Re: Depression issues Intimacy

[Guest guest]

Rach,

It's good to see you back online. You are going to find that you will need to be the educator of your MD's. Since we are considered a "rarity" they read up and stay up on high blood pressure issues, diabetes, high cholestrol, and they read the one article on chronic pain that told them that anti-depressants were helpful, but they forgot what most of it said-- so they just fall back on that as an answer-- but don't know how to explain it us. They forgot that we didn't read the article-- and that the majority of us know chronic pain too well, and have been told we have "fibromyalgia, so we must be depressed.." and take this- if you're depressed it may help, and if you have alot of pain it may help. That ends their ability to discuss it further.

Don't get me wrong-- I spent 17 yrs working as medical administration- billing, education, reception--- management-- and have the utmost respect for docs. They get no less than 20 journals a month in to read-- and they hope that the drug rep will come in with lunch and sit down and share what they know about their "new" drug in hopes they won't have to read the article.

It comes down to simple triage-- you can treat alot of high blood pressure and high cholestrol and diabetes-- but you'll see 2 or 3 cases at most of sarcoidosis. Out of the 3-- 2.75 will have a normal course of maybe chronic respiratory infections-- but they won't even put that together as being a related issue to the sarc. Merck's manual in 1954 stated it was a disease that didn't warrant treatment-- as only a very few (us) will have it become a systemic or neurological issue, and that will be blown off as fibromyalgia and depression. We'll even be sent to a psychiatrist that will look at it as depression secondary to fibromyalgia. Since our work has become sedentary, and our ability to move has diminished-- it's easy to blow it off from that direction. And the question of "how's your marriage/relationship, job, home life, social life (all diminished because of chronic fatigue and pain) is that those thing suck and you

barely have a relationship with anything/one-- well- it must be depression.

I'll tell ya right now-- DEPRESSION IS SECONDARY TO ALL THAT STUFF! YEP, IT SUCKS! YOU HURT, YOU HAVE LOST YOUR IDENTITY AS A PARTNER IN YOUR MARRIAGE, YOU ARE WORRIED ABOUT YOUR JOB, AND YOUR FINANCIAL SECURITY IS BLOWN OUT OF THE WATER-- all because you are sick. and no one can tell you what is going on and how to deal with it.

Antidepressants are a godsend-- truly. They do help balance the seratonin and norepinephrine levels, and that will help you sleep. If you get some sleep, your pain will lessen, and your depression will lessen. Then you'll try to do a marathon day (grocery shopping and making a second stop somewhere before going home) and you'll end up down for the next several days. Hmm, do we see a pattern? Do you realize that if you do this, your pain cycle starts up again, and it's back to a routine of "laying low."

The good news is that we can all learn to pace ourself! Instead of making it a "day out" make a single stop and then go back home. (Yes, I know, I live in the mountains and it's a 30 mile drive down to the valley to do any shopping- so gas expense is a factor). Know that you'll have to learn to listen to your body.

Hubbies and caretakers-- the guilt that is going on in your partners heart is tough stuff to deal with. They probably are holding that in-- and you're feeling frustrated as hell. WE understand. We are so very frustrated also, and we want to be able to hold you and love you as we have for years-- and more than anything we want you to know you can still hold us. Intimacy and sex may have to be on one of those days when we haven't had anything to do for a couple of days-- and you'll probably need to take the lead.

Pay attention, what time of the day are we at our best energy wise. If it's 2 in the afternoon- then turn off the phone, close the drapes, lock the door and send the kids to friends homes-- and snuggle up with us. By the time night time comes around, we're worn out-- and we are feeling as lonely as you feel. And we top it off with feeling guiltier. This is why we call this disease suckoidosis-- and yes, I'm on a roll tonight..

Hugs to all,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wed, January 20, 2010 8:20:03 PMSubject: Back Again

First of all I feel really awful that I haven't really been able to contribute.. . I don't know enough about sarcoid to give advice. I saw some bday reminders whilst I was in hospital but my mobile phone would only let me read them, I was unable to reply.Well HAPPY BIRTHDAY to anyone whose birthday I missed in the last fortnight.I have to say I was grateful to be able to keep up with the news from my hospital bed.Some of you may know I was posting questions about cellcept and depression. I ended up being sent back to the hospital in the city (we just moved to the country and they find sarcoid too difficult). Mind you the city doctors struggled a little themselves. I have been diagnosed as having seizures and was put on medication for it, and within a few days the awful feeling has almost completely subsided. Plus I had some methylpred for the new left sided weakness.The whole thing was quite scary and I realised if I

had still been diagnosed with MS they probably would have just told me I had depression and sent me home. And this would have been so wrong. I have so much to learn about sarcoid because I think my doctors are a little behind themselves.I will get to reading all the archives here.Thanks for being there in the virutal support world.rach

[Guest guest]

You are definitely on a roll. You go girl!

Subject: Re: Depression issues IntimacyTo: Neurosarcoidosis Date: Thursday, January 21, 2010, 2:15 AM

Rach,

It's good to see you back online. You are going to find that you will need to be the educator of your MD's. Since we are considered a "rarity" they read up and stay up on high blood pressure issues, diabetes, high cholestrol, and they read the one article on chronic pain that told them that anti-depressants were helpful, but they forgot what most of it said-- so they just fall back on that as an answer-- but don't know how to explain it us. They forgot that we didn't read the article-- and that the majority of us know chronic pain too well, and have been told we have "fibromyalgia, so we must be depressed.." and take this- if you're depressed it may help, and if you have alot of pain it may help. That ends their ability to discuss it further.

Don't get me wrong-- I spent 17 yrs working as medical administration- billing, education, reception--- management-- and have the utmost respect for docs. They get no less than 20 journals a month in to read-- and they hope that the drug rep will come in with lunch and sit down and share what they know about their "new" drug in hopes they won't have to read the article.

It comes down to simple triage-- you can treat alot of high blood pressure and high cholestrol and diabetes-- but you'll see 2 or 3 cases at most of sarcoidosis. Out of the 3-- 2.75 will have a normal course of maybe chronic respiratory infections-- but they won't even put that together as being a related issue to the sarc. Merck's manual in 1954 stated it was a disease that didn't warrant treatment-- as only a very few (us) will have it become a systemic or neurological issue, and that will be blown off as fibromyalgia and depression. We'll even be sent to a psychiatrist that will look at it as depression secondary to fibromyalgia. Since our work has become sedentary, and our ability to move has diminished-- it's easy to blow it off from that direction. And the question of "how's your marriage/relationsh ip, job, home life, social life (all diminished because of chronic fatigue and pain) is that those thing suck and

you barely have a relationship with anything/one- - well- it must be depression.

I'll tell ya right now-- DEPRESSION IS SECONDARY TO ALL THAT STUFF! YEP, IT SUCKS! YOU HURT, YOU HAVE LOST YOUR IDENTITY AS A PARTNER IN YOUR MARRIAGE, YOU ARE WORRIED ABOUT YOUR JOB, AND YOUR FINANCIAL SECURITY IS BLOWN OUT OF THE WATER-- all because you are sick. and no one can tell you what is going on and how to deal with it.

Antidepressants are a godsend-- truly. They do help balance the seratonin and norepinephrine levels, and that will help you sleep. If you get some sleep, your pain will lessen, and your depression will lessen. Then you'll try to do a marathon day (grocery shopping and making a second stop somewhere before going home) and you'll end up down for the next several days. Hmm, do we see a pattern? Do you realize that if you do this, your pain cycle starts up again, and it's back to a routine of "laying low."

The good news is that we can all learn to pace ourself! Instead of making it a "day out" make a single stop and then go back home. (Yes, I know, I live in the mountains and it's a 30 mile drive down to the valley to do any shopping- so gas expense is a factor). Know that you'll have to learn to listen to your body.

Hubbies and caretakers-- the guilt that is going on in your partners heart is tough stuff to deal with. They probably are holding that in-- and you're feeling frustrated as hell. WE understand. We are so very frustrated also, and we want to be able to hold you and love you as we have for years-- and more than anything we want you to know you can still hold us. Intimacy and sex may have to be on one of those days when we haven't had anything to do for a couple of days-- and you'll probably need to take the lead.

Pay attention, what time of the day are we at our best energy wise. If it's 2 in the afternoon- then turn off the phone, close the drapes, lock the door and send the kids to friends homes-- and snuggle up with us. By the time night time comes around, we're worn out-- and we are feeling as lonely as you feel. And we top it off with feeling guiltier. This is why we call this disease suckoidosis- - and yes, I'm on a roll tonight..

Hugs to all,

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, January 20, 2010 8:20:03 PMSubject: Back Again

First of all I feel really awful that I haven't really been able to contribute.. . I don't know enough about sarcoid to give advice. I saw some bday reminders whilst I was in hospital but my mobile phone would only let me read them, I was unable to reply.Well HAPPY BIRTHDAY to anyone whose birthday I missed in the last fortnight.I have to say I was grateful to be able to keep up with the news from my hospital bed.Some of you may know I was posting questions about cellcept and depression. I ended up being sent back to the hospital in the city (we just moved to the country and they find sarcoid too difficult). Mind you the city doctors struggled a little themselves. I have been diagnosed as having seizures and was put on medication for it, and within a few days the awful feeling has almost completely subsided. Plus I had some methylpred for the new left sided weakness.The whole thing was quite scary and I realised if I

had still been diagnosed with MS they probably would have just told me I had depression and sent me home. And this would have been so wrong. I have so much to learn about sarcoid because I think my doctors are a little behind themselves.I will get to reading all the archives here.Thanks for being there in the virutal support world.rach

[Guest guest]

I agree Tracie your insight and expression of your Beliefs and knowledge is inspiring and educating. I am so Blessed to know you and read your words. So many times you have said words and expressed ideas that hit home for me. I do agree with June please roll on my friend and know you are listen to and understood. You are a Blessing to all in this group and I pray that you are Blessed as much. I am fighting Depression at this time Prednisone and PTSD and maybe the Neurosarcoidosis are the main underlying causes but there are also other issues I do not feel free to express at this time. I is a tough fight but I am hanging in there and your words are encouraging to me. Be Blessed and be Well I pray for this for all.

Greg aka Krumdawg

From: June Heileman

Sent: Thursday, January 21, 2010 8:07 AM

To: Neurosarcoidosis

Subject: Re: Depression issues Intimacy

You are definitely on a roll. You go girl!

From: tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com>Subject: Re: Depression issues IntimacyTo: Neurosarcoidosis Date: Thursday, January 21, 2010, 2:15 AM

Rach,

It's good to see you back online. You are going to find that you will need to be the educator of your MD's. Since we are considered a "rarity" they read up and stay up on high blood pressure issues, diabetes, high cholestrol, and they read the one article on chronic pain that told them that anti-depressants were helpful, but they forgot what most of it said-- so they just fall back on that as an answer-- but don't know how to explain it us. They forgot that we didn't read the article-- and that the majority of us know chronic pain too well, and have been told we have "fibromyalgia, so we must be depressed.." and take this- if you're depressed it may help, and if you have alot of pain it may help. That ends their ability to discuss it further.

Don't get me wrong-- I spent 17 yrs working as medical administration- billing, education, reception--- management-- and have the utmost respect for docs. They get no less than 20 journals a month in to read-- and they hope that the drug rep will come in with lunch and sit down and share what they know about their "new" drug in hopes they won't have to read the article.

It comes down to simple triage-- you can treat alot of high blood pressure and high cholestrol and diabetes-- but you'll see 2 or 3 cases at most of sarcoidosis. Out of the 3-- 2.75 will have a normal course of maybe chronic respiratory infections-- but they won't even put that together as being a related issue to the sarc. Merck's manual in 1954 stated it was a disease that didn't warrant treatment-- as only a very few (us) will have it become a systemic or neurological issue, and that will be blown off as fibromyalgia and depression. We'll even be sent to a psychiatrist that will look at it as depression secondary to fibromyalgia. Since our work has become sedentary, and our ability to move has diminished-- it's easy to blow it off from that direction. And the question of "how's your marriage/relationsh ip, job, home life, social life (all diminished because of chronic fatigue and pain) is that those thing suck and you barely have a relationship with anything/one- - well- it must be depression.

I'll tell ya right now-- DEPRESSION IS SECONDARY TO ALL THAT STUFF! YEP, IT SUCKS! YOU HURT, YOU HAVE LOST YOUR IDENTITY AS A PARTNER IN YOUR MARRIAGE, YOU ARE WORRIED ABOUT YOUR JOB, AND YOUR FINANCIAL SECURITY IS BLOWN OUT OF THE WATER-- all because you are sick. and no one can tell you what is going on and how to deal with it.

Antidepressants are a godsend-- truly. They do help balance the seratonin and norepinephrine levels, and that will help you sleep. If you get some sleep, your pain will lessen, and your depression will lessen. Then you'll try to do a marathon day (grocery shopping and making a second stop somewhere before going home) and you'll end up down for the next several days. Hmm, do we see a pattern? Do you realize that if you do this, your pain cycle starts up again, and it's back to a routine of "laying low."

The good news is that we can all learn to pace ourself! Instead of making it a "day out" make a single stop and then go back home. (Yes, I know, I live in the mountains and it's a 30 mile drive down to the valley to do any shopping- so gas expense is a factor). Know that you'll have to learn to listen to your body.

Hubbies and caretakers-- the guilt that is going on in your partners heart is tough stuff to deal with. They probably are holding that in-- and you're feeling frustrated as hell. WE understand. We are so very frustrated also, and we want to be able to hold you and love you as we have for years-- and more than anything we want you to know you can still hold us. Intimacy and sex may have to be on one of those days when we haven't had anything to do for a couple of days-- and you'll probably need to take the lead.

Pay attention, what time of the day are we at our best energy wise. If it's 2 in the afternoon- then turn off the phone, close the drapes, lock the door and send the kids to friends homes-- and snuggle up with us. By the time night time comes around, we're worn out-- and we are feeling as lonely as you feel. And we top it off with feeling guiltier. This is why we call this disease suckoidosis- - and yes, I'm on a roll tonight..

Hugs to all,

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, January 20, 2010 8:20:03 PMSubject: Back Again

First of all I feel really awful that I haven't really been able to contribute.. . I don't know enough about sarcoid to give advice. I saw some bday reminders whilst I was in hospital but my mobile phone would only let me read them, I was unable to reply.Well HAPPY BIRTHDAY to anyone whose birthday I missed in the last fortnight.I have to say I was grateful to be able to keep up with the news from my hospital bed.Some of you may know I was posting questions about cellcept and depression. I ended up being sent back to the hospital in the city (we just moved to the country and they find sarcoid too difficult). Mind you the city doctors struggled a little themselves I have been diagnosed as having seizures and was put on medication for it, and within a few days the awful feeling has almost completely subsided. Plus I had some methylpred for the new left sided weakness.The whole thing was quite scary and I realised if I had still been diagnosed with MS they probably would have just told me I had depression and sent me home. And this would have been so wrong. I have so much to learn about sarcoid because I think my doctors are a little behind themselves.I will get to reading all the archives here.Thanks for being there in the virutal support world.rach

[Guest guest]

To: Neurosarcoidosis Sent: Thu, January 21, 2010 11:17:46 AMSubject: Re: Depression issues Intimacy

I agree Tracie your insight and expression of your Beliefs and knowledge is inspiring and educating. I am so Blessed to know you and read your words. So many times you have said words and expressed ideas that hit home for me. I do agree with June please roll on my friend and know you are listen to and understood. You are a Blessing to all in this group and I pray that you are Blessed as much. I am fighting Depression at this time Prednisone and PTSD and maybe the Neurosarcoidosis are the main underlying causes but there are also other issues I do not feel free to express at this time. I is a tough fight but I am hanging in there and your words are encouraging to me. Be Blessed and be Well I pray for this for all.

Greg aka Krumdawg

From: June Heileman

Sent: Thursday, January 21, 2010 8:07 AM

To: Neurosarcoidosis@ yahoogroups. com

Subject: Re: Depression issues Intimacy

You are definitely on a roll. You go girl!

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Depression issues IntimacyTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, January 21, 2010, 2:15 AM

Rach,

It's good to see you back online. You are going to find that you will need to be the educator of your MD's. Since we are considered a "rarity" they read up and stay up on high blood pressure issues, diabetes, high cholestrol, and they read the one article on chronic pain that told them that anti-depressants were helpful, but they forgot what most of it said-- so they just fall back on that as an answer-- but don't know how to explain it us. They forgot that we didn't read the article-- and that the majority of us know chronic pain too well, and have been told we have "fibromyalgia, so we must be depressed.." and take this- if you're depressed it may help, and if you have alot of pain it may help. That ends their ability to discuss it further.

Don't get me wrong-- I spent 17 yrs working as medical administration- billing, education, reception--- management-- and have the utmost respect for docs. They get no less than 20 journals a month in to read-- and they hope that the drug rep will come in with lunch and sit down and share what they know about their "new" drug in hopes they won't have to read the article.

It comes down to simple triage-- you can treat alot of high blood pressure and high cholestrol and diabetes-- but you'll see 2 or 3 cases at most of sarcoidosis. Out of the 3-- 2.75 will have a normal course of maybe chronic respiratory infections-- but they won't even put that together as being a related issue to the sarc. Merck's manual in 1954 stated it was a disease that didn't warrant treatment-- as only a very few (us) will have it become a systemic or neurological issue, and that will be blown off as fibromyalgia and depression. We'll even be sent to a psychiatrist that will look at it as depression secondary to fibromyalgia. Since our work has become sedentary, and our ability to move has diminished-- it's easy to blow it off from that direction. And the question of "how's your marriage/relationsh ip, job, home life, social life (all diminished because of chronic fatigue and pain) is that those thing suck and

you barely have a relationship with anything/one- - well- it must be depression.

I'll tell ya right now-- DEPRESSION IS SECONDARY TO ALL THAT STUFF! YEP, IT SUCKS! YOU HURT, YOU HAVE LOST YOUR IDENTITY AS A PARTNER IN YOUR MARRIAGE, YOU ARE WORRIED ABOUT YOUR JOB, AND YOUR FINANCIAL SECURITY IS BLOWN OUT OF THE WATER-- all because you are sick. and no one can tell you what is going on and how to deal with it.

Antidepressants are a godsend-- truly. They do help balance the seratonin and norepinephrine levels, and that will help you sleep. If you get some sleep, your pain will lessen, and your depression will lessen. Then you'll try to do a marathon day (grocery shopping and making a second stop somewhere before going home) and you'll end up down for the next several days. Hmm, do we see a pattern? Do you realize that if you do this, your pain cycle starts up again, and it's back to a routine of "laying low."

The good news is that we can all learn to pace ourself! Instead of making it a "day out" make a single stop and then go back home. (Yes, I know, I live in the mountains and it's a 30 mile drive down to the valley to do any shopping- so gas expense is a factor). Know that you'll have to learn to listen to your body.

Hubbies and caretakers-- the guilt that is going on in your partners heart is tough stuff to deal with. They probably are holding that in-- and you're feeling frustrated as hell. WE understand. We are so very frustrated also, and we want to be able to hold you and love you as we have for years-- and more than anything we want you to know you can still hold us. Intimacy and sex may have to be on one of those days when we haven't had anything to do for a couple of days-- and you'll probably need to take the lead.

Pay attention, what time of the day are we at our best energy wise. If it's 2 in the afternoon- then turn off the phone, close the drapes, lock the door and send the kids to friends homes-- and snuggle up with us. By the time night time comes around, we're worn out-- and we are feeling as lonely as you feel. And we top it off with feeling guiltier. This is why we call this disease suckoidosis- - and yes, I'm on a roll tonight..

Hugs to all,

Tracie

NS Co-owner/moderator

From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, January 20, 2010 8:20:03 PMSubject: Back Again

First of all I feel really awful that I haven't really been able to contribute.. . I don't know enough about sarcoid to give advice. I saw some bday reminders whilst I was in hospital but my mobile phone would only let me read them, I was unable to reply.Well HAPPY BIRTHDAY to anyone whose birthday I missed in the last fortnight.I have to say I was grateful to be able to keep up with the news from my hospital bed.Some of you may know I was posting questions about cellcept and depression. I ended up being sent back to the hospital in the city (we just moved to the country and they find sarcoid too difficult). Mind you the city doctors struggled a little themselves I have been diagnosed as having seizures and was put on medication for it, and within a few days the awful feeling has almost completely subsided. Plus I had some methylpred for the new left sided weakness.The whole thing was quite scary and I realised if I

had still been diagnosed with MS they probably would have just told me I had depression and sent me home. And this would have been so wrong. I have so much to learn about sarcoid because I think my doctors are a little behind themselves.I will get to reading all the archives here.Thanks for being there in the virutal support world.rach

[Guest guest]

Whilst I know its potentially going to happen, I really am not depressed. It may

be because I have had so much counselling over the years, because I lost vision

it was provided by my local vision group. I've worked at a lot of issues. It may

be because that part of my brain hasn't been affected. I'm just grateful I don't

have it. The anti-seizure medication seems to be working quite well, so I guess

you take the good with the bad.

Now for intimacy. I don't really discuss this with anyone, I think people just

think " you're sick so it doesn't matter " . I became ill when i was 22 and I

hadn't really had any " proper " boyfriends. Initially it drove me nuts and I was

so worried I'd die a little old lonely lady, and who would look after me when i

was old. Again it was something I worked through with all the counselling and I

came to the realisation that not everyone gets married anyway. There are a lot

of people out there who devote their lives to other things and they are not

sick.

Sure I get upset sometimes, especially now that all my friends are getting

married and having children. And some friends feel the need to hide their good

news from me for fear it will upset me. I guess its just one of those things you

deal with like losing vision. Who knows what the master plan is and why I was

given this illness. (I don't have a particular faith, so I look at things

differently).

I haven't completely written meeting someone off, but I don't base my life

around it. For one I don't get out to the places where I would meet someone, and

I don't want to do online dating. You hide the illness for how long?? But in

other ways I devote my time to so many things that people who are busy working,

being married, being parents running households can't and some people are

envious of that.

I'm always touched by spouses who stick by their ill other half through sickness

and health. Especially those who become carers. It is truly heartwarming - but

usually those are couples where someone got sick AFTER they were

married/together.

I need a few more stories about people meeting someone with a chronic illness

and falling head over heals in love.

Let's not spin into the negative. I am very busy at the moment sorting my next

subjects for uni, catching up on reading (Whilst I'm not at uni) exploring the

new town I just moved to - and trying to keep the body working.

I hope your day is good...

Rach

>

> Rach,

> It's good to see you back online.  You are going to find that you will need

to be the educator of your MD's.  Since we are considered a " rarity " they read

up and stay up on high blood pressure issues, diabetes, high cholestrol, and

they read the one article on chronic pain that told them that anti-depressants

were helpful, but they forgot what most of it said-- so they just fall back on

that as an answer-- but don't know how to explain it us.  They forgot that we

didn't read the article-- and that the majority of us know chronic pain too

well, and have been told we have " fibromyalgia, so we must be depressed.. " and

take this-  if you're depressed it may help, and if you have alot of pain it

may help.  That ends their ability to discuss it further. 

> Don't get me wrong-- I spent 17 yrs working as  medical administration-

billing, education, reception--- management-- and have the utmost respect for

docs.  They get no less than 20 journals a month in to read-- and they hope

that the drug rep will come in with lunch and sit down and share what they know

about their " new " drug in hopes they won't have to read the article. 

> It comes down to simple triage-- you can treat alot of high blood pressure and

high cholestrol and diabetes-- but you'll see 2 or 3 cases at most of

sarcoidosis.  Out of the 3-- 2.75 will have a normal course of maybe chronic

respiratory infections-- but they won't even put that together as being a

related issue to the sarc.  Merck's manual in 1954 stated it was a disease that

didn't warrant treatment-- as only a very few (us) will have it become a

systemic or neurological issue, and that will be blown off as fibromyalgia and

depression.  We'll even be sent to a psychiatrist that will look at it as

depression secondary to fibromyalgia.  Since our work has become sedentary, and

our ability to move has diminished-- it's easy to blow it off from that

direction.  And the question of " how's your marriage/relationship, job, home

life, social life (all diminished because of chronic fatigue and pain) is that

those thing suck and you barely have a

> relationship with anything/one-- well- it must be depression.

> I'll tell ya right now-- DEPRESSION IS SECONDARY TO ALL THAT STUFF!  YEP, IT

SUCKS!  YOU HURT, YOU HAVE LOST YOUR IDENTITY AS A PARTNER IN YOUR MARRIAGE,

YOU ARE WORRIED ABOUT YOUR JOB, AND YOUR FINANCIAL SECURITY IS BLOWN OUT OF THE

WATER-- all because you are sick.  and no one can tell you what is going on and

how to deal with it. 

> Antidepressants are a godsend-- truly.  They do help balance the seratonin

and norepinephrine levels, and that will help you sleep.  If you get some

sleep, your pain will lessen, and your depression will lessen.  Then you'll try

to do a marathon day (grocery shopping and making a second stop somewhere before

going home)  and you'll end up down for the next several days.  Hmm, do we see

a pattern?  Do you realize that if you do this, your pain cycle starts up

again, and it's back to a routine of " laying low. "

> The good news is that we can all learn to pace ourself!  Instead of making it

a " day out " make a single stop and then go back home.  (Yes, I know, I live in

the mountains and it's a 30 mile drive down to the valley to do any shopping- so

gas expense is a factor).  Know that you'll have to learn to listen to your

body. 

> Hubbies and caretakers-- the guilt that is going on in your partners heart is

tough stuff to deal with.  They probably are holding that in-- and you're

feeling frustrated as hell.  WE understand.  We are so very frustrated also,

and we want to be able to hold you and love you as we have for years-- and more

than anything we want you to know you can still hold us.  Intimacy and sex may

have to be on one of those days when we haven't had anything to do for a couple

of days-- and you'll probably need to take the lead. 

> Pay attention, what time of the day are we at our best energy wise.  If it's

2 in the afternoon- then turn off the phone, close the drapes, lock the door and

send the kids to friends homes-- and snuggle up with us.  By the time night

time comes around, we're worn out-- and we are feeling as lonely as you feel. 

And we top it off with feeling guiltier.  This is why we call this disease

suckoidosis-- and yes, I'm on a roll tonight..

> Hugs to all,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Wed, January 20, 2010 8:20:03 PM

> Subject: Back Again

>

>  

> First of all I feel really awful that I haven't really been able to

contribute.. . I don't know enough about sarcoid to give advice. I saw some bday

reminders whilst I was in hospital but my mobile phone would only let me read

them, I was unable to reply.

>

> Well HAPPY BIRTHDAY to anyone whose birthday I missed in the last fortnight.

>

> I have to say I was grateful to be able to keep up with the news from my

hospital bed.

>

> Some of you may know I was posting questions about cellcept and depression. I

ended up being sent back to the hospital in the city (we just moved to the

country and they find sarcoid too difficult). Mind you the city doctors

struggled a little themselves. I have been diagnosed as having seizures and was

put on medication for it, and within a few days the awful feeling has almost

completely subsided. Plus I had some methylpred for the new left sided weakness.

>

> The whole thing was quite scary and I realised if I had still been diagnosed

with MS they probably would have just told me I had depression and sent me home.

And this would have been so wrong. I have so much to learn about sarcoid because

I think my doctors are a little behind themselves.

>

> I will get to reading all the archives here.

>

> Thanks for being there in the virutal support world.

>

> rach

>