Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Got gaits?!!! Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Kelsey is also mastering that task. She can make it up one of our stairs but there are some wider ones at my Moms that she can navigate already. Jenni Number23 wrote: >Everett is learning to climb the stairs in his DBB today! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 AHHHH! My heart's stopping just thinking about it! Fortunately we don't have any stairs! > LOL! I do now!: ) > s > > Got gaits?!!! > > > > Shook > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 LOL! I do now!: ) s Got gaits?!!! Shook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Congrats Everett! That is great, kinda scary but great! & Grace ) > Everett is learning to climb the stairs in his DBB today! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 19, 2006 Report Share Posted May 19, 2006 Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. ConnieMarla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Friday, May 19, 2006 8:05 AMTo: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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 Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. ConnieMarla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Friday, May 19, 2006 8:05 AMTo: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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 Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 1:04 PM To: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. Connie Marla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 20, 2006 Report Share Posted May 20, 2006 Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 1:04 PM To: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. Connie Marla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 20, 2006 Report Share Posted May 20, 2006 Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 1:04 PM To: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. Connie Marla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 22, 2006 Report Share Posted May 22, 2006 Marla, Thank you so much. I will go & print out the information, I have an appt with my neurologist this Thursday for the results of everything. I hope maybe he can help me figure some things out, incuding how to calm down some of the symptoms I'm having (the pain is getting on my nerves). If the sarc has gone neuro on me like I believe it has, I hope he will take over as the main physician looking after the sarc. He seems to be more knowledgeable about it and has worked in the past with a leading neurologist specializing in sarc. Keep me in your prayers, as I will you all//Connie PS Thanks for taking some of my guilt, I feel ashamed when I gripe Marla Bramer wrote: Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Friday, May 19, 2006 1:04 PMTo: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. ConnieMarla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Friday, May 19, 2006 8:05 AMTo: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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 Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Connie, good luck with your Dr.s appt. I will keep you in my prayers. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Monday, May 22, 2006 8:39 AM To: Neurosarcoidosis Subject: RE: uh-oh Marla, Thank you so much. I will go & print out the information, I have an appt with my neurologist this Thursday for the results of everything. I hope maybe he can help me figure some things out, incuding how to calm down some of the symptoms I'm having (the pain is getting on my nerves). If the sarc has gone neuro on me like I believe it has, I hope he will take over as the main physician looking after the sarc. He seems to be more knowledgeable about it and has worked in the past with a leading neurologist specializing in sarc. Keep me in your prayers, as I will you all//Connie PS Thanks for taking some of my guilt, I feel ashamed when I gripe Marla Bramer wrote: Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 1:04 PM To: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. Connie Marla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 22, 2006 Report Share Posted May 22, 2006 Connie, good luck with your Dr.s appt. I will keep you in my prayers. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Monday, May 22, 2006 8:39 AM To: Neurosarcoidosis Subject: RE: uh-oh Marla, Thank you so much. I will go & print out the information, I have an appt with my neurologist this Thursday for the results of everything. I hope maybe he can help me figure some things out, incuding how to calm down some of the symptoms I'm having (the pain is getting on my nerves). If the sarc has gone neuro on me like I believe it has, I hope he will take over as the main physician looking after the sarc. He seems to be more knowledgeable about it and has worked in the past with a leading neurologist specializing in sarc. Keep me in your prayers, as I will you all//Connie PS Thanks for taking some of my guilt, I feel ashamed when I gripe Marla Bramer wrote: Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 1:04 PM To: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. Connie Marla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 22, 2006 Report Share Posted May 22, 2006 Connie, good luck with your Dr.s appt. I will keep you in my prayers. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Monday, May 22, 2006 8:39 AM To: Neurosarcoidosis Subject: RE: uh-oh Marla, Thank you so much. I will go & print out the information, I have an appt with my neurologist this Thursday for the results of everything. I hope maybe he can help me figure some things out, incuding how to calm down some of the symptoms I'm having (the pain is getting on my nerves). If the sarc has gone neuro on me like I believe it has, I hope he will take over as the main physician looking after the sarc. He seems to be more knowledgeable about it and has worked in the past with a leading neurologist specializing in sarc. Keep me in your prayers, as I will you all//Connie PS Thanks for taking some of my guilt, I feel ashamed when I gripe Marla Bramer wrote: Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 1:04 PM To: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. Connie Marla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about. Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Friday, May 19, 2006 8:05 AM To: neurosarcoidosis Subject: uh-oh Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 23, 2006 Report Share Posted May 23, 2006 Connie, of course we don't recognize tapering Pred by yourself, but since you've gone this far, you might try going up by just a couple of milligrams to see if that relieves the pain without a return of the swelling. If you have tablets that can be split, use a pill splitter for more accuracy; they are only a couple of bucks. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: uh-ohDate: Fri, 19 May 2006 07:04:37 -0700 (PDT) Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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 Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Connie, of course we don't recognize tapering Pred by yourself, but since you've gone this far, you might try going up by just a couple of milligrams to see if that relieves the pain without a return of the swelling. If you have tablets that can be split, use a pill splitter for more accuracy; they are only a couple of bucks. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: uh-ohDate: Fri, 19 May 2006 07:04:37 -0700 (PDT) Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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 Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Connie, of course we don't recognize tapering Pred by yourself, but since you've gone this far, you might try going up by just a couple of milligrams to see if that relieves the pain without a return of the swelling. If you have tablets that can be split, use a pill splitter for more accuracy; they are only a couple of bucks. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: uh-ohDate: Fri, 19 May 2006 07:04:37 -0700 (PDT) Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message 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 Link to comment Share on other sites More sharing options...
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.