Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Will keep you in my thoughts and prayers! Lots of hugs, Darlene > Hi Everyone, I hope you will get this email. I have been out of > commission as I have been in the hopital since Friday the 11th. I am > supposed to have surgery on the 22nd they are going to put in a computer > chip in my brain supposedly to control the hydrocephalus and then we will > just have to deal with the neurosarcoid or ms whatever this crud is with > > Jeanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Jeanne, Honey you need not appologize for being out of commission.... Sounds like we need to appologize for not keeping up with you.... How are you? Please have your husband or someone keep us updated when your in the hospital... Your a vital member of this group and we want to know what is going on with you, especially if your sick..... Your post are always encouraging to others, let us help encourage you....and please take care of you..... Big Hugs, -- Hi Everyone Hi Everyone, I hope you will get this email. I have been out of commission as I have been in the hopital since Friday the 11th. I am supposed to have surgery on the 22nd they are going to put in a computer chip in my brain supposedly to control the hydrocephalus and then we will just have to deal with the neurosarcoid or ms whatever this crud is with the methotrexate or whatever they decide to continue to use as the protein is not being controlled for some reason. I hope all of you are doing ok and I am sorry I have been out of commission and not been much help to anyone hopefully after next Tuesday and the shunt gets replaced I will feel like being a human being again. My prayers and thoughts are with all of you always and I will try and get at some of my mail tommorrow before before I have to go back in the hospital. Your friendly Texan Sarcoidian, Jeanna~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Hey Jeanna!!!! Don't feel too bad. I did the same thing with our AOL account. I never use it and when I went to help my mom with a new name, I could only remember my husband's password. We're both using my husband's name, but I use the cable modem most of the time. It would happen just when my girlfriend who come over once a years brings back my laptop with a modem card that works. Anyway, sweetie, I hope all is well with you. I had a bad morning, but for the most part the Remicade is working very, very well! I hope everyone gets to try it? I was sooooooooo sick before I started it and now I feel like I did before the sarc spread from my brain to the other parts of my body. I really, really wish this for you and all of our friends here! Regards, jeffrey110460 wrote: Sorry its been so long since I have posted, I have been having a really hard time getting over the surgery, Oh by the way this is Jeanna, the friendly Texan, somehow I have lost my brain and along with it went my passwords to my membership and it took me two hours or more trying to figure out how to set up a new account. I used my husbands info along with mine and it seems to worked out finally I guess we will see if you all get my update. Its 430am and I am really tired so this is going to be short and sweet but I will get back with ya'll this afternoon, Take care and have a nice day. Your Friendly Texan, Jeanna ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2003 Report Share Posted September 5, 2003 Jeanna, My heart goes out to you. You are so brave and have such an inner strength in you. For me, I watch the path that you are on, and look at mine as being simple®. Take it easy, pace yourself, and listen to your body. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 Hi Jeanna, Glad to see that you are back on earth. So sorry to hear about your troubles. Hope you are feeling well again. Ann Hi Everyone Hi, I will bet everyone thought I dropped off the earth or jumped off one well not yet. To make things short and sweet and not too boring. I got my new shunt was on my third week post op and my skin starting flaking off or I don't know what the medical term might be it just wasn't covering the shunt anymore and the the tubing in my head was exposed, Neuro like to have had a stroke I think went to emergency surgery to remove shunt that was exposed and to ICU for seven days of high dose vancomycin, then put new shunt in, stayed more days in hospital oh yea, and was sent home with iv antibotics for seven days and will see neuro in two weeks and he said the old stitches from infected side will rust before he takes them out. Since we had to completely revise the thing I also have a nice new belly scar there goes the midrifs, ha. Well enough about me, how have all of you being doing I tried to read the email but unfortunately my vision has not completely cleared. Take care and write when you can your friendly Texan, Jeanna ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 DEAR SWEET JEANNA, I'm glad you are able to get the shunt taken care of. You deserve the best of care after all you have been through. I only pray that they always maintained your pride and humility. I find that in the emergency room and the ICU that the docs talk over you (nurses too) as if you are not in the room. I pray this should never happen to you. You are too great a person. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 jeff can you explain a little more about the test please.....then maybe i can help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Jeff, I've had evoked potentials; can't remember much about it, but it wasn't painful. I think they just attached electrodes to my hands & feet & checked nerve conduction. Then again, they may have been putting subliminal messages into my brain! Rose Hi everyone > How is everybody doing? Me not to bad, I have felt pretty good > lately and I'm thankful for that. I have an evocted potential test > coming up next Thurs. and thats a new one on me, has anyone had it > that can tell me what to expect. I hate going into these things > blind. Actually I'm a bit of a chicken when I don't know what they > are doing. I don't get to get on here much so I feel I am missing > out, But at least I would like to take part in a group chat once, > hopfully this Mon. well thanks in advance for the info, JEFF > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Jeff, There are 3 evoked potential tests. I have had all 3 done, the visual twice. It is no big deal, they put electrodes on your head and you look at a screen. No pain at all. The other two I don't remember as much about. I know one is to check the brainstem and if I recall right you put on headphones. The other, I think is to check periphial(sp) nerves. It was MILDLY unpleasant. Nothing to freak out about. They ran a current over nerves in my arms and legs, there was only one spot on one ankle where it hurt, so it might not bother you at all. Hope I helped some and good luck. Elodia - -- In Neurosarcoidosis , " jefferylong38 " <jefferylong38@y...> wrote: > How is everybody doing? Me not to bad, I have felt pretty good > lately and I'm thankful for that. I have an evocted potential test > coming up next Thurs. and thats a new one on me, has anyone had it > that can tell me what to expect. I hate going into these things > blind. Actually I'm a bit of a chicken when I don't know what they > are doing. I don't get to get on here much so I feel I am missing > out, But at least I would like to take part in a group chat once, > hopfully this Mon. well thanks in advance for the info, JEFF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Aisha, You are a most awesome person! I am very pleased to know you. Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Jeanna honey how are you doing? You have had such a rough time! *HUGS* Love isha -- Hi Everyone Hi, I will bet everyone thought I dropped off the earth or jumped off one well not yet. To make things short and sweet and not too boring. I got my new shunt was on my third week post op and my skin starting flaking off or I don't know what the medical term might be it just wasn't covering the shunt anymore and the the tubing in my head was exposed, Neuro like to have had a stroke I think went to emergency surgery to remove shunt that was exposed and to ICU for seven days of high dose vancomycin, then put new shunt in, stayed more days in hospital oh yea, and was sent home with iv antibotics for seven days and will see neuro in two weeks and he said the old stitches from infected side will rust before he takes them out. Since we had to completely revise the thing I also have a nice new belly scar there goes the midrifs, ha. Well enough about me, how have all of you being doing I tried to read the email but unfortunately my vision has not completely cleared. Take care and write when you can your friendly Texan, Jeanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 ÿþ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Welcome Back! Love the Skull & Roses! L & L, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Hi there! I hope everyone is having a better day on the computer than I am. I couldve swore I wrote a note this morning but it didn't show up. I know that somewhere someone was asking about brain biopsies and methotrexate, the brain biopsy to me was a waste of time and a lot of pain/like getting hit with a hatchet and I have had a lot of surgeries on my head, only two biopsies though, and unless there is some chance of cancer I don't think I would chance it for the things that can happen it is not really worth the risk. Also somewhere I also read about the methotrexate, it has worked for me and I have been on it for a long time, we just had to find the right dose, the solumedrol was killing me. If anyone needs to chat I am here and I am trying to check my email more often. Your Friendly Texan, Jeanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 ~ A bad muscle strain/sprain? I'm glad you are feeling much better. Did the Drs. give you anything for the pain? Are you up and around yet? I wonder what caused it to flare up like it did? I know, I ask too many questions. I'm just kinda typing what I'm thinking more than actually expecting you to answer. I hear your hubby is back from China. I know you're glad to have him home. I'm glad he's home for you as well. I'll talk to you soon. Love and blessings...Val Hi Everyone Hi everyone,I just wanted to say thank you to everyone who has been there for me through my pain and suffering with my most current back injury. It's been a really hard road to go down and I haven't been in touch much because the pain has been so bad but wanted to tell all that the drs say it's a bad muscle sprain/strain and I am feeling better finally. I am really happy that there is a group that I can go to that I know I will and get support from caring people. Thanks to all!!!!Hugs, No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.15/949 - Release Date: 8/12/07 11:03 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Of course we care! You're special....and yes...this group is awesome special, collectively, and individually. So happy to hear there is finally some pain relief for you . Also so encouraging to read the pain is a sprain/strain, and not something far worse. Thanks for the update! blessings to you, kate Hi Everyone Hi everyone,I just wanted to say thank you to everyone who has been there for me through my pain and suffering with my most current back injury. It's been a really hard road to go down and I haven't been in touch much because the pain has been so bad but wanted to tell all that the drs say it's a bad muscle sprain/strain and I am feeling better finally. I am really happy that there is a group that I can go to that I know I will and get support from caring people. Thanks to all!!!!Hugs, Quote Link to comment Share on other sites More sharing options...
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