Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 Hello all. Thanks to the steroids thinning my bones (my opinion, not a docs) I managed to break a bone in my foot. I spent my Memorial Day Monday in the ER. I quit the garbage can wars and took on the refrigerator. You can bet I won't run around without my shoes anymore. Rosie I have to find out when I see the ortho doc to replace my temporary cast with something else so I will have to let you know about June 1st at Dr Bs. It's always something with the sarc or the side effects of the treatment it seems. Love all ya'll! grannylunatic@... Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 , Girl, you better stay out of the refrigerators way. It sounds like you lost the battle. Terri G. > > Hello all. Thanks to the steroids thinning my bones (my opinion, not a docs) I managed to break a bone in my foot. I spent my Memorial Day Monday in the ER. I quit the garbage can wars and took on the refrigerator. You can bet I won't run around without my shoes anymore. > > Rosie > I have to find out when I see the ortho doc to replace my temporary cast with something else so I will have to let you know about June 1st at Dr Bs. It's always something with the sarc or the side effects of the treatment it seems. Love all ya'll! > > > > > grannylunatic@... > > --------------------------------- > Shape Yahoo! in your own image. Join our Network Research Panel today! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 ok, so the naked in the fridge makes sense to me. would scare the kids and probably get locked up. i did the politically correct thing and bought a spray bottle/fan combo (read menopausal woman ) and can't figure out how to work the darn thing. batteries go in but still doesn't work. brain is too hot to think properly.Bonnie BSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 , maybe YOU wouldn't do it in public, but I have stuck my head under the faucet in bathrooms to cool off! Usually my hair is already soaked with sweat by then, so I figure it might as well be cool. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SweatingDate: Thu, 24 May 2007 11:45:56 -0700 (PDT) You couldn't do it in public but I squirt myself down with a bottle of water, including my head. After a bit it's like that cool you feel when you first get out of a pool. I leave the bra on damp too when I go to bed. Air conditioning doesn't do it and it makes my knees ache.grannylunatic (AT) yahoo (DOT) com Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. http://us.rd.yahoo.com/evt=48516/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 hot CTA = Join Yahoo!'s user panel More photos, more messages, more storage—get 2GB with Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 society requires I not go naked. Bummer. I thought you California chicks were all liberated! Ramblin' Rose Moderator From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SweatingDate: Fri, 25 May 2007 02:38:11 EDT Ok guys, I'm feeling left out, I don't sweat. The sarc in my lymphs make it so that I swell like all getout, but I rarely sweat. However, I still can't handle the heat. 's on high dose Warfarin, (Coumadin) and he's not comfortable unless it's 85+ degrees, he loves it when it hits 100. I keep telling him he can put on more clothes, but society requires I not go naked. Bummer.Hugs,Tracie**************************************See what's free at http://www.aol.com. Catch suspicious messages before you open them—with Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 , , don't you know that you need to wear steel-toed boots when you take on a large appliance?!? Hope you are better soon. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SweatingDate: Tue, 29 May 2007 02:03:54 -0700 (PDT) Hello all. Thanks to the steroids thinning my bones (my opinion, not a docs) I managed to break a bone in my foot. I spent my Memorial Day Monday in the ER. I quit the garbage can wars and took on the refrigerator. You can bet I won't run around without my shoes anymore. Rosie I have to find out when I see the ortho doc to replace my temporary cast with something else so I will have to let you know about June 1st at Dr Bs. It's always something with the sarc or the side effects of the treatment it seems. Love all ya'll! grannylunatic (AT) yahoo (DOT) com Shape Yahoo! in your own image. Join our Network Research Panel today! Like the way Microsoft Office Outlook works? You’ll love Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 OOOOH yes I would Rosie! I have no shame and no job to get embarrased at. They knew I was nuts anyway. I just assumed some people have more "COUTH" than I. LOLgrannylunatic@... 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 May 30, 2007 Report Share Posted May 30, 2007 Rose Don't you know us 'Tucky Billies don't wear shoes? grannylunatic@... Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 batteries go in but still doesn't work. brain is too hot to think properly.Bonnie B Bonnie, have you turned the batteries around the other way? Take care, Tracie************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 society requires I not go naked. Bummer. I thought you California chicks were all liberated! Liberated yes, crazy no!! ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 , earlier I said that my appt. at Camp Baughman was tomorrow, June 1. I've now realized that tomorrow is May 31; my appt is Friday. Just wanted to clear up any confusion. Anyone else going to be in Cincinnati Friday & want to get together? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SweatingDate: Wed, 30 May 2007 10:36:26 -0700 (PDT) OOOOH yes I would Rosie! I have no shame and no job to get embarrased at. They knew I was nuts anyway. I just assumed some people have more "COUTH" than I. LOLgrannylunatic (AT) yahoo (DOT) com Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Been there. Done that! I fractured my foot 2 years ago gardening and it never healed (again, thanks to steroids). It now has a pin in place permanently, and requires that I wear a brace when doing actvities. I wore a strap-on aircast for almost 2 years. Insurance paid for it luckily since it costs about $300. Take care of that foot!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Rose I have to go to the ortho Friday & get my foot set & the other cast on. That's at 3:00 but it's in KY. What time will you be in Cincy? grannylunatic@... Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 $300? OMG! What's 20%? $60? OMG! There goes my laundry money! grannylunatic@... Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 yeaahhh..still no go. must be a defect somewhere/ i hope the defect is not me!! BonnieSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 I can totally relate to the sweating...Grrrrrr. I never use to sweat and now being on the IV solu medrol and oral prednisone I can't stand it. KatSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Since I have been on prednisone I pour sweat so bad my hair drips it is awful. I do my best to stay out of the heat (haha I live in florida) and I freeze everybody to death. Connie --- tiodaat@... wrote: > Ok guys, I'm feeling left out, I don't sweat. The > sarc in my lymphs make it > so that I swell like all getout, but I rarely sweat. > However, I still can't > handle the heat. > 's on high dose Warfarin, (Coumadin) and he's > not comfortable unless > it's 85+ degrees, he loves it when it hits 100. I > keep telling him he can put on > more clothes, but society requires I not go naked. > Bummer. > > Hugs, > Tracie > > > ************************************** > See what's free at > http://www.aol.com. > ________________________________________________________________________________\ ____ Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search http://search.yahoo.com/search?fr=oni_on_mail&p=graduation+gifts&cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2007 Report Share Posted July 7, 2007 I don't sweat alot but I do have an internal heat that feels like I am sunburnt or cooking on the inside. It sucks. My temp is normal. I used to have a slightly below 98.6.grannylunatic@... 8:00? 8:25? 8:40? Find a flick in no time with theYahoo! Search movie showtime shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2007 Report Share Posted July 7, 2007 I went onto EBAY and did a search for "cooling vests". I ordered one, and love it! It's like the neck scarfs, but it a full vest. I put it in the sink with cold water for 10 minutes, wring it out, and then put it on-- it keeps me very comfortable for hours! We were out in the apple orchard last weekend for 4 hours in the afternoon sun-- and I was able to handle it! YEAH!!!!!!! ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2007 Report Share Posted July 7, 2007 Wow that is pretty amazing, I would have been so sick if out in the sun that long, that’s great! I think I will just stay out of the sun! " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Saturday, July 07, 2007 4:48 PM To: Neurosarcoidosis Subject: Re: Sweating I went onto EBAY and did a search for " cooling vests " . I ordered one, and love it! It's like the neck scarfs, but it a full vest. I put it in the sink with cold water for 10 minutes, wring it out, and then put it on-- it keeps me very comfortable for hours! We were out in the apple orchard last weekend for 4 hours in the afternoon sun-- and I was able to handle it! YEAH!!!!!!! ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Madonna, It is so good to hear from you!!! It's been a while since you've posted, and I know that you are out there helping to put a voice and a face to this disease. Thank you, and do take care, Tracie ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Hello everyone! Hope all is well considering the 'Sarc Monster' has possessed us (me). I needed to make a comment on the sweating. I thought I just sweat a lot because I am fat, but yes - the soluMedrol, coupled with the prednisone and methotrexate makes me a sweat machine. I am thankful that the right combination of drugs is keeping me functional, but so sad that I break out in a sweat...especially in public appearances. On the photo section, just added is the new promotional shot for my talk show and position at the tv station. I sweat so much during the photo shoot and was so embarrassed by the tracks on my arms, but folks understood and kept saying positive stuff. (Good for my faltering ego) Just had a meeting with the local Sarcoid Support group here in Youngstown/Warren Ohio and we found out that the Cleveland Clinic lost their grant for the Sarcoidosis Center for Excellence - DAMN! So much progress was happening simply in the way of support. More and more people in our community are coming forth with Sarcoidosis diagnosis and the support group is wonderful. We just lost a member, but we are happy that she is no longer suffering. Oh well enough from me, love you all and I read your messages often. Madonna The Oprah Wannabe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2007 Report Share Posted July 8, 2007 Saw your picture, you look great and good look on your show, I hope We can all find a way to get this disease more exposure, I’m sorry to hear of the Cleveland clinic losing there funding, That’s a real bummer. My best to you, ;Marla " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of madonna4ncd Sent: Sunday, July 08, 2007 5:32 PM To: Neurosarcoidosis Subject: Re: Sweating Hello everyone! Hope all is well considering the 'Sarc Monster' has possessed us (me). I needed to make a comment on the sweating. I thought I just sweat a lot because I am fat, but yes - the soluMedrol, coupled with the prednisone and methotrexate makes me a sweat machine. I am thankful that the right combination of drugs is keeping me functional, but so sad that I break out in a sweat...especially in public appearances. On the photo section, just added is the new promotional shot for my talk show and position at the tv station. I sweat so much during the photo shoot and was so embarrassed by the tracks on my arms, but folks understood and kept saying positive stuff. (Good for my faltering ego) Just had a meeting with the local Sarcoid Support group here in Youngstown/Warren Ohio and we found out that the Cleveland Clinic lost their grant for the Sarcoidosis Center for Excellence - DAMN! So much progress was happening simply in the way of support. More and more people in our community are coming forth with Sarcoidosis diagnosis and the support group is wonderful. We just lost a member, but we are happy that she is no longer suffering. Oh well enough from me, love you all and I read your messages often. Madonna The Oprah Wannabe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2007 Report Share Posted July 9, 2007 Marla, we sound alot alike in some ways. I don't dare go in the sun, I get so sick and weak I either have to lie down or I guess fall down. I avoid the sun like the plague. My 16 yr old son teases me about my "vampiric" ways, I fuss at him for saying that and he just laughs. ConnieMarla Bramer wrote: Wow that is pretty amazing, I would have been so sick if out in the sun that long, that’s great! I think I will just stay out of the sun! "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat (AT) aol (DOT) comSent: Saturday, July 07, 2007 4:48 PMTo: Neurosarcoidosis Subject: Re: Sweating I went onto EBAY and did a search for "cooling vests". I ordered one, and love it! It's like the neck scarfs, but it a full vest. I put it in the sink with cold water for 10 minutes, wring it out, and then put it on-- it keeps me very comfortable for hours! We were out in the apple orchard last weekend for 4 hours in the afternoon sun-- and I was able to handle it! YEAH!!!!!!! **************************************See what's free at http://www.aol.com. Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2007 Report Share Posted July 9, 2007 Why did the clinic lose their funding? Did it go somewhere else or just dry up?Marla Bramer wrote: Saw your picture, you look great and good look on your show, I hope We can all find a way to get this disease more exposure, I’m sorry to hear of the Cleveland clinic losing there funding, That’s a real bummer. My best to you, ;Marla "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of madonna4ncd Sent: Sunday, July 08, 2007 5:32 PM To: Neurosarcoidosis Subject: Re: Sweating Hello everyone! Hope all is well considering the 'Sarc Monster' has possessed us (me). I needed to make a comment on the sweating. I thought I just sweat a lot because I am fat, but yes - the soluMedrol, coupled with the prednisone and methotrexate makes me a sweat machine. I am thankful that the right combination of drugs is keeping me functional, but so sad that I break out in a sweat...especially in public appearances. On the photo section, just added is the new promotional shot for my talk show and position at the tv station. I sweat so much during the photo shoot and was so embarrassed by the tracks on my arms, but folks understood and kept saying positive stuff. (Good for my faltering ego) Just had a meeting with the local Sarcoid Support group here in Youngstown/Warren Ohio and we found out that the Cleveland Clinic lost their grant for the Sarcoidosis Center for Excellence - DAMN! So much progress was happening simply in the way of support. More and more people in our community are coming forth with Sarcoidosis diagnosis and the support group is wonderful. We just lost a member, but we are happy that she is no longer suffering. Oh well enough from me, love you all and I read your messages often. Madonna The Oprah Wannabe Need Mail bonding?Go to the Yahoo! Mail Q&A for great tips from Yahoo! Answers users. Quote Link to comment Share on other sites More sharing options...
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