Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Mosaicgirl: I know the feeling of doing too much and paying for it. I am trying to recover from this now, its nto working. we need a "super duper over did it recovery pill". hmmm do they make one of those? just something you can take for a couple days to get over the times when you have had to, due to life circumstances really push yourself and then landed in a horrid flare? whats it called? I am making light so I don't cry, because I have several more weeks scattered through the summer of such times requiring "overdoing it" and am not sure how I am going to make it through them all. But seriously, I hope that you get some rest soon and can recover. Please share the link to the article you are referring to , I am sure we would all like to read it. Good luck at your appt at Hopkins. When did you say it was again? Keep us updated please. Take care, Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Kim, I was already seen at 's Hopkins but I am going to call Dr. regarding Rose's suggestion of the NS doc at University of land - it is right there at Hopkins. I don't cry that often but this is such a relief to have someone understand. In an attempt to get to the diagnosis I have started keep a diary of sorts to show my idiot docs in Va what is going on. I have had terrible flares where I cannot even wake up at all. My husband will come and try to get me up and I tell him I cannot wake up yet. I also have had a couple of episodes where I cannot talk at all. It was getting to that point last night and that was why I actually could be mad enough to cry. When I Googled NS I got an article of emedicine.com. It is written by Dr. Bucurescu at the Philadelphia Veterans Center. It is very informative and I have printed and am taking it back with me to VA. It also lists the meds that are used with all the contraindications, etc. Well, my sister just got up, so I need to go help her. TerriNeuroSarcoid66@... wrote: Mosaicgirl: I know the feeling of doing too much and paying for it. I am trying to recover from this now, its nto working. we need a "super duper over did it recovery pill". hmmm do they make one of those? just something you can take for a couple days to get over the times when you have had to, due to life circumstances really push yourself and then landed in a horrid flare? whats it called? I am making light so I don't cry, because I have several more weeks scattered through the summer of such times requiring "overdoing it" and am not sure how I am going to make it through them all. But seriously, I hope that you get some rest soon and can recover. Please share the link to the article you are referring to , I am sure we would all like to read it. Good luck at your appt at Hopkins. When did you say it was again? Keep us updated please. Take care, Kim NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~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 June 9, 2005 Report Share Posted June 9, 2005 Hi there Terri, This is Lynne, and I was wondering if you are near VA. beach? That is where my son and I are going next week, for his competition. It would be nice to meet another one of us from the support group. Lots of Love LynneTerri e wrote: Kim, I was already seen at 's Hopkins but I am going to call Dr. regarding Rose's suggestion of the NS doc at University of land - it is right there at Hopkins. I don't cry that often but this is such a relief to have someone understand. In an attempt to get to the diagnosis I have started keep a diary of sorts to show my idiot docs in Va what is going on. I have had terrible flares where I cannot even wake up at all. My husband will come and try to get me up and I tell him I cannot wake up yet. I also have had a couple of episodes where I cannot talk at all. It was getting to that point last night and that was why I actually could be mad enough to cry. When I Googled NS I got an article of emedicine.com. It is written by Dr. Bucurescu at the Philadelphia Veterans Center. It is very informative and I have printed and am taking it back with me to VA. It also lists the meds that are used with all the contraindications, etc. Well, my sister just got up, so I need to go help her. TerriNeuroSarcoid66@... wrote: Mosaicgirl: I know the feeling of doing too much and paying for it. I am trying to recover from this now, its nto working. we need a "super duper over did it recovery pill". hmmm do they make one of those? just something you can take for a couple days to get over the times when you have had to, due to life circumstances really push yourself and then landed in a horrid flare? whats it called? I am making light so I don't cry, because I have several more weeks scattered through the summer of such times requiring "overdoing it" and am not sure how I am going to make it through them all. But seriously, I hope that you get some rest soon and can recover. Please share the link to the article you are referring to , I am sure we would all like to read it. Good luck at your appt at Hopkins. When did you say it was again? Keep us updated please. Take care, Kim NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~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 June 9, 2005 Report Share Posted June 9, 2005 I'm glad to know these flares are real and not my imagination. If I over do I pay. Does anyone have warning signs of how much is too much before they actually get to too much? I'm trying to manage my life and honor the committments I make, which gets really hard when I'm sleeping or can't get out of bed. -- as I'm sure you all know and understand. Amy Terri e wrote: > Kim, > > I was already seen at 's Hopkins but I am going to call Dr. > regarding Rose's suggestion of the NS doc at University of > land - it is right there at Hopkins. > > I don't cry that often but this is such a relief to have someone > understand. In an attempt to get to the diagnosis I have started keep > a diary of sorts to show my idiot docs in Va what is going on. > > I have had terrible flares where I cannot even wake up at all. My > husband will come and try to get me up and I tell him I cannot wake up > yet. I also have had a couple of episodes where I cannot talk at > all. It was getting to that point last night and that was why I > actually could be mad enough to cry. > > When I Googled NS I got an article of emedicine.com. It is written by > Dr. Bucurescu at the Philadelphia Veterans Center. It is very > informative and I have printed and am taking it back with me to VA. > It also lists the meds that are used with all the contraindications, > etc. > > Well, my sister just got up, so I need to go help her. > > Terri > > */NeuroSarcoid66@.../* wrote: > > Mosaicgirl: > > I know the feeling of doing too much and paying for it. I am > trying to recover from this now, its nto working. we need a > " super duper over did it recovery pill " . hmmm do they make one > of those? just something you can take for a couple days to get > over the times when you have had to, due to life circumstances > really push yourself and then landed in a horrid flare? whats it > called? > > I am making light so I don't cry, because I have several more > weeks scattered through the summer of such times requiring > " overdoing it " and am not sure how I am going to make it through > them all. But seriously, I hope that you get some rest soon and > can recover. > > Please share the link to the article you are referring to , I am > sure we would all like to read it. Good luck at your appt at > Hopkins. When did you say it was again? Keep us updated please. > > Take care, > Kim > NS 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 June 9, 2005 Report Share Posted June 9, 2005 Amy I am unfortunately at a stage where I am very limited physically and almost totally bedridden actually and if I want to be totally honest. I already know what is going to be too much for me before I plan anything out. I choose what I am willing to "pay for" in advance. To be honest I don't remember a time when things were not like this for me. Maybe I didn't admit it before, but I always knew if I chose to do particular things that I was going to have to "pay for" it later with extra "down time" or "extra suffering". It has always been a trade off. Now the trade off is just much worse and the amount that I am actually able to do or get away with is much much less than before. Though sometimes adrenalin kicks in and carries me through special events etc. and I end up surprising myself, but the price for those times is always extra heavy. I would say to listen to this MS advice of scheduling yourself. 20 minutes on and 20 minutes off. It wouldnt work for me, but the basic concept is right. Limiting what the amount of time you are physically activity is what they are getting at I think. Giving your self plenty of down time. For me, I can get maybe one day a week with a couple errands in and that will not over load me. If I have more than that in a given week, or even that plus a bunch of things that need checked off the list in the house, paper work and errands that require planning and thinking through and phone calls etc. It is too much. I have great difficulty with this, it exhausts me, confuses me, pushes me over the edge into oblivion. Serioiusly. More than a week of things to do and you have caused a major flare. There is no spacing things for me any longer. I can not find a new set of limitations that will work anymore, try as I might. This is the first time I have actually admitted that. Even my posts, I do from laying in bed. Was that a breakthrough? Take care, I have to sleep now, Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Amy, I wish that I could say I can tell when I have done too much. My first indicator is that I stutter but sometimes even that is too late. So I either do nothing at all or I do way too much. When it was thought that I had multiple sclerosis one of the energy conservation tips was to do 20 min of work then 20 minutes of rest. I don't know about you but sometimes I forget to rest until it is too late. So I do try to do that and it can help. TerriAmy Cashen wrote: I'm glad to know these flares are real and not my imagination. If I over do I pay. Does anyone have warning signs of how much is too much before they actually get to too much? I'm trying to manage my life and honor the committments I make, which gets really hard when I'm sleeping or can't get out of bed. -- as I'm sure you all know and understand.AmyTerri e wrote:> Kim,> > I was already seen at 's Hopkins but I am going to call Dr. > regarding Rose's suggestion of the NS doc at University of > land - it is right there at Hopkins.> > I don't cry that often but this is such a relief to have someone > understand. In an attempt to get to the diagnosis I have started keep > a diary of sorts to show my idiot docs in Va what is going on.> > I have had terrible flares where I cannot even wake up at all. My > husband will come and try to get me up and I tell him I cannot wake up > yet. I also have had a couple of episodes where I cannot talk at > all. It was getting to that point last night and that was why I > actually could be mad enough to cry. > > When I Googled NS I got an article of emedicine.com. It is written by > Dr. Bucurescu at the Philadelphia Veterans Center. It is very > informative and I have printed and am taking it back with me to VA. > It also lists the meds that are used with all the contraindications, > etc. > > Well, my sister just got up, so I need to go help her.> > Terri>> */NeuroSarcoid66@.../* wrote:>> Mosaicgirl:> > I know the feeling of doing too much and paying for it. I am> trying to recover from this now, its nto working. we need a> "super duper over did it recovery pill". hmmm do they make one> of those? just something you can take for a couple days to get> over the times when you have had to, due to life circumstances> really push yourself and then landed in a horrid flare? whats it> called?> > I am making light so I don't cry, because I have several more> weeks scattered through the summer of such times requiring> "overdoing it" and am not sure how I am going to make it through> them all. But seriously, I hope that you get some rest soon and> can recover.> > Please share the link to the article you are referring to , I am> sure we would all like to read it. Good luck at your appt at > Hopkins. When did you say it was again? Keep us updated please.> > Take care,> Kim> NS 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 June 9, 2005 Report Share Posted June 9, 2005 Lynne, I live about 1/2 hour from Virginia Beach but I am in Houstong until the 20th at my sister's. Will you be coming back anytime soon? What type of competition. Let me know. Terrilynne zacharias wrote: Hi there Terri, This is Lynne, and I was wondering if you are near VA. beach? That is where my son and I are going next week, for his competition. It would be nice to meet another one of us from the support group. Lots of Love LynneTerri e wrote: Kim, I was already seen at 's Hopkins but I am going to call Dr. regarding Rose's suggestion of the NS doc at University of land - it is right there at Hopkins. I don't cry that often but this is such a relief to have someone understand. In an attempt to get to the diagnosis I have started keep a diary of sorts to show my idiot docs in Va what is going on. I have had terrible flares where I cannot even wake up at all. My husband will come and try to get me up and I tell him I cannot wake up yet. I also have had a couple of episodes where I cannot talk at all. It was getting to that point last night and that was why I actually could be mad enough to cry. When I Googled NS I got an article of emedicine.com. It is written by Dr. Bucurescu at the Philadelphia Veterans Center. It is very informative and I have printed and am taking it back with me to VA. It also lists the meds that are used with all the contraindications, etc. Well, my sister just got up, so I need to go help her. TerriNeuroSarcoid66@... wrote: Mosaicgirl: I know the feeling of doing too much and paying for it. I am trying to recover from this now, its nto working. we need a "super duper over did it recovery pill". hmmm do they make one of those? just something you can take for a couple days to get over the times when you have had to, due to life circumstances really push yourself and then landed in a horrid flare? whats it called? I am making light so I don't cry, because I have several more weeks scattered through the summer of such times requiring "overdoing it" and am not sure how I am going to make it through them all. But seriously, I hope that you get some rest soon and can recover. Please share the link to the article you are referring to , I am sure we would all like to read it. Good luck at your appt at Hopkins. When did you say it was again? Keep us updated please. Take care, Kim NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~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 June 9, 2005 Report Share Posted June 9, 2005 Amy, I don't have flares, I don't think, because I never have remissions. But as far as pacing yourself, I can't really plan ahead much. Other than doctor appts., I just see how I feel each day. Sometimes I feel pretty good, so I go to the grocery store & maybe run a couple more errands. Then I come home, crash & burn. A couple of weeks ago I went to a cookout at my son's, visited & ate some, then zonked out on the sofa for 4 hours! My family & friends know not to count on me. Rose Re: Mosaicgirl > I'm glad to know these flares are real and not my imagination. If I > over do I pay. Does anyone have warning signs of how much is too much > before they actually get to too much? I'm trying to manage my life and > honor the committments I make, which gets really hard when I'm sleeping > or can't get out of bed. -- as I'm sure you all know and understand. > Amy > Terri e wrote: > > > Kim, > > > > I was already seen at 's Hopkins but I am going to call Dr. > > regarding Rose's suggestion of the NS doc at University of > > land - it is right there at Hopkins. > > > > I don't cry that often but this is such a relief to have someone > > understand. In an attempt to get to the diagnosis I have started keep > > a diary of sorts to show my idiot docs in Va what is going on. > > > > I have had terrible flares where I cannot even wake up at all. My > > husband will come and try to get me up and I tell him I cannot wake up > > yet. I also have had a couple of episodes where I cannot talk at > > all. It was getting to that point last night and that was why I > > actually could be mad enough to cry. > > > > When I Googled NS I got an article of emedicine.com. It is written by > > Dr. Bucurescu at the Philadelphia Veterans Center. It is very > > informative and I have printed and am taking it back with me to VA. > > It also lists the meds that are used with all the contraindications, > > etc. > > > > Well, my sister just got up, so I need to go help her. > > > > Terri > > > > */NeuroSarcoid66@.../* wrote: > > > > Mosaicgirl: > > > > I know the feeling of doing too much and paying for it. I am > > trying to recover from this now, its nto working. we need a > > " super duper over did it recovery pill " . hmmm do they make one > > of those? just something you can take for a couple days to get > > over the times when you have had to, due to life circumstances > > really push yourself and then landed in a horrid flare? whats it > > called? > > > > I am making light so I don't cry, because I have several more > > weeks scattered through the summer of such times requiring > > " overdoing it " and am not sure how I am going to make it through > > them all. But seriously, I hope that you get some rest soon and > > can recover. > > > > Please share the link to the article you are referring to , I am > > sure we would all like to read it. Good luck at your appt at > > Hopkins. When did you say it was again? Keep us updated please. > > > > Take care, > > Kim > > NS 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 June 10, 2005 Report Share Posted June 10, 2005 Rose - you keep making me feel like i cant communicate! hahaha stop it will you! LOOOOL you keep saying what i mean to say in such nice short perfect sentences that make so much sense. i feel like i ramble on and on trying to make the same point that you make so concisely! well thank you again for making ti so well. you said waht i was trying to say yesterday to amy. i dont have flares really because i dont have remissions, i cant pace myself anymore or find new limitations because of this. its all too much. though i choose to over do when somethign is worth it then suffer it. i outright say to people that i am not dependable. i never sign up for things anymore because i know chances are they will not be able to count on me when the time comes. i have left too many people in a lurch at the last minute and just wont do it anymore. this is awful and i something i hate most about being ill. but you cant let people down when they are coutning on you so you have to just decline certain things from the beginning. i just hatethis in ability to participate in things. like classroom parties, fieldtrips, anything that needs signing up in advance, you cant do. because you have no idea how that day will be for you. well, take care kim ns moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Rose, That sounds exactly what happens to me when I flare. When I am feeling well, I still plan things out but during a flare, just a trip to Target will merit a 4-5 hour nap and two days to ever feel like a might go out of the house again. I meant to ask earlier, do you have any vision problems? Mine can be terrible and sometimes I can't drive. Luckily, my friend Annemarie takes me everywhere. She understands too when I don't feel good because her hubby has MS. Thanks for being there.Rose wrote: Amy, I don't have flares, I don't think, because I never have remissions.But as far as pacing yourself, I can't really plan ahead much. Other thandoctor appts., I just see how I feel each day. Sometimes I feel prettygood, so I go to the grocery store & maybe run a couple more errands. ThenI come home, crash & burn. A couple of weeks ago I went to a cookout at myson's, visited & ate some, then zonked out on the sofa for 4 hours! Myfamily & friends know not to count on me. Rose Re: Mosaicgirl> I'm glad to know these flares are real and not my imagination. If I> over do I pay. Does anyone have warning signs of how much is too much> before they actually get to too much? I'm trying to manage my life and> honor the committments I make, which gets really hard when I'm sleeping> or can't get out of bed. -- as I'm sure you all know and understand.> Amy> Terri e wrote:>> > Kim,> >> > I was already seen at 's Hopkins but I am going to call Dr.> > regarding Rose's suggestion of the NS doc at University of> > land - it is right there at Hopkins.> >> > I don't cry that often but this is such a relief to have someone> > understand. In an attempt to get to the diagnosis I have started keep> > a diary of sorts to show my idiot docs in Va what is going on.> >> > I have had terrible flares where I cannot even wake up at all. My> > husband will come and try to get me up and I tell him I cannot wake up> > yet. I also have had a couple of episodes where I cannot talk at> > all. It was getting to that point last night and that was why I> > actually could be mad enough to cry.> >> > When I Googled NS I got an article of emedicine.com. It is written by> > Dr. Bucurescu at the Philadelphia Veterans Center. It is very> > informative and I have printed and am taking it back with me to VA.> > It also lists the meds that are used with all the contraindications,> > etc.> >> > Well, my sister just got up, so I need to go help her.> >> > Terri> >> > */NeuroSarcoid66@.../* wrote:> >> > Mosaicgirl:> >> > I know the feeling of doing too much and paying for it. I am> > trying to recover from this now, its nto working. we need a> > "super duper over did it recovery pill". hmmm do they make one> > of those? just something you can take for a couple days to get> > over the times when you have had to, due to life circumstances> > really push yourself and then landed in a horrid flare? whats it> > called?> >> > I am making light so I don't cry, because I have several more> > weeks scattered through the summer of such times requiring> > "overdoing it" and am not sure how I am going to make it through> > them all. But seriously, I hope that you get some rest soon and> > can recover.> >> > Please share the link to the article you are referring to , I am> > sure we would all like to read it. Good luck at your appt at > > Hopkins. When did you say it was again? Keep us updated please.> >> > Take care,> > Kim> > NS 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 June 10, 2005 Report Share Posted June 10, 2005 Dear Amy, Usually I don't have too many warning signs when I have overextended myself. I usually know when I hurt all over and feel really weak and fatigued, but by that time I am usually in a flare and its too late. After having sarcoid for over 2 years now, I have come to know my limitations and what I can do and what I can't do. ALso the time limits I can really take. SOrry if I haven't really helped you, but that's my experience with the sarcoid flares. Luv, Debbie e wrote: Amy, I wish that I could say I can tell when I have done too much. My first indicator is that I stutter but sometimes even that is too late. So I either do nothing at all or I do way too much. When it was thought that I had multiple sclerosis one of the energy conservation tips was to do 20 min of work then 20 minutes of rest. I don't know about you but sometimes I forget to rest until it is too late. So I do try to do that and it can help. TerriAmy Cashen wrote: I'm glad to know these flares are real and not my imagination. If I over do I pay. Does anyone have warning signs of how much is too much before they actually get to too much? I'm trying to manage my life and honor the committments I make, which gets really hard when I'm sleeping or can't get out of bed. -- as I'm sure you all know and understand.AmyTerri e wrote:> Kim,> > I was already seen at 's Hopkins but I am going to call Dr. > regarding Rose's suggestion of the NS doc at University of > land - it is right there at Hopkins.> > I don't cry that often but this is such a relief to have someone > understand. In an attempt to get to the diagnosis I have started keep > a diary of sorts to show my idiot docs in Va what is going on.> > I have had terrible flares where I cannot even wake up at all. My > husband will come and try to get me up and I tell him I cannot wake up > yet. I also have had a couple of episodes where I cannot talk at > all. It was getting to that point last night and that was why I > actually could be mad enough to cry. > > When I Googled NS I got an article of emedicine.com. It is written by > Dr. Bucurescu at the Philadelphia Veterans Center. It is very > informative and I have printed and am taking it back with me to VA. > It also lists the meds that are used with all the contraindications, > etc. > > Well, my sister just got up, so I need to go help her.> > Terri>> */NeuroSarcoid66@.../* wrote:>> Mosaicgirl:> > I know the feeling of doing too much and paying for it. I am> trying to recover from this now, its nto working. we need a> "super duper over did it recovery pill". hmmm do they make one> of those? just something you can take for a couple days to get> over the times when you have had to, due to life circumstances> really push yourself and then landed in a horrid flare? whats it> called?> > I am making light so I don't cry, because I have several more> weeks scattered through the summer of such times requiring> "overdoing it" and am not sure how I am going to make it through> them all. But seriously, I hope that you get some rest soon and> can recover.> > Please share the link to the article you are referring to , I am> sure we would all like to read it. Good luck at your appt at > Hopkins. When did you say it was again? Keep us updated please.> > Take care,> Kim> NS 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 June 11, 2005 Report Share Posted June 11, 2005 Terri, the only vision problems I've had are dry eyes, but not too bad, and cataracts from Prednisone. Both cataract surgeries went very well, and I'm actually pleased because for the first time in my life, I can see well without glasses or contacts! Yeah, I'm nuts. Rose Re: Mosaicgirl> I'm glad to know these flares are real and not my imagination. If I> over do I pay. Does anyone have warning signs of how much is too much> before they actually get to too much? I'm trying to manage my life and> honor the committments I make, which gets really hard when I'm sleeping> or can't get out of bed. -- as I'm sure you all know and understand.> Amy> Terri e wrote:>> > Kim,> >> > I was already seen at 's Hopkins but I am going to call Dr.> > regarding Rose's suggestion of the NS doc at University of> > land - it is right there at Hopkins.> >> > I don't cry that often but this is such a relief to have someone> > understand. In an attempt to get to the diagnosis I have started keep> > a diary of sorts to show my idiot docs in Va what is going on.> >> > I have had terrible flares where I cannot even wake up at all. My> > husband will come and try to get me up and I tell him I cannot wake up> > yet. I also have had a couple of episodes where I cannot talk at> > all. It was getting to that point last night and that was why I> > actually could be mad enough to cry.> >> > When I Googled NS I got an article of emedicine.com. It is written by> > Dr. Bucurescu at the Philadelphia Veterans Center. It is very> > informative and I have printed and am taking it back with me to VA.> > It also lists the meds that are used with all the contraindications,> > etc.> >> > Well, my sister just got up, so I need to go help her.> >> > Terri> >> > */NeuroSarcoid66@.../* wrote:> >> > Mosaicgirl:> >> > I know the feeling of doing too much and paying for it. I am> > trying to recover from this now, its nto working. we need a> > "super duper over did it recovery pill". hmmm do they make one> > of those? just something you can take for a couple days to get> > over the times when you have had to, due to life circumstances> > really push yourself and then landed in a horrid flare? whats it> > called?> >> > I am making light so I don't cry, because I have several more> > weeks scattered through the summer of such times requiring> > "overdoing it" and am not sure how I am going to make it through> > them all. But seriously, I hope that you get some rest soon and> > can recover.> >> > Please share the link to the article you are referring to , I am> > sure we would all like to read it. Good luck at your appt at > > Hopkins. When did you say it was again? Keep us updated please.> >> > Take care,> > Kim> > NS 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 June 11, 2005 Report Share Posted June 11, 2005 Rose, You don't sound nuts. I don't blame you; that is one less thing you have to deal with. My problem is mostly spatial - I can't tell where I am and I am always running into things on my left side, dropping things etc. I did have optic neuritis in my left eye about a year and a half ago and I get terrible pain in it sometimes. How long have you had NS? What type of treatment are you on? Well my Sis is up and I am going to go. Take care. TerriRose wrote: Terri, the only vision problems I've had are dry eyes, but not too bad, and cataracts from Prednisone. Both cataract surgeries went very well, and I'm actually pleased because for the first time in my life, I can see well without glasses or contacts! Yeah, I'm nuts. Rose Re: Mosaicgirl> I'm glad to know these flares are real and not my imagination. If I> over do I pay. Does anyone have warning signs of how much is too much> before they actually get to too much? I'm trying to manage my life and> honor the committments I make, which gets really hard when I'm sleeping> or can't get out of bed. -- as I'm sure you all know and understand.> Amy> Terri e wrote:>> > Kim,> >> > I was already seen at 's Hopkins but I am going to call Dr.> > regarding Rose's suggestion of the NS doc at University of> > land - it is right there at Hopkins.> >> > I don't cry that often but this is such a relief to have someone> > understand. In an attempt to get to the diagnosis I have started keep> > a diary of sorts to show my idiot docs in Va what is going on.> >> > I have had terrible flares where I cannot even wake up at all. My> > husband will come and try to get me up and I tell him I cannot wake up> > yet. I also have had a couple of episodes where I cannot talk at> > all. It was getting to that point last night and that was why I> > actually could be mad enough to cry.> >> > When I Googled NS I got an article of emedicine.com. It is written by> > Dr. Bucurescu at the Philadelphia Veterans Center. It is very> > informative and I have printed and am taking it back with me to VA.> > It also lists the meds that are used with all the contraindications,> > etc.> >> > Well, my sister just got up, so I need to go help her.> >> > Terri> >> > */NeuroSarcoid66@.../* wrote:> >> > Mosaicgirl:> >> > I know the feeling of doing too much and paying for it. I am> > trying to recover from this now, its nto working. we need a> > "super duper over did it recovery pill". hmmm do they make one> > of those? just something you can take for a couple days to get> > over the times when you have had to, due to life circumstances> > really push yourself and then landed in a horrid flare? whats it> > called?> >> > I am making light so I don't cry, because I have several more> > weeks scattered through the summer of such times requiring> > "overdoing it" and am not sure how I am going to make it through> > them all. But seriously, I hope that you get some rest soon and> > can recover.> >> > Please share the link to the article you are referring to , I am> > sure we would all like to read it. Good luck at your appt at > > Hopkins. When did you say it was again? Keep us updated please.> >> > Take care,> > Kim> > NS 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 June 11, 2005 Report Share Posted June 11, 2005 Rose you are not nuts, you are as normal as the rest of us.......wait maybe we all are nuts! Anyway , my mom had her eyes done and she too is very pleased with the results. I actually am looking forward to eventually having the surgery also as I have been wearing glasses since I was 5 and the DOc told me at the last visit that there wasn't anything else he could do to improve my vision until I devloped catracts and then replaced the lens. Lynne M. --- Rose mamadog@...> wrote: > Terri, the only vision problems I've had are dry > eyes, but not too bad, and cataracts from > Prednisone. Both cataract surgeries went very well, > and I'm actually pleased because for the first time > in my life, I can see well without glasses or > contacts! Yeah, I'm nuts. Rose > Re: Mosaicgirl > > > > I'm glad to know these flares are real and not > my imagination. If I > > over do I pay. Does anyone have warning signs > of how much is too much > > before they actually get to too much? I'm > trying to manage my life and > > honor the committments I make, which gets > really hard when I'm sleeping > > or can't get out of bed. -- as I'm sure you > all know and understand. > > Amy > > Terri e wrote: > > > > > Kim, > > > > > > I was already seen at 's Hopkins but I > am going to call Dr. > > > regarding Rose's suggestion of the > NS doc at University of > > > land - it is right there at Hopkins. > > > > > > I don't cry that often but this is such a > relief to have someone > > > understand. In an attempt to get to the > diagnosis I have started keep > > > a diary of sorts to show my idiot docs in Va > what is going on. > > > > > > I have had terrible flares where I cannot > even wake up at all. My > > > husband will come and try to get me up and I > tell him I cannot wake up > > > yet. I also have had a couple of episodes > where I cannot talk at > > > all. It was getting to that point last > night and that was why I > > > actually could be mad enough to cry. > > > > > > When I Googled NS I got an article of > emedicine.com. It is written by > > > Dr. Bucurescu at the Philadelphia > Veterans Center. It is very > > > informative and I have printed and am taking > it back with me to VA. > > > It also lists the meds that are used with > all the contraindications, > > > etc. > > > > > > Well, my sister just got up, so I need to go > help her. > > > > > > Terri > > > > > > */NeuroSarcoid66@.../* wrote: > > > > > > Mosaicgirl: > > > > > > I know the feeling of doing too much and > paying for it. I am > > > trying to recover from this now, its nto > working. we need a > > > " super duper over did it recovery pill " . > hmmm do they make one > > > of those? just something you can take > for a couple days to get > > > over the times when you have had to, due > to life circumstances > > > really push yourself and then landed in > a horrid flare? whats it > > > called? > > > > > > I am making light so I don't cry, > because I have several more > > > weeks scattered through the summer of > such times requiring > > > " overdoing it " and am not sure how I am > going to make it through > > > them all. But seriously, I hope that > you get some rest soon and > > > can recover. > > > > > > Please share the link to the article you > are referring to , I am > > > sure we would all like to read it. Good > luck at your appt at > > > Hopkins. When did you say it was again? > Keep us updated please. > > > > > > Take care, > > > Kim > > > NS 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...
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