Re: A very personal story

[Guest guest]

Tracie, I'm sorry for the loss of your sister in law, Alcohol is a sickness, that many can not walk away from.  Sounds like your sister in law was trying to take care of her illness. I too get from " Christian friends " that if I have enough faith, that I will be healed, and I say back,  that I truly believe I have this illness for a reason, maybe to show others how to go on with it, it lead me here and I have made many loving friends here.  I loved nursing, but I also love what I am doing now.  Faith means believing in what we can't see, and we can't see what will happen tomorrow or in the next hour, it's believing that we will be able to get out of bed " by ourselves " tomorrow, it's believing that we are doing the best we can. 

I have to share this with you all,  as I think I said I went to my Aunts funeral this past week, and stayed with my brother, my Aunt has been dealing with Sarcoidosis for years, and I just found this out at the funeral, there was some question, but in the end, it got here. She lived to be 82, wow, however my memories of her are all of being sick.

and the family knows I have Sarcoidosis and no one Judge me, they all just loved me, and took such good care of me, what a difference, my Aunt and her family are good Christians, and my Aunt use to Judge others, I think she learned not to.

My brother was so good to me, and my sister in law said I have a very good attitude about my illness, but what are we going to do, right:)We all have our own level of Faith, we are not failing to believe, I am right where I am suppose to be, doing what I am suppose to be doing.

I would of missed a lot of time with my kids if I were still working at the hospital, I could never say no when they were busy. I wish you all the best of everything in life you can get. (and I'm thinking hey maybe I should start buying lottery tickets), seems my odds of winning just might be pretty good:)

I love you Tracie, you always such a beautiful way with words, you are blessed in many ways, and in my prayers always. Love, Marla

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

[Guest guest]

I am sorry for your loss Tracie. Your words spoke from your heart and those words touched my heart. Thank you.

from Canada

Subject: Re: A very personal storyTo: Neurosarcoidosis Received: Sunday, February 21, 2010, 3:21 AM

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

From: "KangiKanti7@ aol.com" <KangiKanti7@ aol.com>To: Neurosarcoidosis@ yahoogroups. comSent: 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

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