Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you. You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . ) But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can. Love to all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Tracie, You don't know how much your post has hit home. I had a setback two days ago, and that's all I have been hearing from family about the meds. It's kind of embarrassing but I was going to the bathroom (BM) and I was straining when all of a sudden I got this sudden sharp pain on the left side of my head kind of on top and side of my ear. I finished and got up and I couldn't stand up straight. I kept falling over on my right side and the pain was so bad. I never had anything happen like this before. SO I finally made my way to bed holding onto things to keep me upright. I felt nauseous, dizzy and really bad headache especially on that right side. Icouldn't hold my head up for long. Then I started feeling funny stuff on my right side like tingles , numbness. My husband wanted to take me to the ER, but I didn't want to go. I am so sick of the ER runaround, you know? Luckily, I had a neurologist appt the next day anyway. Yesterday morning, I got up still with the headache and dizzyness but not as bad. My husband wouldn't let me drive and he brought me to my appt. The neurologist is ADD , so you gotta almost pin him down to get him to listen to you. It's awful, thank God I brought my husband cause I had a lot of symptoms to tell him about even before the "little episode" . Well at first he said that I might have pinched a nerve in my neck while straining then he started talking about the possiblity of a type of stroke which centered around that area in the head where I felt it. I forget the name something like hemo - something. SO he decided to do a MRI of my brain and neck again - since "it's been a year since my last one". Well, after he mentioned stroke , I panicked . They scheduled the MRI for next Thursday. What am I supposed to do till then? Today I did some laundry , took care of the dogs, and then I started getting really dizzy, sick to my stomach and leaning over to the right a little. I still have the headache but not as bad as two nights ago. Anyway , sorry for the long post. I just had to vent to people who "are in my shoes" so to speak. Quint, have you had this type of stroke before? Anyone else? I am kinda nervous , I don't think a pinched nerve could do all this , do you? Thanks for listening. Debbie Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.Love to all, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Tracie, you inspire me also when I am down and out how you can keep functioning through everything but I guess we all have to hold on tight and aim high. I know my Mom means well she is just worried that if they ever get all this cured I will be left with all the damage from all the medications which I fully understand. It makes it horrible to cure this disease then be left with diabetes, addictions and everything else. I hope everything goes well with your infusions and I am so glad they have found something to help. Take care of yourself and remember I am always thinking of you and praying for you. Your friend in Texas, Jeanna From: tiodaat@... Sent: Thursday, May 06, 2004 1:17 AMTo: Neurosarcoidosis Subject: Re: Jeanna--meds & family Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.Love to all, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Debbie, Will keep you in my prayers about this....I know the waiting is hard...I am waiting on blood results right now and like you, I am scared. Just try not to focus on it...keep busy doing something else right now and keep thinking positive......perhaps it is just a pinched nerve....let's keep thinking that! Sending lots of hugs, Darlene > Tracie, > You don't know how much your post has hit home. I had a setback two > days ago, and that's all I have been hearing from family about the > meds. > It's kind of embarrassing but I was going to the bathroom (BM) and I > was straining when all of a sudden I got this sudden sharp pain on the > left side of my head kind of on top and side of my ear. I finished and > got up and I couldn't stand up straight. I kept falling over on my > right side and the pain was so bad. I never had anything happen like > this before. SO I finally made my way to bed holding onto things to > keep me upright. I felt nauseous, dizzy and really bad headache > especially on that right side. Icouldn't hold my head up for long. > Then I started feeling funny stuff on my right side like tingles , > numbness. My husband wanted to take me to the ER, but I didn't want to > go. I am so sick of the ER runaround, you know? Luckily, I had a > neurologist appt the next day anyway. Yesterday morning, I got up > still with the headache and dizzyness but not as bad. My husband > wouldn't let me drive and he brought me to my appt. > The neurologist is ADD , so you gotta almost pin him down to get him to > listen to you. > It's awful, thank God I brought my husband cause I had a lot of symptoms > to tell him about even before the " little episode " . Well at first he > said that I might have pinched a nerve in my neck while straining then he > started talking about the possiblity of a type of stroke which centered > around that area in the head where I felt it. I forget the name something > like hemo - something. > SO he decided to do a MRI of my brain and neck again - since " it's been > a year since my last one " . Well, after he mentioned stroke , I > panicked . They scheduled the MRI for next Thursday. What am I > supposed to do till then? Today I did some laundry , took care of the > dogs, and then I started getting really dizzy, sick to my stomach and > leaning over to the right a little. I still have the headache but not > as bad as two nights ago. > Anyway , sorry for the long post. I just had to vent to people who " are > in my shoes " so to speak. Quint, have you had this type of stroke > before? Anyone else? I am kinda nervous , I don't think a pinched nerve > could do all this , do you? > Thanks for listening. Debbie > > > Lady, you are such an inspiration for me. Despite the severity of your > illness, you always find a kind word for the rest of us. Thank you. > > You spoke of how you were releaved that they found more lesions so that > you can justify to " mom " how much you need the meds you're on. I know > this is an issue for all of us-- and I know that everyone of us would > gladly give up as many of our meds that we can. > > One of the things that is helping me, is that I have had to reframe the > use of my medications. I explain that if I were a diabetic, there > wouldn't be a question or issue that I would need insulin to manage my > diabetes. > > Well, we are all fighting a disease that effects each of us in both > similar ways and yet very differently. We need the anti-depressants, the > seizure medications, to manage our pain, help us sleep, and to keep the > neuropathic pain under " control. " We need the steroids to shrink the > tumors, and hopefully keep new ones from forming. We need the insulin to > treat the diabetes caused by the steroids, and we need the blood pressure > medication to keep our bp under-control-- which is also caused by the > steroids. > > Rather than beat ourselves up over needing our medications-- we finally > come to a place of acceptance that to stay " functioning " this is what we > have to do. And this is where the " family " challenge comes in. > > None of us get to take a 10 day course of antibiotics and be free of our > " illness. " We aren't " ill. " To me, " ill " is something curable. > Sarcoidosis isn't yet " curable. " The best we can do is " control " it-- > like the diabetic controls their diabetes. > > I've been thinking that maybe what my mom was saying is that the nerves in > my arms and hands are shorting out, and that is why I have the pain and > numbness. My reaction was to jump on the " Nerv-(ous), Anxiety, > Depression " train and then derail her with my defensiveness. We are so > used to having to defend, that I'm not sure that I was right in my > reaction to her comment. (I will have to check this out this week. . ) > > But my real point here is that while all of us would give most any body > part to eliminate medications from our routine-- we have to have them to > exist. In the book, " Love, Medicine and Miracles " , the author explains > that when someone has cancer, and is told they need chemo-- they have to > learn to " visualize " the drug as " a friend, a healer, a vehicle to carry > away the cancer " instead of something that is " attacking " their bodies. > They teach that seeing the medication helping and working gently to do its > job, that the side effects were greatly lessened. > > To my way of thinking-- this is a much gentler way of approaching my > healing-- and from personal experience-- it works for me. > > I wish for all of us to be able to see past the outside worlds process, > embrace our own, and know in our hearts that we are doing the best we can. > > Love to all, Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php > > 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 6, 2004 Report Share Posted May 6, 2004 Thanks Darlene. I just get "antsy" too. But I will try and keep busy. Luv, DebbieDarlene wrote: Debbie,Will keep you in my prayers about this....I know the waiting ishard...I am waiting on blood results right now and like you, I amscared.Just try not to focus on it...keep busy doing something else right now andkeep thinking positive......perhaps it is just a pinched nerve....let'skeep thinking that!Sending lots of hugs,Darlene> Tracie,> You don't know how much your post has hit home. I had a setback two> days ago, and that's all I have been hearing from family about the> meds.> It's kind of embarrassing but I was going to the bathroom (BM) and I> was straining when all of a sudden I got this sudden sharp pain on the> left side of my head kind of on top and side of my ear. I finished and> got up and I couldn't stand up straight. I kept falling over on my> right side and the pain was so bad. I never had anything happen like> this before. SO I finally made my way to bed holding onto things to> keep me upright. I felt nauseous, dizzy and really bad headache> especially on that right side. Icouldn't hold my head up for long.> Then I started feeling funny stuff on my right side like tingles ,> numbness. My husband wanted to take me to the ER, but I didn't want to> go. I am so sick of the ER runaround, you know? Luckily, I had a> neurologist appt the next day anyway. Yesterday morning, I got up> still with the headache and dizzyness but not as bad. My husband> wouldn't let me drive and he brought me to my appt.> The neurologist is ADD , so you gotta almost pin him down to get him to> listen to you.> It's awful, thank God I brought my husband cause I had a lot of symptoms> to tell him about even before the "little episode" . Well at first he> said that I might have pinched a nerve in my neck while straining then he> started talking about the possiblity of a type of stroke which centered> around that area in the head where I felt it. I forget the name something> like hemo - something.> SO he decided to do a MRI of my brain and neck again - since "it's been> a year since my last one". Well, after he mentioned stroke , I> panicked . They scheduled the MRI for next Thursday. What am I> supposed to do till then? Today I did some laundry , took care of the> dogs, and then I started getting really dizzy, sick to my stomach and> leaning over to the right a little. I still have the headache but not> as bad as two nights ago.> Anyway , sorry for the long post. I just had to vent to people who "are> in my shoes" so to speak. Quint, have you had this type of stroke> before? Anyone else? I am kinda nervous , I don't think a pinched nerve> could do all this , do you?> Thanks for listening. Debbie>>> Lady, you are such an inspiration for me. Despite the severity of your> illness, you always find a kind word for the rest of us. Thank you.>> You spoke of how you were releaved that they found more lesions so that> you can justify to "mom" how much you need the meds you're on. I know> this is an issue for all of us-- and I know that everyone of us would> gladly give up as many of our meds that we can.>> One of the things that is helping me, is that I have had to reframe the> use of my medications. I explain that if I were a diabetic, there> wouldn't be a question or issue that I would need insulin to manage my> diabetes.>> Well, we are all fighting a disease that effects each of us in both> similar ways and yet very differently. We need the anti-depressants, the> seizure medications, to manage our pain, help us sleep, and to keep the> neuropathic pain under "control." We need the steroids to shrink the> tumors, and hopefully keep new ones from forming. We need the insulin to> treat the diabetes caused by the steroids, and we need the blood pressure> medication to keep our bp under-control-- which is also caused by the> steroids.>> Rather than beat ourselves up over needing our medications-- we finally> come to a place of acceptance that to stay "functioning" this is what we> have to do. And this is where the "family" challenge comes in.>> None of us get to take a 10 day course of antibiotics and be free of our> "illness." We aren't "ill." To me, "ill" is something curable.> Sarcoidosis isn't yet "curable." The best we can do is "control" it--> like the diabetic controls their diabetes.>> I've been thinking that maybe what my mom was saying is that the nerves in> my arms and hands are shorting out, and that is why I have the pain and> numbness. My reaction was to jump on the "Nerv-(ous), Anxiety,> Depression" train and then derail her with my defensiveness. We are so> used to having to defend, that I'm not sure that I was right in my> reaction to her comment. (I will have to check this out this week. . )>> But my real point here is that while all of us would give most any body> part to eliminate medications from our routine-- we have to have them to> exist. In the book, "Love, Medicine and Miracles", the author explains> that when someone has cancer, and is told they need chemo-- they have to> learn to "visualize" the drug as "a friend, a healer, a vehicle to carry> away the cancer" instead of something that is "attacking" their bodies.> They teach that seeing the medication helping and working gently to do its> job, that the side effects were greatly lessened.>> To my way of thinking-- this is a much gentler way of approaching my> healing-- and from personal experience-- it works for me.>> I wish for all of us to be able to see past the outside worlds process,> embrace our own, and know in our hearts that we are doing the best we can.>> Love to all, Tracie>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> 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 6, 2004 Report Share Posted May 6, 2004 Thanks Darlene. I just get "antsy" too. But I will try and keep busy. Luv, DebbieDarlene wrote: Debbie,Will keep you in my prayers about this....I know the waiting ishard...I am waiting on blood results right now and like you, I amscared.Just try not to focus on it...keep busy doing something else right now andkeep thinking positive......perhaps it is just a pinched nerve....let'skeep thinking that!Sending lots of hugs,Darlene> Tracie,> You don't know how much your post has hit home. I had a setback two> days ago, and that's all I have been hearing from family about the> meds.> It's kind of embarrassing but I was going to the bathroom (BM) and I> was straining when all of a sudden I got this sudden sharp pain on the> left side of my head kind of on top and side of my ear. I finished and> got up and I couldn't stand up straight. I kept falling over on my> right side and the pain was so bad. I never had anything happen like> this before. SO I finally made my way to bed holding onto things to> keep me upright. I felt nauseous, dizzy and really bad headache> especially on that right side. Icouldn't hold my head up for long.> Then I started feeling funny stuff on my right side like tingles ,> numbness. My husband wanted to take me to the ER, but I didn't want to> go. I am so sick of the ER runaround, you know? Luckily, I had a> neurologist appt the next day anyway. Yesterday morning, I got up> still with the headache and dizzyness but not as bad. My husband> wouldn't let me drive and he brought me to my appt.> The neurologist is ADD , so you gotta almost pin him down to get him to> listen to you.> It's awful, thank God I brought my husband cause I had a lot of symptoms> to tell him about even before the "little episode" . Well at first he> said that I might have pinched a nerve in my neck while straining then he> started talking about the possiblity of a type of stroke which centered> around that area in the head where I felt it. I forget the name something> like hemo - something.> SO he decided to do a MRI of my brain and neck again - since "it's been> a year since my last one". Well, after he mentioned stroke , I> panicked . They scheduled the MRI for next Thursday. What am I> supposed to do till then? Today I did some laundry , took care of the> dogs, and then I started getting really dizzy, sick to my stomach and> leaning over to the right a little. I still have the headache but not> as bad as two nights ago.> Anyway , sorry for the long post. I just had to vent to people who "are> in my shoes" so to speak. Quint, have you had this type of stroke> before? Anyone else? I am kinda nervous , I don't think a pinched nerve> could do all this , do you?> Thanks for listening. Debbie>>> Lady, you are such an inspiration for me. Despite the severity of your> illness, you always find a kind word for the rest of us. Thank you.>> You spoke of how you were releaved that they found more lesions so that> you can justify to "mom" how much you need the meds you're on. I know> this is an issue for all of us-- and I know that everyone of us would> gladly give up as many of our meds that we can.>> One of the things that is helping me, is that I have had to reframe the> use of my medications. I explain that if I were a diabetic, there> wouldn't be a question or issue that I would need insulin to manage my> diabetes.>> Well, we are all fighting a disease that effects each of us in both> similar ways and yet very differently. We need the anti-depressants, the> seizure medications, to manage our pain, help us sleep, and to keep the> neuropathic pain under "control." We need the steroids to shrink the> tumors, and hopefully keep new ones from forming. We need the insulin to> treat the diabetes caused by the steroids, and we need the blood pressure> medication to keep our bp under-control-- which is also caused by the> steroids.>> Rather than beat ourselves up over needing our medications-- we finally> come to a place of acceptance that to stay "functioning" this is what we> have to do. And this is where the "family" challenge comes in.>> None of us get to take a 10 day course of antibiotics and be free of our> "illness." We aren't "ill." To me, "ill" is something curable.> Sarcoidosis isn't yet "curable." The best we can do is "control" it--> like the diabetic controls their diabetes.>> I've been thinking that maybe what my mom was saying is that the nerves in> my arms and hands are shorting out, and that is why I have the pain and> numbness. My reaction was to jump on the "Nerv-(ous), Anxiety,> Depression" train and then derail her with my defensiveness. We are so> used to having to defend, that I'm not sure that I was right in my> reaction to her comment. (I will have to check this out this week. . )>> But my real point here is that while all of us would give most any body> part to eliminate medications from our routine-- we have to have them to> exist. In the book, "Love, Medicine and Miracles", the author explains> that when someone has cancer, and is told they need chemo-- they have to> learn to "visualize" the drug as "a friend, a healer, a vehicle to carry> away the cancer" instead of something that is "attacking" their bodies.> They teach that seeing the medication helping and working gently to do its> job, that the side effects were greatly lessened.>> To my way of thinking-- this is a much gentler way of approaching my> healing-- and from personal experience-- it works for me.>> I wish for all of us to be able to see past the outside worlds process,> embrace our own, and know in our hearts that we are doing the best we can.>> Love to all, Tracie>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php>> 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 6, 2004 Report Share Posted May 6, 2004 Jeanna, has your mother ever gone to a doctor's appointment with you? One of the doctors with good sense. Maybe if she heard from doctor why you take the various meds, it would stick. It's annoying, but my mother is one of those who think doctors, all doctors, are right up there with God. So I am taking her with me next week when I go to the psychiatrist, in hopes that the "doctor" can convince her that ADD requires more than will power & believing "there's a place for everything and everything in its place." I have a place for everything; unfortunately, those places are the kitchen counters, kitchen floor, coffee table, etc. Moms, you gotta love 'em. Rose RE: Jeanna--meds & family Tracie, you inspire me also when I am down and out how you can keep functioning through everything but I guess we all have to hold on tight and aim high. I know my Mom means well she is just worried that if they ever get all this cured I will be left with all the damage from all the medications which I fully understand. It makes it horrible to cure this disease then be left with diabetes, addictions and everything else. I hope everything goes well with your infusions and I am so glad they have found something to help. Take care of yourself and remember I am always thinking of you and praying for you. Your friend in Texas, Jeanna From: tiodaat@... Sent: Thursday, May 06, 2004 1:17 AMTo: Neurosarcoidosis Subject: Re: Jeanna--meds & family Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.Love to all, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Debbie dear as for strokes I think I have had about 6 or 7 the last 3 I had numbness & tingles on my right side. I took a nap when I woke up to go to the bathroon I was dizzy and the numbness & tingles came back plus I fell in the bathroom.In 95' I had a stroke.Had headaches on the right side of my head it hurt so bad I went to lay down and woke up on the living room floor.Dx was a stroke & aseptic meningitis. these are the 4 strokes that sound like you. Debbie next time (and I pray there is not a next time for you) go to the ER when you say stroke in the ER they wont waste any time working on you. the sooner they work on you the better the out come is for you I know this is hard to do but please don't drive until they find out what's wrong...........Quint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Debbie dear as for strokes I think I have had about 6 or 7 the last 3 I had numbness & tingles on my right side. I took a nap when I woke up to go to the bathroon I was dizzy and the numbness & tingles came back plus I fell in the bathroom.In 95' I had a stroke.Had headaches on the right side of my head it hurt so bad I went to lay down and woke up on the living room floor.Dx was a stroke & aseptic meningitis. these are the 4 strokes that sound like you. Debbie next time (and I pray there is not a next time for you) go to the ER when you say stroke in the ER they wont waste any time working on you. the sooner they work on you the better the out come is for you I know this is hard to do but please don't drive until they find out what's wrong...........Quint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Debbie dear I forgot to say that my doc put me on plavix(blood thinner) and aspirin(ecotrin) I have'nt had any problems so far.........Qunt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Debbie dear I forgot to say that my doc put me on plavix(blood thinner) and aspirin(ecotrin) I have'nt had any problems so far.........Qunt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Debbie, this episode sounds kind of alarming to me. I think if it gets bad again, you need to go to the E.R. Don't pass GO & don't collect $200. Better safe than sorry. Rose Re: Jeanna--meds & family Tracie, You don't know how much your post has hit home. I had a setback two days ago, and that's all I have been hearing from family about the meds. It's kind of embarrassing but I was going to the bathroom (BM) and I was straining when all of a sudden I got this sudden sharp pain on the left side of my head kind of on top and side of my ear. I finished and got up and I couldn't stand up straight. I kept falling over on my right side and the pain was so bad. I never had anything happen like this before. SO I finally made my way to bed holding onto things to keep me upright. I felt nauseous, dizzy and really bad headache especially on that right side. Icouldn't hold my head up for long. Then I started feeling funny stuff on my right side like tingles , numbness. My husband wanted to take me to the ER, but I didn't want to go. I am so sick of the ER runaround, you know? Luckily, I had a neurologist appt the next day anyway. Yesterday morning, I got up still with the headache and dizzyness but not as bad. My husband wouldn't let me drive and he brought me to my appt. The neurologist is ADD , so you gotta almost pin him down to get him to listen to you. It's awful, thank God I brought my husband cause I had a lot of symptoms to tell him about even before the "little episode" . Well at first he said that I might have pinched a nerve in my neck while straining then he started talking about the possiblity of a type of stroke which centered around that area in the head where I felt it. I forget the name something like hemo - something. SO he decided to do a MRI of my brain and neck again - since "it's been a year since my last one". Well, after he mentioned stroke , I panicked . They scheduled the MRI for next Thursday. What am I supposed to do till then? Today I did some laundry , took care of the dogs, and then I started getting really dizzy, sick to my stomach and leaning over to the right a little. I still have the headache but not as bad as two nights ago. Anyway , sorry for the long post. I just had to vent to people who "are in my shoes" so to speak. Quint, have you had this type of stroke before? Anyone else? I am kinda nervous , I don't think a pinched nerve could do all this , do you? Thanks for listening. Debbie Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.Love to all, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Debbie, this episode sounds kind of alarming to me. I think if it gets bad again, you need to go to the E.R. Don't pass GO & don't collect $200. Better safe than sorry. Rose Re: Jeanna--meds & family Tracie, You don't know how much your post has hit home. I had a setback two days ago, and that's all I have been hearing from family about the meds. It's kind of embarrassing but I was going to the bathroom (BM) and I was straining when all of a sudden I got this sudden sharp pain on the left side of my head kind of on top and side of my ear. I finished and got up and I couldn't stand up straight. I kept falling over on my right side and the pain was so bad. I never had anything happen like this before. SO I finally made my way to bed holding onto things to keep me upright. I felt nauseous, dizzy and really bad headache especially on that right side. Icouldn't hold my head up for long. Then I started feeling funny stuff on my right side like tingles , numbness. My husband wanted to take me to the ER, but I didn't want to go. I am so sick of the ER runaround, you know? Luckily, I had a neurologist appt the next day anyway. Yesterday morning, I got up still with the headache and dizzyness but not as bad. My husband wouldn't let me drive and he brought me to my appt. The neurologist is ADD , so you gotta almost pin him down to get him to listen to you. It's awful, thank God I brought my husband cause I had a lot of symptoms to tell him about even before the "little episode" . Well at first he said that I might have pinched a nerve in my neck while straining then he started talking about the possiblity of a type of stroke which centered around that area in the head where I felt it. I forget the name something like hemo - something. SO he decided to do a MRI of my brain and neck again - since "it's been a year since my last one". Well, after he mentioned stroke , I panicked . They scheduled the MRI for next Thursday. What am I supposed to do till then? Today I did some laundry , took care of the dogs, and then I started getting really dizzy, sick to my stomach and leaning over to the right a little. I still have the headache but not as bad as two nights ago. Anyway , sorry for the long post. I just had to vent to people who "are in my shoes" so to speak. Quint, have you had this type of stroke before? Anyone else? I am kinda nervous , I don't think a pinched nerve could do all this , do you? Thanks for listening. Debbie Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.Love to all, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Debbie, Sounds like this could be serious if I were you i'd have someone get you to the ER the next time like Tracie and some of the others have said you don't want to wait around til morning to find out if it was a stroke its always better safe than sorry. Also I wanted to say congrats on becoming a moderator thats really great and I saw the picks of you and your sons and you guys looked great. You are an attractive young lady and you have some handsome young men. Take care, Jan > > > Date: 2004/05/06 Thu PM 09:51:54 EDT > To: <Neurosarcoidosis > > Subject: Re: Jeanna--meds & family > > Debbie, this episode sounds kind of alarming to me. I think if it gets bad again, you need to go to the E.R. Don't pass GO & don't collect $200. Better safe than sorry. Rose > Re: Jeanna--meds & family > > > Tracie, > You don't know how much your post has hit home. I had a setback two days ago, and that's all I have been hearing from family about the meds. > It's kind of embarrassing but I was going to the bathroom (BM) and I was straining when all of a sudden I got this sudden sharp pain on the left side of my head kind of on top and side of my ear. I finished and got up and I couldn't stand up straight. I kept falling over on my right side and the pain was so bad. I never had anything happen like this before. SO I finally made my way to bed holding onto things to keep me upright. I felt nauseous, dizzy and really bad headache especially on that right side. Icouldn't hold my head up for long. Then I started feeling funny stuff on my right side like tingles , numbness. My husband wanted to take me to the ER, but I didn't want to go. I am so sick of the ER runaround, you know? Luckily, I had a neurologist appt the next day anyway. Yesterday morning, I got up still with the headache and dizzyness but not as bad. My husband wouldn't let me drive and he brought me to my appt. > The neurologist is ADD , so you gotta almost pin him down to get him to listen to you. > It's awful, thank God I brought my husband cause I had a lot of symptoms to tell him about even before the " little episode " . Well at first he said that I might have pinched a nerve in my neck while straining then he started talking about the possiblity of a type of stroke which centered around that area in the head where I felt it. I forget the name something like hemo - something. > SO he decided to do a MRI of my brain and neck again - since " it's been a year since my last one " . Well, after he mentioned stroke , I panicked . They scheduled the MRI for next Thursday. What am I supposed to do till then? Today I did some laundry , took care of the dogs, and then I started getting really dizzy, sick to my stomach and leaning over to the right a little. I still have the headache but not as bad as two nights ago. > Anyway , sorry for the long post. I just had to vent to people who " are in my shoes " so to speak. Quint, have you had this type of stroke before? Anyone else? I am kinda nervous , I don't think a pinched nerve could do all this , do you? > Thanks for listening. Debbie > > > Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you. > > You spoke of how you were releaved that they found more lesions so that you can justify to " mom " how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. > > One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. > > Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under " control. " We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. > > Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay " functioning " this is what we have to do. And this is where the " family " challenge comes in. > > None of us get to take a 10 day course of antibiotics and be free of our " illness. " We aren't " ill. " To me, " ill " is something curable. Sarcoidosis isn't yet " curable. " The best we can do is " control " it-- like the diabetic controls their diabetes. > > I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the " Nerv-(ous), Anxiety, Depression " train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . ) > > But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, " Love, Medicine and Miracles " , the author explains that when someone has cancer, and is told they need chemo-- they have to learn to " visualize " the drug as " a friend, a healer, a vehicle to carry away the cancer " instead of something that is " attacking " their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. > > To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. > > I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can. > > Love to all, Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php > > 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 6, 2004 Report Share Posted May 6, 2004 Oh, Tracie, How clear and eloquent you are! Thank you for this - You're a Treasure to all of us! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Thank you Quint for your response. I can relate to some of the symptoms you mentioned. And yes, I will go right away to the ER. Thanks again for your kind advice. Love, Debbiesarcdog@... wrote: Hi Debbie dear as for strokes I think I have had about 6or 7 the last 3 I had numbness & tingles on my rightside. I took a nap when I woke up to go to the bathroon Iwas dizzy and the numbness & tingles came back plus I fellin the bathroom.In 95' I had a stroke.Had headaches on theright side of my head it hurt so bad I went to lay downand woke up on the living room floor.Dx was a stroke & aseptic meningitis. these are the 4 strokes that sound likeyou. Debbie next time (and I pray there is not a nexttime for you) go to the ER when you say stroke in the ERthey wont waste any time working on you. the soonerthey work on you the better the out come is for you Iknow this is hard to do but please don't drive untilthey find out what's wrong...........Quint ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Thanks Rosie. I appreciate your advice. I won't pass GO and collect $200. Luv, Debbieans wrote: Debbie, this episode sounds kind of alarming to me. I think if it gets bad again, you need to go to the E.R. Don't pass GO & don't collect $200. Better safe than sorry. Rose Re: Jeanna--meds & family Tracie, You don't know how much your post has hit home. I had a setback two days ago, and that's all I have been hearing from family about the meds. It's kind of embarrassing but I was going to the bathroom (BM) and I was straining when all of a sudden I got this sudden sharp pain on the left side of my head kind of on top and side of my ear. I finished and got up and I couldn't stand up straight. I kept falling over on my right side and the pain was so bad. I never had anything happen like this before. SO I finally made my way to bed holding onto things to keep me upright. I felt nauseous, dizzy and really bad headache especially on that right side. Icouldn't hold my head up for long. Then I started feeling funny stuff on my right side like tingles , numbness. My husband wanted to take me to the ER, but I didn't want to go. I am so sick of the ER runaround, you know? Luckily, I had a neurologist appt the next day anyway. Yesterday morning, I got up still with the headache and dizzyness but not as bad. My husband wouldn't let me drive and he brought me to my appt. The neurologist is ADD , so you gotta almost pin him down to get him to listen to you. It's awful, thank God I brought my husband cause I had a lot of symptoms to tell him about even before the "little episode" . Well at first he said that I might have pinched a nerve in my neck while straining then he started talking about the possiblity of a type of stroke which centered around that area in the head where I felt it. I forget the name something like hemo - something. SO he decided to do a MRI of my brain and neck again - since "it's been a year since my last one". Well, after he mentioned stroke , I panicked . They scheduled the MRI for next Thursday. What am I supposed to do till then? Today I did some laundry , took care of the dogs, and then I started getting really dizzy, sick to my stomach and leaning over to the right a little. I still have the headache but not as bad as two nights ago. Anyway , sorry for the long post. I just had to vent to people who "are in my shoes" so to speak. Quint, have you had this type of stroke before? Anyone else? I am kinda nervous , I don't think a pinched nerve could do all this , do you? Thanks for listening. Debbie Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.Love to all, Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Yeah, I know ........I have everyone telling me I should have gone right away. Believe me , I will take their advice. Thanks for the congrats and the compliments on the pix. I may be prejudice, but I DO think my boys are handsome! LOL PS My oldest came home from college last night. So he will be around to help me for awhile until he starts working. He's happy cause he gets to use my car!! Luv, DebbieJan wrote: Debbie,Sounds like this could be serious if I were you i'd have someone get you to the ER the next time like Tracie and some of the others have said you don't want to wait around til morning to find out if it was a stroke its always better safe than sorry.Also I wanted to say congrats on becoming a moderator thats really great and I saw the picks of you and your sons and you guys looked great. You are an attractive young lady and you have some handsome young men.Take care,Jan> > From: "Rose " > Date: 2004/05/06 Thu PM 09:51:54 EDT> To: > Subject: Re: Jeanna--meds & family> > Debbie, this episode sounds kind of alarming to me. I think if it gets bad again, you need to go to the E.R. Don't pass GO & don't collect $200. Better safe than sorry. Rose> Re: Jeanna--meds & family> > > Tracie, > You don't know how much your post has hit home. I had a setback two days ago, and that's all I have been hearing from family about the meds.> It's kind of embarrassing but I was going to the bathroom (BM) and I was straining when all of a sudden I got this sudden sharp pain on the left side of my head kind of on top and side of my ear. I finished and got up and I couldn't stand up straight. I kept falling over on my right side and the pain was so bad. I never had anything happen like this before. SO I finally made my way to bed holding onto things to keep me upright. I felt nauseous, dizzy and really bad headache especially on that right side. Icouldn't hold my head up for long. Then I started feeling funny stuff on my right side like tingles , numbness. My husband wanted to take me to the ER, but I didn't want to go. I am so sick of the ER runaround, you know? Luckily, I had a neurologist appt the next day anyway. Yesterday morning, I got up still with the headache and dizzyness but not as bad. My husband wouldn't let me drive and he brought me to my appt. > The neurologist is ADD , so you gotta almost pin him down to get him to listen to you.> It's awful, thank God I brought my husband cause I had a lot of symptoms to tell him about even before the "little episode" . Well at first he said that I might have pinched a nerve in my neck while straining then he started talking about the possiblity of a type of stroke which centered around that area in the head where I felt it. I forget the name something like hemo - something. > SO he decided to do a MRI of my brain and neck again - since "it's been a year since my last one". Well, after he mentioned stroke , I panicked . They scheduled the MRI for next Thursday. What am I supposed to do till then? Today I did some laundry , took care of the dogs, and then I started getting really dizzy, sick to my stomach and leaning over to the right a little. I still have the headache but not as bad as two nights ago.> Anyway , sorry for the long post. I just had to vent to people who "are in my shoes" so to speak. Quint, have you had this type of stroke before? Anyone else? I am kinda nervous , I don't think a pinched nerve could do all this , do you?> Thanks for listening. Debbie> > > Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you.> > You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. > > One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. > > Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. > > Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. > > None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. > > I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . )> > But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. > > To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. > > I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can.> > Love to all, Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php> > 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 8, 2004 Report Share Posted May 8, 2004 Rose, I some how misquoted my mom, is that a word. She doesn't necessarily think I don't need the meds she is just worried that when everything is said and done and possibly they find a cure for this mess I will be left with all the damage from side effects from the meds I am taking. It just becomes overwhelming I guess when all I hear is what the meds are doing to me. I can't function without them so to me there is no question as to whether I take them or not it is quality rather than quanity anymore. Thanks for caring, Your friend in Texas, Jeanna PS how are things going for wedding plans. I have gone to one shower, picked out dress I am going to wear. It is hard to believe it is only about 7 weeks and my baby will be married June 26. Talk at you later. > >Reply-To: Neurosarcoidosis >To: <Neurosarcoidosis > >Subject: Re: Jeanna--meds & family >Date: Thu, 6 May 2004 18:37:29 -0500 > >Jeanna, has your mother ever gone to a doctor's appointment with you? One of the doctors with good sense. Maybe if she heard from doctor why you take the various meds, it would stick. It's annoying, but my mother is one of those who think doctors, all doctors, are right up there with God. So I am taking her with me next week when I go to the psychiatrist, in hopes that the "doctor" can convince her that ADD requires more than will power & believing "there's a place for everything and everything in its place." I have a place for everything; unfortunately, those places are the kitchen counters, kitchen floor, coffee table, etc. Moms, you gotta love 'em. Rose > Re: Jeanna--meds & family > > > Lady, you are such an inspiration for me. Despite the severity of your illness, you always find a kind word for the rest of us. Thank you. > > You spoke of how you were releaved that they found more lesions so that you can justify to "mom" how much you need the meds you're on. I know this is an issue for all of us-- and I know that everyone of us would gladly give up as many of our meds that we can. > > One of the things that is helping me, is that I have had to reframe the use of my medications. I explain that if I were a diabetic, there wouldn't be a question or issue that I would need insulin to manage my diabetes. > > Well, we are all fighting a disease that effects each of us in both similar ways and yet very differently. We need the anti-depressants, the seizure medications, to manage our pain, help us sleep, and to keep the neuropathic pain under "control." We need the steroids to shrink the tumors, and hopefully keep new ones from forming. We need the insulin to treat the diabetes caused by the steroids, and we need the blood pressure medication to keep our bp under-control-- which is also caused by the steroids. > > Rather than beat ourselves up over needing our medications-- we finally come to a place of acceptance that to stay "functioning" this is what we have to do. And this is where the "family" challenge comes in. > > None of us get to take a 10 day course of antibiotics and be free of our "illness." We aren't "ill." To me, "ill" is something curable. Sarcoidosis isn't yet "curable." The best we can do is "control" it-- like the diabetic controls their diabetes. > > I've been thinking that maybe what my mom was saying is that the nerves in my arms and hands are shorting out, and that is why I have the pain and numbness. My reaction was to jump on the "Nerv-(ous), Anxiety, Depression" train and then derail her with my defensiveness. We are so used to having to defend, that I'm not sure that I was right in my reaction to her comment. (I will have to check this out this week. . ) > > But my real point here is that while all of us would give most any body part to eliminate medications from our routine-- we have to have them to exist. In the book, "Love, Medicine and Miracles", the author explains that when someone has cancer, and is told they need chemo-- they have to learn to "visualize" the drug as "a friend, a healer, a vehicle to carry away the cancer" instead of something that is "attacking" their bodies. They teach that seeing the medication helping and working gently to do its job, that the side effects were greatly lessened. > > To my way of thinking-- this is a much gentler way of approaching my healing-- and from personal experience-- it works for me. > > I wish for all of us to be able to see past the outside worlds process, embrace our own, and know in our hearts that we are doing the best we can. > > Love to all, Tracie > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://health.groups.yahoo.com/group/Neurosarcoidosis/chat.php > > 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 8, 2004 Report Share Posted May 8, 2004 Jeanna, I was reading your stuff on the meds, and on "mom's concerns", and I so totally understand both her concerns and yours. We know we can't function without the meds, and yes, the price on our bodies may be extremely high later in life. But without them, the price, the qualify of the life we have now is way to high. I also know that if we life in "fear" of what "might" happen, we are going to miss out on alot of joy. We both know that these physical bodies are just a temporary house, and that it is our duty to make the best out of what we've been given. Once these physical bodies are gone, then the real party begins. With loving compassion, Tracie Quote Link to comment Share on other sites More sharing options...
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