Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 Marla, I hope you feel better soon. Love ya, -- RE: Faith Based Chat with Ron and Marla 11 pm central, 1/14/2007, 11:00 pm I’m sorry guys I’m not going to make it to the chat tonight, it’s just too late for me, I had to have surgery on Friday, (female won’t go into details) but still dragging. Hope all are well and you have a good chat tonight. Take care, and God Bless, Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] Sent: Sunday, January 14, 2007 8:59 PMTo: Neurosarcoidosis Subject: Faith Based Chat with Ron and Marla 11 pm central, 1/14/2007, 11:00 pm Reminder from: Neurosarcoidosis Yahoo! Group Title: Faith Based Chat with Ron and Marla 11 pm central Date: Sunday January 14, 2007 Time: 11:00 pm - 12:00 am Repeats: This event repeats every week. Next reminder: The next reminder for this event will be sent in 47 minutes. Location: http://www.emxpc.net/chat/index.php Notes: THIS IS CENTRAL TIME. CALENDER WILL ONLY TAKE CENTRAL OR EASTERN TIME ONE OR THE OTHER . I PUT IT ON CENTRAL TIME. Get reminders on your mobile, Yahoo! Messenger, and email.Edit reminder options Copyright © 2007 Yahoo! Inc. All Rights Reserved | Terms of Service | Privacy Policy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Hi, Thanks Marla for the support. Thwe funny thing is, i work right now in reception and all of the work is on the phone. i can't quit because i am still fight ing ssdi to recognize the ailment and I need the money. It is so absurd. When I feel that i am having speech problems, I just put everyone on hold! Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: advise: asapDate: Wed, 28 Mar 2007 15:58:42 -0700 Pomy, I am sorry to hear this about your doctors, nothing worse then dealing with too many docs. your sx's YES, I have had all of them, the numbness i just got use to, the crawly feeling usually comes on when i am tired, the speech problem, same and again as is everything with this disease it worse the more tired i am. I just found out from a neuro that i have loss some function on the left side, and told my Pulm doc the one that takes care of me to increase my autoimmune drugs to the highest level my body can tolerate, he's already up the dose but i don't see him until the middle of April. the speech thing I've had for awhile and even quite teaching due to it, as i felt like i should of been the student instead of the teacher, i would forget what i was talking about, couldn't answer a question, knew it, just couldn't get it out. Hang in there and keep on pushing girl i do believe we have to keep doing what we can, and even pushing it a little, not to the point of more damage. the neuro said if you don't use it you will lose, so i asked him i should be doing PT or something and he said No, you can't be back what you've lost but keep on the treadmill exercise etc... so that's what i hope to do. hang in there Pomy. blessings, Marla On 3/27/07, Moish Pomeranc <moishpomeranc (AT) hotmail (DOT) com> wrote: Hi, Due to my ns, I have days where I don't speak well. I know what I want to say or explain, but it just doesn't come out as I want it to. Yesterday was one of those days, nothing came out that people could understand well. Does anyone have these days? Today, I had a real fright. In the morning, my face sarted to feel numb, like ants craweing over it. felted it even my nose and my front teeth. It was scary, I thought I was having a ns attack and the ambulance was coming to take me away. Does anyone ever have this feeling and what do you take for it? I don't want to go to the dr. whodx'ed me or my gp because the first one only says that that'ds the way it is and nothing can be done, the gp says I have to go to him right awaay so he can understand what's happening. The real problem is that i am alone in this fight and getting no support. It's all so frustrating. Voiced pomy Express yourself instantly with MSN Messenger! MSN Messenger Download today it's FREE! Express yourself instantly with MSN Messenger! MSN Messenger Download today it's FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2007 Report Share Posted April 2, 2007 Yes Rose I like that one too! Will have to try it sometimeJ. Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Monday, April 02, 2007 7:44 AM To: Neurosarcoidosis Subject: RE: Re: Marla Marla, that's very tempting. I admit I turn off the ringer on my phone sometimes, because between my mom & my kids I feel so drained. Then when they complain that they called me & I didn't answer, I can say that I didn't hear the phone, which is true! Ramblin' Rose Moderator From: " Marla Bramer " <mebramer (AT) gmail (DOT) com> Reply-To: Neurosarcoidosis To: <Neurosarcoidosis > Subject: RE: Re: Marla Date: Sun, 1 Apr 2007 18:48:55 -0600 Well I think putting everyone on hold is a great idea, don’t you wish you could put the world on hold sometimesJ Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Moish Pomeranc Sent: Sunday, April 01, 2007 2:02 AM To: Neurosarcoidosis Subject: Re: Marla Hi, Thanks Marla for the support. Thwe funny thing is, i work right now in reception and all of the work is on the phone. i can't quit because i am still fight ing ssdi to recognize the ailment and I need the money. It is so absurd. When I feel that i am having speech problems, I just put everyone on hold! From: " Marla Bramer " <mebramer (AT) gmail (DOT) com> Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: advise: asap Date: Wed, 28 Mar 2007 15:58:42 -0700 Pomy, I am sorry to hear this about your doctors, nothing worse then dealing with too many docs. your sx's YES, I have had all of them, the numbness i just got use to, the crawly feeling usually comes on when i am tired, the speech problem, same and again as is everything with this disease it worse the more tired i am. I just found out from a neuro that i have loss some function on the left side, and told my Pulm doc the one that takes care of me to increase my autoimmune drugs to the highest level my body can tolerate, he's already up the dose but i don't see him until the middle of April. the speech thing I've had for awhile and even quite teaching due to it, as i felt like i should of been the student instead of the teacher, i would forget what i was talking about, couldn't answer a question, knew it, just couldn't get it out. Hang in there and keep on pushing girl i do believe we have to keep doing what we can, and even pushing it a little, not to the point of more damage. the neuro said if you don't use it you will lose, so i asked him i should be doing PT or something and he said No, you can't be back what you've lost but keep on the treadmill exercise etc... so that's what i hope to do. hang in there Pomy. blessings, Marla On 3/27/07, Moish Pomeranc <moishpomeranc (AT) hotmail (DOT) com> wrote: Hi, Due to my ns, I have days where I don't speak well. I know what I want to say or explain, but it just doesn't come out as I want it to. Yesterday was one of those days, nothing came out that people could understand well. Does anyone have these days? Today, I had a real fright. In the morning, my face sarted to feel numb, like ants craweing over it. felted it even my nose and my front teeth. It was scary, I thought I was having a ns attack and the ambulance was coming to take me away. Does anyone ever have this feeling and what do you take for it? I don't want to go to the dr. whodx'ed me or my gp because the first one only says that that'ds the way it is and nothing can be done, the gp says I have to go to him right awaay so he can understand what's happening. The real problem is that i am alone in this fight and getting no support. It's all so frustrating. Voiced pomy Express yourself instantly with MSN Messenger! MSN Messenger Download today it's FREE! Express yourself instantly with MSN Messenger! MSN Messenger Download today it's FREE! 5.5%* 30 year fixed mortgage rate. Good credit refinance. Up to 5 free quotes - *Terms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 Ok Marla, I saw your small oops-- but I figured we all need to find our liver. So-- you are under too much stress- how about spilling the beans before you end up with burnout and get yourself sicker? Even privately is ok-- how can we help my friend? Hugs, Tracie************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 HMMMMM There's a song in there? Must be 50 ways to leave your liver....get on the bus Gus, don't need to discuss much.... OK, now I got that out of my system I do have a question. After the Cytoxan it feels like someone is squeezing half my brain & I have little jumpy feelings in my neck. The chemo doc gives me a strange look & I says "I don't know." ARGGGGG I went to the urologist today & he wants another urodynamics? test. I had one a few years ago & they said my bladder was like a babies bladder. My brain & bladder don't communicate. Why do they need to invade my privacy & my privates again? It's worse than the last time so nothing is changed! grannylunatic@... Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Thanks Quint for the information, I'm sorry it worked then didn't, it's so hard to know what to do, we just found out yesterday that the insurance company refused Humeria, we put that through as a back up!, I know God has a plan for me, hope you get to feeling better. Marla HI MARLA THE REMICADE WAS WORKING GREAT FOR ME TTHE PREDS WERE DOWN TO 20mgs THEN THE OLD SARC MONSTER WOKE UP GIVING ME A GOOD LEFE INTHE HEAD SENDING MY BRAIN ON VACATION ONCE AGAIN BUT IT DID LEAVE ME WITH A LITTLE REMINDER A BRAIN INFECTION ANY TYPE OF INFECTION MEANS REMICADE HAS TO BE STOPPED.I HAVE LEAVE WILL GET BACK TO YOU LATER......QUINT -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Thanks Quint for the information, I'm sorry it worked then didn't, it's so hard to know what to do, we just found out yesterday that the insurance company refused Humeria, we put that through as a back up!, I know God has a plan for me, hope you get to feeling better. Marla HI MARLA THE REMICADE WAS WORKING GREAT FOR ME TTHE PREDS WERE DOWN TO 20mgs THEN THE OLD SARC MONSTER WOKE UP GIVING ME A GOOD LEFE INTHE HEAD SENDING MY BRAIN ON VACATION ONCE AGAIN BUT IT DID LEAVE ME WITH A LITTLE REMINDER A BRAIN INFECTION ANY TYPE OF INFECTION MEANS REMICADE HAS TO BE STOPPED.I HAVE LEAVE WILL GET BACK TO YOU LATER......QUINT -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
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