Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Hi Rose, I'm sorry your hurting so bad, it might not all be from the back, I get severe L leg pain, down the mid to outer thigh area down to the little toe, so bad I want to cut my toe off, not kidding, and it's all NS! but the warm helps mine too, I wish I had a hot tub, as getting in the regular tub, the water goes cold to fast then I hurt even more. I have an electric throw blanket for my chair. Stress can bring these pains on too. I'm praying for a better day for you Rose.We are doing OK here, just real quiet, we miss you of course but family needs to always come first. I'm glad you found Ginny and I will pray she follows up, that must be so very hard. I took my Mom to the Airport last night, Thank God I have my daughter to help, she loves to go, it's like Disneyland she says. It's Denver International so we have those crazy trains, and she like to eat there, even if it cost 3 X more:) She earns it by pushing her Mom all over the place. Well my Mom after check in, lost her ID, I said here hold this with this boarding ticket, then we get to security check in, and she can't find her ID anywhere, she said well I put it in my pocket, so we had to stop, I said check your purse, she kept showing me her Debit card, no Mom the one with your picture, finally after 10 people got in front of us, she found it in the bottom of her purse:) after that it was OK, my daughter is a trooper pushing her Mom all over the place in the wheelchair, she's getting better at it every time. So my Mom will be visiting her sister in Tulsa, OK this month and maybe next, her sister would love for her to live there, but that's just too much on my cousin who isn't very well either. I hope my Mom can stay for awhile and have a good time. She's a sweetie, she'll be 90 this August. Anyway, got off track, Hang in there Rose, we are all pulling for you:) I know those phones are hard to do email, do you have the one with voice or swipe, I do and it makes it so much easier to use. I've turned into the emailing Mama. Take your time, feel better, I'm trying to stay on top of things. Love ya, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community 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 March 3, 2011 Report Share Posted March 3, 2011 Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Rose, I know you are the expert on your body. But are you sure you don't have a little DVT going there? It worries me that your leg is hurting that bad, and that extensively. I hope you get better soon, and life gets less stressful. I always miss you when your not able to be online. Your in my Prayers, Connie To: "Neurosarcoidosis " <Neurosarcoidosis >Sent: Thu, March 3, 2011 1:20:47 PMSubject: ChaosSorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Rose I am sorry that you are feeling bad. I pray that God will make things easier for you really soon. I will keep you and your daughter in my prayers. Unfortunately, staying clean is something that she has to want and do for herself. Please try not to stress too much. Stress can bring on flares and pain as well. Please feel better soon. HUGS To: Neurosarcoidosis Sent: Thu, March 3, 2011 11:33:49 PMSubject: Re: Chaos Rose, I know you are the expert on your body. But are you sure you don't have a little DVT going there? It worries me that your leg is hurting that bad, and that extensively. I hope you get better soon, and life gets less stressful. I always miss you when your not able to be online. Your in my Prayers, Connie To: "Neurosarcoidosis " <Neurosarcoidosis >Sent: Thu, March 3, 2011 1:20:47 PMSubject: ChaosSorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 I hope you get some relief soon. Seems everyone is having issues. Been a bit dicey here as well. The past few days has been disoriented. Hope everyone is feeling better soon.MattSubject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 1:20 PMSorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 I'm so sorry, Rose, to see your issues compounded by leg and spinal pain. I am also concerned about you having to deal with Ginny once again. I will be praying for you, my friend!To: "Neurosarcoidosis " <Neurosarcoidosis >Sent: Thu, March 3, 2011 1:20:47 PMSubject: Chaos Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 , You couldn't of said it better. Rose do take care of yourself. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S. Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: " Neurosarcoidosis " <Neurosarcoidosis > Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community 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 March 6, 2011 Report Share Posted March 6, 2011 I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos , You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2011 Report Share Posted March 6, 2011 praying for some comfort and pain free days ahead. Take care of YOU Jackie ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A fr iend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Rose, my boys are nicest when someone else is around(their girlfriends) or when they want something(money). I love them to pieces but I'll be glad when they get a bit older and more mature. They have such a different mindset. They act like they know it all which couldn't be farthest from the truth. I only stick my neck out to say somethingwhen i thinkit really needs to be said. But still they do what they do. Rose, I am also in a bad place. Too much pain, notleaving the house for months at a time. Jealous of my nephew who went to the hospital for treatment of his migraines and now he is migraine-free. Happy for them cuz his wife is due for their first child in a few weeks so what a great time to be healed. ...but jealous. so jealous that i could cry. Why can't they come up with a medication to heal me?.....sigh. I NEED to get out of the house and do something for ME. But i have little energy to do anything. I think my mom's health problems and my oldest brother dying has taken a toll on me emotionally and February/March are already tough months for me. Right now I need to put myself on the TOP of my to-do list. I need to fill up my cup til it's overflowing then i 'might' have something to give to someone else. HEY!...my youngest son paid me back about $400 last week.....so there's hope! lol hugs and hang in there! S. Subject: RE: ChaosTo: neurosarcoidosis Date: Monday, March 7, 2011, 1:44 AM I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos , You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Rose, Do call your Doc today, sorry for the big words but I'm having trouble with my sight today, and the worse burning on the side of my face, like the worse sunburn you can get, you can't touch it without it hurting, my whole left side is so numb, it's funny to have my face so numb, and so painful at the same time. I get my Remicade on Wed. I was thinking of calling my doc too, see if I could maybe get a dose of steroid before the Remicade, wonder if that's even OK. I'm sorry, your hurting Rose, I can so relate, I think the stress is putting you in a flare, man I wish we could just keep stress out of our life's, I know that's what's making mine worse. My husbands BP been up again, he came home today from golfing (that's right we've had no snow to speak of, and I l want some) anyway he was complaining of his legs and arms feeling tingling, his BP was up, he took a nitro, and felt better, and his BP, of course going to the hosp to get checked out, No. I've asked him to move up his appt. Rose do what you need to do for yourself right now, if you get really sick you won't be able to help at all. your kids are grown, and the hardest thing sometimes is letting go and letting them learn, on their own. Hang in there, keep us informed, take care. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator " I child-proofed my home and they STILL get in! " (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700 Subject: Re: Chaos , You couldn't of said it better. Rose do take care of yourself. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S. Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: " Neurosarcoidosis " <Neurosarcoidosis > Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community 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 March 7, 2011 Report Share Posted March 7, 2011 I will keep you all in my prayers. Seems it has been a tough few weeks for many. Please stay as well as you can. One can only hope that they find medicines that will work for this nasty, nasty illness.Matt Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Thank you, Marla. I called my PCP this morning; they couldn't get me in to the doctor, but had an opening with the nurse-practitioner. I didn't know he had a NP; I guess she just started. I was happy to see her, you know I'm a little bit biased toward advanced practice nurses! Turns out she used to be one of the L & D nurses and went back to school since I retired. She was an excellent nurse, so I was very comfortable seeing her. I think I hit the jackpot. She asked if I was interested in getting a second opinion on surgery, since all my usual tricks including the mindfulness meditation aren't working. It seems like I'm getting a little foot drop, which is new, so I'm going to get that referral. She also put me on a 20-day Pred taper, to reduce inflammation. Hopefully that will take care of the problem. If not, I will at least talk to the surgeon. I doubt I'd have surgery, but I'm still interested in what he thinks. (Sorry, Mitch, but in 30 years of back problems, I've never experienced anything close to this.) She also gave me a Vicodin script. I took two (10mg each) when I got home, and Hallelujah! what relief. I also had ringing in my ears & light-headedness for 2 or 3 hours, but I really needed that respite from pain. I'm only going to take one Vicodin next time; as long as I get some relief I'll be happy. I don't like taking pain pills, plus I have to find a good hiding place from Ginny, but maybe between the Vicodin & the short-term Pred, I'll get straightened out & go back to the usual back & leg pain. I can function with that. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Mon, 7 Mar 2011 13:40:21 -0700Subject: Re: Chaos Rose, Do call your Doc today, sorry for the big words but I'm having trouble with my sight today, and the worse burning on the side of my face, like the worse sunburn you can get, you can't touch it without it hurting, my whole left side is so numb, it's funny to have my face so numb, and so painful at the same time. I get my Remicade on Wed. I was thinking of calling my doc too, see if I could maybe get a dose of steroid before the Remicade, wonder if that's even OK.I'm sorry, your hurting Rose, I can so relate, I think the stress is putting you in a flare, man I wish we could just keep stress out of our life's, I know that's what's making mine worse. My husbands BP been up again, he came home today from golfing (that's right we've had no snow to speak of, and I l want some) anyway he was complaining of his legs and arms feeling tingling, his BP was up, he took a nitro, and felt better, and his BP, of course going to the hosp to get checked out, No. I've asked him to move up his appt. Rose do what you need to do for yourself right now, if you get really sick you won't be able to help at all. your kids are grown, and the hardest thing sometimes is letting go and letting them learn, on their own. Hang in there, keep us informed, take care. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos, You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Good thinking, Connie! I did consider DVT, but after a careful assessment (I don't know if you remember that I'm a retired certified nurse-midwife) I pretty much ruled that out. I did get checked out today; you can read all about it in my reply to Marla. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: conaugusta@...Date: Thu, 3 Mar 2011 20:33:49 -0800Subject: Re: Chaos Rose, I know you are the expert on your body. But are you sure you don't have a little DVT going there? It worries me that your leg is hurting that bad, and that extensively. I hope you get better soon, and life gets less stressful. I always miss you when your not able to be online. Your in my Prayers, Connie To: "Neurosarcoidosis " <Neurosarcoidosis >Sent: Thu, March 3, 2011 1:20:47 PMSubject: ChaosSorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Just wanted to say how sorry I am to hear about your daughter's drug problems. My youngest brother had dreadful problems with drugs from age 12 until he died from drug-related complications (enlarged heart etc) 3 years ago, aged 27. It is devastating on the family, I can totally sympathise. xxoo > Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I ..move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > > 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 March 8, 2011 Report Share Posted March 8, 2011 I only know one thing to say Rose. I'm sorry, I know it hurts like crazy. I'll be praying...c To: neurosarcoidosis Sent: Sun, March 6, 2011 8:44:22 PMSubject: RE: Chaos I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos, You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Do you remember thinking.."I can't wait till they get a little older"...... To: Neurosarcoidosis Sent: Mon, March 7, 2011 3:40:30 AMSubject: RE: Chaos Rose, my boys are nicest when someone else is around(their girlfriends) or when they want something(money). I love them to pieces but I'll be glad when they get a bit older and more mature. They have such a different mindset. They act like they know it all which couldn't be farthest from the truth. I only stick my neck out to say somethingwhen i thinkit really needs to be said. But still they do what they do. Rose, I am also in a bad place. Too much pain, notleaving the house for months at a time. Jealous of my nephew who went to the hospital for treatment of his migraines and now he is migraine-free. Happy for them cuz his wife is due for their first child in a few weeks so what a great time to be healed. ...but jealous. so jealous that i could cry. Why can't they come up with a medication to heal me?.....sigh. I NEED to get out of the house and do something for ME. But i have little energy to do anything. I think my mom's health problems and my oldest brother dying has taken a toll on me emotionally and February/March are already tough months for me. Right now I need to put myself on the TOP of my to-do list. I need to fill up my cup til it's overflowing then i 'might' have something to give to someone else. HEY!...my youngest son paid me back about $400 last week.....so there's hope! lol hugs and hang in there! S. Subject: RE: ChaosTo: neurosarcoidosis Date: Monday, March 7, 2011, 1:44 AM I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos, You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 I'm glad you got some relief Rose, maybe they will have some long term answer. I don't exactly know what your problem is, but you may want to ask about interventional radiology-kyphoplasty, etc. I am looking into it to have my neck repaired, you don't have to have general anesthesia (which is my major roadblock to repair) and it builds the compressed vertebrae back up and off the nerves. We'll see To: neurosarcoidosis Sent: Tue, March 8, 2011 12:09:12 AMSubject: RE: Chaos Thank you, Marla. I called my PCP this morning; they couldn't get me in to the doctor, but had an opening with the nurse-practitioner. I didn't know he had a NP; I guess she just started. I was happy to see her, you know I'm a little bit biased toward advanced practice nurses! Turns out she used to be one of the L & D nurses and went back to school since I retired. She was an excellent nurse, so I was very comfortable seeing her. I think I hit the jackpot. She asked if I was interested in getting a second opinion on surgery, since all my usual tricks including the mindfulness meditation aren't working. It seems like I'm getting a little foot drop, which is new, so I'm going to get that referral. She also put me on a 20-day Pred taper, to reduce inflammation. Hopefully that will take care of the problem. If not, I will at least talk to the surgeon. I doubt I'd have surgery, but I'm still interested in what he thinks. (Sorry, Mitch, but in 30 years of back problems, I've never experienced anything close to this.) She also gave me a Vicodin script. I took two (10mg each) when I got home, and Hallelujah! what relief. I also had ringing in my ears & light-headedness for 2 or 3 hours, but I really needed that respite from pain. I'm only going to take one Vicodin next time; as long as I get some relief I'll be happy. I don't like taking pain pills, plus I have to find a good hiding place from Ginny, but maybe between the Vicodin & the short-term Pred, I'll get straightened out & go back to the usual back & leg pain. I can function with that. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Mon, 7 Mar 2011 13:40:21 -0700Subject: Re: ChaosRose, Do call your Doc today, sorry for the big words but I'm having trouble with my sight today, and the worse burning on the side of my face, like the worse sunburn you can get, you can't touch it without it hurting, my whole left side is so numb, it's funny to have my face so numb, and so painful at the same time. I get my Remicade on Wed. I was thinking of calling my doc too, see if I could maybe get a dose of steroid before the Remicade, wonder if that's even OK.I'm sorry, your hurting Rose, I can so relate, I think the stress is putting you in a flare, man I wish we could just keep stress out of our life's, I know that's what's making mine worse. My husbands BP been up again, he came home today from golfing (that's right we've had no snow to speak of, and I l want some) anyway he was complaining of his legs and arms feeling tingling, his BP was up, he took a nitro, and felt better, and his BP, of course going to the hosp to get checked out, No. I've asked him to move up his appt. Rose do what you need to do for yourself right now, if you get really sick you won't be able to help at all. your kids are grown, and the hardest thing sometimes is letting go and letting them learn, on their own. Hang in there, keep us informed, take care. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos, You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Sorry Rose, I didn't mean to be a smart aleck. My memory is a file drawer with the bottom rusted out. I glad that was not what it was, you don't need anymore on your plate. I was glad to hear you got to see someone, pain begins to wear your thin and it doesn't take long to do it. I know, I know, I'm preaching to the choir. Take care, c To: neurosarcoidosis Sent: Tue, March 8, 2011 12:17:38 AMSubject: RE: Chaos Good thinking, Connie! I did consider DVT, but after a careful assessment (I don't know if you remember that I'm a retired certified nurse-midwife) I pretty much ruled that out. I did get checked out today; you can read all about it in my reply to Marla. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: conaugusta@...Date: Thu, 3 Mar 2011 20:33:49 -0800Subject: Re: Chaos Rose, I know you are the expert on your body. But are you sure you don't have a little DVT going there? It worries me that your leg is hurting that bad, and that extensively. I hope you get better soon, and life gets less stressful. I always miss you when your not able to be online. Your in my Prayers, Connie To: "Neurosarcoidosis " <Neurosarcoidosis >Sent: Thu, March 3, 2011 1:20:47 PMSubject: ChaosSorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Rose I hope that you feel better as well. Marla I too am having trouble with my eye sight. The medicine they gave me for my eyes is making it harder to see. The meds dilate my eyes and everything is blurry. So unfortunately, I will not be on the computer for a while. I pray that everyone will get better because we seem like we are all going through a crisis. Everyone hang in there and try to remain faithful. Best regards to everyone and well wishes to everyone. Hope to log on periodically to say hello to everyone. Some days the sight is better that others. So I will log on and say hello to eveyone when I can. To: Neurosarcoidosis Sent: Mon, March 7, 2011 3:40:21 PMSubject: Re: Chaos Rose, Do call your Doc today, sorry for the big words but I'm having trouble with my sight today, and the worse burning on the side of my face, like the worse sunburn you can get, you can't touch it without it hurting, my whole left side is so numb, it's funny to have my face so numb, and so painful at the same time. I get my Remicade on Wed. I was thinking of calling my doc too, see if I could maybe get a dose of steroid before the Remicade, wonder if that's even OK.I'm sorry, your hurting Rose, I can so relate, I think the stress is putting you in a flare, man I wish we could just keep stress out of our life's, I know that's what's making mine worse. My husbands BP been up again, he came home today from golfing (that's right we've had no snow to speak of, and I l want some) anyway he was complaining of his legs and arms feeling tingling, his BP was up, he took a nitro, and felt better, and his BP, of course going to the hosp to get checked out, No. I've asked him to move up his appt. Rose do what you need to do for yourself right now, if you get really sick you won't be able to help at all. your kids are grown, and the hardest thing sometimes is letting go and letting them learn, on their own. Hang in there, keep us informed, take care. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: mebramer@...Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos, You couldn't of said it better. Rose do take care of yourself. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: "Neurosarcoidosis " <Neurosarcoidosis >Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Thanks La, take care of yourself, check in when you can, but take care of yourself. I'll be praying for you, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Rose I hope that you feel better as well. Marla I too am having trouble with my eye sight. The medicine they gave me for my eyes is making it harder to see. The meds dilate my eyes and everything is blurry. So unfortunately, I will not be on the computer for a while. I pray that everyone will get better because we seem like we are all going through a crisis. Everyone hang in there and try to remain faithful. Best regards to everyone and well wishes to everyone. Hope to log on periodically to say hello to everyone. Some days the sight is better that others. So I will log on and say hello to eveyone when I can. To: Neurosarcoidosis Sent: Mon, March 7, 2011 3:40:21 PMSubject: Re: Chaos Rose, Do call your Doc today, sorry for the big words but I'm having trouble with my sight today, and the worse burning on the side of my face, like the worse sunburn you can get, you can't touch it without it hurting, my whole left side is so numb, it's funny to have my face so numb, and so painful at the same time. I get my Remicade on Wed. I was thinking of calling my doc too, see if I could maybe get a dose of steroid before the Remicade, wonder if that's even OK. I'm sorry, your hurting Rose, I can so relate, I think the stress is putting you in a flare, man I wish we could just keep stress out of our life's, I know that's what's making mine worse. My husbands BP been up again, he came home today from golfing (that's right we've had no snow to speak of, and I l want some) anyway he was complaining of his legs and arms feeling tingling, his BP was up, he took a nitro, and felt better, and his BP, of course going to the hosp to get checked out, No. I've asked him to move up his appt. Rose do what you need to do for yourself right now, if you get really sick you won't be able to help at all. your kids are grown, and the hardest thing sometimes is letting go and letting them learn, on their own. Hang in there, keep us informed, take care. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb I appreciate all the replies. , my head knows you are right, but it's hard when they call or just show up. I don't which is worse--when she's doped up or belligerent, or when she's overly nice & slobbering all over me. I was supposed to go get a gift for my great-nephew's first birthday Sat., but really didn't feel like going to the store. I mentioned it to Ginny & she offered to go for me. I told her what to get at WalMart, but she got the wrong toy (something totally inappropriate for a one-year old) & instead of the onesie size I told her, she got one way too big, plus it looks like an old-time prison outfit! It's actually an old-time football outfit (horitzontal brown & yellow stripes), but it looks like a prison uniform. I guess I should appreciate her offering to go for me, but I really wish I had gone myself. She also bought my 9-year old grandson a new cell phone for over $100! He had a perfectly good phone (I don't think a 9-year old even needs a phone) that had a camera & text messaging. Why on earth spend over $100 when she is always poor mouthing about how she can't afford groceries, plus she could have used that money to fix her illegal noisy car! If she gets a ticket, she'll be griping that she can't pay it. Oh well, worry about what you can control, right? Right now I'm still in a lot of pain. Just getting up to the bathroom or fixing something to eat increases the pain a lot. The hot tub helps, so I'm getting in again in a bit. None of my tricks have really done much to help this, so I guess I'll call my doc tomorrow. Ramblin' RoseModerator " I child-proofed my home and they STILL get in! " (Bumper sticker) To: Neurosarcoidosis From: mebramer@... Date: Sat, 5 Mar 2011 18:31:28 -0700Subject: Re: Chaos, You couldn't of said it better. Rose do take care of yourself. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Rose, hang in there. it seems like everyone is going through a rough patch right now. We will always worry about the stuff our kids get themselves into. But they are grownups and need to handle more of this on their own. If you are suffering physically you need to concentrate on you right now. Do everything you know you need to do for yourself and let the experts handle your daughter. Stress may be a factor in your recovery. Lots of love and hugs! S. Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: ChaosTo: " Neurosarcoidosis " <Neurosarcoidosis > Date: Thursday, March 3, 2011, 6:20 PM Sorry I've been AWOL again. The last week has been difficult due to my daughter Ginny's drug issues. After several incidents, she went into a treatment center for 4 days. She says she's going to follow up.with aftercare, but she always says that. On top of that, i've been having severe left leg pain for a few days, from my old messed-up spine. During the night the pain went from a dull ache to severe cramping, from my hip to my ankle, just on the outside of my leg. Got in the hot tub, which helped some, started back on baclofen & did my MBSR. It's a little better--I've got 3 big hot rice sox all along my leg! I cancelled an appt with my sarc doc today because I don't think I could make the hour's drive each way. I have tons of stuff to do, but it hurts so much when I .move around. I'm typing this on my cell phone; it hurts too much to sit at thee computer. I'm going to ask my daughter to bring in her laptop later as it's hard to type on this phone. Anyway. A friend once told me that God brings order out of chaos, but I guess you have to have the chaos first! So I'll try to get online later & catch up with everybody.. ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community 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 March 8, 2011 Report Share Posted March 8, 2011 La, did your doc tell you to expect blurry vision as a side effect? If not, call & let them know. There might be something they can do. Re: Chaos Rose, Do call your Doc today, sorry for the big words but I'm having trouble with my sight today, and the worse burning on the side of my face, like the worse sunburn you can get, you can't touch it with Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Oh yeah. Now it's like toddlers who can drive. RE: Chaos Rose, my boys are nicest when someone else is around(their girlfriends) or when they want something(money). I love them to pieces but I'll be glad when they get a bit older and more mature. They have such a different mindset. They act like they know it all which couldn't be farthest from the truth. I only stick my neck out to say somethingwhen i thinkit really needs to be said. But still they do what they do. Rose, I am also in a bad place. Too much pain, notleaving the house for months at a time. Jealous of my nephew who went to the hospital for treatment of his migraines and now he is migraine-free. Happy for them cuz his wife is due for their first child in a few weeks so what a great time to be healed. ...but jealous. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Connie, I appreciate your input. Sometimes we can't see the forest for the squirrels & birds (I enjoy making up my own metaphors; a friend calls me the Metaphor Queen!). RE: Chaos Good thinking, Connie! I did consider DVT, but after a careful assessment (I don't know if you remember that I'm a retired certified nurse-midwife) I pretty much ruled that out. I did get checked out today; you can read all about it in my reply to Marla. Ramblin' Rose Moderator " I child-proofed my home and they STILL get in! " (Bumper sticker) ________________________________ To: Neurosarcoidosis From: conaugusta@... Date: Thu, 3 Mar 201 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Connie, I'm having an MRI Monday to see what changes are there. I'll see the doc with some questions about options. I'll add that one tp the list! RE: Chaos Thank you, Marla. I called my PCP this morning; they couldn't get me in to the doctor, but had an opening with the nurse-practitioner. I didn't know he had a NP; I guess she just started. I was happy to see her, you know I'm a little bit biased toward advanced practice nurses! Turns out she used to be one of the L & D nurses and went back to school since I retired. She was an excellent nurse, so I was very Quote Link to comment Share on other sites More sharing options...
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