Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 When do you get it together. I don't understand I was " diagnosed " with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different? Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2009 Report Share Posted December 13, 2009 Ahh Rach, So many times when we are in survival mode, and we think and trust that our doctors have it together, and that the treatment they are giving us is helping to keep "things" at bay-- we find we can plug along, and just do what we need to do. With MS you had some very good options treatment wise-- sure, it can't be cured yet, but many people will have it remit and not be an ongoing problem. You'll find with your sarcoidosis that you will have those times also. The treatment options are much more limited-- and I suspect you have to be feeling very "let down." I know that when I was going through all the testing, and MS, Lupus, Early onset Alzheimers-- where all "very" strong possiblities-- I didn't know if I should be laughing or crying. I kept thinking at least those illnesses have research money being invested. You've gone through the treatments for MS-- and knew what the progression "might" be. With NS-- we don't know. What I can tell you is that NS rarely causes death. If it does-- it's years down the road. And it will be some secondary problem that will get us-- not the sarc. For example, pulmonary sarc rarely kills, but the advanced pulmonary fibrosis and pulmonary hypertension can. The percentage of people that will advance to those stages is very very low. Some of what you're going thru is the normal "stages of grieving"-- and right now, you're depressed, exhausted, frustated, angry, scared, and you have to be thinking, "great, now back to the testing and guessing as to what is going on." You probably even what to scream at something-- or someone. It's ok-- we've all had our moments of f**k it all. Others of us are there with you right now. (Me included.) I've done a bunch of articles on the "Five Stages of Grieving" and I hope you'll go to the Message Archives and search by that subject. It really helps to put things in perspective. As for me, I remind myself every time I get on here and have to type in my name-- TIODAAT means Taking It One Day At A Time. Know that many of us are with you and do understand what you are going through. You will get thru this-- and know that many times, the sarc may be hitting the part of your brain that controls emotion-- with either vasculitis or granulomas-- and that with treatment, the inflammation can get better, and you'll have "normal" times. Take care, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Sun, December 13, 2009 6:01:48 PMSubject: Coping with it all. When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Rach, I haven't been on much because I've been trying to be Superman, I lost my 'Father 3.5 years ago from NHL, I was diagnosed with Sarcoid 2.5 years ago but I've been sick with it for 8 years (it started in my nervous system and everyone diagnosed it) like it's normal for a man in his 40's to get 4-6 upper respiratory infections a year (1-2 of them turning into pneumonia, atetletecsis and pleural effusions), have on and off use of his right arm etc. When I was diagnosed it was the worst case anyone around here had seen, I had over 30 large lyph node site and the Cat and PET scan both said NHL. For 3 weeks they told me I had the same Cancer my Father (who I had just gotten over the severe grieving from) ( I made one of the decisions that killed him, long story for another time) The first pulmonologist told said "I would be his test case" because he had never seen it so bad. needless to say I'm no one's test case (without knowing it lol) i found a great pulmonologist in NY who was in on a lot of the earlier research at Mt. Sinai and calls himself a "Sarcoidologist" but when it's not in my chest he just calls me an 'oddball' says it's a 'painless disease' lol . 4 weeks ago we found a mass in my Mother's lung and between me and my sister's we've been going back and 4th to NY and last week (2 weeks ago today I think) we found out it was lung cancer and they removed 1/2 her left lobe. I'm working from 9-8 today then driving to NJ to be able to take her at 7am on wed to NY. I haven't had a moment for myself because the Sarcoid has been acting up for the past 3 weeks, breathing is a problem, my bones and joints are killing me, I can hardly use my arm and now my right eye is painful (new one) putting meds in but not helping. I'm back on Methotrexate and my prednisone is between 20-40 mg of all meds i hate that one the most) You ask how we survive, because it still beats the alternative lol, seriously, it was finding this board about 2 months ago that allows me to get up every morning and do what I have to do. The support and love I received instantly, knowing I wasn't an "oddball' and that there are many other's who went through or are going through what I did is a comfort, why I don't know except I know I'lll never be alone again. look around, it may not be a comfort to you but i see how many other's have it so worse then I do (not just this disease but everything, other disease's, family problems, life problems) Count your blessings and not just the curses, it will be ok, I promise. It will be better, if not you can come and kick my ass (shouldn't be that hard, lol) Good luck and remember there are so many people to lean on here Mitch Coping with it all. When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different? Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Mitch, please get that eye checked. It is very possible that you've got some iritis or uveitis going on-- are you light sensitive? If that goes untreated, you can end up losing the vision to it from the buildup of intra-ocular pressure. Glaucoma can represent itself as the "flu." All the symptoms without the fever. The light sensitivity is a huge clue that you've got inflammation going on. Pred forte drops can save your eye, and you can still deal with all that Mom has going on. As for the Superman thing-- I know that when we have to, we find the energy to deal with whatever is handed to us-- but do try to pace yourself. Get some extra naps in, make sure you get adequate fluids and if you aren't using the MSM powder-- get some. It will help that bone and body pain. I know I don't need to tell you that the exhaustion and stress from all this is a huge component in why you hurt. Find some time to do deep breathing, guided relaxation exercises. You can download some of them from the internet on an MP3 or CD or whatever. Take them with you as you travel, and while hanging in the waiting rooms-- listen to them. Get mom to listen also-- she can use the added relief. Know that we will ALL add you and your family to our prayers and thoughts. As tough as it is, keep your heart open. Compassionately Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Mon, December 14, 2009 4:46:08 AMSubject: Re: Coping with it all. Rach, I haven't been on much because I've been trying to be Superman, I lost my 'Father 3.5 years ago from NHL, I was diagnosed with Sarcoid 2.5 years ago but I've been sick with it for 8 years (it started in my nervous system and everyone diagnosed it) like it's normal for a man in his 40's to get 4-6 upper respiratory infections a year (1-2 of them turning into pneumonia, atetletecsis and pleural effusions), have on and off use of his right arm etc. When I was diagnosed it was the worst case anyone around here had seen, I had over 30 large lyph node site and the Cat and PET scan both said NHL. For 3 weeks they told me I had the same Cancer my Father (who I had just gotten over the severe grieving from) ( I made one of the decisions that killed him, long story for another time) The first pulmonologist told said "I would be his test case" because he had never seen it so bad. needless to say I'm no one's test case (without knowing it lol) i found a great pulmonologist in NY who was in on a lot of the earlier research at Mt. Sinai and calls himself a "Sarcoidologist" but when it's not in my chest he just calls me an 'oddball' says it's a 'painless disease' lol . 4 weeks ago we found a mass in my Mother's lung and between me and my sister's we've been going back and 4th to NY and last week (2 weeks ago today I think) we found out it was lung cancer and they removed 1/2 her left lobe. I'm working from 9-8 today then driving to NJ to be able to take her at 7am on wed to NY. I haven't had a moment for myself because the Sarcoid has been acting up for the past 3 weeks, breathing is a problem, my bones and joints are killing me, I can hardly use my arm and now my right eye is painful (new one) putting meds in but not helping. I'm back on Methotrexate and my prednisone is between 20-40 mg of all meds i hate that one the most) You ask how we survive, because it still beats the alternative lol, seriously, it was finding this board about 2 months ago that allows me to get up every morning and do what I have to do. The support and love I received instantly, knowing I wasn't an "oddball' and that there are many other's who went through or are going through what I did is a comfort, why I don't know except I know I'lll never be alone again. look around, it may not be a comfort to you but i see how many other's have it so worse then I do (not just this disease but everything, other disease's, family problems, life problems) Count your blessings and not just the curses, it will be ok, I promise. It will be better, if not you can come and kick my ass (shouldn't be that hard, lol) Good luck and remember there are so many people to lean on here Mitch Coping with it all. When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 I understand the coping. Lately here we have had some issues that have made daily life difficult & we are trying to manage our way through them. I have learned that we take it day to day & do the best we can. With the approaching holidays I am trying to keep the stress level at a minimum so will be able to enjoy them. I will everyone in my prayers/MattSubject: Re: Coping with it all.To: Neurosarcoidosis Date: Sunday, December 13, 2009, 11:54 PM Ahh Rach, So many times when we are in survival mode, and we think and trust that our doctors have it together, and that the treatment they are giving us is helping to keep "things" at bay-- we find we can plug along, and just do what we need to do. With MS you had some very good options treatment wise-- sure, it can't be cured yet, but many people will have it remit and not be an ongoing problem. You'll find with your sarcoidosis that you will have those times also. The treatment options are much more limited-- and I suspect you have to be feeling very "let down." I know that when I was going through all the testing, and MS, Lupus, Early onset Alzheimers-- where all "very" strong possiblities- - I didn't know if I should be laughing or crying. I kept thinking at least those illnesses have research money being invested. You've gone through the treatments for MS-- and knew what the progression "might" be. With NS-- we don't know. What I can tell you is that NS rarely causes death. If it does-- it's years down the road. And it will be some secondary problem that will get us-- not the sarc. For example, pulmonary sarc rarely kills, but the advanced pulmonary fibrosis and pulmonary hypertension can. The percentage of people that will advance to those stages is very very low. Some of what you're going thru is the normal "stages of grieving"-- and right now, you're depressed, exhausted, frustated, angry, scared, and you have to be thinking, "great, now back to the testing and guessing as to what is going on." You probably even what to scream at something-- or someone. It's ok-- we've all had our moments of f**k it all. Others of us are there with you right now. (Me included.) I've done a bunch of articles on the "Five Stages of Grieving" and I hope you'll go to the Message Archives and search by that subject. It really helps to put things in perspective. As for me, I remind myself every time I get on here and have to type in my name-- TIODAAT means Taking It One Day At A Time. Know that many of us are with you and do understand what you are going through. You will get thru this-- and know that many times, the sarc may be hitting the part of your brain that controls emotion-- with either vasculitis or granulomas-- and that with treatment, the inflammation can get better, and you'll have "normal" times. Take care, Tracie NS Co-owner/moderator From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Sun, December 13, 2009 6:01:48 PMSubject: Coping with it all. When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?Rach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Thank you all for your responses. I don't know where I'd be without this group. When ever I feel down, i just come here and have a read. > > > Subject: Re: Coping with it all. > To: Neurosarcoidosis > Date: Sunday, December 13, 2009, 11:54 PM > > > > > > > >  > > > > > > > > > > Ahh Rach, > So many times when we are in survival mode, and we think and trust that our doctors have it together, and that the treatment they are giving us is helping to keep " things " at bay-- we find we can plug along, and just do what we need to do. With MS you had some very good options treatment wise-- sure, it can't be cured yet, but many people will have it remit and not be an ongoing problem. > You'll find with your sarcoidosis that you will have those times also. The treatment options are much more limited-- and I suspect you have to be feeling very " let down. "  I know that when I was going through all the testing, and MS, Lupus, Early onset Alzheimers-- where all " very " strong possiblities- - I didn't know if I should be laughing or crying. I kept thinking at least those illnesses have research money being invested. > You've gone through the treatments for MS-- and knew what the progression " might " be. With NS-- we don't know. > What I can tell you is that NS rarely causes death. If it does-- it's years down the road. And it will be some secondary problem that will get us-- not the sarc. For example, pulmonary sarc rarely kills, but the advanced pulmonary fibrosis and pulmonary hypertension can. The percentage of people that will advance to those stages is very very low. > Some of what you're going thru is the normal " stages of grieving " -- and right now, you're depressed, exhausted, frustated, angry, scared, and you have to be thinking, " great, now back to the testing and guessing as to what is going on. "  You probably even what to scream at something-- or someone. It's ok-- we've all had our moments of f**k it all. Others of us are there with you right now. (Me included.) > I've done a bunch of articles on the " Five Stages of Grieving " and I hope you'll go to the Message Archives and search by that subject. It really helps to put things in perspective. > As for me, I remind myself every time I get on here and have to type in my name-- TIODAAT means Taking It One Day At A Time. >  > Know that many of us are with you and do understand what you are going through. You will get thru this-- and know that many times, the sarc may be hitting the part of your brain that controls emotion-- with either vasculitis or granulomas-- and that with treatment, the inflammation can get better, and you'll have " normal " times. >  > Take care, > Tracie > NS Co-owner/moderator > >  > > > > > From: rachyanne <stiks11 (AT) hotmail (DOT) com> > To: Neurosarcoidosis@ yahoogroups. com > Sent: Sun, December 13, 2009 6:01:48 PM > Subject: Coping with it all. > >  > > When do you get it together. I don't understand I was " diagnosed " with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different? > > Rach > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Hang in there and keep your expectations at managable levels (so you can beat them). I was diagnosed in April after months of no answers. Yoga and swimming help me. Be strong!! Subject: Re: Coping with it all.To: Neurosarcoidosis Date: Tuesday, December 15, 2009, 5:47 PM Thank you all for your responses. I don't know where I'd be without this group. When ever I feel down, i just come here and have a read.> > From: tracie feldhaus <tiodaat2001@ ...>> Subject: Re: Coping with it all.> To: Neurosarcoidosis@ yahoogroups. com> Date: Sunday, December 13, 2009, 11:54 PM> > > > > > > >  > > > > > > > > > > Ahh Rach,> So many times when we are in survival mode, and we think and trust that our doctors have it together, and that the treatment they are giving us is helping to keep "things" at bay-- we find we can plug along, and just do what we need to do. With MS you had some very good options treatment wise-- sure, it can't be cured yet, but many people will have it remit and not be an ongoing problem. > You'll find with your sarcoidosis that you will have those times also. The treatment options are much more limited-- and I suspect you have to be feeling very "let down." I know that when I was going through all the testing, and MS, Lupus, Early onset Alzheimers-- where all "very" strong possiblities- - I didn't know if I should be laughing or crying. I kept thinking at least those illnesses have research money being invested. > You've gone through the treatments for MS-- and knew what the progression "might" be. With NS-- we don't know. > What I can tell you is that NS rarely causes death. If it does-- it's years down the road. And it will be some secondary problem that will get us-- not the sarc. For example, pulmonary sarc rarely kills, but the advanced pulmonary fibrosis and pulmonary hypertension can. The percentage of people that will advance to those stages is very very low. > Some of what you're going thru is the normal "stages of grieving"-- and right now, you're depressed, exhausted, frustated, angry, scared, and you have to be thinking, "great, now back to the testing and guessing as to what is going on." You probably even what to scream at something-- or someone. It's ok-- we've all had our moments of f**k it all. Others of us are there with you right now. (Me included.) > I've done a bunch of articles on the "Five Stages of Grieving" and I hope you'll go to the Message Archives and search by that subject. It really helps to put things in perspective. > As for me, I remind myself every time I get on here and have to type in my name-- TIODAAT means Taking It One Day At A Time. >  > Know that many of us are with you and do understand what you are going through. You will get thru this-- and know that many times, the sarc may be hitting the part of your brain that controls emotion-- with either vasculitis or granulomas-- and that with treatment, the inflammation can get better, and you'll have "normal" times. >  > Take care,> Tracie> NS Co-owner/moderator> >  > > > > > From: rachyanne <stiks11 (AT) hotmail (DOT) com>> To: Neurosarcoidosis@ yahoogroups. com> Sent: Sun, December 13, 2009 6:01:48 PM> Subject: Coping with it all..> >  > > When do you get it together. I don't understand I was "diagnosed" with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different?> > Rach> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Rach, I was dx with Sarc 15 years ago, lungs, then skin, now Neuro, and there are still days I can't seem to get it together, I think like Tracie said, this is unknown territory, there is still so little known, what's the right treatment seems to be different for each person. I've been on Remicade for 1 1/2 years, was taken off Methotrexate about 4 months into treatment, as my liver acted up, so had to go off the Metho. turned out to be a fattly liver, because I gained a lot weight fast, thanks to the wonderful hate/love drug Pred. Since I was doing so well, my doc decided to keep me off the Metho. now I'm starting to slip again, legs getting weaker, numbness in more areas of the body, so talked with my doc about starting back up with the Metho. we are but he wants me to go off the Plaquanil, scares me a little, but will try, so I've been going through the can't seem to keep it together stage again. I hard thing for me, is that I've had this disease so long, no one really cares about what's going on with Mom anymore, it's just another day in the life of Sarcoid. So don't beat yourself up for feeling this way, it is a normal process, and I find myself in and out of it, as Tracie mentioned. Hang in there, we are here for you, if you have questions, or just need to know that what you are feeling is normal, (well there is no such thing as normal) but what your feeling is OK. Hugs, Marla When do you get it together. I don't understand I was " diagnosed " with MS for 5 years and coped. I have been rediagnosed with with Neurosarc for just on 4 months and I just can't get it together, I don't know why but I keep crying. Why should this be any different? Rach 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.