life when I

> was just looking forward to starting a family (I started getting

> really sick a month after being married)

>

> I have sarcoid in my liver, spleen, lymph nodes, glands, bones,

> sinuses, it has destroyed my pituitary, is giving me neuropothy in

> arms and legs and partial numbness, and I have had a couple seizures,

> terrible headaches and memory lapses. I have really low blood counts,

> abnormal liver functions, lots of things going on that we could have

> prevented if I was diagnosed earlier. At the place I was first

> hospitalized for extreme weight loss they apparently weren't taking me

> seriously because they ran drug tests on me after I had seizures.

> That was helpful. Then I was told I have an extremely rare disease,

> Necrobiotic Xanthogranuloms. Then I was hospitalized again because of

> such a high abnormal heart rate and they said it was probably a

> granulomatous infectious disease b/c I started getting really sick on

> my honeymoon in the Carribean (but I now realize I had been sick

> longer.) But once they took an MRI and they caught my adrenal

> insuffeciency and lots of other pituitary insuffeciencies - it all

> added up to sarcoid.

>

> I am just starting treatment - 40 mg. of prednisone and then up the

> dose and/or add methotrexate in a month. I just hope I start to feel

> better, I want juat part of my life back.

>

> I am trying to have a positive attitude, eat even healthier than

> usual, I am trying acupuncture, meditating, and yoga although I can

> hardly do it anymore. I'm hoping I will be better enough to go back

> to work part time, but I will also be happy with pain free walking or

> driving. There are hours, days though where I am just stuck in my bed

> in pain and depressed and I don't have the energy to get up and go to

> the bathroom (which is a lot from the diabeties insipidus). Six months

> ago I would have loved a day to myself with all the things I can do.

> Now it's not so fun.

>

> In my old life, I had a job I absolutely loved, I did a lot of crafts,

> hiking, gardening, volunteering, I liked to be around people. Now I

> can't do most of these things and it is hard to hang out with friends

> or co-workers because their slow speed is ultra fast for me, and I am

> not even used to me being so slow.

>

> I have a wonderful husband and a supportive family, I am very thankful

> for that.

>

> Lately I just feel too crappy to be strong and positive, and all of

> this just stinks.

>

[Guest guest]

,

I hope I did not come off too strong in my earlier post. I just wish

someone would have helped me through the first stages.....

Terri

> >

> > Hi. I am glad to have found this site on a sleepless night. I have

> > been really sick the past 6 months, and was finally diagnosed with

> > neurosarcoidosis. I am definately happy to have a diagnosis, but

also

> > frustrated at what the diagnosis is. I have had to stop working,

> > driving, walking much. I was a very active person before all of

this,

> > and am having a hard time with the loss of so much of my life when I

> > was just looking forward to starting a family (I started getting

> > really sick a month after being married)

> >

> > I have sarcoid in my liver, spleen, lymph nodes, glands, bones,

> > sinuses, it has destroyed my pituitary, is giving me neuropothy in

> > arms and legs and partial numbness, and I have had a couple

seizures,

> > terrible headaches and memory lapses. I have really low blood

counts,

> > abnormal liver functions, lots of things going on that we could have

> > prevented if I was diagnosed earlier. At the place I was first

> > hospitalized for extreme weight loss they apparently weren't taking

me

> > seriously because they ran drug tests on me after I had seizures.

> > That was helpful. Then I was told I have an extremely rare disease,

> > Necrobiotic Xanthogranuloms. Then I was hospitalized again because

of

> > such a high abnormal heart rate and they said it was probably a

> > granulomatous infectious disease b/c I started getting really sick

on

> > my honeymoon in the Carribean (but I now realize I had been sick

> > longer.) But once they took an MRI and they caught my adrenal

> > insuffeciency and lots of other pituitary insuffeciencies - it all

> > added up to sarcoid.

> >

> > I am just starting treatment - 40 mg. of prednisone and then up the

> > dose and/or add methotrexate in a month. I just hope I start to feel

> > better, I want juat part of my life back.

> >

> > I am trying to have a positive attitude, eat even healthier than

> > usual, I am trying acupuncture, meditating, and yoga although I can

> > hardly do it anymore. I'm hoping I will be better enough to go back

> > to work part time, but I will also be happy with pain free walking

or

> > driving. There are hours, days though where I am just stuck in my

bed

> > in pain and depressed and I don't have the energy to get up and go

to

> > the bathroom (which is a lot from the diabeties insipidus). Six

months

> > ago I would have loved a day to myself with all the things I can do.

> > Now it's not so fun.

> >

> > In my old life, I had a job I absolutely loved, I did a lot of

crafts,

> > hiking, gardening, volunteering, I liked to be around people. Now I

> > can't do most of these things and it is hard to hang out with

friends

> > or co-workers because their slow speed is ultra fast for me, and I

am

> > not even used to me being so slow.

> >

> > I have a wonderful husband and a supportive family, I am very

thankful

> > for that.

> >

> > Lately I just feel too crappy to be strong and positive, and all of

> > this just stinks.

> >

>

[Guest guest]

Terri,

You did not come off strong at all, I appreciate your honesty. I have

been taking your advice and not stressing myself out as much but

rather worrying about taking care and enjoying what I have now. I am

very thankful to have have found this group and am thankful for those

of you who are so sick yet giving support to others when they need it.

The disease they first diagnosed me with has 100 cases in the world,

so I am also appreciative of being diagnosed with a disease there is

more known about and is a group like this - although I really wish

none of us had to suffer this....I hope you have had a day filled with

some smiles and laughter,

> > >

> > > Hi. I am glad to have found this site on a sleepless night. I have

> > > been really sick the past 6 months, and was finally diagnosed with

> > > neurosarcoidosis. I am definately happy to have a diagnosis, but

> also

> > > frustrated at what the diagnosis is. I have had to stop working,

> > > driving, walking much. I was a very active person before all of

> this,

> > > and am having a hard time with the loss of so much of my life when I

> > > was just looking forward to starting a family (I started getting

> > > really sick a month after being married)

> > >

> > > I have sarcoid in my liver, spleen, lymph nodes, glands, bones,

> > > sinuses, it has destroyed my pituitary, is giving me neuropothy in

> > > arms and legs and partial numbness, and I have had a couple

> seizures,

> > > terrible headaches and memory lapses. I have really low blood

> counts,

> > > abnormal liver functions, lots of things going on that we could have

> > > prevented if I was diagnosed earlier. At the place I was first

> > > hospitalized for extreme weight loss they apparently weren't taking

> me

> > > seriously because they ran drug tests on me after I had seizures.

> > > That was helpful. Then I was told I have an extremely rare disease,

> > > Necrobiotic Xanthogranuloms. Then I was hospitalized again because

> of

> > > such a high abnormal heart rate and they said it was probably a

> > > granulomatous infectious disease b/c I started getting really sick

> on

> > > my honeymoon in the Carribean (but I now realize I had been sick

> > > longer.) But once they took an MRI and they caught my adrenal

> > > insuffeciency and lots of other pituitary insuffeciencies - it all

> > > added up to sarcoid.

> > >

> > > I am just starting treatment - 40 mg. of prednisone and then up the

> > > dose and/or add methotrexate in a month. I just hope I start to feel

> > > better, I want juat part of my life back.

> > >

> > > I am trying to have a positive attitude, eat even healthier than

> > > usual, I am trying acupuncture, meditating, and yoga although I can

> > > hardly do it anymore. I'm hoping I will be better enough to go back

> > > to work part time, but I will also be happy with pain free walking

> or

> > > driving. There are hours, days though where I am just stuck in my

> bed

> > > in pain and depressed and I don't have the energy to get up and go

> to

> > > the bathroom (which is a lot from the diabeties insipidus). Six

> months

> > > ago I would have loved a day to myself with all the things I can do.

> > > Now it's not so fun.

> > >

> > > In my old life, I had a job I absolutely loved, I did a lot of

> crafts,

> > > hiking, gardening, volunteering, I liked to be around people. Now I

> > > can't do most of these things and it is hard to hang out with

> friends

> > > or co-workers because their slow speed is ultra fast for me, and I

> am

> > > not even used to me being so slow.

> > >

> > > I have a wonderful husband and a supportive family, I am very

> thankful

> > > for that.

> > >

> > > Lately I just feel too crappy to be strong and positive, and all of

> > > this just stinks.

> > >

> >

>

[Guest guest]

Hi , Just like you I had a very acftive life . I had a job that I had been with for 17 years. I really loved that job and miss it so much. I became really depressed when I left it. Like everyone else here, it changed my whole self-identity. All my friends were co-workers and one by one they all drifted away which made it even worse. I still think about my job all the time, it seems like yesterday that I left it. Since then I am on disability and I never thought I would end up this way.I also miss the active things I did in my life like you. It's very hard to change the life that you had. Eventually after getting on certain meds, I felt better enough to volunteer at my local library. It then turned into a part time job where I work 6 hrs a week for pay. The library director also asked if I would fill in for people when they

weren't there (only like 4 hr shifts, because that's about all that I can do physically.). It feels so good to be doing something useful and getting out in the world with other people. Its good to have a volunteer position also, because if you aren't feeling that well, you don't have to go in. I hope this post didn't make you feel worse, I hope it made you feel better about yourself. I am sorry that you are so sick right now, but hope you get better enough to find something like I did. Hugs, Debbie Co-Moderatorelizabethecowell wrote: Hi. I am glad to have found this site on a sleepless night. I havebeen really sick the past 6 months, and was finally diagnosed withneurosarcoidosis. I am definately happy to have a diagnosis,

but alsofrustrated at what the diagnosis is. I have had to stop working,driving, walking much. I was a very active person before all of this,and am having a hard time with the loss of so much of my life when Iwas just looking forward to starting a family (I started gettingreally sick a month after being married)I have sarcoid in my liver, spleen, lymph nodes, glands, bones,sinuses, it has destroyed my pituitary, is giving me neuropothy inarms and legs and partial numbness, and I have had a couple seizures,terrible headaches and memory lapses. I have really low blood counts,abnormal liver functions, lots of things going on that we could haveprevented if I was diagnosed earlier. At the place I was firsthospitalized for extreme weight loss they apparently weren't taking meseriously because they ran drug tests on me after I had seizures. That was helpful. Then I was told I have an extremely rare

disease,Necrobiotic Xanthogranuloms. Then I was hospitalized again because ofsuch a high abnormal heart rate and they said it was probably agranulomatous infectious disease b/c I started getting really sick onmy honeymoon in the Carribean (but I now realize I had been sicklonger.) But once they took an MRI and they caught my adrenalinsuffeciency and lots of other pituitary insuffeciencies - it alladded up to sarcoid.I am just starting treatment - 40 mg. of prednisone and then up thedose and/or add methotrexate in a month. I just hope I start to feelbetter, I want juat part of my life back. I am trying to have a positive attitude, eat even healthier thanusual, I am trying acupuncture, meditating, and yoga although I canhardly do it anymore. I'm hoping I will be better enough to go backto work part time, but I will also be happy with pain free walking ordriving. There are hours, days though where I am just

stuck in my bedin pain and depressed and I don't have the energy to get up and go tothe bathroom (which is a lot from the diabeties insipidus). Six monthsago I would have loved a day to myself with all the things I can do.Now it's not so fun.In my old life, I had a job I absolutely loved, I did a lot of crafts,hiking, gardening, volunteering, I liked to be around people. Now Ican't do most of these things and it is hard to hang out with friendsor co-workers because their slow speed is ultra fast for me, and I amnot even used to me being so slow. I have a wonderful husband and a supportive family, I am very thankfulfor that. Lately I just feel too crappy to be strong and positive, and all ofthis just stinks. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM

PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi All,Boy, do I relate. I miss my job and my old life so much. Sometimes I think to myself how much I took for granted my health and would love to even have 1/2 of the old me back. Right now I am surviving...couch, bathroom, doctor's appts. Left leg bothering me more and one of my doctors wants me to get the surgeon to check out these subq nodules in my left thigh. My brother had a very rare form of cancer (Liposarcoma) when he was 14 and his began as a lump between his shoulderblades. I haven't posted much anywhere since my AICD surgery in January b/c just feeling poorly. I read so much about doctors not listening to their pts regarding sarcoidosis and some posts have said their doctors refuse to even consider sarcoidosis. Why is this??? I just don't understand...it's like we're on an island and no one pays attn to our distress calls even though they're loud and clear. May God Bless us all,BeckyDebbie

wrote: Hi , Just like you I had a very acftive life . I had a job that I had been with for 17 years. I really loved that job and miss it so much. I became really depressed when I left it. Like everyone else here, it changed my whole self-identity. All my friends were co-workers and one by one they all drifted away which made it even worse. I still think about my job all the time, it seems like yesterday that I left it. Since then I am on

disability and I never thought I would end up this way.I also miss the active things I did in my life like you. It's very hard to change the life that you had. Eventually after getting on certain meds, I felt better enough to volunteer at my local library. It then turned into a part time job where I work 6 hrs a week for pay. The library director also asked if I would fill in for people when they weren't there (only like 4 hr shifts, because that's about all that I can do physically.). It feels so good to be doing something useful and getting out in the world with other people. Its good to have a volunteer position also, because if you aren't feeling that well, you don't have to go in. I hope this post didn't make you feel worse, I hope it made you feel better about yourself. I am sorry that you are so sick right now, but hope you get better enough to find something like I did.

Hugs, Debbie Co-Moderatorelizabethecowell <elizwiz (AT) hotmail (DOT) com> wrote: Hi. I am glad to have found this site on a sleepless night. I havebeen really sick the past 6 months, and was finally diagnosed withneurosarcoidosis. I am definately happy to have a diagnosis, but alsofrustrated at what the diagnosis is. I have had to stop working,driving, walking much. I was a very active person before all of this,and am having a hard time with the loss of so much of my life when Iwas just looking forward to starting a family (I started gettingreally sick a month after being married)I have sarcoid in my liver, spleen, lymph nodes, glands, bones,sinuses, it has destroyed my pituitary, is giving me neuropothy inarms and legs and partial numbness, and I have had a couple seizures,terrible

headaches and memory lapses. I have really low blood counts,abnormal liver functions, lots of things going on that we could haveprevented if I was diagnosed earlier. At the place I was firsthospitalized for extreme weight loss they apparently weren't taking meseriously because they ran drug tests on me after I had seizures. That was helpful. Then I was told I have an extremely rare disease,Necrobiotic Xanthogranuloms. Then I was hospitalized again because ofsuch a high abnormal heart rate and they said it was probably agranulomatous infectious disease b/c I started getting really sick onmy honeymoon in the Carribean (but I now realize I had been sicklonger.) But once they took an MRI and they caught my adrenalinsuffeciency and lots of other pituitary insuffeciencies - it alladded up to sarcoid.I am just starting treatment - 40 mg. of prednisone and then up thedose and/or add methotrexate in a month. I just hope I

start to feelbetter, I want juat part of my life back. I am trying to have a positive attitude, eat even healthier thanusual, I am trying acupuncture, meditating, and yoga although I canhardly do it anymore. I'm hoping I will be better enough to go backto work part time, but I will also be happy with pain free walking ordriving. There are hours, days though where I am just stuck in my bedin pain and depressed and I don't have the energy to get up and go tothe bathroom (which is a lot from the diabeties insipidus). Six monthsago I would have loved a day to myself with all the things I can do.Now it's not so fun.In my old life, I had a job I absolutely loved, I did a lot of crafts,hiking, gardening, volunteering, I liked to be around people. Now Ican't do most of these things and it is hard to hang out with friendsor co-workers because their slow speed is ultra fast for me, and I amnot even used to me being

so slow. I have a wonderful husband and a supportive family, I am very thankfulfor that. Lately I just feel too crappy to be strong and positive, and all ofthis just stinks. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

e, I'm sorry that this reply is so late. I'm sure that others have responded already, but I just want to welcome you & offer my support. I'm working my way forward from May, so will find out what info you've gotten & not repeat it. I hope that things have improved for you.

Ramblin' Rose

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