Re: Re: Depression issues Intimacy

[Guest guest]

Rachyanne: I am a caregiver for my husband and myself get lonely and depressed! It's not so much about intimacy, cause girl, it's been over 5 years and counting. It's knowing that your loved one is just as depressed, if not more-so, being inadequate in doing things they use to do, like walking, holding a conversation, w/o trying to remember what was just said, or as his previous occupation he held was being a mental health therapist for behavioral children, of which I see him acting out at times. It may seem odd at tmes and please forgive me for saying this, but at times for a quick moment, we both are at wits end with each other, I wonder how much lonelier can it get, if God forbids, anything should happen to him? But, like I said, the insensitive idea will come and go--because I look back at the yester-years, of which the "good"

out-weighs the "bad." I believe we all have our days. You may not have a particular faith, but you should believe, there is hope, my dear! I pray for each and everyone for strengh in struggling with this demon monster, whether you are the one stricken with this disease, or the caregivers and their family members who go thru the motions with the ones that have it. God bless you!

Subject: Re: Depression issues IntimacyTo: Neurosarcoidosis Date: Sunday, January 24, 2010, 11:26 PM

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/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@... >> To: Neurosarcoidosis@ yahoogroups. com> 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>

[Guest guest]

two quickies:

rachy you have a great attitude!!!!!

tracie...wondering your thoughts on Ampyra (new drug for MS patients), seems like there is more research for that (similar?) disease

Subject: Re: Depression issues IntimacyTo: Neurosarcoidosis Date: Sunday, January 24, 2010, 10:26 PM

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/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@.... >> To: Neurosarcoidosis@ yahoogroups. com> 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>

[Guest guest]

June. I too am the caregiver for my wife . What you say is so true. There are times when I am sad & depressed thinking about what this has done to her. Then there are times I get angry for what it has done. Sometimes I sit and know that I cant even have a conversation with her because of the speech difficulties that are some days worse than others. But I too look at the good outweighing the bad & always manage a smile even through tears remembering the good times and knowing that did not ask for this. No one ever does. I too will continue to do what I can to help her until I am no longer able. And as always I will continue to pray that one day there will be a cure of some kind and I will keep you and everyone else in

the group in my prayers. Matt

From: rachyanne <stiks11 (AT) hotmail (DOT) com>Subject: Re: Depression issues IntimacyTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, January 24, 2010, 11:26 PM

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/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@... >> To: Neurosarcoidosis@

yahoogroups. com> Sent: Wed, January 20, 2010 8:20:03 PM> Subject: Back Again> > Â > 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]



That's awesome Matt.. Thank you for remembering and praying for your wife, . I do hope they find a cure, none of us asked for this.. and I also thank you for remembering the rest of us in your prayers.

Hugs,

Back Again> > Â > 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>