Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi everyone, I am having so much difficulty trying to maintain a normal 9-5 schedule and have applied for intermittent leave under FMLA. However, all of my doctors say people with sarcoid are usually able work normal full time hours and won't fill out any FMLA papers stating otherwise. I am curious to know how many others who are afflicted with sarcoid are working full time? Thanks in advance for your input! Kim Pellett Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Kim, I have FMLA Intermittent and can work what I feel like. I have great docs and an employer that cares. I hope you can find at least one to fill out the form. LYNNE m.kimpellett wrote: Hi everyone, I am having so much difficulty trying to maintain a normal 9-5 schedule and have applied for intermittent leave under FMLA. However, all of my doctors say people with sarcoid are usually able work normal full time hours and won't fill out any FMLA papers stating otherwise. I am curious to know how many others who are afflicted with sarcoid are working full time? Thanks in advance for your input! Kim Pellett Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Kim I went on FMLA a year & a half ago. I've been on Cytoxan for a year & don't see an end to it. I went from using a cane to using a walker & don't know when it will end. I don't see me returning to work any time soon but I wish I could. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi Tracie, Thank you for your very thoughtful and informative email. This helps very much. Being 26, just recently diagnosed, among a group of healthy friends, I feel in the dark. The only light is found in this group that not only teaches me the true facts (unlike the "facts" from the doctors), but also helps me remember I am not alone (nor am I crazy... as I've felt and been told!). Thanks again, Kim Pelletttiodaat@... wrote: Kim,I worked for the first 10 years I had sarcoidosis. Then the bugger came back, and I started with bilateral iritis, and my lung diffusion dropped to 48%--and I had to work (answering billing questions for Pacific Bell--60+ calls a day) with supplemental oxygen. I developed severe systemic sarcoid induced arthritis, dementia with short term memory loss (bummer to ask the customers phone # and problem 3x in 5 minutes) and the exhaustion and fatigue were like nothing I've ever experienced. I wasn't just exhausted, I couldn't stay awake, fell asleep driving and wrecked my car-- it was described as "just short of narcolepsy" by my GP. The body pain was excruciating-- and nothing would cut it. Kim, you need to go to our LINKS and print out the articles on sarcoidosis. Your MD's are still living in the 1950's where sarcoidosis was treated with prednisone and there wasn't anything else available to use. When sarcoidosis is effecting multiple systems and organs-- it's no longer a "simple" disease. It takes serious immunosupressive drugs--in combination--by trial and error until they get a combo that works for you-- and the disease knocks you on your ass.Social Security is beginning to understand that for a small portion of sarcoidosis patients-- those of us with systemic involvement, heart and lung and arthritic and bone and eyes and brain involvement--we are in serious risk of dying from this disease. Left untreated-- we will end up disabled, at best. If this disease is properly diagnosed, and treatment is started early enough, we could remain functional and at least able to do our normal "activities of daily living." Can we hold down full-time jobs-- maybe for a few years, but if we have to push and push thru the exhaustion and stress and pain we will end up disabled. The best way to treat the exhaustion and pain is to get adequate rest. That means learning to listen to your body--if it says it's nap time-- go to sleep. If it means that someone else takes the kids to soccer practice-- then work with someone to do that. (Make the games unstead of the practice-- that's the primary one to be at). My point being that you have to pace yourself-- and do a single run to the grocery store, even paying more to stop at one shop, instead of bargain shopping. It'll save your body. One other thing to get the SSDI people and the FMLA people to understand what you're dealing with: Having neurosarcoidosis and multiple systemic sarcoidosis is equivilent to having MS, Peripheral Neuropathy, Dementia, and Rheumatoid Arthritis--along with diabetes and clinical depression--all wrapped into one. If you look up AutoImmune Diseases, you'll find that the symptoms for all of these are the same. That is part of the problem, they have to rule out all of the other AI diseases, in order to tell us we have NS. Many times the diagnosis comes from Neuropsychological Testing, where the tests show that there is some delay or dsyfunction in the way our brain processes try to handle certain tasks. That is so very important for those of us with vasculitis--because we don't have "granulomas" or "plaques" on the brain CT's. Hope this helps,TracieNS Co-owner/moderator Get amazing travel prices for air and hotel in one click on Yahoo! FareChase Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi Tracie, Thank you for your very thoughtful and informative email. This helps very much. Being 26, just recently diagnosed, among a group of healthy friends, I feel in the dark. The only light is found in this group that not only teaches me the true facts (unlike the "facts" from the doctors), but also helps me remember I am not alone (nor am I crazy... as I've felt and been told!). Thanks again, Kim Pelletttiodaat@... wrote: Kim,I worked for the first 10 years I had sarcoidosis. Then the bugger came back, and I started with bilateral iritis, and my lung diffusion dropped to 48%--and I had to work (answering billing questions for Pacific Bell--60+ calls a day) with supplemental oxygen. I developed severe systemic sarcoid induced arthritis, dementia with short term memory loss (bummer to ask the customers phone # and problem 3x in 5 minutes) and the exhaustion and fatigue were like nothing I've ever experienced. I wasn't just exhausted, I couldn't stay awake, fell asleep driving and wrecked my car-- it was described as "just short of narcolepsy" by my GP. The body pain was excruciating-- and nothing would cut it. Kim, you need to go to our LINKS and print out the articles on sarcoidosis. Your MD's are still living in the 1950's where sarcoidosis was treated with prednisone and there wasn't anything else available to use. When sarcoidosis is effecting multiple systems and organs-- it's no longer a "simple" disease. It takes serious immunosupressive drugs--in combination--by trial and error until they get a combo that works for you-- and the disease knocks you on your ass.Social Security is beginning to understand that for a small portion of sarcoidosis patients-- those of us with systemic involvement, heart and lung and arthritic and bone and eyes and brain involvement--we are in serious risk of dying from this disease. Left untreated-- we will end up disabled, at best. If this disease is properly diagnosed, and treatment is started early enough, we could remain functional and at least able to do our normal "activities of daily living." Can we hold down full-time jobs-- maybe for a few years, but if we have to push and push thru the exhaustion and stress and pain we will end up disabled. The best way to treat the exhaustion and pain is to get adequate rest. That means learning to listen to your body--if it says it's nap time-- go to sleep. If it means that someone else takes the kids to soccer practice-- then work with someone to do that. (Make the games unstead of the practice-- that's the primary one to be at). My point being that you have to pace yourself-- and do a single run to the grocery store, even paying more to stop at one shop, instead of bargain shopping. It'll save your body. One other thing to get the SSDI people and the FMLA people to understand what you're dealing with: Having neurosarcoidosis and multiple systemic sarcoidosis is equivilent to having MS, Peripheral Neuropathy, Dementia, and Rheumatoid Arthritis--along with diabetes and clinical depression--all wrapped into one. If you look up AutoImmune Diseases, you'll find that the symptoms for all of these are the same. That is part of the problem, they have to rule out all of the other AI diseases, in order to tell us we have NS. Many times the diagnosis comes from Neuropsychological Testing, where the tests show that there is some delay or dsyfunction in the way our brain processes try to handle certain tasks. That is so very important for those of us with vasculitis--because we don't have "granulomas" or "plaques" on the brain CT's. Hope this helps,TracieNS Co-owner/moderator Get amazing travel prices for air and hotel in one click on Yahoo! FareChase Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Kim, You need to see another Dr. My Dr. told me flat out, that I could get disability b/c I never knew when I was going to get sick next, and I was always having a hard time breathing. It wasn't easy getting the disability, but I did get it, and thats a good thing, b/c I am sitting a lot during the day. Just having sarc alone can be painful, and it also seem to wear me out faster than before. Please keep in touch. Lot of Love Lynnekimpellett wrote: Hi everyone,I am having so much difficulty trying to maintain a normal 9-5 schedule and have applied for intermittent leave under FMLA. However, all of my doctors say people with sarcoid are usually able work normal full time hours and won't fill out any FMLA papers stating otherwise. I am curious to know how many others who are afflicted with sarcoid are working full time? Thanks in advance for your input! Kim Pellett To My New Family Love Lynne Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Kim, You need to see another Dr. My Dr. told me flat out, that I could get disability b/c I never knew when I was going to get sick next, and I was always having a hard time breathing. It wasn't easy getting the disability, but I did get it, and thats a good thing, b/c I am sitting a lot during the day. Just having sarc alone can be painful, and it also seem to wear me out faster than before. Please keep in touch. Lot of Love Lynnekimpellett wrote: Hi everyone,I am having so much difficulty trying to maintain a normal 9-5 schedule and have applied for intermittent leave under FMLA. However, all of my doctors say people with sarcoid are usually able work normal full time hours and won't fill out any FMLA papers stating otherwise. I am curious to know how many others who are afflicted with sarcoid are working full time? Thanks in advance for your input! Kim Pellett To My New Family Love Lynne Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Lynne, Are you having any problems with cognition? One of the ways I was able to get my private disability to pay was the fact that I am unable to multi-task per a neuropsych report. If you have not had the neuropsych tests and have problems with memory, multi-tasking etc....request to have the test done. This may aid you in your quest. My doctor thought I had MS at first, told me I could continue to work, but when I called him stuttering and unable to remember anything, he back me up on not working. So don't look at it as a physical thing only, we all know that it can also be in your brain. Terri G. Hi everyone, > I am having so much difficulty trying to maintain a normal 9-5 > schedule and have applied for intermittent leave under FMLA. However, > all of my doctors say people with sarcoid are usually able work normal > full time hours and won't fill out any FMLA papers stating otherwise. > > I am curious to know how many others who are afflicted with sarcoid > are working full time? > > Thanks in advance for your input! > Kim Pellett > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Lynne, Are you having any problems with cognition? One of the ways I was able to get my private disability to pay was the fact that I am unable to multi-task per a neuropsych report. If you have not had the neuropsych tests and have problems with memory, multi-tasking etc....request to have the test done. This may aid you in your quest. My doctor thought I had MS at first, told me I could continue to work, but when I called him stuttering and unable to remember anything, he back me up on not working. So don't look at it as a physical thing only, we all know that it can also be in your brain. Terri G. Hi everyone, > I am having so much difficulty trying to maintain a normal 9-5 > schedule and have applied for intermittent leave under FMLA. However, > all of my doctors say people with sarcoid are usually able work normal > full time hours and won't fill out any FMLA papers stating otherwise. > > I am curious to know how many others who are afflicted with sarcoid > are working full time? > > Thanks in advance for your input! > Kim Pellett > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Lynne, Are you having any problems with cognition? One of the ways I was able to get my private disability to pay was the fact that I am unable to multi-task per a neuropsych report. If you have not had the neuropsych tests and have problems with memory, multi-tasking etc....request to have the test done. This may aid you in your quest. My doctor thought I had MS at first, told me I could continue to work, but when I called him stuttering and unable to remember anything, he back me up on not working. So don't look at it as a physical thing only, we all know that it can also be in your brain. Terri G. Hi everyone, > I am having so much difficulty trying to maintain a normal 9-5 > schedule and have applied for intermittent leave under FMLA. However, > all of my doctors say people with sarcoid are usually able work normal > full time hours and won't fill out any FMLA papers stating otherwise. > > I am curious to know how many others who are afflicted with sarcoid > are working full time? > > Thanks in advance for your input! > Kim Pellett > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 I work full time, but my doctor did fill out FMLA papers so I would not be messed with about my care and appointments. Till social security stops reading medline.plus and understands what the systemic and neuro form of sarc is it will be a hard road to hoe. Hopefull the message will get there soon//Conniekimpellett wrote: Hi everyone,I am having so much difficulty trying to maintain a normal 9-5 schedule and have applied for intermittent leave under FMLA. However, all of my doctors say people with sarcoid are usually able work normal full time hours and won't fill out any FMLA papers stating otherwise. I am curious to know how many others who are afflicted with sarcoid are working full time? Thanks in advance for your input! Kim Pellett New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
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