Guest guest Posted March 9, 2004 Report Posted March 9, 2004 Tracie, Hang in there and know we love you and sending prayers and hugs to you. Things will work out -- you know that but I know right now it seems impossible.......just be strong and don't give up. Sending lots of love, Darlene > Ok guys, > > I'm not having fun here. I'm not having fun anywhere. I'm ready to kick > the > cat, braid the dogs tail, or something like it. > > I went to a book study tonight---- boring, but hey, I keep telling myself > that at least i'm socializing. Now that's an interesting word-- social (a > lot of > people) and lizing - telling half truths as you see them as whole truths > to a > lot of people. Works for me. > > Anyway, when it was my turn to read out loud-- I found I wasn't able to > follow the text, or keep my place, or understand what I was reading, or > even give a > shit. I just wanted to come home. But I wanted to be there. > > I'm trying really hard these days to get out and do something, before I > turn > into a blimp. (No, not even a goodyear blimp). You see, when I get > bored, I > eat. all the wrong stuff. So, if I leave the house, I'm less likely to > eat > all night. > > To top everything else off, is laid off from his job - we hope > temporarily. I'm feeling really insecure about everything-- and I want to > eat. So-- > it's boredom, and insecurity that make me eat. > > Oh, and I still need to find enough info to send to the MD's to review so > that they can decide if I can get Remicade treatments. So, I'm bored, > insecure, > angry and frustrated, and I want to eat. More reasons not to take care of > myself. This is not a good program. Time to change the channel. > > So, Tracie -- how do you really feel about all this. I'm scared. I don't > know whats gonna happen next - about our financial security, with my > health, > with my insurance-- btw, I now have medicare and it pays only for 12 > chiropractic > appts a year, and I need it every week-- there's along way between 12 and > 52. > Let's see, $40 a week x 40 weeks, -- > > Heres the other side of the ugly picture. Withot the DC, I know I'll be > on > painmeds. Soon. Very soon. I feel like I've dangled the carrot in front > of > this donkey long enough, and without the care that keeps me off the pm. > then > what other choices do I have. > > enough of a vent from me, so I quit here tonight. > > tracie > Quote
Guest guest Posted March 9, 2004 Report Posted March 9, 2004 Hey Tracie - Hang in there. I have been there when you can't read or concentrate and get lost in what you are trying to do. It is very humiliating and embarrasing especially if it's in front of others. My Dad does taxes on the side and since it's tax season, he asked me to come over an hour or two a few days a week to help him do the simple ones. (It's all computerized). He was gonna pay me and it would get me out of the house too (he only lives 5mins away). Well, I thought it was great. I used to do bookkeeping, payroll, etc. -couldn't be that difficult, right? Well, when I started I did okay with him training me by my side. But then I started doing them by myself and I forgot things, missed things, made stupid little mistakes which made me feel so frustrated. This was easy stuff!!! I felt really bad for my Dad, but he was patient with me. He just double checks what I do now, which doesn't do much for your self respect. I am trying to force myself out in other ways too. Someone suggested water aerobics arthritis classes and also there's a Fibro group that meets once a month. SO I called about the Fibro group, got the info but always find an excuse not to go, in other words, I wimp out! For the water aerobics, I found a gym that does physical therapy, has a pool with those classes and is close. I called got the info and I knew right off it was too expensive, but the woman told me they had these free memberships for people with financial hardships. I filled out MORE forms and sent them in and forgot about it kinda. Then she calls me and says I got a free membership! Even though our income was a little high (which I thought would happen) by explaining my health issues and family circumstances she pushed for it and got me in. Mind you, I haven't gone yet, I have to go there tommorrow and register. But I can see me a 41 yr old. in a line with old ladies in bathing caps doing water aerobics for arthritis!! lol So what I am trying to tell you in this LONG post is to keep on trying. Especially with the Remicade stuff, it took a long time but I finally got approval from my insurance. I know it took me a lot of effort to stay away from the tv and computer and stuff in order to fill out all the SSDI paperwork, Remicade stuff and all the other forms we run across, but keep on pushing yourself. I just wrote in my journal some small goals for the day - 2 or 3 very small goals (like forms, a phone call or two, etc) and tried to do them, if I didn't and felt too lousy - heck I had the next day to do them, right? By the way, most insurances don't view the Remicade treatment for sarcoid as well as they do for Rheumatiod arthritis, so my doctor (kinda thinks I have rheumatoid anyway even though the blood tests were neg.) did the paperwork putting down reason for treatment - Rheumatoid Arthritis . SO hang in there , okay? You are always there for me and I hope I can be there for you when you need to vent. Sorry to be so long, I have nobody to talk to but 3 dogs here this morning!!!! Luv, Debbie T. Ok guys,I'm not having fun here. I'm not having fun anywhere. I'm ready to kick the cat, braid the dogs tail, or something like it. I went to a book study tonight---- boring, but hey, I keep telling myself that at least i'm socializing. Now that's an interesting word-- social (a lot of people) and lizing - telling half truths as you see them as whole truths to a lot of people. Works for me. Anyway, when it was my turn to read out loud-- I found I wasn't able to follow the text, or keep my place, or understand what I was reading, or even give a shit. I just wanted to come home. But I wanted to be there. I'm trying really hard these days to get out and do something, before I turn into a blimp. (No, not even a goodyear blimp). You see, when I get bored, I eat. all the wrong stuff. So, if I leave the house, I'm less likely to eat all night. To top everything else off, is laid off from his job - we hope temporarily. I'm feeling really insecure about everything-- and I want to eat. So-- it's boredom, and insecurity that make me eat. Oh, and I still need to find enough info to send to the MD's to review so that they can decide if I can get Remicade treatments. So, I'm bored, insecure, angry and frustrated, and I want to eat. More reasons not to take care of myself. This is not a good program. Time to change the channel. So, Tracie -- how do you really feel about all this. I'm scared. I don't know whats gonna happen next - about our financial security, with my health, with my insurance-- btw, I now have medicare and it pays only for 12 chiropractic appts a year, and I need it every week-- there's along way between 12 and 52. Let's see, $40 a week x 40 weeks, -- Heres the other side of the ugly picture. Withot the DC, I know I'll be on painmeds. Soon. Very soon. I feel like I've dangled the carrot in front of this donkey long enough, and without the care that keeps me off the pm. then what other choices do I have. enough of a vent from me, so I quit here tonight.tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted March 9, 2004 Report Posted March 9, 2004 Tracie hun I know things seem impossible right now but hang on, grab on to that rope and tie a knot to it things will get better when I don't know. I'm sorry you are going through so much but know I love you and care about you and what you are going thru and if you ever want to talk, vent or whatever just let me know. You are in my prayer and thoughts and hers a big cyber hug all the way from Tennessee , Take good care of you today.. Love and prayers, Happiness is inward and not outward; and it does not depend on what we have, but on what we are................. ~~~~~~Henry Van Dyke Jan Bovitz ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote
Guest guest Posted March 9, 2004 Report Posted March 9, 2004 Tracie - How long have you been seeing your Chiropractor? Do you have a good relationship with him/her? Have you considered talking with him/her about your continued need and your changing financial situation? My Chiropractor has charged me $10.00 per visit for many years now, just because I'm an ongoing proposition... I've also typed reports for him and traded him things I had that he wanted (hammocks, at one time, and rope sandals). I've found a lot of folks willing to work with me/us on finanical stuff. We even found two separate mechanics to work on our cars and let me pay them $50.00 per paycheck (every other week). Explore these options before you give up!! I know how important Chiropractic is!!! I'm sending you hugs and thoughts for positive solutions and trust in the Universe to provide what you need! Lots of Love, Jeri Quote
Guest guest Posted March 9, 2004 Report Posted March 9, 2004 Tracie, I'm sorry you are going through such a rough time. You and everyone else have been so supportive of me; I wish I could do more for all of you. The chiropractic thing just stinks. Is there an appeal process that maybe your husband could initiate for you? Sometimes with insurance companies, you just have to work your way up the hierarchy; we've had clients who were told their insurance didn't cover nurse-midwives, but kept at it until someone was willing to look at the documentation of our training, outcomes, etc. and approve the coverage. If weekly chiropractic visits prevent ER trips, drug addiction treatment, etc., they would save the insurance company money. I know that you can't do this, but maybe while your husband is laid off, he could make some phone calls. Meanwhile, get that blanket (the one with hugs from all over the world) and wrap it around you. Love, Rose Tracie update Ok guys,I'm not having fun here. I'm not having fun anywhere. I'm ready to kick the cat, braid the dogs tail, or something like it. I went to a book study tonight---- boring, but hey, I keep telling myself that at least i'm socializing. Now that's an interesting word-- social (a lot of people) and lizing - telling half truths as you see them as whole truths to a lot of people. Works for me. Anyway, when it was my turn to read out loud-- I found I wasn't able to follow the text, or keep my place, or understand what I was reading, or even give a shit. I just wanted to come home. But I wanted to be there. I'm trying really hard these days to get out and do something, before I turn into a blimp. (No, not even a goodyear blimp). You see, when I get bored, I eat. all the wrong stuff. So, if I leave the house, I'm less likely to eat all night. To top everything else off, is laid off from his job - we hope temporarily. I'm feeling really insecure about everything-- and I want to eat. So-- it's boredom, and insecurity that make me eat. Oh, and I still need to find enough info to send to the MD's to review so that they can decide if I can get Remicade treatments. So, I'm bored, insecure, angry and frustrated, and I want to eat. More reasons not to take care of myself. This is not a good program. Time to change the channel. So, Tracie -- how do you really feel about all this. I'm scared. I don't know whats gonna happen next - about our financial security, with my health, with my insurance-- btw, I now have medicare and it pays only for 12 chiropractic appts a year, and I need it every week-- there's along way between 12 and 52. Let's see, $40 a week x 40 weeks, -- Heres the other side of the ugly picture. Withot the DC, I know I'll be on painmeds. Soon. Very soon. I feel like I've dangled the carrot in front of this donkey long enough, and without the care that keeps me off the pm. then what other choices do I have. enough of a vent from me, so I quit here tonight.tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 3, 2004 Report Posted May 3, 2004 Oh Tracie, this is the best news ever... I know how hard it is to try and make a fist and can't you fingers being so sore, that they wake you up at night, just being sore... This is remarkable after 2 infusions that that is better.. and yes you are right, every one on this list should learn how to work the search engines.. and there is information out there for us, we are just the begining of learning Neurosarc and its treatments.. Way to go, Tracie.. and may you continually get better and better... Hugs, -- Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 3, 2004 Report Posted May 3, 2004 Oh Tracie, this is the best news ever... I know how hard it is to try and make a fist and can't you fingers being so sore, that they wake you up at night, just being sore... This is remarkable after 2 infusions that that is better.. and yes you are right, every one on this list should learn how to work the search engines.. and there is information out there for us, we are just the begining of learning Neurosarc and its treatments.. Way to go, Tracie.. and may you continually get better and better... Hugs, -- Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 Tracie, This sounds really great. I am so happy for you. What a blessing this is for you. I'm very interested in following your progress as my doctors want me to start Remicade. Mothers don't you just love them. I went to see mine last week and I love her dearly but her comment was" don't you think you are taking too much medicine. Will your face go back to normal if you stop taking the prednisone? You don't really need it do you?" They really do love us in their way. Just keep getting better. You are in my thoughts and prayers. PJ Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 Tracie, This sounds really great. I am so happy for you. What a blessing this is for you. I'm very interested in following your progress as my doctors want me to start Remicade. Mothers don't you just love them. I went to see mine last week and I love her dearly but her comment was" don't you think you are taking too much medicine. Will your face go back to normal if you stop taking the prednisone? You don't really need it do you?" They really do love us in their way. Just keep getting better. You are in my thoughts and prayers. PJ Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 Pat, I get the same line from my mother and others all the time. They have no clue.... DebbiePat White wrote: Tracie, This sounds really great. I am so happy for you. What a blessing this is for you. I'm very interested in following your progress as my doctors want me to start Remicade. Mothers don't you just love them. I went to see mine last week and I love her dearly but her comment was" don't you think you are taking too much medicine. Will your face go back to normal if you stop taking the prednisone? You don't really need it do you?" They really do love us in their way. Just keep getting better. You are in my thoughts and prayers. PJ Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 Pat, I get the same line from my mother and others all the time. They have no clue.... DebbiePat White wrote: Tracie, This sounds really great. I am so happy for you. What a blessing this is for you. I'm very interested in following your progress as my doctors want me to start Remicade. Mothers don't you just love them. I went to see mine last week and I love her dearly but her comment was" don't you think you are taking too much medicine. Will your face go back to normal if you stop taking the prednisone? You don't really need it do you?" They really do love us in their way. Just keep getting better. You are in my thoughts and prayers. PJ Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 I am so happy for you Tracie. I am glad the traveling back and forth is worth it!! Unfortunately , I had to stop my Remicade right before my third infusion because of a low white blood cell count (2.4) . The dr. wants me to hold off on Rem. & MTX for a month until my WBC comes back up before I can continue both treatments . I was very disappointed that I couldn't continue right away. Now I know that it's helping you , it only make me want to continue with it asap. Good luck with the next one. Luv, Debbietiodaat@... wrote: I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 I am so happy for you Tracie. I am glad the traveling back and forth is worth it!! Unfortunately , I had to stop my Remicade right before my third infusion because of a low white blood cell count (2.4) . The dr. wants me to hold off on Rem. & MTX for a month until my WBC comes back up before I can continue both treatments . I was very disappointed that I couldn't continue right away. Now I know that it's helping you , it only make me want to continue with it asap. Good luck with the next one. Luv, Debbietiodaat@... wrote: I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 Tracie, that's great! Now let me tell you my news: I might get into the trial also. Indiana University Medical Center in Indianapolis is one of the trial centers. I have a screening appt tomorrow to see if I'm sick enough, but not too sick. If my chest xray & lung function tests fit the criteria, I'm in! Of course, I might not get the Remicade. Here you have a 2 out of 3 chance of getting Remicade, but it's 2 different doses. The other 1/3 get the placebo. I'll let you know what happens tomorrow. Rose, the world's biggest guinea pig Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 4, 2004 Report Posted May 4, 2004 Tracie, that's great! Now let me tell you my news: I might get into the trial also. Indiana University Medical Center in Indianapolis is one of the trial centers. I have a screening appt tomorrow to see if I'm sick enough, but not too sick. If my chest xray & lung function tests fit the criteria, I'm in! Of course, I might not get the Remicade. Here you have a 2 out of 3 chance of getting Remicade, but it's 2 different doses. The other 1/3 get the placebo. I'll let you know what happens tomorrow. Rose, the world's biggest guinea pig Tracie Update I am so excited! I've had two Remicade infusions on a clinical trial so far, 4 more to go-- and already I can make a fist with both hands! This is the first time in more than a year that I can bend all of my fingers into a fist! This trial is where they give the drug to a group of people; some get the drug, some a placebo-- and you aren't told what you're getting-- (mine is obviously the drug) and then they follow up with you over an additional 6 months once the infusions are stopped to see if you stay in remission, or relapse. This trial is only taking 125 people in all of the US and Europe and LA only is taking 5 people total-- I was #4. Needless to say I am really excited that this change is happening so quickly. Please keep me and the others in this trial in your prayers and thoughts-- this is a disease that all of us face with more people telling us "there's not much we can do-- but here's the prednisone. If this doesn't work, there isn't much else we can do but 'try' a couple of other drugs that we know don't help much." The other challenge we all deal with is a medical society and even our families telling us that they think it's "nerves!" (Yep, I called my Mom earlier today to tell her the good news and that's what I got. . ) I ask all of you, please-- type in "neurosarcoidosis or sarcoidosis" in your search engines and educate yourself. We honestly need your support--- not your skeptism. My love to all,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 5, 2004 Report Posted May 5, 2004 Debbie: Seeing as you are the new moderator and I believe everything happens for a reason and that God's hand is in everything, I would like to do something for this an maybe other groups (does not necessarily have to be one that Jeanna is in) and it appears my next job situation will indeed give me some access to heavy hitters and at the least to lend some financial support to the group. Do you have set-up for the group a benevolence fund for those that are in the worst economic shape or could you set one up and I would gladly contribute and lobby those that I have contacts with to build upon this fund. Since I am a tax accountant and presume that if this group does not have things like this set up, we could go with a 501©(3) entity that is tax-exempt and I can be a pest and I know some very good hearted people that I believe will contribute. I know that there would be some formalities to get through, such as a board of directors, but I think we can find an CPA/Attorney that I used to work with it that is something you want to pursue. It seems to me that the biggest burden for many in your group if financial pressures and waiting for social security and this can be a two pronged effort. Number one is getting financial help to those that are desperate. Let me know what you think. Jeff Flowers (Jeanna's lesser half) 2910 Raintree Plano, TX jdf0511@... jlfintx60@... --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.677 / Virus Database: 439 - Release Date: 05/04/2004 Quote
Guest guest Posted May 6, 2004 Report Posted May 6, 2004 What a great idea, Jeff - I think the MS Society has something like that. Love, Jeri Quote
Guest guest Posted May 16, 2004 Report Posted May 16, 2004 Tracie, do you have to pay your own expenses, plane fare, etc., or does the study cover that? I know that if I had been accepted in Indy, they would have paid for a hotel room the night after treatment. I thought that I'd just go to 's instead, but then I thought how nice to have a hotel room all to myself! But, I wasn't accepted, so doesn't matter. I'm glad you can see some tangible results from the Remicade. Rose Tracie update The Remicade has made it so that I can make fists with both hands, something that I haven't been able to do for a couple of years, and now my thumbs bend! They were actually "frozen" in place by the sarcoidosis. This is good. I go back down to LA on the 25th of May for another infusion and tests. Will fly back home after spending the 26th with the MD's. Then I get a 6 week hiatus until I go back down there. Both my blood pressure and blood sugars are whacked out right now, so we're trying to get those issues under control. They are side effects of all the meds I'm on, so I am trying my best to watch what I eat, and do a little "destressing" each day. LOL! So that's all about me,know you are all loved,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 16, 2004 Report Posted May 16, 2004 Tracie, do you have to pay your own expenses, plane fare, etc., or does the study cover that? I know that if I had been accepted in Indy, they would have paid for a hotel room the night after treatment. I thought that I'd just go to 's instead, but then I thought how nice to have a hotel room all to myself! But, I wasn't accepted, so doesn't matter. I'm glad you can see some tangible results from the Remicade. Rose Tracie update The Remicade has made it so that I can make fists with both hands, something that I haven't been able to do for a couple of years, and now my thumbs bend! They were actually "frozen" in place by the sarcoidosis. This is good. I go back down to LA on the 25th of May for another infusion and tests. Will fly back home after spending the 26th with the MD's. Then I get a 6 week hiatus until I go back down there. Both my blood pressure and blood sugars are whacked out right now, so we're trying to get those issues under control. They are side effects of all the meds I'm on, so I am trying my best to watch what I eat, and do a little "destressing" each day. LOL! So that's all about me,know you are all loved,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 17, 2004 Report Posted May 17, 2004 Good for you Tracie . I know it took a lot to get you on the Remicade trial and now its working for you!!! I hope it continues to make you feel better. Its about time, huh???!! LOL Luv, Debbietiodaat@... wrote: The Remicade has made it so that I can make fists with both hands, something that I haven't been able to do for a couple of years, and now my thumbs bend! They were actually "frozen" in place by the sarcoidosis. This is good. I go back down to LA on the 25th of May for another infusion and tests. Will fly back home after spending the 26th with the MD's. Then I get a 6 week hiatus until I go back down there. Both my blood pressure and blood sugars are whacked out right now, so we're trying to get those issues under control. They are side effects of all the meds I'm on, so I am trying my best to watch what I eat, and do a little "destressing" each day. LOL! So that's all about me,know you are all loved,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted May 17, 2004 Report Posted May 17, 2004 Good for you Tracie . I know it took a lot to get you on the Remicade trial and now its working for you!!! I hope it continues to make you feel better. Its about time, huh???!! LOL Luv, Debbietiodaat@... wrote: The Remicade has made it so that I can make fists with both hands, something that I haven't been able to do for a couple of years, and now my thumbs bend! They were actually "frozen" in place by the sarcoidosis. This is good. I go back down to LA on the 25th of May for another infusion and tests. Will fly back home after spending the 26th with the MD's. Then I get a 6 week hiatus until I go back down there. Both my blood pressure and blood sugars are whacked out right now, so we're trying to get those issues under control. They are side effects of all the meds I'm on, so I am trying my best to watch what I eat, and do a little "destressing" each day. LOL! So that's all about me,know you are all loved,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote
Guest guest Posted July 29, 2004 Report Posted July 29, 2004 I wanted to welcome all the "newbies"-- you have found a very loving, very supportive, very knowledgable group to help you with your adventure in sarcoidosis. If you have questions--ask them. If you have problems with family, work, friends not understanding the battle of life with chronic illness--let us know. This is a huge issue for all of us. If you just need someone to tell you you're not alone-- let us know. We will do our best. For those of you who are new-- I'm Tracie. Another of a wonderful group of "Co-owners/Moderators" to help you out. Like you, I too have sarcoidosis. It is in my lungs, eyes, muscles, ligaments, bloodstream, and brain. Right now, I am participating in a "Clinical Trial" for Remicade for pulmonary sarcoidosis. I am making trips to and from Los Angeles- Univ of Southern California- each 6 weeks. The Remicade is helping with the joint pain, and lasts about 3 weeks before the pain comes back. Because this is a "trial" my MD isn't able to "tweek" the dosage or the intervals of my infusions. This trial is part of one so that the FDA will approve Remicade for pulm and ocular sarcoidosis. I get 2 more infusions, then continue to go back down there each 6 weeks to be able to document what happens when the drug is taken away. (420,000 people are on Remicade for Rheumatoid Arthritis, and they know that when they stop the drug--you relapse.) But what the hell would the FDA do to justify their jobs if they eliminated these drawn out trials. . . Life has gotten a bit more interesting since I started this "trial." The last 3 infusions have been followed by a "booger" of a sinus infection (excuse the pun) followed by massive amounts of antibiotics, and then followed by a systemic rash. (Zyrtec and Pepcid help the burning.) Initially, we thought this was a reaction to a blood pressure medication-- but it seems more rash than hives this time. I wanted to apologize for not being available-- but honestly, this stuff has me super-wiped out. By the time I recover-- it's time to fly back to LA again. (I live in Magalia California.) Anyhow, know that I am reading your emails--all of them-- but just don't have the energy to answer right now. So, , Darlene, Rose and Debbie are picking up the slack. I know that all of you are in very competent hands. NOW-- TOO ALL OF YOU WHO HAVE HAD BIRTHDAYS LATELY, OR WILL HAVE A BIRTHDAY SOON-- YOU KNOW WHO YOU ARE-- HAPPY BIRTHDAY!!! MAY YOUR SPECIAL PEOPLE IN YOUR LIFE TREAT YOU TO A FAVORITE WHATEVER!!! Truly, to my co-mods, and to all of you-- give yourself a hug. It comes from the Universe with compassion and understanding for what you are going thru. Tracie Quote
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.