Guest guest Posted June 19, 2010 Report Share Posted June 19, 2010 , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2010 Report Share Posted June 19, 2010 , I'm sorry to hear this, it's no fun, I know I can get on sensory overload too, when my husband has the TV on loud, then sits down to his computer and watches something loud, and I'm trying to watch TV, it's crazy, I just yell at my husband " Can you hear that?? " Then he realizes everything is loud lol. Are you in a flare? Maybe you need something to help you out. your in my prayers, Marla All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S. Life may not always be the party we hoped for, but while we're here we might as well dance! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2010 Report Share Posted June 19, 2010 ;Those are my symptoms too. My kids say that I smell things that aren't really there. When I tell them the tv is too loud, they tell me it's not ... that it's only me!! I smell odors coming from the neighbors apartment above mine but no one else smells it. What the heck?? L. -MayeTo: neurosarcoidosis Sent: Sat, June 19, 2010 10:39:17 AMSubject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2010 Report Share Posted June 20, 2010 Rose, they have been like this for years but when I am in a flare it's much worse. This year has been bad for me. Stuck in the house 24/7. No energy at all. Lost my regular doc last year and no energy to connect with new doc. He just doesn't know everything I've gone through. My apartment is a disaster. Not like on Hoarders but very messy/dusty. I have no energy to clean. My severe sinus issues not taken very seriously by ENT though at one point I had a brain scan it was so bad. My body doesn't regulate changing temps very well or high dew points. I have severe muscle pain all over and they say it's fibromyalgia. I spend 90% of my day laying down. Thank God for AC, dvr's and my Kindle or I'd go mad. I haven't painted at all this year and usually I painted a landscape every two months or so. ....you asked!......lol. This is how I am. hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2010 Report Share Posted June 20, 2010 , my neighbors know I have smell issues but they cook some strange things I'd never eat any way so I still have to put up with weird smells. When I was at the worst I couldn't smell cooking meat or veggies without gagging. My room is too close to the kitchen!...lol. I use all things unscented. hugs S. p.s. I am also yelling at hubby and son to turn the tv down. luckily my room is far enough away from livingroom.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: Re: sensory issuesTo: Neurosarcoidosis Date: Saturday, June 19, 2010, 10:52 PM ;Those are my symptoms too. My kids say that I smell things that aren't really there. When I tell them the tv is too loud, they tell me it's not ... that it's only me!! I smell odors coming from the neighbors apartment above mine but no one else smells it. What the heck?? L. -Maye To: neurosarcoidosis Sent: Sat, June 19, 2010 10:39:17 AMSubject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2010 Report Share Posted June 20, 2010 , I'm sorry that you are feeling so bad. And when you can't do the regular stuff (painting, even cleaning, etc.) it makes you feel worse. Do you have any family or friends that would help out if you asked? I know, it's hard to ask because you hate to be dependent on anyone or even have people see how messy it's gotten. Right now I have my daughter here to help, but in the past I've asked friends from work or church. I only ask a couple of them, because I'm so afraid people will be thinking, "Good grief, she's a lazy clutterbug," or something like that. Last year I mentioned to a Bible study group that I had no floor space in my bedroom because of "stuff." One friend offered to come help me tidy up my bedroom. She's a very efficient person & in 2 hours we had filled 2 bags of trash, found space to put everything else & I could walk around in my room! It's gotten a little cluttered since, but not much. I feel like my room is my sanctuary & I like having it as neat as possible. Another thing I wondered is if you are taking an effective antidepressant. Some of what you describe (not the sensory issues, but the other) sounds like depression. I've recently had to change my antidepressant because my body had reached a level of tolerance after several years. My psychiatrist said that some people need to alternate 2 meds periodically to prevent that. At the time I really hadn't thought I was depressed, just tired. But after the med change, I began to feel more energetic & less grumpy. Last year I didn't go kayaking one time, even tho it's one of my favorite things to do. This year I've been 4 times already & would go even more if I could afford it. It's not bad for me, but I've got to pay for the kids when they go with me. Plus there is the traditional stop at Dairy Queen afterward . . . . . Anyway, what really jumped out at me was the fact that you aren't painting. That's got to be one of your major stress relievers & you aren't doing it. I think you are depressed, girl! Now what are we going to do about it?!? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: mary_s777@...Date: Sun, 20 Jun 2010 00:47:22 -0700Subject: RE: sensory issues Rose, they have been like this for years but when I am in a flare it's much worse. This year has been bad for me. Stuck in the house 24/7. No energy at all. Lost my regular doc last year and no energy to connect with new doc. He just doesn't know everything I've gone through. My apartment is a disaster. Not like on Hoarders but very messy/dusty. I have no energy to clean. My severe sinus issues not taken very seriously by ENT though at one point I had a brain scan it was so bad. My body doesn't regulate changing temps very well or high dew points. I have severe muscle pain all over and they say it's fibromyalgia. I spend 90% of my day laying down. Thank God for AC, dvr's and my Kindle or I'd go mad. I haven't painted at all this year and usually I painted a landscape every two months or so. ....you asked!......lol. This is how I am. hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2010 Report Share Posted June 20, 2010 , remember the saying about blessings in disguise? Well, I'm realizing that I have some I've not thought about. My hearing loss for one, a poor sense of smell (long before sarc), and nondiscriminating sense of taste (long before sarc). I've never been picky about coffee, just drank the cheapest thing. People at work would say, "How can you drink that stuff?" Didn't bother me. So I guess I need to appreciate what I haven't got. ctm. (chuckle to myself; made up a new acronym since I seldom lol) Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: mary_s777@...Date: Sun, 20 Jun 2010 01:08:25 -0700Subject: Re: sensory issues , my neighbors know I have smell issues but they cook some strange things I'd never eat any way so I still have to put up with weird smells. When I was at the worst I couldn't smell cooking meat or veggies without gagging. My room is too close to the kitchen!...lol. I use all things unscented. hugs S. p.s. I am also yelling at hubby and son to turn the tv down. luckily my room is far enough away from livingroom.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: Re: sensory issuesTo: Neurosarcoidosis Date: Saturday, June 19, 2010, 10:52 PM ;Those are my symptoms too. My kids say that I smell things that aren't really there. When I tell them the tv is too loud, they tell me it's not ... that it's only me!! I smell odors coming from the neighbors apartment above mine but no one else smells it. What the heck?? L. -Maye To: neurosarcoidosis Sent: Sat, June 19, 2010 10:39:17 AMSubject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2010 Report Share Posted June 20, 2010 Rose, i think I am depressed on TOP of everything else. It is so hard to make doctor's appts. with my sleep disorder...Non 24 hr sleep wake syndrome. My symptoms really do sound like a lot of what you went through so I guess i'll have to bite the bullet and see if I can get in this week sometime. I'll need a kick in the ass to get me going though....lol. hugs and thanks for asking about me S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2010 Report Share Posted June 20, 2010 we might as well dance! Many years ago I had a list of stressbusters. One of them was to dance naked in front of your pets. At the time I had a cat & 2 dogs. The cat was unimpressed, but the dogs' expressions were hilarious! Now all I have to do is think about it & my mood improves. I don't know if you have any pets, and fish or hermit crabs probably wouldn't do the job, but maybe you can think of something else ridiculous to do . . . . . I don't know--dance naked in front of your neighbors?!? mmmmmm, maybe not. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: mary_s777@...Date: Sun, 20 Jun 2010 08:43:46 -0700Subject: RE: sensory issues Rose, i think I am depressed on TOP of everything else. It is so hard to make doctor's appts. with my sleep disorder...Non 24 hr sleep wake syndrome. My symptoms really do sound like a lot of what you went through so I guess i'll have to bite the bullet and see if I can get in this week sometime. I'll need a kick in the ass to get me going though....lol. hugs and thanks for asking about me S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2010 Report Share Posted June 21, 2010 I want to be one of your pets From: Rose <mamadogrose@ hotmail.com>Subject: RE: sensory issuesTo: neurosarcoidosis@ yahoogroups. comDate: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis@ yahoogroups. comFrom: mary_s777 (AT) yahoo (DOT) comDate: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2010 Report Share Posted June 21, 2010 Rose, I am just not in a dancing mood today. There is another thunderstorm coming our way and they usually put me to sleep. My muscle pain is what tires me and then I end up with depression. I can't get much done when I hurt so much. Even painting takes a patience and just holding a brush for any length oof time causes arm pain. Add in the fact that I've gained 20 lbs. since January and I think that is what has put me over the top. Guess my tagline seems abit hypocritical today. oh well... I'm accepting hugs today! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2010 Report Share Posted June 21, 2010 Here come the hugs, so strings attached: ((((((((((((((((()))))))))))))))) Ramblin' RoseModerator To: Neurosarcoidosis From: mary_s777@...Date: Mon, 21 Jun 2010 07:23:16 -0700Subject: RE: sensory issues Rose, I am just not in a dancing mood today. There is another thunderstorm coming our way and they usually put me to sleep. My muscle pain is what tires me and then I end up with depression. I can't get much done when I hurt so much. Even painting takes a patience and just holding a brush for any length oof time causes arm pain. Add in the fact that I've gained 20 lbs. since January and I think that is what has put me over the top. Guess my tagline seems abit hypocritical today. oh well... I'm accepting hugs today! S.Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2010 Report Share Posted June 21, 2010 Eh, probably not. Maybe 30 years ago! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: dmhs1666@...Date: Mon, 21 Jun 2010 07:14:59 -0700Subject: RE: sensory issues I want to be one of your pets From: Rose <mamadogrose@ hotmail.com>Subject: RE: sensory issuesTo: neurosarcoidosis@ yahoogroups. comDate: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis@ yahoogroups. comFrom: mary_s777 (AT) yahoo (DOT) comDate: Sat, 19 Jun 2010 07:39:17 -0700Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S.Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2010 Report Share Posted June 21, 2010 Hugs to you () Marla Rose, I am just not in a dancing mood today. There is another thunderstorm coming our way and they usually put me to sleep. My muscle pain is what tires me and then I end up with depression. I can't get much done when I hurt so much. Even painting takes a patience and just holding a brush for any length oof time causes arm pain. Add in the fact that I've gained 20 lbs. since January and I think that is what has put me over the top. Guess my tagline seems abit hypocritical today. oh well... I'm accepting hugs today! S. Life may not always be the party we hoped for, but while we're here we might as well dance! Subject: RE: sensory issuesTo: neurosarcoidosis Date: Saturday, June 19, 2010, 6:53 PM , has it been this while for quite awhile, or just started recently? Also, did all your senses go wacky at once, or gradually? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: mary_s777@...Date: Sat, 19 Jun 2010 07:39:17 -0700 Subject: sensory issues All my senses are screwed up... Things are too loud, too bright, too rough. I smell things nobody else smells or regular stuff smells horrendously bad. I can't wear anything tight. My taste buds are enlarged and some times very sore. I can't eat anything too salty or it burns. I can't stand loud noises and mute the tv often. My senses are all wacked out! I could go on but that's enough for today.....lol. S. Life may not always be the party we hoped for, but while we're here we might as well dance! Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy. Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more. Quote Link to comment Share on other sites More sharing options...
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