Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 I am out of the wheelchair now. They immediately started the Prednisone and with rest I am much better. I am still shaky at times and really have to limit my activity. I think the hardest is realizing I am probably not ever going to be able to do things I used to do....ride bikes, go for long walks, jog, shop all day with the girls. Each time I have a flare I am set a little further back. But you know what...I am alive and able to function normally enough to work (90% of the time) which is great for someone that started with medulla and brainstem area involvement. I really ought to count my lucky stars. So what if I have to ride the mechanical beast from time to time...at least it gets me out and mobile. My husband and friends have all offered to push me around...they've been doing it for years anyway I tell them. (LOL) I am going to b e back on top again soon. And yes Crystal when I had to take Methx I found the natural remedy for nauseau and no appetite worked. It also helps the twitching and spasms.I guess I am what you would call a herbalist sometimes. As the song goes..."help me make it through the night" BeckyJoin Excite! - http://www.excite.comThe most personalized portal on the Web! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Becky dear glad to hear you are out of the wheelchair. sending you (((LOTS OF LOVE & BIG HUG)))))) Quint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Becky you may be out of the chair now, but how much do you want to keep that quality of life? Be less tired because of less exhersion? Take it from someone who ahs been there and done that. I love my rolls, I love being with the grandsons and trying to look after them. We go to COSI, which is Central Ohio Science Institute for hands on participation. Went last year and this year I hope to see more. You can work from your chair, but the key word is powerchair. it takes a doctor's script just like the manual. You can get specialized seating, mwlevating leg rests so when the legs and ankle start to sweel just pull up the ELR's as we call them or get the electric ELR's and you are ready to go. If you need lumbar support then you will need the special seating that will require the cusjons and the lumbar support back. You do not hve to not be able to go shopping, enjoy the outdoors because you cannot walk over a certain distance. You are giving up a quality of life. The only reason why I am bitter and I hope I get over it very soon is the fact it was a neurologist that took my legs out from under me and not the Erythema Nodosum nor the Sarc monster but a neuro who wouldn't listen. I am in a powerchair and believe my life is a lot more interesting now than it ever has been. Sharon > > > Date: Sat Jul 12, 6:51 PM > To: Neurosarcoidosis > Subject: Wheelchair > > I am out of the wheelchair now. They immediately started the Prednisone and with rest I am much better. I am still shaky at times and really have to limit my activity. I think the hardest is realizing I am probably not ever going to be able to do things I used to do....ride bikes, go for long walks, jog, shop all day with the girls. Each time I have a flare I am set a little further back. But you know what...I am alive and able to function normally enough to work (90% of the time) which is great for someone that started with medulla and brainstem area involvement. I really ought to count my lucky stars. So what if I have to ride the mechanical beast from time to time...at least it gets me out and mobile. My husband and friends have all offered to push me around...they've been doing it for years anyway I tell them. (LOL) I am going to be back on top again soon. And yes Crystal when I had to take Methx I found the natural remedy for nauseau and no appetite worked. > It also helps the twitching and spasms.I guess I am what you would call a herbalist sometimes. As the song goes... " help me make it through the night " Becky > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > > I am out of the wheelchair now. They immediately started the Prednisone and with rest I am much better. I am still shaky at times and really have to limit my activity. I think the hardest is realizing I am probably not ever going to be able to do things I used to do....ride bikes, go for long walks, jog, shop all day with the girls. Each time I have a flare I am set a little further back. But you know what...I am alive and able to function normally enough to work (90% of the time) which is great for someone that started with medulla and brainstem area involvement. I really ought to count my lucky stars. So what if I have to ride the mechanical beast from time to time...at least it gets me out and mobile. My husband and friends have all offered to push me around...they've been doing it for years anyway I tell them. (LOL) I am going to b e back on top again soon. And yes Crystal when I had to take Methx I found the natural remedy for nauseau and no appetite worked. It also helps the twitching and spasms.I guess I am what you would call a herbalist sometimes. As the song goes..."help me make it through the night" BeckyJoin Excite! - http://www.excite.comThe most personalized portal on the Web! ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 July 12, 2003 Report Share Posted July 12, 2003 Becky, I am so glad you are better, I know this crazy disease seems to set everyone a step backwards with each flare, I know it does for me. My flare started 3 years ago, and haven't been able to get it under control since. I pray you have better luck. Happy to hear you are better, hang in there and take it slow and easy. Praise him daily, Marla Wheelchair I am out of the wheelchair now. They immediately started the Prednisone and with rest I am much better. I am still shaky at times and really have to limit my activity. I think the hardest is realizing I am probably not ever going to be able to do things I used to do....ride bikes, go for long walks, jog, shop all day with the girls. Each time I have a flare I am set a little further back. But you know what...I am alive and able to function normally enough to work (90% of the time) which is great for someone that started with medulla and brainstem area involvement. I really ought to count my lucky stars. So what if I have to ride the mechanical beast from time to time...at least it gets me out and mobile. My husband and friends have all offered to push me around...they've been doing it for years anyway I tell them. (LOL) I am going to b e back on top again soon. And yes Crystal when I had to take Methx I found the natural remedy for nauseau and no appetite worked. It also helps the twitching and spasms.I guess I am what you would call a herbalist sometimes. As the song goes..."help me make it through the night"Becky Join Excite! - http://www.excite.comThe most personalized portal on the Web! ~~~~ *** ~~~ *** ~~~ *** ~~~~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...
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