Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Tracie, that was VERY well written. The fact that you did NOT give in to the anger you must have felt, but instead chose to see this from a higher perspective is SO BEAUTIFUL!! I'm not sure I could have managed that. It sounds like these people need to read "But You Look Good" by the Invisible Disabilities Advocate!! BIG KUDOS to you on being the adult once again! I can't help but think that they will someday find themselves in a situation like yours, since intolerance is always a request for understanding on a "higher" level. You are awesome!!! Love always, Jeri A very personal story This last Wednesday I lost a sister-in-law to an infection in her blood stream. Sadly, she was an alcoholic and her liver was gone. Her husband-- my husband's brother, had called the prior Sunday night to tell us she was in ICU and that her docs had given her 6 months to live. Three days later, she was gone. I called a couple of friends-- and their reply-- "If she'd given herself to Christ, she'd still be alive." "L" was a Christian-- a devout Christian. She had an illness that was bigger than even her faith. It came in a bottle of whiskey. She was part Native American Indian-- so these friends said "Ahh, yep, she didn't stand a chance." Later in the week, I met with a group of women that I do a study group with. The first thing said to me, was "You look great!" You know, if you give your health issues to Christ-- he'll heal you." Another replied, "you need to really spend your meditation prayer time asking God to heal you." Another-- "From looking at you, I don't believe you're sick. Have you had counselling, you really should sit down with Craig (the church minister) and have him work with you on your faith issues. God can heal all..." To tell you the truth- L did not deserve the life path she ended up on- yes, she had access to groups and tools to help her deal with her alcoholism- and she was an ongoing active member of AA. Her family also supported her there. I don't deserve systemic sarcoidosis-- nor does any other member of this group. It's not my lack of faith that has me sick-- it isn't that I have not spent thousands of hours on this site looking for answers for all of us. It isn't that I haven't managed to find myself in a clinical trial to see if Biological Response Modifiers (Remicade) would help slow the progression of my pulmonary sarcoidosis-- and it did so for the last 5 yrs. I came across the trial via looking at the medical articles and reading the other articles cited--- and took a chance, clicked on one that took me to another site, and then a link to the trial. I was one of 4 people that were involved in this trial in LA. Five more people were in it in Denver, and in Seattle Wash. There was only 125 worldwide-- an all the rest where on the East Coast and in Europe. I have no doubt that it wasn't "Devine" Guidance that had me follow those links. As for my relationship with Higher Power-- it's way beyond question. All of us have come across good Christians with good intentions and brains of mush. They are so judgemental that anyone who is sick is sick because of lack of faith. And they are the first ones in line to tell you that you aren't as "good" as they are-- follow them and you to will spend your life judging others. (yes, it's sarcasm.) Darlene, Rose, , Marla, Kim, Debbie and I have all committed ourself to this group and have faith that we can find answers to at least make this journey as comfortable as possible. There are no cures-- no one knows what causes sarcoidosis, and no one has even developed a test that unless they can get a biopsy of an exact place where there is a microscopic granuloma-- that it can even be 100% confirmed. We have a greater chance of being struck by lightening than having neurosarcoidosis. We have a greater chance of winning the lottery than having NS. When we get into the battle of members pooring out their religious beliefs-- many of us come from the same experience I addressed in this story. We are angry that others woul even think for a minute that we have brought this illness to ourself because of a lack of faith. If I want to be ministered to, I can go and spend tomorrow morning at my church. I can then go to "coffee hour" and spend more time with good christians telling me how good I look and that they don't believe I'm ill. The fact that I am on oxygen doesn't mean anything to them-- it's probably an "attention" getter. My dear lost "L" doesn't deserve to be dead at the age of 55- her last days in a hell of sepsis (the toxins in her blood stream and liver and kidneys poisoning her-- and it is the most painful death I can imagine). Her students (she was a schoolteacher) didn't deserve to lose a teacher that saw in them such wonderful human potential-- and yet couldn't see it in herself. More so, she does not deserve the judgement of those who saw the alcoholic and not a beautiful, caring, woman that was not able to look at the hardships of daily life and extract herself from the pain. For me, this is why I come from the place where I ask that we "as Christians" understand that even with faith and a love for life eternal, realize that we can do more harm when we insist on confrontational religion, rather than faith by invitation. I wish for all of us to look inward, and if we see ourself in the places described here, that we step back, and gently reach out-- with love and compassion. None of us carry our illness wrapped in a cast, a bandage, or in a wheelchair. Sarcoidosis is for life--- Live gratiously. Sincerely, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Jeri, How are you? I think of you often, and truly miss your input with the group. For those that don't know you-- Jeri was a caregiver for her wonderful husband that passed away from complications of sarcoidosis. My friend, I send love back to you, Tracie To: Neurosarcoidosis Sent: Sat, February 20, 2010 4:39:30 PMSubject: Re: A very personal story Tracie, that was VERY well written. The fact that you did NOT give in to the anger you must have felt, but instead chose to see this from a higher perspective is SO BEAUTIFUL!! I'm not sure I could have managed that. It sounds like these people need to read "But You Look Good" by the Invisible Disabilities Advocate!! BIG KUDOS to you on being the adult once again! I can't help but think that they will someday find themselves in a situation like yours, since intolerance is always a request for understanding on a "higher" level. You are awesome!!!Love always,Jeri A very personal story This last Wednesday I lost a sister-in-law to an infection in her blood stream. Sadly, she was an alcoholic and her liver was gone. Her husband-- my husband's brother, had called the prior Sunday night to tell us she was in ICU and that her docs had given her 6 months to live. Three days later, she was gone. I called a couple of friends-- and their reply-- "If she'd given herself to Christ, she'd still be alive." "L" was a Christian-- a devout Christian. She had an illness that was bigger than even her faith. It came in a bottle of whiskey. She was part Native American Indian-- so these friends said "Ahh, yep, she didn't stand a chance." Later in the week, I met with a group of women that I do a study group with. The first thing said to me, was "You look great!" You know, if you give your health issues to Christ-- he'll heal you." Another replied, "you need to really spend your meditation prayer time asking God to heal you." Another-- "From looking at you, I don't believe you're sick. Have you had counselling, you really should sit down with Craig (the church minister) and have him work with you on your faith issues. God can heal all..." To tell you the truth- L did not deserve the life path she ended up on- yes, she had access to groups and tools to help her deal with her alcoholism- and she was an ongoing active member of AA. Her family also supported her there. I don't deserve systemic sarcoidosis- - nor does any other member of this group. It's not my lack of faith that has me sick-- it isn't that I have not spent thousands of hours on this site looking for answers for all of us. It isn't that I haven't managed to find myself in a clinical trial to see if Biological Response Modifiers (Remicade) would help slow the progression of my pulmonary sarcoidosis- - and it did so for the last 5 yrs. I came across the trial via looking at the medical articles and reading the other articles cited--- and took a chance, clicked on one that took me to another site, and then a link to the trial. I was one of 4 people that were involved in this trial in LA. Five more people were in it in Denver, and in Seattle Wash. There was only 125 worldwide-- an all the rest where on the East Coast and in Europe. I have no doubt that it wasn't "Devine" Guidance that had me follow those links. As for my relationship with Higher Power-- it's way beyond question. All of us have come across good Christians with good intentions and brains of mush. They are so judgemental that anyone who is sick is sick because of lack of faith. And they are the first ones in line to tell you that you aren't as "good" as they are-- follow them and you to will spend your life judging others. (yes, it's sarcasm.) Darlene, Rose, , Marla, Kim, Debbie and I have all committed ourself to this group and have faith that we can find answers to at least make this journey as comfortable as possible. There are no cures-- no one knows what causes sarcoidosis, and no one has even developed a test that unless they can get a biopsy of an exact place where there is a microscopic granuloma-- that it can even be 100% confirmed. We have a greater chance of being struck by lightening than having neurosarcoidosis. We have a greater chance of winning the lottery than having NS. When we get into the battle of members pooring out their religious beliefs-- many of us come from the same experience I addressed in this story. We are angry that others woul even think for a minute that we have brought this illness to ourself because of a lack of faith. If I want to be ministered to, I can go and spend tomorrow morning at my church. I can then go to "coffee hour" and spend more time with good christians telling me how good I look and that they don't believe I'm ill. The fact that I am on oxygen doesn't mean anything to them-- it's probably an "attention" getter. My dear lost "L" doesn't deserve to be dead at the age of 55- her last days in a hell of sepsis (the toxins in her blood stream and liver and kidneys poisoning her-- and it is the most painful death I can imagine). Her students (she was a schoolteacher) didn't deserve to lose a teacher that saw in them such wonderful human potential-- and yet couldn't see it in herself. More so, she does not deserve the judgement of those who saw the alcoholic and not a beautiful, caring, woman that was not able to look at the hardships of daily life and extract herself from the pain. For me, this is why I come from the place where I ask that we "as Christians" understand that even with faith and a love for life eternal, realize that we can do more harm when we insist on confrontational religion, rather than faith by invitation. I wish for all of us to look inward, and if we see ourself in the places described here, that we step back, and gently reach out-- with love and compassion. None of us carry our illness wrapped in a cast, a bandage, or in a wheelchair. Sarcoidosis is for life--- Live gratiously. Sincerely, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 The lack of empathy and understanding in this world has reached an all-time high as far as i am concerned. When i started to hear comments like that from the members of the church i was going to(when I first got ill about 11 years ago) .... i visited a few new churches(to me) and found one full of loving, non-judgmental, caring people. What a world of difference. In the five years i have been going there, when I am able, I have never heard a remark like that. They have even made numerous visits to my home to give me communion...which the old church never did. I think most of them, from the old church, were acting out of fear. When they saw a Christian of 25 years suffering even after they prayed for her...well, it must be something she is doing wrong. If she went to church more, if she prayed non-stop(as if i could in excruciating pain), etc., etc.,...all the excuses instead of this just might be something beyond our present understanding. People want to understand everything. But what goes around ...comes around. Many of the people who said mean things to me years ago are going through tremendous health problems right now. Life has a way of opening your eyes to things even if it takes a slap to the side of your head. There will always be more to a person than a label someone has put upon them. But I look on it like this...the ones who judge...will be judged. I certainly don't have the time or strength to do it. I just have to put them aside for my personal mental health until they 'see the light'. When people bring up having more faith..I bring up the story of the good Samaritan who helped the hurt person along the side of the road. And the four friends who carried their friend and lifted him on the roof of the building and lowered him down to be prayed for. And the story of the adulterer and Jesus told her accusers...may the one who has no sin throw the first rock.... That type of stuff usually shuts them up fast....lol. Life is short...live it to the fullest...to your last living breath. > > Subject: A very personal story > To: neurosarcoidosis > Date: Saturday, February 20, 2010, 11:59 PM > > > This > last Wednesday I lost a sister-in-law to an infection in her > blood stream. > Sadly, she was an alcoholic and her liver was gone. > Her husband-- my husband's brother, had called the > prior Sunday night to tell us she was in ICU and that > her docs had given her 6 months to live. Three days > later, she was gone. > I called a couple of friends-- and their reply-- > " If she'd given herself to Christ, she'd still > be alive. "  > " L " was a Christian-- a devout > Christian. She had an illness that was bigger than > even her faith. It came in a bottle of whiskey. > She was part Native American Indian-- so these friends said > " Ahh, yep, she didn't stand a chance. "  > > Later in the week, I met with a group of women that I do > a study group with. The first thing said to me, was > " You look great! "  You know, if you give your > health issues to Christ-- he'll heal you. "  > Another replied, " you need to really spend your > meditation prayer time asking God to heal you. " > Another-- " From looking at you, I don't believe > you're sick. Have you had counselling, you really > should sit down with Craig (the church minister) and have > him work with you on your faith issues. God can heal > all... " > To tell you the truth- L did not deserve the life path > she ended up on- yes, she had access to groups and tools to > help her deal with her alcoholism- and she was an ongoing > active member of AA. Her family also supported her > there. > I don't deserve systemic sarcoidosis-- nor does any > other member of this group. It's not my lack of > faith that has me sick-- it isn't that I have not spent > thousands of hours on this site looking for answers for all > of us. It isn't that I haven't managed to find > myself in a clinical trial to see if Biological Response > Modifiers (Remicade) would help slow the progression of my > pulmonary sarcoidosis-- and it did so for the last 5 > yrs. > I came across the trial via looking at the medical > articles and reading the other articles cited--- and took a > chance, clicked on one that took me to another site, and > then a link to the trial. I was one of 4 people that > were involved in this trial in LA. Five more people > were in it in Denver, and in Seattle Wash. There > was only 125 worldwide-- an all the rest where on the East > Coast and in Europe. > I have no doubt that it wasn't " Devine " > Guidance that had me follow those links. > As for my relationship with Higher Power-- it's way > beyond question. >  > All of us have come across good Christians with good > intentions and brains of mush. They are so judgemental > that anyone who is sick is sick because of lack of > faith. And they are the first ones in line to tell you > that you aren't as " good " as they are-- follow > them and you to will spend your life judging others. > (yes, it's sarcasm.) > Darlene, Rose, , Marla, Kim, Debbie and I have all > committed ourself to this group and have faith that we can > find answers to at least make this journey as comfortable as > possible. There are no cures-- no one knows what > causes sarcoidosis, and no one has even developed a test > that unless they can get a biopsy of an exact place where > there is a microscopic granuloma-- that it can even be 100% > confirmed. We have a greater chance of being struck by > lightening than having neurosarcoidosis. We have a > greater chance of winning the lottery than having NS. > >  > When we get into the battle of members pooring out their > religious beliefs-- many of us come from the same experience > I addressed in this story. We are angry that others woul > even think for a minute that we have brought this illness to > ourself because of a lack of faith. > If I want to be ministered to, I can go and spend > tomorrow morning at my church. I can then go to > " coffee hour " and spend more time with good > christians telling me how good I look and that they > don't believe I'm ill. > The fact that I am on oxygen doesn't mean anything > to them-- it's probably an " attention " > getter. > My dear lost " L " doesn't deserve to be > dead at the age of 55- her last days in a hell of sepsis > (the toxins in her blood stream and liver and kidneys > poisoning her-- and it is the most painful death I can > imagine). Her students (she was a schoolteacher) > didn't deserve to lose a teacher that saw in them such > wonderful human potential-- and yet couldn't see it in > herself. > More so, she does not deserve the judgement of those who > saw the alcoholic and not a beautiful, caring, woman that > was not able to look at the hardships of daily life and > extract herself from the pain. >  > For me, this is why I come from the place where I ask > that we " as Christians " understand that even with > faith and a love for life eternal, realize that we can do > more harm when we insist on confrontational religion, rather > than faith by invitation. >  > I wish for all of us to look inward, and if we see > ourself in the places described here, that we step back, and > gently reach out-- with love and compassion. None of > us carry our illness wrapped in a cast, a bandage, or in a > wheelchair. > Sarcoidosis is for life--- Live gratiously. >  > Sincerely, > Tracie > NS Co-owner/moderator > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 My dearest Tracie, I have been away quite awhile, till I can get my neck fixed the computer is a bit of an enemy; but something made me read your email. The judgmental people must not read much, ask over and over for the thorn to be removed from his flesh, until God let him know it was not going to be. I believe from all I read about him, and the way he wrote, that he did have the awful eye problem most scholars thought he had. He was one of the greatest men of faith, but he was not healed here on earth. Our prayer will be answered, we will be healed either here on earth, or when we go home. I am so sorry you were hurt, and so unfairly. The only appropriate thing I have ever found to say when someone has lost a loved one is "I'm so sorry". Please forgive me if you don't hear much from me, turning my head a certain way causes pain, causes me to lose the feeling in my left arm, and it is getting weaker and weaker. I know what's wrong, but it's going to take surgery and hardware to fix it; my cardiologist was not crazy about that. I'm a pianist, so I guess I will have to try to figure out a way to get it fixed soon. Please take care, and I am so sorry about your sister-in-law, I sincerely mean that. Connie Subject: A very personal storyTo: neurosarcoidosis Date: Saturday, February 20, 2010, 6:59 PM This last Wednesday I lost a sister-in-law to an infection in her blood stream. Sadly, she was an alcoholic and her liver was gone. Her husband-- my husband's brother, had called the prior Sunday night to tell us she was in ICU and that her docs had given her 6 months to live. Three days later, she was gone. I called a couple of friends-- and their reply-- "If she'd given herself to Christ, she'd still be alive." "L" was a Christian-- a devout Christian. She had an illness that was bigger than even her faith. It came in a bottle of whiskey. She was part Native American Indian-- so these friends said "Ahh, yep, she didn't stand a chance." Later in the week, I met with a group of women that I do a study group with. The first thing said to me, was "You look great!" You know, if you give your health issues to Christ-- he'll heal you." Another replied, "you need to really spend your meditation prayer time asking God to heal you." Another-- "From looking at you, I don't believe you're sick. Have you had counselling, you really should sit down with Craig (the church minister) and have him work with you on your faith issues. God can heal all..." To tell you the truth- L did not deserve the life path she ended up on- yes, she had access to groups and tools to help her deal with her alcoholism- and she was an ongoing active member of AA. Her family also supported her there. I don't deserve systemic sarcoidosis-- nor does any other member of this group. It's not my lack of faith that has me sick-- it isn't that I have not spent thousands of hours on this site looking for answers for all of us. It isn't that I haven't managed to find myself in a clinical trial to see if Biological Response Modifiers (Remicade) would help slow the progression of my pulmonary sarcoidosis-- and it did so for the last 5 yrs. I came across the trial via looking at the medical articles and reading the other articles cited--- and took a chance, clicked on one that took me to another site, and then a link to the trial. I was one of 4 people that were involved in this trial in LA. Five more people were in it in Denver, and in Seattle Wash. There was only 125 worldwide-- an all the rest where on the East Coast and in Europe. I have no doubt that it wasn't "Devine" Guidance that had me follow those links. As for my relationship with Higher Power-- it's way beyond question. All of us have come across good Christians with good intentions and brains of mush. They are so judgemental that anyone who is sick is sick because of lack of faith. And they are the first ones in line to tell you that you aren't as "good" as they are-- follow them and you to will spend your life judging others. (yes, it's sarcasm.) Darlene, Rose, , Marla, Kim, Debbie and I have all committed ourself to this group and have faith that we can find answers to at least make this journey as comfortable as possible. There are no cures-- no one knows what causes sarcoidosis, and no one has even developed a test that unless they can get a biopsy of an exact place where there is a microscopic granuloma-- that it can even be 100% confirmed. We have a greater chance of being struck by lightening than having neurosarcoidosis. We have a greater chance of winning the lottery than having NS. When we get into the battle of members pooring out their religious beliefs-- many of us come from the same experience I addressed in this story. We are angry that others woul even think for a minute that we have brought this illness to ourself because of a lack of faith. If I want to be ministered to, I can go and spend tomorrow morning at my church. I can then go to "coffee hour" and spend more time with good christians telling me how good I look and that they don't believe I'm ill. The fact that I am on oxygen doesn't mean anything to them-- it's probably an "attention" getter. My dear lost "L" doesn't deserve to be dead at the age of 55- her last days in a hell of sepsis (the toxins in her blood stream and liver and kidneys poisoning her-- and it is the most painful death I can imagine). Her students (she was a schoolteacher) didn't deserve to lose a teacher that saw in them such wonderful human potential-- and yet couldn't see it in herself. More so, she does not deserve the judgement of those who saw the alcoholic and not a beautiful, caring, woman that was not able to look at the hardships of daily life and extract herself from the pain. For me, this is why I come from the place where I ask that we "as Christians" understand that even with faith and a love for life eternal, realize that we can do more harm when we insist on confrontational religion, rather than faith by invitation. I wish for all of us to look inward, and if we see ourself in the places described here, that we step back, and gently reach out-- with love and compassion. None of us carry our illness wrapped in a cast, a bandage, or in a wheelchair. Sarcoidosis is for life--- Live gratiously. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Thank you Connie, and I do hope that you get your neck fixed-- we miss you. ((((((((((( hugs, Tracie ))))))))))))0 To: Neurosarcoidosis Sent: Sun, February 21, 2010 12:13:32 AMSubject: Re: A very personal story My dearest Tracie, I have been away quite awhile, till I can get my neck fixed the computer is a bit of an enemy; but something made me read your email. The judgmental people must not read much, ask over and over for the thorn to be removed from his flesh, until God let him know it was not going to be. I believe from all I read about him, and the way he wrote, that he did have the awful eye problem most scholars thought he had. He was one of the greatest men of faith, but he was not healed here on earth. Our prayer will be answered, we will be healed either here on earth, or when we go home. I am so sorry you were hurt, and so unfairly. The only appropriate thing I have ever found to say when someone has lost a loved one is "I'm so sorry". Please forgive me if you don't hear much from me, turning my head a certain way causes pain, causes me to lose the feeling in my left arm, and it is getting weaker and weaker. I know what's wrong, but it's going to take surgery and hardware to fix it; my cardiologist was not crazy about that. I'm a pianist, so I guess I will have to try to figure out a way to get it fixed soon. Please take care, and I am so sorry about your sister-in-law, I sincerely mean that. Connie From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: A very personal storyTo: neurosarcoidosis@ yahoogroups. comDate: Saturday, February 20, 2010, 6:59 PM This last Wednesday I lost a sister-in-law to an infection in her blood stream. Sadly, she was an alcoholic and her liver was gone. Her husband-- my husband's brother, had called the prior Sunday night to tell us she was in ICU and that her docs had given her 6 months to live. Three days later, she was gone. I called a couple of friends-- and their reply-- "If she'd given herself to Christ, she'd still be alive." "L" was a Christian-- a devout Christian. She had an illness that was bigger than even her faith. It came in a bottle of whiskey. She was part Native American Indian-- so these friends said "Ahh, yep, she didn't stand a chance." Later in the week, I met with a group of women that I do a study group with. The first thing said to me, was "You look great!" You know, if you give your health issues to Christ-- he'll heal you." Another replied, "you need to really spend your meditation prayer time asking God to heal you." Another-- "From looking at you, I don't believe you're sick. Have you had counselling, you really should sit down with Craig (the church minister) and have him work with you on your faith issues. God can heal all..." To tell you the truth- L did not deserve the life path she ended up on- yes, she had access to groups and tools to help her deal with her alcoholism- and she was an ongoing active member of AA. Her family also supported her there. I don't deserve systemic sarcoidosis- - nor does any other member of this group. It's not my lack of faith that has me sick-- it isn't that I have not spent thousands of hours on this site looking for answers for all of us. It isn't that I haven't managed to find myself in a clinical trial to see if Biological Response Modifiers (Remicade) would help slow the progression of my pulmonary sarcoidosis- - and it did so for the last 5 yrs. I came across the trial via looking at the medical articles and reading the other articles cited--- and took a chance, clicked on one that took me to another site, and then a link to the trial. I was one of 4 people that were involved in this trial in LA. Five more people were in it in Denver, and in Seattle Wash. There was only 125 worldwide-- an all the rest where on the East Coast and in Europe. I have no doubt that it wasn't "Devine" Guidance that had me follow those links. As for my relationship with Higher Power-- it's way beyond question. All of us have come across good Christians with good intentions and brains of mush. They are so judgemental that anyone who is sick is sick because of lack of faith. And they are the first ones in line to tell you that you aren't as "good" as they are-- follow them and you to will spend your life judging others. (yes, it's sarcasm.) Darlene, Rose, , Marla, Kim, Debbie and I have all committed ourself to this group and have faith that we can find answers to at least make this journey as comfortable as possible. There are no cures-- no one knows what causes sarcoidosis, and no one has even developed a test that unless they can get a biopsy of an exact place where there is a microscopic granuloma-- that it can even be 100% confirmed. We have a greater chance of being struck by lightening than having neurosarcoidosis. We have a greater chance of winning the lottery than having NS. When we get into the battle of members pooring out their religious beliefs-- many of us come from the same experience I addressed in this story. We are angry that others woul even think for a minute that we have brought this illness to ourself because of a lack of faith. If I want to be ministered to, I can go and spend tomorrow morning at my church. I can then go to "coffee hour" and spend more time with good christians telling me how good I look and that they don't believe I'm ill. The fact that I am on oxygen doesn't mean anything to them-- it's probably an "attention" getter. My dear lost "L" doesn't deserve to be dead at the age of 55- her last days in a hell of sepsis (the toxins in her blood stream and liver and kidneys poisoning her-- and it is the most painful death I can imagine). Her students (she was a schoolteacher) didn't deserve to lose a teacher that saw in them such wonderful human potential-- and yet couldn't see it in herself. More so, she does not deserve the judgement of those who saw the alcoholic and not a beautiful, caring, woman that was not able to look at the hardships of daily life and extract herself from the pain. For me, this is why I come from the place where I ask that we "as Christians" understand that even with faith and a love for life eternal, realize that we can do more harm when we insist on confrontational religion, rather than faith by invitation. I wish for all of us to look inward, and if we see ourself in the places described here, that we step back, and gently reach out-- with love and compassion. None of us carry our illness wrapped in a cast, a bandage, or in a wheelchair. Sarcoidosis is for life--- Live gratiously. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 I agree, thank you. To: Neurosarcoidosis Sent: Sun, February 21, 2010 12:09:15 AMSubject: Re: A very personal story The lack of empathy and understanding in this world has reached an all-time high as far as i am concerned. When i started to hear comments like that from the members of the church i was going to(when I first got ill about 11 years ago) ... i visited a few new churches(to me) and found one full of loving, non-judgmental, caring people. What a world of difference. In the five years i have been going there, when I am able, I have never heard a remark like that. They have even made numerous visits to my home to give me communion... which the old church never did. I think most of them, from the old church, were acting out of fear. When they saw a Christian of 25 years suffering even after they prayed for her...well, it must be something she is doing wrong. If she went to church more, if she prayed non-stop(as if i could in excruciating pain), etc., etc.,...all the excuses instead of this just might be something beyond our present understanding. Peoplewant to understand everything. But what goes around ...comes around. Many of the people who said mean things to me years ago are going through tremendous health problems right now. Life has a way of opening your eyes to things even if it takes a slap to the side of your head. There will always be more to a person than a label someone has put upon them. But I look on it like this...the ones who judge...will be judged. I certainly don't have the time or strength to do it. I just have to put them aside for my personal mental health until they 'see the light'. When people bring up having more faith..I bring up the story of the good Samaritan who helped the hurt person along the side of the road. And the four friends who carried their friend and lifted him on the roof of the building and lowered him down to be prayed for. And the story of the adulterer and Jesus told her accusers...may the one who has no sin throw the first rock.... That typeof stuff usually shuts them up fast....lol. Life is short...live it to the fullest...to your last living breath.> From: tracie feldhaus <tiodaat2001@ yahoo.com>> Subject: A very personal story> To: neurosarcoidosis@ yahoogroups. com> Date: Saturday, February 20, 2010, 11:59 PM> > > This> last Wednesday I lost a sister-in-law to an infection in her> blood stream. > Sadly, she was an alcoholic and her liver was gone. > Her husband-- my husband's brother, had called the> prior Sunday night to tell us she was in ICU and that> her docs had given her 6 months to live. Three days> later, she was gone.> I called a couple of friends-- and their reply--> "If she'd given herself to Christ, she'd still> be alive." > "L" was a Christian-- a devout> Christian. She had an illness that was bigger than> even her faith. It came in a bottle of whiskey. > She was part Native American Indian-- so these friends said> "Ahh, yep, she didn't stand a chance." > > Later in the week, I met with a group of women that I do> a study group with. The first thing said to me, was> "You look great!" You know, if you give your> health issues to Christ-- he'll heal you." > Another replied, "you need to really spend your> meditation prayer time asking God to heal you."> Another-- "From looking at you, I don't believe> you're sick. Have you had counselling, you really> should sit down with Craig (the church minister) and have> him work with you on your faith issues. God can heal> all..."> To tell you the truth- L did not deserve the life path> she ended up on- yes, she had access to groups and tools to> help her deal with her alcoholism- and she was an ongoing> active member of AA. Her family also supported her> there. > I don't deserve systemic sarcoidosis- - nor does any> other member of this group. It's not my lack of> faith that has me sick-- it isn't that I have not spent> thousands of hours on this site looking for answers for all> of us. It isn't that I haven't managed to find> myself in a clinical trial to see if Biological Response> Modifiers (Remicade) would help slow the progression of my> pulmonary sarcoidosis- - and it did so for the last 5> yrs. > I came across the trial via looking at the medical> articles and reading the other articles cited--- and took a> chance, clicked on one that took me to another site, and> then a link to the trial. I was one of 4 people that> were involved in this trial in LA. Five more people> were in it in Denver, and in Seattle Wash. There> was only 125 worldwide-- an all the rest where on the East> Coast and in Europe. > I have no doubt that it wasn't "Devine"> Guidance that had me follow those links. > As for my relationship with Higher Power-- it's way> beyond question. > > All of us have come across good Christians with good> intentions and brains of mush. They are so judgemental> that anyone who is sick is sick because of lack of> faith. And they are the first ones in line to tell you> that you aren't as "good" as they are-- follow> them and you to will spend your life judging others. > (yes, it's sarcasm.)> Darlene, Rose, , Marla, Kim, Debbie and I have all> committed ourself to this group and have faith that we can> find answers to at least make this journey as comfortable as> possible. There are no cures-- no one knows what> causes sarcoidosis, and no one has even developed a test> that unless they can get a biopsy of an exact place where> there is a microscopic granuloma-- that it can even be 100%> confirmed. We have a greater chance of being struck by> lightening than having neurosarcoidosis. We have a> greater chance of winning the lottery than having NS. > > > When we get into the battle of members pooring out their> religious beliefs-- many of us come from the same experience> I addressed in this story. We are angry that others woul> even think for a minute that we have brought this illness to> ourself because of a lack of faith. > If I want to be ministered to, I can go and spend> tomorrow morning at my church. I can then go to> "coffee hour" and spend more time with good> christians telling me how good I look and that they> don't believe I'm ill. > The fact that I am on oxygen doesn't mean anything> to them-- it's probably an "attention"> getter. > My dear lost "L" doesn't deserve to be> dead at the age of 55- her last days in a hell of sepsis> (the toxins in her blood stream and liver and kidneys> poisoning her-- and it is the most painful death I can> imagine). Her students (she was a schoolteacher)> didn't deserve to lose a teacher that saw in them such> wonderful human potential-- and yet couldn't see it in> herself. > More so, she does not deserve the judgement of those who> saw the alcoholic and not a beautiful, caring, woman that> was not able to look at the hardships of daily life and> extract herself from the pain. > > For me, this is why I come from the place where I ask> that we "as Christians" understand that even with> faith and a love for life eternal, realize that we can do> more harm when we insist on confrontational religion, rather> than faith by invitation. > > I wish for all of us to look inward, and if we see> ourself in the places described here, that we step back, and> gently reach out-- with love and compassion. None of> us carry our illness wrapped in a cast, a bandage, or in a> wheelchair. > Sarcoidosis is for life--- Live gratiously.> > Sincerely,> Tracie> NS Co-owner/moderator > > Quote Link to comment Share on other sites More sharing options...
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