Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 Matt, Thank you! is blessed to have you on her side! So many of us have been living with sarcoidosis for years-- 19 for me. It's a tough disease, and like you said-- different for all of us. Our MESSAGE ARCHIVES and our LINKS section have so many articles on so many subjects, and they can be printed out and taken to your docs. The articles written by medical specialists are great-- and the docs may hold them with more respect than us "common folk" telling them what is what. I respect that you want help with whatever level of distress either you or is experiencing. IF you can understand that what she's telling you is so real-- and get some advice on how to help her-- then she can work through the challenges that much faster. You both experience all the Grief of Living with chronic illness- and you both are important and need holding in these places. Even the toughest spots are easier shared. As for the info that you're not alone in what you're going thru (and jenny;s going thru) put it out there-- we will answer and give you info that might help your docs in realizing that this disease isn't a mindf-k game. It's a reality show from hell. You may want to search the message archives for depression and sarcoidosis-- I've done a gazillion posts on the issue, and they can be copy and pasted back into a current post-- and how the chronic pain causes a secondary reaction of depression-- not depression first. (It really explains the chicken and egg thing, at least in this case.) On prayer--- I'm with you, I'll take all I can get. As for , I'm so glad her situation isn't as grave as others. Maybe if the info you get here is effective, she won't have to progress to where many of us are now. That is what this groups about-- making the path less lonely, and smoother for those that come behind us. From my heart, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Wednesday, September 23, 2009 5:12:33 PMSubject: Re: Group Tracie,I am new to this group. I found you all a bit by accident while digging for help and understanding. I am glad that I found you all. Sorry that it had to be because of the Neurosarcoidosis. To answer your questions for what I am looking for: here goes. 1. A group that can offer their support on whatever level that is. I have found it through posts about meds and conditions and help.2. Info that if I need to print it out I can take to a doc. I am the care giver for my wife 3. A group that knows that Neurosarcoidosis and sarcoidosis are real ailments. They arenot in someones mind and it helps to read what others have dealt with. It makes the raod a bit less bumpy for others. 4. I for one will take all of the prayers that you have to offer. I will offer up the same for each and every one of you.5. I am greatful to have "met" you all. Sometimes I feel as if 's situtation is not as grave as others, but then I have come to realize from this group that each situation is vastly different. Hope this helps. I will continue to ask and offer my thoughts. if I ask something that has already been discussed until it is a dead issue then point me in the right direction and I will find the info. Thanks for being there for all who suffer with this rotten illness.matt From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: GroupTo: neurosarcoidosis@ yahoogroups. com, nsmods (AT) yahoogroups (DOT) comDate: Wednesday, September 23, 2009, 7:31 PM Ok guys, here we grow again! I posted earlier today that I'm feeling like maybe if I post I come on too strong. I am not trying to do a guilt trip here. Not at all. What I'm asking of all of you is this: What do you want from us in the way of support? Do you want medical information and explanation for what your'e going through? Do you want articles that you can take to the MD's? Do you feel like if you aren't part of the "prayer group" that you won't be answered? Are you afraid to ask a question for fear that you may be put on the spot or called on the carpet because of what you asked? (This is what I'm trying not to do, but know that right now, I'm not always on top of my game-- so I make mistakes) How do you feel about the fact that most of the people posting seem to be strongly faith oriented, and quote Scripture, etc? Is this part of the problem again? Do you think that if someone's name is on the subject line-- that you aren't supposed to read that email? What have we lost (long timers this is for you) that we had in the early days that we don't have now? I don't want anyone to feel that they have to leave the group because I'm having a hard time and am feeling my OWN insecurity. We all have to understand that when the sarc monster jumps us, that these personality issues will come up. It's a rare occasion that I'd call anyone on the carpet unless I feel that what they are doing is something that all of us need to become more aware of-- and that the actions can injure others. Like shoping excursions with active infections going on, lying about our relationships to make others take our side-- yep, I'll say something publicly. My hope for this group is that htis forum will welcome everyone who needs to be here. Religion, faith, dogma, political party-- as long as it doesn't disrupt the group-- we will not censor it. We aren't a forum for politics-- we are worldwide! We have allowed alot more lenency towards faith posts-- and some of of you think that if you're asked to not put Bible scripture that your "rights" are being imposed upon. For others, again it's an insult that if they don't want to publically announce their faith-- that they aaren't good enough in their practice of faith. Both sides feel the other is wrong is asking for what they are comfortable with. It always makes for a challenge for the moderators and owners as we have to remain as neutral as possible. Not an easy task. Please I ask that you take a moment-- and tell us what it is that you want. I'd love to see answers other than yes and know to the questions I've posed. That way we can keep this group growing-- and touch more hearts and minds with a way to make life as livable as possible. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 ((((Jackie)))) 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIVSubject: Re: GroupTo: Neurosarcoidosis Date: Thursday, September 24, 2009, 1:08 AM To All I know what I want. I want a big hug because this group means so much to me. I don't know where I would be with out the laughs and tears and the knowledge that is shared here. That is what I want and expect from this wonderful group. Jackie from Wisconsin Group Ok guys, here we grow again! I posted earlier today that I'm feeling like maybe if I post I come on too strong. I am not trying to do a guilt trip here. Not at all. What I'm asking of all of you is this: What do you want from us in the way of support? Do you want medical information and explanation for what your'e going through? Do you want articles that you can take to the MD's? Do you feel like if you aren't part of the "prayer group" that you won't be answered? Are you afraid to ask a question for fear that you may be put on the spot or called on the carpet because of what you asked? (This is what I'm trying not to do, but know that right now, I'm not always on top of my game-- so I make mistakes) How do you feel about the fact that most of the people posting seem to be strongly faith oriented, and quote Scripture, etc? Is this part of the problem again? Do you think that if someone's name is on the subject line-- that you aren't supposed to read that email? What have we lost (long timers this is for you) that we had in the early days that we don't have now? I don't want anyone to feel that they have to leave the group because I'm having a hard time and am feeling my OWN insecurity. We all have to understand that when the sarc monster jumps us, that these personality issues will come up. It's a rare occasion that I'd call anyone on the carpet unless I feel that what they are doing is something that all of us need to become more aware of-- and that the actions can injure others. Like shoping excursions with active infections going on, lying about our relationships to make others take our side-- yep, I'll say something publicly. My hope for this group is that htis forum will welcome everyone who needs to be here. Religion, faith, dogma, political party-- as long as it doesn't disrupt the group-- we will not censor it. We aren't a forum for politics-- we are worldwide! We have allowed alot more lenency towards faith posts-- and some of of you think that if you're asked to not put Bible scripture that your "rights" are being imposed upon. For others, again it's an insult that if they don't want to publically announce their faith-- that they aaren't good enough in their practice of faith. Both sides feel the other is wrong is asking for what they are comfortable with. It always makes for a challenge for the moderators and owners as we have to remain as neutral as possible. Not an easy task. Please I ask that you take a moment-- and tell us what it is that you want. I'd love to see answers other than yes and know to the questions I've posed. That way we can keep this group growing-- and touch more hearts and minds with a way to make life as livable as possible. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 You got it, Jackie..............(((((((((((((((( HUG))))))))))))))) Lots of hugs, Darlene NS Co-Owner/Moderator Group Ok guys, here we grow again! I posted earlier today that I'm feeling like maybe if I post I come on too strong. I am not trying to do a guilt trip here. Not at all. What I'm asking of all of you is this: What do you want from us in the way of support? Do you want medical information and explanation for what your'e going through? Do you want articles that you can take to the MD's? Do you feel like if you aren't part of the "prayer group" that you won't be answered? Are you afraid to ask a question for fear that you may be put on the spot or called on the carpet because of what you asked? (This is what I'm trying not to do, but know that right now, I'm not always on top of my game-- so I make mistakes) How do you feel about the fact that most of the people posting seem to be strongly faith oriented, and quote Scripture, etc? Is this part of the problem again? Do you think that if someone's name is on the subject line-- that you aren't supposed to read that email? What have we lost (long timers this is for you) that we had in the early days that we don't have now? I don't want anyone to feel that they have to leave the group because I'm having a hard time and am feeling my OWN insecurity. We all have to understand that when the sarc monster jumps us, that these personality issues will come up. It's a rare occasion that I'd call anyone on the carpet unless I feel that what they are doing is something that all of us need to become more aware of-- and that the actions can injure others. Like shoping excursions with active infections going on, lying about our relationships to make others take our side-- yep, I'll say something publicly. My hope for this group is that htis forum will welcome everyone who needs to be here. Religion, faith, dogma, political party-- as long as it doesn't disrupt the group-- we will not censor it. We aren't a forum for politics-- we are worldwide! We have allowed alot more lenency towards faith posts-- and some of of you think that if you're asked to not put Bible scripture that your "rights" are being imposed upon. For others, again it's an insult that if they don't want to publically announce their faith-- that they aaren't good enough in their practice of faith. Both sides feel the other is wrong is asking for what they are comfortable with. It always makes for a challenge for the moderators and owners as we have to remain as neutral as possible. Not an easy task. Please I ask that you take a moment-- and tell us what it is that you want. I'd love to see answers other than yes and know to the questions I've posed. That way we can keep this group growing-- and touch more hearts and minds with a way to make life as livable as possible. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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