Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 It has been such a quiet weekend, I am just checking in on everyone, making sure you are all alright. Missed hearing from everyone and hope you have all been off enjoying wonderful weekends and not laying suffering. Will look forward to hearing from everyone as the week gets going . What has happened to all of our new members? You have all gotten so quiet. Check in and let us know how you are doing. We think of you and wonder how you are doing when you are quiet. Take care, Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Kim, First I wanted to thank you for checking in on everyone. I know how much you have to get done this upcoming week, and you do so much to keep us going. A GAZILLION THANK YOUS!!!!!!!! Joan and Gusippee(sp) Let me apologize about the mispelling--my brain is mush. That being said, I too am having episodes of brainlessness. I will answer someone's questions with "off-the-wall" answers, and have no idea what I said. I start to say something, and stop before I get going, but have NO idea what I was going to say. Like Joan, these seem to happen when I get more tired, but that's all the time--so who knows. About me-- I had my 1st Remicade infusion Friday-- and have spent most of the weekend sleeping. I'm noticing that my brain feels too big for my head, and that I'm "fuzzy" thinking, but that seems to be the only side effect. Actually, I figure this is good, because it means that the Remicade is in my brain, helping to put back the connections that I've lost to the NS vasculitis. My body pain is less, so that is very good. I'll be calling the Rheumatologist tomorrow and see if he thinks that we need to start on the regular start-up of the 1st infusion, then 2 wks later, a second infusion, then 4 weeks out a 3rd. After that, we will try 8 week intervals. I'm hoping that he will do it this way, since it's been 8 months since I last had the drug, and that way we can jumpstart this program and get me under control faster. Guys, if you have questions, please come out and ask. We are all in flare right now, but all of the moderator's and owners are here, checking in. If you don't get a response in a day or so, then ask again, or resend your email with an extra note-- and we'll try to get right on it. It's unusual for all of us to be messed up at one time, but we are commited (or should be) to making sure you have access to the answers you need to help you get the care you deserve. Wishing us all well, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Kim, you are so good at checkin in for everyone. It is just so hot and ultra-humid today that I am just laying as still as possible or else I get abdominal pain and intestinal cramps and worse. I ran out of my msm and milk thistle, too, and my husband forgot to run and get me some. I think the heat got to him, too, and we both had to take naps today. I hope you are taking it easy with all that packing. I've moved many times and even if you're feeling half-way healthy it takes alot out of you...much less than being so very sick. So please take care. hugs S.NeuroSarcoid66@... wrote: It has been such a quiet weekend, I am just checking in on everyone, making sure you are all alright. Missed hearing from everyone and hope you have all been off enjoying wonderful weekends and not laying suffering. Will look forward to hearing from everyone as the week gets going . What has happened to all of our new members? You have all gotten so quiet. Check in and let us know how you are doing. We think of you and wonder how you are doing when you are quiet. Take care, Kim NS Moderator__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Glad that you are able to take some rest during the daytime, and that your hubby can join you during your siestas! What a nice treat . I am so anxious to get home, since school has been out I honestly do not remember the meaning of resting in the day or evening, even if I am laying down, it is not an honest rest. The kids are driving me batty eyed. I have to pace myself with the packing, there really isnt so much, it really does seem like it though. I have the hardest time taping boxes, my arm becomes totally limp after taping a couple boxes, I hate this flipping arm of mine. Take care Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 I have to pace myself with the packing, there really isnt so much, it really does seem like it though. I have the hardest time taping boxes, my arm becomes totally limp after taping a couple boxes, I hate this flipping arm of mine. Take care Kim NS Moderator Kim, Can't help you with taping the boxes? I think he would be able to handle this...?... Joan "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 .. I have the hardest time taping boxes, my arm becomes totally limp after taping a couple boxes, I hate this flipping arm of mine. Kim, You pack the boxes, then get the 10 yo and 16yo to tape them. They can do that part. Heck, your youngest would love to help with that part, and would be able to do it with a bit of help from the others. Rest my dear, you know how much a danger this is. We want you to be able to leave for home in a couple more weeks, not be in the hospital with a stroke. Love ya, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Kim...please don't try to do all this packing yourself cuz you could hurt yourself. What would you tell one of us to do in the same situation???...ASK for help. I guess one thing we do have to remember is to schedule more time than usual to get these types of things done. I don't think I'll ever be able to move as quickly as I used to. Pace yourself and really truly try to find times of lying down and resting even if you can't really sleep...even that makes a world of difference doesn't it? hugs S.NeuroSarcoid66@... wrote: Glad that you are able to take some rest during the daytime, and that your hubby can join you during your siestas! What a nice treat . I am so anxious to get home, since school has been out I honestly do not remember the meaning of resting in the day or evening, even if I am laying down, it is not an honest rest. The kids are driving me batty eyed. I have to pace myself with the packing, there really isnt so much, it really does seem like it though. I have the hardest time taping boxes, my arm becomes totally limp after taping a couple boxes, I hate this flipping arm of mine. Take care Kim NS Moderator Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Tracie, I am so glad you got your Remicade treatment re started and will pray for the best results ever!! I'm glad the pain is less, something i am stuggling with right now. I see my doc tomorrow. God Bless, Marla -----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of tiodaat@...Sent: Sunday, July 24, 2005 11:02 PMTo: Neurosarcoidosis Subject: Re: Everyone is So QuietKim,First I wanted to thank you for checking in on everyone. I know how much you have to get done this upcoming week, and you do so much to keep us going. A GAZILLION THANK YOUS!!!!!!!!Joan and Gusippee(sp)Let me apologize about the mispelling--my brain is mush. That being said, I too am having episodes of brainlessness. I will answer someone's questions with "off-the-wall" answers, and have no idea what I said. I start to say something, and stop before I get going, but have NO idea what I was going to say. Like Joan, these seem to happen when I get more tired, but that's all the time--so who knows.About me-- I had my 1st Remicade infusion Friday-- and have spent most of the weekend sleeping. I'm noticing that my brain feels too big for my head, and that I'm "fuzzy" thinking, but that seems to be the only side effect. Actually, I figure this is good, because it means that the Remicade is in my brain, helping to put back the connections that I've lost to the NS vasculitis. My body pain is less, so that is very good. I'll be calling the Rheumatologist tomorrow and see if he thinks that we need to start on the regular start-up of the 1st infusion, then 2 wks later, a second infusion, then 4 weeks out a 3rd. After that, we will try 8 week intervals. I'm hoping that he will do it this way, since it's been 8 months since I last had the drug, and that way we can jumpstart this program and get me under control faster. Guys, if you have questions, please come out and ask. We are all in flare right now, but all of the moderator's and owners are here, checking in. If you don't get a response in a day or so, then ask again, or resend your email with an extra note-- and we'll try to get right on it. It's unusual for all of us to be messed up at one time, but we are commited (or should be) to making sure you have access to the answers you need to help you get the care you deserve.Wishing us all well,TracieNS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Dear Ever-So-Precious-to-Us Tracie, I cannot tell you how warm my heart is knowing that you finally got back on the Remicade!!!...now, let's all pray together that no one EVER takes it away again!!!...EVER...EVER!!! Love you very, very much!, Joan About me-- I had my 1st Remicade infusion Friday-- and have spent most of the weekend sleeping. I'm noticing that my brain feels too big for my head, and that I'm "fuzzy" thinking, but that seems to be the only side effect. Actually, I figure this is good, because it means that the Remicade is in my brain, helping to put back the connections that I've lost to the NS vasculitis. My body pain is less, so that is very good. I'll be calling the Rheumatologist tomorrow and see if he thinks that we need to start on the regular start-up of the 1st infusion, then 2 wks later, a second infusion, then 4 weeks out a 3rd. After that, we will try 8 week intervals. I'm hoping that he will do it this way, since it's been 8 months since I last had the drug, and that way we can jumpstart this program and get me under control faster. "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
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