Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Tracie, Thanks looks like a great site, I will look at it more later. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Friday, May 19, 2006 2:10 AM To: neurosarcoidosis Subject: Tracie update Hello to everyone. I've still on hiatus--I'm in a regrouping, reframing, reclaiming time in my life. This last year has been one of tremendous loss of close friends due to illness. It's been hard to have to say goodbye to several that barely saw their 45 birthdays--and some that saw their 80th. I know that we've had quite an influx of new members, welcome to our family. You'll find a wealth of information and friendship from people who are on the same journey that you're starting. This disease is one of elimination. When they've eliminated that we don't have MS, Lupus, RA, and all the other auto-immune diseases--they may decide to say it's NS. In our LINKS and ARCHIVES we have set up sites and articles that you can print out and take to the MD with you. Sit down, block the door, and have a talk with your MD. The tests he needs to order, the scans, neuropsych testing-- is all there. If you have confirmed biopsy proven sarcoidosis-- then the arthritis you have is more than likely induced by your sarcoidosis. The nerve pain is more than likely sarcoidosis inflammation, either of the bloodcells themself, or by the inflammation of the nerves and blood vessels (vasculitis.) I am lucky enough to have a Support group that I can go to for chronic pain. It is a charter group of the American Chronic Pain Association. The site address is: http://www.theacpa.org/ I was in Chico yesterday, and the founder, Penny Cowan gave a short seminar on chronic pain. It was wonderful and refreshing to hear of how the organization advocates self education and different ways to help control chronic pain that doesn't involve pain medication. Please check out the site-- I know you'll all get a tremendous amount out of it. I'll write more about what I came home with-- as soon as I am able to devote some more time. For now, know that all of you are important--and that we all need each other to find our way thru the maze. Blessings, Tracie NS Co-owner/moderator ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Tracie, It is always hard to say goodbye to love ones, and especially hard if they are young. Please check into reading a book called 90 MINUTES IN HEAVEN by Ron Piper. It has given me much comfort after losing my husband three years ago to cancer. I hope you can read it and enjoy it. Ruth > > Hello to everyone. > > I've still on hiatus--I'm in a regrouping, reframing, reclaiming time in my > life. This last year has been one of tremendous loss of close friends due to > illness. It's been hard to have to say goodbye to several that barely saw > their 45 birthdays--and some that saw their 80th. > > I know that we've had quite an influx of new members, welcome to our family. > You'll find a wealth of information and friendship from people who are on the > same journey that you're starting. > > This disease is one of elimination. When they've eliminated that we don't > have MS, Lupus, RA, and all the other auto-immune diseases--they may decide to > say it's NS. > > In our LINKS and ARCHIVES we have set up sites and articles that you can > print out and take to the MD with you. Sit down, block the door, and have a talk > with your MD. The tests he needs to order, the scans, neuropsych testing-- is > all there. If you have confirmed biopsy proven sarcoidosis-- then the > arthritis you have is more than likely induced by your sarcoidosis. The nerve pain > is more than likely sarcoidosis inflammation, either of the bloodcells > themself, or by the inflammation of the nerves and blood vessels (vasculitis.) > > I am lucky enough to have a Support group that I can go to for chronic pain. > It is a charter group of the American Chronic Pain Association. The site > address is: > > http://www.theacpa.org/ > > I was in Chico yesterday, and the founder, Penny Cowan gave a short seminar > on chronic pain. It was wonderful and refreshing to hear of how the > organization advocates self education and different ways to help control chronic pain > that doesn't involve pain medication. Please check out the site-- I know you'll > all get a tremendous amount out of it. > > I'll write more about what I came home with-- as soon as I am able to devote > some more time. For now, know that all of you are important--and that we all > need each other to find our way thru the maze. > > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Tracie, It is always hard to say goodbye to love ones, and especially hard if they are young. Please check into reading a book called 90 MINUTES IN HEAVEN by Ron Piper. It has given me much comfort after losing my husband three years ago to cancer. I hope you can read it and enjoy it. Ruth > > Hello to everyone. > > I've still on hiatus--I'm in a regrouping, reframing, reclaiming time in my > life. This last year has been one of tremendous loss of close friends due to > illness. It's been hard to have to say goodbye to several that barely saw > their 45 birthdays--and some that saw their 80th. > > I know that we've had quite an influx of new members, welcome to our family. > You'll find a wealth of information and friendship from people who are on the > same journey that you're starting. > > This disease is one of elimination. When they've eliminated that we don't > have MS, Lupus, RA, and all the other auto-immune diseases--they may decide to > say it's NS. > > In our LINKS and ARCHIVES we have set up sites and articles that you can > print out and take to the MD with you. Sit down, block the door, and have a talk > with your MD. The tests he needs to order, the scans, neuropsych testing-- is > all there. If you have confirmed biopsy proven sarcoidosis-- then the > arthritis you have is more than likely induced by your sarcoidosis. The nerve pain > is more than likely sarcoidosis inflammation, either of the bloodcells > themself, or by the inflammation of the nerves and blood vessels (vasculitis.) > > I am lucky enough to have a Support group that I can go to for chronic pain. > It is a charter group of the American Chronic Pain Association. The site > address is: > > http://www.theacpa.org/ > > I was in Chico yesterday, and the founder, Penny Cowan gave a short seminar > on chronic pain. It was wonderful and refreshing to hear of how the > organization advocates self education and different ways to help control chronic pain > that doesn't involve pain medication. Please check out the site-- I know you'll > all get a tremendous amount out of it. > > I'll write more about what I came home with-- as soon as I am able to devote > some more time. For now, know that all of you are important--and that we all > need each other to find our way thru the maze. > > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Tracie, It is always hard to say goodbye to love ones, and especially hard if they are young. Please check into reading a book called 90 MINUTES IN HEAVEN by Ron Piper. It has given me much comfort after losing my husband three years ago to cancer. I hope you can read it and enjoy it. Ruth > > Hello to everyone. > > I've still on hiatus--I'm in a regrouping, reframing, reclaiming time in my > life. This last year has been one of tremendous loss of close friends due to > illness. It's been hard to have to say goodbye to several that barely saw > their 45 birthdays--and some that saw their 80th. > > I know that we've had quite an influx of new members, welcome to our family. > You'll find a wealth of information and friendship from people who are on the > same journey that you're starting. > > This disease is one of elimination. When they've eliminated that we don't > have MS, Lupus, RA, and all the other auto-immune diseases--they may decide to > say it's NS. > > In our LINKS and ARCHIVES we have set up sites and articles that you can > print out and take to the MD with you. Sit down, block the door, and have a talk > with your MD. The tests he needs to order, the scans, neuropsych testing-- is > all there. If you have confirmed biopsy proven sarcoidosis-- then the > arthritis you have is more than likely induced by your sarcoidosis. The nerve pain > is more than likely sarcoidosis inflammation, either of the bloodcells > themself, or by the inflammation of the nerves and blood vessels (vasculitis.) > > I am lucky enough to have a Support group that I can go to for chronic pain. > It is a charter group of the American Chronic Pain Association. The site > address is: > > http://www.theacpa.org/ > > I was in Chico yesterday, and the founder, Penny Cowan gave a short seminar > on chronic pain. It was wonderful and refreshing to hear of how the > organization advocates self education and different ways to help control chronic pain > that doesn't involve pain medication. Please check out the site-- I know you'll > all get a tremendous amount out of it. > > I'll write more about what I came home with-- as soon as I am able to devote > some more time. For now, know that all of you are important--and that we all > need each other to find our way thru the maze. > > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Tracie hon, I knew you were sick but I didn't know that things had gotten so bad for you. Please becareful, this is serious business when allergic reactions to medications are administered, I know you know this. I am frustrated, scared, angry Please if there is anything I can do, don't hesitate to call, you know you're not alone, we may not be there physically but you know how to reach many of us, and I very sure that there's not a person on here that wouldn't be there for you if you just let them know. A Big Hug!!! -- Tracie Update .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Tracie, I can tell by how knowledgeable you are about everyhing concerning Sarcoidosis that you probably handle your life and anything that gets in it by first finding out everything you can about it, taking charge and not allowing it to have control. You can cope when you are in charge but when you lose that control you are overwhelmed. It doesn't seem fair, that if you know all you can and you do everything the way it is supposed to be done, that you have to give in to something like this. After all it was your life until this thing popped up. Every once in a while though we must find out that in the end we can only control what we can. The times when we cannot for whatever reason we must just leave it in God's hands. He will guide you through somehow and bring you back out on top. I will pray that there will be no allergic reaction this time and I am going to a place of prayer where the names of all of you who want prayer will be lifted up. You and all of the rest of this family are too important to God for him not to listen. Barb J.tiodaat@... wrote: Ok guys,We all know I'm in a funk. Two weeks ago when I got my Remicade infusion, I ended up with a wallbanger allergic reaction, and for 3 or 4 days, my throat was closing off. Benadryl managed to work this time.My next infusion is set for July 27 and I'm having to make a serious decision. If I get the infusion-- I will have to have all the premeds and the Benadryl. If I have another allergic reaction--then I will have to discontinue the Remicade. I've decided to roll the dice on the 27th, and get the infusion-- with the hope that the other meds will keep me safe. I am frustrated, scared, angry becuase I know that my other choices are no where near as effective as the Remicade has been. I've been on Remicade for almost 2 yrs now, and I would hate to lose the progress I've made. For me, it has been excellant, but the more I take, the higher the dosage, and the more often you require it-- the higher the chance of side effects. It's going to be interesting, will be backpacking that week with a bunch of kids-- so there isn't anyone else that will be home. (Torey has moved out.) I am struggling with this decision, yet I know that I can't put it off for an extra 2 wks until 's back from his vacationing. My emotions are all whacked out-- I do believe it's from the reaction. I haven't been able to get the blood sugars back into control yet--so I'm working on that. This is where I have to go day by day, minute by minute-- and I'm not good at that. Tracie Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Hey Tracie, You know we are all here for you; wish we lived closer so could really “be there” for you. Yes it’s very difficult living day to day, minute to minute, but really we have all been doing this, even you, and you’ve been doing a heck of a good job at it! So hang in there. You’re in my prayers, and especially on the 27th I will be sending positive thoughts to you! Oh and it’s OK to be in a funk. Today I ran into some friends from church with my Mom, and I’ve known these people for like 15 years, taught bible class with her, and I could not for the life of me remember their names, so I just said, “this is my Mom, Marvel” and left it at that, I felt so stupid. She just picked it up with hi I’m Lori and this is my husband Vic. Man I just hate those times, but they happenJ oh well, I know I will be in trouble when I can’t remember my husband’s name? Wishing you the best that life has to offer you right now Tracie! Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Wednesday, July 19, 2006 12:49 AM To: nsmods ; neurosarcoidosis Subject: Tracie Update Ok guys, We all know I'm in a funk. Two weeks ago when I got my Remicade infusion, I ended up with a wallbanger allergic reaction, and for 3 or 4 days, my throat was closing off. Benadryl managed to work this time. My next infusion is set for July 27 and I'm having to make a serious decision. If I get the infusion-- I will have to have all the premeds and the Benadryl. If I have another allergic reaction--then I will have to discontinue the Remicade. I've decided to roll the dice on the 27th, and get the infusion-- with the hope that the other meds will keep me safe. I am frustrated, scared, angry becuase I know that my other choices are no where near as effective as the Remicade has been. I've been on Remicade for almost 2 yrs now, and I would hate to lose the progress I've made. For me, it has been excellant, but the more I take, the higher the dosage, and the more often you require it-- the higher the chance of side effects. It's going to be interesting, will be backpacking that week with a bunch of kids-- so there isn't anyone else that will be home. (Torey has moved out.) I am struggling with this decision, yet I know that I can't put it off for an extra 2 wks until 's back from his vacationing. My emotions are all whacked out-- I do believe it's from the reaction. I haven't been able to get the blood sugars back into control yet--so I'm working on that. This is where I have to go day by day, minute by minute-- and I'm not good at that. Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 As I said before we just had a visit from my niece and her husband. I started to inttroduce her to someone and I sad, "This is my Sister- In- Law" She was so upset. She now thinks that I have Alzheimer's. Barb J. Marla wrote: Hey Tracie, You know we are all here for you; wish we lived closer so could really “be there†for you. Yes it’s very difficult living day to day, minute to minute, but really we have all been doing this, even you, and you’ve been doing a heck of a good job at it! So hang in there. You’re in my prayers, and especially on the 27th I will be sending positive thoughts to you! Oh and it’s OK to be in a funk. Today I ran into some friends from church with my Mom, and I’ve known these people for like 15 years, taught bible class with her, and I could not for the life of me remember their names, so I just said, “this is my Mom, Marvel†and left it at that, I felt so stupid. She just picked it up with hi I’m Lori and this is my husband Vic. Man I just hate those times, but they happenJ oh well, I know I will be in trouble when I can’t remember my husband’s name? Wishing you the best that life has to offer you right now Tracie! Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...Sent: Wednesday, July 19, 2006 12:49 AMTo: nsmods ; neurosarcoidosis Subject: Tracie Update Ok guys,We all know I'm in a funk. Two weeks ago when I got my Remicade infusion, I ended up with a wallbanger allergic reaction, and for 3 or 4 days, my throat was closing off. Benadryl managed to work this time.My next infusion is set for July 27 and I'm having to make a serious decision. If I get the infusion-- I will have to have all the premeds and the Benadryl. If I have another allergic reaction--then I will have to discontinue the Remicade. I've decided to roll the dice on the 27th, and get the infusion-- with the hope that the other meds will keep me safe. I am frustrated, scared, angry becuase I know that my other choices are no where near as effective as the Remicade has been. I've been on Remicade for almost 2 yrs now, and I would hate to lose the progress I've made. For me, it has been excellant, but the more I take, the higher the dosage, and the more often you require it-- the higher the chance of side effects. It's going to be interesting, will be backpacking that week with a bunch of kids-- so there isn't anyone else that will be home. (Torey has moved out.) I am struggling with this decision, yet I know that I can't put it off for an extra 2 wks until 's back from his vacationing. My emotions are all whacked out-- I do believe it's from the reaction. I haven't been able to get the blood sugars back into control yet--so I'm working on that. This is where I have to go day by day, minute by minute-- and I'm not good at that. Tracie Groups are talking. We´re listening. Check out the handy changes to Yahoo! Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 .. Isn't there anyone that can come stay with you while you are doing the infusion or is there someone you can go stay with? Can they keep you overnight? Can they give you an epipen in case you need it? Oral benadryl is a joke when the airway is involved. Can postpone his trip? Tracie, if you had problems with your airway last time you know doing this alone is a big time no. I know you need the Remicade, and I know you feel you need to do it on time, but please don't be alone for any reason, we both know 4 minutes is not a long time, and I believe you know what I mean. I just got a call from the oncologists office. He's got me coming in on Wed instead of Thursday to do the infusion, so that he will be there and can monitor what is going on. I'm also going to have either my son come up and spend the night here, or I'll get a girlfriend from Chico to come up. is taking a group of Venture Scouts (kids 14-18) along with 4 other adults into the Trinity Alps Wilderness--and it's not possible to postpone it. Plus we've already committed our payment, and the food is already bought and dispensed thru the crews. So, he's not here this time. It does sound like he'll be home Friday night instead of Saturday, and won't be leaving again until Monday for the 2nd trip. Depending on how i'm doing- and I should be fine, will decide when and where he'll be week after next. I'm sure that Dr. Freeman will prescribe an Epipen as well as the Benadryl if that's what I need. One day at a time, one day at a time, one day. . . Love to us all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 .. Isn't there anyone that can come stay with you while you are doing the infusion or is there someone you can go stay with? Can they keep you overnight? Can they give you an epipen in case you need it? Oral benadryl is a joke when the airway is involved. Can postpone his trip? Tracie, if you had problems with your airway last time you know doing this alone is a big time no. I know you need the Remicade, and I know you feel you need to do it on time, but please don't be alone for any reason, we both know 4 minutes is not a long time, and I believe you know what I mean. I just got a call from the oncologists office. He's got me coming in on Wed instead of Thursday to do the infusion, so that he will be there and can monitor what is going on. I'm also going to have either my son come up and spend the night here, or I'll get a girlfriend from Chico to come up. is taking a group of Venture Scouts (kids 14-18) along with 4 other adults into the Trinity Alps Wilderness--and it's not possible to postpone it. Plus we've already committed our payment, and the food is already bought and dispensed thru the crews. So, he's not here this time. It does sound like he'll be home Friday night instead of Saturday, and won't be leaving again until Monday for the 2nd trip. Depending on how i'm doing- and I should be fine, will decide when and where he'll be week after next. I'm sure that Dr. Freeman will prescribe an Epipen as well as the Benadryl if that's what I need. One day at a time, one day at a time, one day. . . Love to us all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 .. Isn't there anyone that can come stay with you while you are doing the infusion or is there someone you can go stay with? Can they keep you overnight? Can they give you an epipen in case you need it? Oral benadryl is a joke when the airway is involved. Can postpone his trip? Tracie, if you had problems with your airway last time you know doing this alone is a big time no. I know you need the Remicade, and I know you feel you need to do it on time, but please don't be alone for any reason, we both know 4 minutes is not a long time, and I believe you know what I mean. I just got a call from the oncologists office. He's got me coming in on Wed instead of Thursday to do the infusion, so that he will be there and can monitor what is going on. I'm also going to have either my son come up and spend the night here, or I'll get a girlfriend from Chico to come up. is taking a group of Venture Scouts (kids 14-18) along with 4 other adults into the Trinity Alps Wilderness--and it's not possible to postpone it. Plus we've already committed our payment, and the food is already bought and dispensed thru the crews. So, he's not here this time. It does sound like he'll be home Friday night instead of Saturday, and won't be leaving again until Monday for the 2nd trip. Depending on how i'm doing- and I should be fine, will decide when and where he'll be week after next. I'm sure that Dr. Freeman will prescribe an Epipen as well as the Benadryl if that's what I need. One day at a time, one day at a time, one day. . . Love to us all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Tracie, thanks for replying to this worry wart. i'll also be praying that all goes smoothly this time with no allergic reaction. I like the way you ended your email, my favorite comes from the kids movie "finding nemo"..........just keep swimming, just keep swimming, that what you do you just keep swimming.............Connietiodaat@... wrote: In a message dated 7/21/06 1:05:02 PM Pacific Daylight Time, conaugusta@... writes: . Isn't there anyone that can come stay with you while you are doing the infusion or is there someone you can go stay with? Can they keep you overnight? Can they give you an epipen in case you need it? Oral benadryl is a joke when the airway is involved. Can postpone his trip? Tracie, if you had problems with your airway last time you know doing this alone is a big time no. I know you need the Remicade, and I know you feel you need to do it on time, but please don't be alone for any reason, we both know 4 minutes is not a long time, and I believe you know what I mean. I just got a call from the oncologists office. He's got me coming in on Wed instead of Thursday to do the infusion, so that he will be there and can monitor what is going on. I'm also going to have either my son come up and spend the night here, or I'll get a girlfriend from Chico to come up. is taking a group of Venture Scouts (kids 14-18) along with 4 other adults into the Trinity Alps Wilderness--and it's not possible to postpone it. Plus we've already committed our payment, and the food is already bought and dispensed thru the crews. So, he's not here this time. It does sound like he'll be home Friday night instead of Saturday, and won't be leaving again until Monday for the 2nd trip. Depending on how i'm doing- and I should be fine, will decide when and where he'll be week after next. I'm sure that Dr. Freeman will prescribe an Epipen as well as the Benadryl if that's what I need. One day at a time, one day at a time, one day. . .Love to us all,Tracie See the all-new, redesigned Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Tracie, I will be praying for you daily, but extra prayers tomorrow on Wed. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Saturday, July 22, 2006 11:40 PM To: Neurosarcoidosis Subject: Re: Tracie Update Tracie, thanks for replying to this worry wart. i'll also be praying that all goes smoothly this time with no allergic reaction. I like the way you ended your email, my favorite comes from the kids movie " finding nemo " ..........just keep swimming, just keep swimming, that what you do you just keep swimming.............Connie tiodaat@... wrote: In a message dated 7/21/06 1:05:02 PM Pacific Daylight Time, conaugusta@... writes: .. Isn't there anyone that can come stay with you while you are doing the infusion or is there someone you can go stay with? Can they keep you overnight? Can they give you an epipen in case you need it? Oral benadryl is a joke when the airway is involved. Can postpone his trip? Tracie, if you had problems with your airway last time you know doing this alone is a big time no. I know you need the Remicade, and I know you feel you need to do it on time, but please don't be alone for any reason, we both know 4 minutes is not a long time, and I believe you know what I mean. I just got a call from the oncologists office. He's got me coming in on Wed instead of Thursday to do the infusion, so that he will be there and can monitor what is going on. I'm also going to have either my son come up and spend the night here, or I'll get a girlfriend from Chico to come up. is taking a group of Venture Scouts (kids 14-18) along with 4 other adults into the Trinity Alps Wilderness--and it's not possible to postpone it. Plus we've already committed our payment, and the food is already bought and dispensed thru the crews. So, he's not here this time. It does sound like he'll be home Friday night instead of Saturday, and won't be leaving again until Monday for the 2nd trip. Depending on how i'm doing- and I should be fine, will decide when and where he'll be week after next. I'm sure that Dr. Freeman will prescribe an Epipen as well as the Benadryl if that's what I need. One day at a time, one day at a time, one day. . . Love to us all, Tracie See the all-new, redesigned Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
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