Re: You look great

[Guest guest]

One of the best sites and booklets I've seen is from Invisible Disablities Advocate. www.Invisibledisabilitiesadvocate.org The owner has a booklet called "But You Look Good" that describes exactly what we are going through.

Just because our illness doesn't need a crutch, a bandage, a cast, it's hard to believe that we are "disabled." We barely believe it ourself.

We know that daily, we face fatigue that makes the worse case of pneumonia you've ever had seem like a cakewalk. We know that if we overdo it today, we pay for it physically and emotionally for a week. We know that we've lost a huge part of our identity as professionals, as men and women with careers we loved. We know that the price of chronic illness is one that effects our relationships -- marriage, friendships, groups we loved to belong to, the way we get to interact with our kids. We don't volunteer to coach a baseball team, or soccer team. We try to keep up as the Secretary for PTA or Scouts or the church group. We know that our friends have taken the easy out - they don't invite us to the party because "we're too tired to attend." They also don't have a clue on how to "help" us -- so they feel vulnerable and afraid they'll say something wrong-- or they may have to look at their

own issues about life and death.

This booklet is one that I purchased several copies of -- and I gave it as gifts to our pastor, to my family (they refused to read it) to my doctor. I also gave a couple of copies to the Hospice program and the Caring Ministry-- hoping that they would share it with all their patients.

You can read the first chapter online and decide if you're interested.

Another great site is BYDLS--BUT YOU DON'T LOOK SICK. They too have articles to help with dealing with that all important issue-- the invisible illness.

This is a topic that has been dealt with most everytime we added a new member-- and many of the posts in the first several years of this groups existence we on this issue. They are in the MESSAGE ARCHIVES. I'll send an email with the Link to that part of this site. It is at the bottom of this and every email if you scroll down in a subsection called "Neurosarcoidosis Community."

Be well,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wed, November 11, 2009 3:17:29 PMSubject: Re: File - Religious, Political and Other Topics

Hi Mitch!I know just what you're talking about! I can't tell you how frustrating it gets hearing people say "Gee, you LOOK great. You don't LOOK sick. Come on, how can you be hurting THAT much?"As for pain, I can only speak for myself, but some days it's fairly bearable, and other days I have to crawl to the kitchen and bathroom. Don't think THAT doesn't catch a fair amount of comments: e.g., "Gee, I thought you were having too much pain to do that." etc.Oh oh...My folks are here...gotta go. I'll post again later. Nice to meet you, Mitch.Keep the faith and fight the good fight.

From: mjcv29a (AT) aol (DOT) com <mjcv29a (AT) aol (DOT) com>Subject: Re: File - Religious, Political and Other TopicsTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, November 1, 2009, 1:56 PM

Dear Group,

I can't believe it's been just about a week since I found you. I can't believe how much love and support I've received in that little time. It will be 3 years in March since i was diagnosed but have had symptoms for close to ten years (just didn't know what I had). I thank you all for inviting me in and being there. I have another question, the joint pains just started getting bad a few months ago and now it's to the point some days are bearable and other aren't but a new thing just started and I want to know if it's the disease. I guess I've had it for some time but it was so small I didn't give notice,. But the last day or two have been bad. If I bend to my side. like over a couch to pick up a napkin (while sitting on it) I get a sever pain depending on which side I bend. if I bend to my right it's like I get a sharp pain in my liver and to my left it's almost as if I can feel my spleen and it hurts and then lingers. These things are not normal.

If I didn't mention it in my first letter to you all, I've been a Chiropractor for 21 years, I used to work 6 days a week now I'm down to 2 in pain. I know what's normal pain and what's not normal, this is not normal. I just want to know if it's Sarcoid related,.It didn't take me long to realize you people know much more then my Pulmonologist- he thinks this is a painless disease unless it affects the skin,

Your in Health

Mitch

Ps Yes, feel free to ask me any musculoskelatal questions, we are all here to help each other, right? File - Religious, Political and Other Topics

Dear All,This is primarily a support group for a NASTY illness that does require people to call on their beliefs to get them through the dark days. Faith is certainly an issue when you are dealing with chronic and/or a progressive illness. Beyond these screens are real people with real feelings. People who laugh, cry, need, and are needed. We all have one thing in common and that is this illness which takes too much away from us like our entire life. When this list was started, it was started with the thought in mind that this disease robs us of way too much, and I was NOT going to add to that by having rules and regulations. We have enough limitations in REAL life, let alone bringing them into a support group. We also did not even imagine a list of more than 500 members who are so closely knitted as one tight loving family, which I personally think is the best bit of this list. This letter serves only as a guide

from discussions with fellow moderators and from my observations. We have developed a Chatroom that is open 24/7. You are welcome to post an email to the group stating that you are in the chatroom-- come over and join in. This Chatroom has a Faith Chatroom and you are more than welcome to share how your Higher Power gets you through dealing with this disease. This has come about from suggestions as how to how to deal with posts with religious threads, and really lets face it there are going to be topics on this list you are not going to be interested in and perhaps religion is one of them. In this instance, the best way to deal with the topics you don't like is to press the delete key. People can get very precious of their beliefs. Fair enough, it is personal. However my way is uniquely mine. Your way is uniquely yours. We respect your path, and we expect you to respect ours. We practice tolerance.Our motto is tolerance, empathy

and compassion. We want the group site to be a place of education and sharing of the newest research and treatment options, so that those who need direction and understanding in the physical and emotional components of living with chronic illness can be explained and put into simple language so that you understand what is going on with your body. We are a global community with people from Australia, Europe, Africa, America and indeed all the continents. Therefore we support the right for everyone to have his or her own beliefs, which may or may not differ from your own. If there is a discussion thread you dislike, delete it. If there is a religious or political comment that is different from your own view, delete it. We are bonded by illness yet are all individuals. The message that needs to be shared is the fact that united as a family we stand: be that shown by praying for each other, meditating for each other, loving one another,

holding in our thoughts or hearts, or one of a thousand ways other ways to express that we support each other in this battle. It is possible to send prayers to someone without trying to convert them to your own special religion. When you send "prayers", you are actually sending special thoughts and well wishes -- and this is the way it should be taken. This is the way it should be handled. Any private letters you send or receive from members of this list we hope are courteous and polite. Obviously this is an area we have no control over and really, why should we? We maintain a support group, not monitor everyone's lives! My point is - be yourself, share your stories, offer your prayers, your love, your support, and know you are supported whether you are Catholic or Wiccan or Atheist. And if you don't like the post, be it religious or not - PRESS DELETE!

[Guest guest]

How true. However our closest friends understand and understand what we go through not only as care givers but as those who suffer with the disease as well.keeping everyone in my prayers.Matt

From: mjcv29a (AT) aol (DOT) com <mjcv29a (AT) aol (DOT) com>Subject: Re: File - Religious, Political and Other TopicsTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, November 1, 2009, 1:56 PM

Dear Group,

I can't believe it's been just about a week since I found you. I can't believe how much love and support I've received in that little time. It will be 3 years in March since i was diagnosed but have had symptoms for close to ten years (just didn't know what I had). I thank you all for inviting me in and being there. I have another question, the joint pains just started getting bad a few months ago and now it's to the point some days are bearable and other aren't but a new thing just started and I want to know if it's the disease. I guess I've had it for some time but it was so small I didn't give notice,. But the last day or two have been bad. If I bend to my side. like over a couch to pick up a napkin (while sitting on it) I get a sever pain depending on which side I bend. if I bend to my right it's like I get a sharp pain in my liver and to my left it's almost as if I can feel my spleen and it hurts and then lingers. These things are not normal.

If I didn't mention it in my first letter to you all, I've been a Chiropractor for 21 years, I used to work 6 days a week now I'm down to 2 in pain. I know what's normal pain and what's not normal, this is not normal. I just want to know if it's Sarcoid related,.It didn't take me long to realize you people know much more then my Pulmonologist- he thinks this is a painless disease unless it affects the skin,

Your in Health

Mitch

Ps Yes, feel free to ask me any musculoskelatal questions, we are all here to help each other, right? File - Religious, Political and Other Topics

Dear All,This is primarily a support group for a NASTY illness that does require people to call on their beliefs to get them through the dark days. Faith is certainly an issue when you are dealing with chronic and/or a progressive illness. Beyond these screens are real people with real feelings. People who laugh, cry, need, and are needed. We all have one thing in common and that is this illness which takes too much away from us like our entire life. When this list was started, it was started with the thought in mind that this disease robs us of way too much, and I was NOT going to add to that by having rules and regulations. We have enough limitations in REAL life, let alone bringing them into a support group. We also did not even imagine a list of more than 500 members who are so closely knitted as one tight loving family, which I personally think is the best bit of this list. This letter serves only as a guide

from discussions with fellow moderators and from my observations. We have developed a Chatroom that is open 24/7. You are welcome to post an email to the group stating that you are in the chatroom-- come over and join in. This Chatroom has a Faith Chatroom and you are more than welcome to share how your Higher Power gets you through dealing with this disease. This has come about from suggestions as how to how to deal with posts with religious threads, and really lets face it there are going to be topics on this list you are not going to be interested in and perhaps religion is one of them. In this instance, the best way to deal with the topics you don't like is to press the delete key. People can get very precious of their beliefs. Fair enough, it is personal. However my way is uniquely mine. Your way is uniquely yours. We respect your path, and we expect you to respect ours. We practice tolerance.Our motto is tolerance, empathy

and compassion. We want the group site to be a place of education and sharing of the newest research and treatment options, so that those who need direction and understanding in the physical and emotional components of living with chronic illness can be explained and put into simple language so that you understand what is going on with your body. We are a global community with people from Australia, Europe, Africa, America and indeed all the continents. Therefore we support the right for everyone to have his or her own beliefs, which may or may not differ from your own. If there is a discussion thread you dislike, delete it. If there is a religious or political comment that is different from your own view, delete it. We are bonded by illness yet are all individuals. The message that needs to be shared is the fact that united as a family we stand: be that shown by praying for each other, meditating for each other, loving one another,

holding in our thoughts or hearts, or one of a thousand ways other ways to express that we support each other in this battle. It is possible to send prayers to someone without trying to convert them to your own special religion. When you send "prayers", you are actually sending special thoughts and well wishes -- and this is the way it should be taken. This is the way it should be handled. Any private letters you send or receive from members of this list we hope are courteous and polite. Obviously this is an area we have no control over and really, why should we? We maintain a support group, not monitor everyone's lives! My point is - be yourself, share your stories, offer your prayers, your love, your support, and know you are supported whether you are Catholic or Wiccan or Atheist. And if you don't like the post, be it religious or not - PRESS DELETE!

[Guest guest]

Matt,

You are so correct in pointing out that not only do we-- as patients suffer. I know how much my husband agonizes over his role in taking care of me. He works full time, cuts firewood in the spring and summer so we have wood to heat with during the winter --- not just for us, but for my parents, the friends that allow us to cut on their property- which helps them reduce the fire fuel, our friends Mother, and a couple of extra cords to sell for those expenses we didn't anticipate.

Then he has the orchard to take care of-- which we both love, but this is the first year I've not been able to help at least a little bit-- and it was a "bumper" crop! We still have about 1/3 of the orchard to harvest. Ymmm!

More than 90% of the time he comes home and I've not gotten dinner together, I'm bushed from getting up. Sadly, most of the members here will tell you that their spouse couldn't handle their being chronically ill, and so they are on their own.

Men (and women) like you and are rare- and I know how much respect I have for all the peaceful warriors in the background, putting the pieces of our lives and marriages first.

Thank you, from the whole of my heart,

Tracie

To: Neurosarcoidosis Sent: Fri, November 13, 2009 4:32:23 PMSubject: Re: You look great

How true. However our closest friends understand and understand what we go through not only as care givers but as those who suffer with the disease as well.keeping everyone in my prayers.Matt

From: mjcv29a (AT) aol (DOT) com <mjcv29a (AT) aol (DOT) com>Subject: Re: File - Religious, Political and Other TopicsTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, November 1, 2009, 1:56 PM

Dear Group,

I can't believe it's been just about a week since I found you. I can't believe how much love and support I've received in that little time. It will be 3 years in March since i was diagnosed but have had symptoms for close to ten years (just didn't know what I had). I thank you all for inviting me in and being there. I have another question, the joint pains just started getting bad a few months ago and now it's to the point some days are bearable and other aren't but a new thing just started and I want to know if it's the disease. I guess I've had it for some time but it was so small I didn't give notice,. But the last day or two have been bad. If I bend to my side. like over a couch to pick up a napkin (while sitting on it) I get a sever pain depending on which side I bend. if I bend to my right it's like I get a sharp pain in my liver and to my left it's almost as if I can feel my spleen and it hurts and then lingers. These things are not normal.

If I didn't mention it in my first letter to you all, I've been a Chiropractor for 21 years, I used to work 6 days a week now I'm down to 2 in pain. I know what's normal pain and what's not normal, this is not normal. I just want to know if it's Sarcoid related,.It didn't take me long to realize you people know much more then my Pulmonologist- he thinks this is a painless disease unless it affects the skin,

Your in Health

Mitch

Ps Yes, feel free to ask me any musculoskelatal questions, we are all here to help each other, right? File - Religious, Political and Other Topics

Dear All,This is primarily a support group for a NASTY illness that does require people to call on their beliefs to get them through the dark days. Faith is certainly an issue when you are dealing with chronic and/or a progressive illness. Beyond these screens are real people with real feelings. People who laugh, cry, need, and are needed. We all have one thing in common and that is this illness which takes too much away from us like our entire life. When this list was started, it was started with the thought in mind that this disease robs us of way too much, and I was NOT going to add to that by having rules and regulations. We have enough limitations in REAL life, let alone bringing them into a support group. We also did not even imagine a list of more than 500 members who are so closely knitted as one tight loving family, which I personally think is the best bit of this list. This letter serves only as a guide

from discussions with fellow moderators and from my observations. We have developed a Chatroom that is open 24/7. You are welcome to post an email to the group stating that you are in the chatroom-- come over and join in. This Chatroom has a Faith Chatroom and you are more than welcome to share how your Higher Power gets you through dealing with this disease. This has come about from suggestions as how to how to deal with posts with religious threads, and really lets face it there are going to be topics on this list you are not going to be interested in and perhaps religion is one of them. In this instance, the best way to deal with the topics you don't like is to press the delete key. People can get very precious of their beliefs. Fair enough, it is personal. However my way is uniquely mine. Your way is uniquely yours. We respect your path, and we expect you to respect ours. We practice tolerance.Our motto is tolerance, empathy

and compassion. We want the group site to be a place of education and sharing of the newest research and treatment options, so that those who need direction and understanding in the physical and emotional components of living with chronic illness can be explained and put into simple language so that you understand what is going on with your body. We are a global community with people from Australia, Europe, Africa, America and indeed all the continents. Therefore we support the right for everyone to have his or her own beliefs, which may or may not differ from your own. If there is a discussion thread you dislike, delete it. If there is a religious or political comment that is different from your own view, delete it. We are bonded by illness yet are all individuals. The message that needs to be shared is the fact that united as a family we stand: be that shown by praying for each other, meditating for each other, loving one another,

holding in our thoughts or hearts, or one of a thousand ways other ways to express that we support each other in this battle. It is possible to send prayers to someone without trying to convert them to your own special religion. When you send "prayers", you are actually sending special thoughts and well wishes -- and this is the way it should be taken. This is the way it should be handled. Any private letters you send or receive from members of this list we hope are courteous and polite. Obviously this is an area we have no control over and really, why should we? We maintain a support group, not monitor everyone's lives! My point is - be yourself, share your stories, offer your prayers, your love, your support, and know you are supported whether you are Catholic or Wiccan or Atheist. And if you don't like the post, be it religious or not - PRESS DELETE!