Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 In a message dated 1/10/03 12:41:57 AM Eastern Standard Time, hominid2@... writes: > I will be going out on > Hi Kimber, well, that's a big step and a major change for you. Please try to not be discouraged but to try to readjust your life in a most positive way. my experience in having done this is that it is harder to get used to than anyone would think. But, it can be done over a little time to get used to the changes in your daily life. Best Wishes, Poncho - GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Poncho, thank you. I've done my best to try and prepare myself for disability as I knew it would happen sooner or later with this disease. I just thought it would be later. But, I've been gathering stuff for all my hobbies so that I can have something to do and I plan to try and be more active here in the support group and doing more research on pancreatitis. I also intend to volunteer or something (after I've gotten my SSDI) to get me around people, even if it's only for one day a week for a few hours. And I love to be able to sleep in instead of getting up at 5:00am every day. I'm basically a night person and getting up early has always been difficult for me. Thanks for your post and your caring advise. Kimber -- Kimber Vallejo, CA hominid2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Poncho, thank you. I've done my best to try and prepare myself for disability as I knew it would happen sooner or later with this disease. I just thought it would be later. But, I've been gathering stuff for all my hobbies so that I can have something to do and I plan to try and be more active here in the support group and doing more research on pancreatitis. I also intend to volunteer or something (after I've gotten my SSDI) to get me around people, even if it's only for one day a week for a few hours. And I love to be able to sleep in instead of getting up at 5:00am every day. I'm basically a night person and getting up early has always been difficult for me. Thanks for your post and your caring advise. Kimber -- Kimber Vallejo, CA hominid2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Poncho, thank you. I've done my best to try and prepare myself for disability as I knew it would happen sooner or later with this disease. I just thought it would be later. But, I've been gathering stuff for all my hobbies so that I can have something to do and I plan to try and be more active here in the support group and doing more research on pancreatitis. I also intend to volunteer or something (after I've gotten my SSDI) to get me around people, even if it's only for one day a week for a few hours. And I love to be able to sleep in instead of getting up at 5:00am every day. I'm basically a night person and getting up early has always been difficult for me. Thanks for your post and your caring advise. Kimber -- Kimber Vallejo, CA hominid2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2003 Report Share Posted March 16, 2003 Hi Poncho... I would " argue " that the disability process is SO long, it can be 2-3 years, that Heidi will have plenty of time to think things through... Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2003 Report Share Posted March 16, 2003 Hi Poncho... I would " argue " that the disability process is SO long, it can be 2-3 years, that Heidi will have plenty of time to think things through... Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2003 Report Share Posted March 16, 2003 Hi Poncho... I would " argue " that the disability process is SO long, it can be 2-3 years, that Heidi will have plenty of time to think things through... Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 I recieved mine in1996 after two years of teaching what it does to people. I was straight forward and explained how it affected my daily life both physically and emotionly. A lot of times people hide the damage it does about the emotion wreck it can make of you by acting tough and not being totaly open. Be " open' and honest with them because the mental side is as important as the physical and when you put them together it causes more problems than a lot are aware of. I had kept a log of the two years and what dailey life was like to me. I recieved mine after being denied as usual. My attorney had me write and exolain to them since I knew more than he did by far and it worked for me. Good luck my friend and God be with you. Mountaineers are always free, Jim Foutty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 I recieved mine in1996 after two years of teaching what it does to people. I was straight forward and explained how it affected my daily life both physically and emotionly. A lot of times people hide the damage it does about the emotion wreck it can make of you by acting tough and not being totaly open. Be " open' and honest with them because the mental side is as important as the physical and when you put them together it causes more problems than a lot are aware of. I had kept a log of the two years and what dailey life was like to me. I recieved mine after being denied as usual. My attorney had me write and exolain to them since I knew more than he did by far and it worked for me. Good luck my friend and God be with you. Mountaineers are always free, Jim Foutty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 I recieved mine in1996 after two years of teaching what it does to people. I was straight forward and explained how it affected my daily life both physically and emotionly. A lot of times people hide the damage it does about the emotion wreck it can make of you by acting tough and not being totaly open. Be " open' and honest with them because the mental side is as important as the physical and when you put them together it causes more problems than a lot are aware of. I had kept a log of the two years and what dailey life was like to me. I recieved mine after being denied as usual. My attorney had me write and exolain to them since I knew more than he did by far and it worked for me. Good luck my friend and God be with you. Mountaineers are always free, Jim Foutty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 I can really relate to the early retirment thing. I havent worked in 9 years and yes I did get disability but I missed my job which I liked and the people I worked with. I wasnt ready to sit at home its to some degree boring after having an active life. People dont mean to be mean they just dont think. It sounds good to some not having to work as hard as they do but its not all its cracked up to be. Your social life that you had through work mates is lost after awhile because you dont have the same things in common any more. Some days you feel so rotten your not good for anything and its hard to keep positive when you feel so finished. We just have to keep going as this is the hand we have been delt and it could be worse. from Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi my name is and I have a question and hopefully you can answer. My son-in-law have lupus in the blood. His family practitioner is in the process of getting him a referral to see a lupus doctor. But in the mean time could you please give me a list of foods that a person with lupus should not be eating. For I was told that there are certain foods that would help the condition and if you happen to know that please share. >>> franceskerr@... 08/24/04 06:32AM >>> I think i started long term in 1995 and it was 1997 or 98 before i actually received my disability from social security. The company i worked for provided a company of lawyers that went to ss and anything else i needed. i was given a mental disability [ i fell apart right at work] thrilling scene, it must have been]wish i had known it was lupus at the time but oh well. i sat and cried thru the whole process with the judge did not understand 1 thing i brought a friend so she could tell me what happened if i ever asked and because she could answer any question about me after all we had been fiends 35 years. you never ever get disability 1 st time around rarely 2nd maybe 3rd. stick with it you will recieve benefits just keep going back with doc papers.if any one wants co. name email me and i find it for you.frances aka lilupielu " The LUPIES Store " Come check out our store... http://www.cafepress.com/thelupies " The LUPIES Web Page " http://www.itzarion.com/lupusgroup.html " The LUPIES online photo albums! " Check out what your fellow Lupies look like... http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi my name is and I have a question and hopefully you can answer. My son-in-law have lupus in the blood. His family practitioner is in the process of getting him a referral to see a lupus doctor. But in the mean time could you please give me a list of foods that a person with lupus should not be eating. For I was told that there are certain foods that would help the condition and if you happen to know that please share. >>> franceskerr@... 08/24/04 06:32AM >>> I think i started long term in 1995 and it was 1997 or 98 before i actually received my disability from social security. The company i worked for provided a company of lawyers that went to ss and anything else i needed. i was given a mental disability [ i fell apart right at work] thrilling scene, it must have been]wish i had known it was lupus at the time but oh well. i sat and cried thru the whole process with the judge did not understand 1 thing i brought a friend so she could tell me what happened if i ever asked and because she could answer any question about me after all we had been fiends 35 years. you never ever get disability 1 st time around rarely 2nd maybe 3rd. stick with it you will recieve benefits just keep going back with doc papers.if any one wants co. name email me and i find it for you.frances aka lilupielu " The LUPIES Store " Come check out our store... http://www.cafepress.com/thelupies " The LUPIES Web Page " http://www.itzarion.com/lupusgroup.html " The LUPIES online photo albums! " Check out what your fellow Lupies look like... http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi my name is and I have a question and hopefully you can answer. My son-in-law have lupus in the blood. His family practitioner is in the process of getting him a referral to see a lupus doctor. But in the mean time could you please give me a list of foods that a person with lupus should not be eating. For I was told that there are certain foods that would help the condition and if you happen to know that please share. >>> franceskerr@... 08/24/04 06:32AM >>> I think i started long term in 1995 and it was 1997 or 98 before i actually received my disability from social security. The company i worked for provided a company of lawyers that went to ss and anything else i needed. i was given a mental disability [ i fell apart right at work] thrilling scene, it must have been]wish i had known it was lupus at the time but oh well. i sat and cried thru the whole process with the judge did not understand 1 thing i brought a friend so she could tell me what happened if i ever asked and because she could answer any question about me after all we had been fiends 35 years. you never ever get disability 1 st time around rarely 2nd maybe 3rd. stick with it you will recieve benefits just keep going back with doc papers.if any one wants co. name email me and i find it for you.frances aka lilupielu " The LUPIES Store " Come check out our store... http://www.cafepress.com/thelupies " The LUPIES Web Page " http://www.itzarion.com/lupusgroup.html " The LUPIES online photo albums! " Check out what your fellow Lupies look like... http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 >>> rwhitney@... 08/24/04 07:09AM >>> Hi my name is and I have a question and hopefully you can answer. My son-in-law have lupus in the blood. His family practitioner is in the process of getting him a referral to see a lupus doctor. But in the mean time could you please give me a list of foods that a person with lupus should not be eating. For I was told that there are certain foods that would help the condition and if you happen to know that please share. >>> franceskerr@... 08/24/04 06:32AM >>> I think i started long term in 1995 and it was 1997 or 98 before i actually received my disability from social security. The company i worked for provided a company of lawyers that went to ss and anything else i needed. i was given a mental disability [ i fell apart right at work] thrilling scene, it must have been]wish i had known it was lupus at the time but oh well. i sat and cried thru the whole process with the judge did not understand 1 thing i brought a friend so she could tell me what happened if i ever asked and because she could answer any question about me after all we had been fiends 35 years. you never ever get disability 1 st time around rarely 2nd maybe 3rd. stick with it you will recieve benefits just keep going back with doc papers.if any one wants co. name email me and i find it for you.frances aka lilupielu " The LUPIES Store " Come check out our store... http://www.cafepress.com/thelupies " The LUPIES Web Page " http://www.itzarion.com/lupusgroup.html " The LUPIES online photo albums! " Check out what your fellow Lupies look like... http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 >>> rwhitney@... 08/24/04 07:09AM >>> Hi my name is and I have a question and hopefully you can answer. My son-in-law have lupus in the blood. His family practitioner is in the process of getting him a referral to see a lupus doctor. But in the mean time could you please give me a list of foods that a person with lupus should not be eating. For I was told that there are certain foods that would help the condition and if you happen to know that please share. >>> franceskerr@... 08/24/04 06:32AM >>> I think i started long term in 1995 and it was 1997 or 98 before i actually received my disability from social security. The company i worked for provided a company of lawyers that went to ss and anything else i needed. i was given a mental disability [ i fell apart right at work] thrilling scene, it must have been]wish i had known it was lupus at the time but oh well. i sat and cried thru the whole process with the judge did not understand 1 thing i brought a friend so she could tell me what happened if i ever asked and because she could answer any question about me after all we had been fiends 35 years. you never ever get disability 1 st time around rarely 2nd maybe 3rd. stick with it you will recieve benefits just keep going back with doc papers.if any one wants co. name email me and i find it for you.frances aka lilupielu " The LUPIES Store " Come check out our store... http://www.cafepress.com/thelupies " The LUPIES Web Page " http://www.itzarion.com/lupusgroup.html " The LUPIES online photo albums! " Check out what your fellow Lupies look like... http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 >>> rwhitney@... 08/24/04 07:09AM >>> Hi my name is and I have a question and hopefully you can answer. My son-in-law have lupus in the blood. His family practitioner is in the process of getting him a referral to see a lupus doctor. But in the mean time could you please give me a list of foods that a person with lupus should not be eating. For I was told that there are certain foods that would help the condition and if you happen to know that please share. >>> franceskerr@... 08/24/04 06:32AM >>> I think i started long term in 1995 and it was 1997 or 98 before i actually received my disability from social security. The company i worked for provided a company of lawyers that went to ss and anything else i needed. i was given a mental disability [ i fell apart right at work] thrilling scene, it must have been]wish i had known it was lupus at the time but oh well. i sat and cried thru the whole process with the judge did not understand 1 thing i brought a friend so she could tell me what happened if i ever asked and because she could answer any question about me after all we had been fiends 35 years. you never ever get disability 1 st time around rarely 2nd maybe 3rd. stick with it you will recieve benefits just keep going back with doc papers.if any one wants co. name email me and i find it for you.frances aka lilupielu " The LUPIES Store " Come check out our store... http://www.cafepress.com/thelupies " The LUPIES Web Page " http://www.itzarion.com/lupusgroup.html " The LUPIES online photo albums! " Check out what your fellow Lupies look like... http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 You will be okay. I had to leave my job as a special education teacher consultant in early Feb. after 23 years in this job and more before that. I also loved my job, but I saw how much it was taxing me and finally made the decision. I have found lots to keep me busy. I miss the kids and staff I worked with, but am learning to maintain contacts and hopefully will find ways to use my skills. I'm sure you will find it difficult in the beginning, but it does get better. Feel free to e-mail me privately if you need some support from a fellow " had to leave the job " person. Hugs, laurie > > > My neuro and pulmo doc both agree that I need to pursue disbility. I am > sad as this will probably be my last weekend working. I am a Labor and > delivery nurse and love my job. I have been a nurse for 20 yrs and am > sad to be leaving. But I need to do what is best for me. I have short > and long term disability that should be approved fairly quickly and > down the road file for social security disabilty. I am not worried > about that right now. I guess I am having a pity party right now but I > will be ok. Anyone have any suggestions? Thanks! > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 , I can totally relate to your situation and I'm really sorry. It has taken me about 2 years to get used to the idea of not working anymore. I too loved my job. Keep in mind however, that leaving your job doesn't mean leaving life ! I decided to return to school and finish my BS. Even if it takes forever for me to do it, I figured it was a good opportunity to stay socially active and mentally too. I only take one class per semester so I don't get burned out. I also registered with disability services in case I'm in the hospital or just too sick to attend class. Maybe you've been always wanting to find the time to learn a new craft or something ? Now is your chance ! Consider this an opportunity. Just remember to not overdo it...maybe one night a week for a couple of hours ? Also, as I mentioned in a previous post, get on that Social Security IMMEDIATELY !!! I can't stress it enough. The process can take a few years to get approved ( I've waited almost 2 years just for a hearing date and still don't have one ), and the pay is retro-active so you can apply now. Don't hesitate to hire an attorney who can help you through the process. The paperwork stinks...a real pain in the *** ! Hugs and best of luck to you, Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 I can empathize with you completely, I tried so hard for nearly a year almost dragging my right leg trying to hold down my job. I was a person who never missed work or went home sick but after a few times of both happening my supervisor went to bat for me and we tried for short term disability. My neurologist and my PCP both acted like I was commiting a sin by asking them for help and all I couuld get out of my neuro was that I had a gait problem due to Parkinsons (which I recently found out that I did not have) and my PCP stated only that I had Osteoarthritis in my left knee, of course I was turned down. I was told I could re-apply so I called Dr. Baker (my orthopaedic doctor) he had me come in and after he wrote them I was approved for the first short term disability right away. I am 69 years old and had been with Kansas Medicaid for nearly 20 years. They have been very kind to me and I am still classified as a non-working employee thru the end of the year so I am eligible for all benefits and I can keep my Cigna insurance to pay for my medications. I will apply for Medicare in 2006 and hopefully they will have some kind of prescription added by then. Leaving my work was hard for me and I also felt I should quit driving so I am at the mercy of Topeka Transit as I use their Lift service to get me to the doctors. Don't wait to file for disability as my 48 year old son filed when he knew he was not going to be able to keep climbing ladders, etc and disability claim was not approved until last December and he had passed away August 25, 2004 but at least his medical bills were taken care of by them. I hope your disability claims and all else in your life will go as smoothly as possible. I will keep you in my thoughts andprayers, Dolores lanebristow lanebristow@...> wrote: My neuro and pulmo doc both agree that I need to pursue disbility. I am sad as this will probably be my last weekend working. I am a Labor and delivery nurse and love my job. I have been a nurse for 20 yrs and am sad to be leaving. But I need to do what is best for me. I have short and long term disability that should be approved fairly quickly and down the road file for social security disabilty. I am not worried about that right now. I guess I am having a pity party right now but I will be ok. Anyone have any suggestions? Thanks! Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 I can empathize with you completely, I tried so hard for nearly a year almost dragging my right leg trying to hold down my job. I was a person who never missed work or went home sick but after a few times of both happening my supervisor went to bat for me and we tried for short term disability. My neurologist and my PCP both acted like I was commiting a sin by asking them for help and all I couuld get out of my neuro was that I had a gait problem due to Parkinsons (which I recently found out that I did not have) and my PCP stated only that I had Osteoarthritis in my left knee, of course I was turned down. I was told I could re-apply so I called Dr. Baker (my orthopaedic doctor) he had me come in and after he wrote them I was approved for the first short term disability right away. I am 69 years old and had been with Kansas Medicaid for nearly 20 years. They have been very kind to me and I am still classified as a non-working employee thru the end of the year so I am eligible for all benefits and I can keep my Cigna insurance to pay for my medications. I will apply for Medicare in 2006 and hopefully they will have some kind of prescription added by then. Leaving my work was hard for me and I also felt I should quit driving so I am at the mercy of Topeka Transit as I use their Lift service to get me to the doctors. Don't wait to file for disability as my 48 year old son filed when he knew he was not going to be able to keep climbing ladders, etc and disability claim was not approved until last December and he had passed away August 25, 2004 but at least his medical bills were taken care of by them. I hope your disability claims and all else in your life will go as smoothly as possible. I will keep you in my thoughts andprayers, Dolores lanebristow lanebristow@...> wrote: My neuro and pulmo doc both agree that I need to pursue disbility. I am sad as this will probably be my last weekend working. I am a Labor and delivery nurse and love my job. I have been a nurse for 20 yrs and am sad to be leaving. But I need to do what is best for me. I have short and long term disability that should be approved fairly quickly and down the road file for social security disabilty. I am not worried about that right now. I guess I am having a pity party right now but I will be ok. Anyone have any suggestions? Thanks! Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Hi Alice, I know how you felt about leaving work, thankfully I found a way to be useful to people and keep myself busy (so to speak). Catholic Charities in Topeka has a program called " Friendly Visitors " , it is made up of caring (mostly disabled) people who make phone calls to homebound people. I first became aware of this program when I was trying to find a way to keep my Mother in her home after she was diagnosed with Alzheimers. I make phone calls for them and there is a 91 year old lady who is a diabetic that my call to her is a signal for her to get out of bed, check her blood sugar, take her medicine and get her something for breakfast. There are times when I feel I need to give her a second call to make sure she is up and going. The morning after I had spend the night in ICU with my son I couldn't remember her phone number so by the time my head started to clear I called Catholic Charities to explain and have someone give her a call, she had already called them and asked them to check on me as I hadn't called her and she was afraid something was wrong. I am so happy that I feel I can be of some use to someone else, I had worked since I was 12 years old and after i lost my husband I was like you my work was my life. Dolores Alice justagram14@...> wrote: I have to ditto the replies you’ve gotten thus far. I was totally involved with my job which became my life. I worked an easy 65 hour week on the job and brought it home too doing more late at night and over the weekends on the computer the company provided me. I absolutely loved my job. When I was forced to leave it, I thought that it was the end of my life and there was no way I could handle that but you know – I did and over time, I feel that leaving the job stabilized my health and although I’m not in perfect health, I believe I have more endurance than I had before. Of course, you have to know that before I left on disability, I went thru a period of about 6 months when I struggled to get from the living room to the bedroom or the bathroom. Every movement was a chore and the Mito symptoms were extremely bad. Since then, I have had some periods of extreme health problems but being home allows me to take care of those bad days. I’ve kept myself busy with other things. You would be surprised how busy you can be when you are not working. There’s just so much that can take the place of work and keeping yourself at the right pace is something you’ll find necessary but easy to do. Think about this move to disability as a positive step in helping yourself after having given so much of yourself to others in the past. Now you are doing something for you. Eventually, this becomes easy and you will grow to enjoy it. Alice -- No virus found in this incoming message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.10.3 - Release Date: 4/25/2005 -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.308 / Virus Database: 266.10.3 - Release Date: 4/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 My grandmother benefited greatly from this type of program - often local fire departments will do this on off hours, that's how it worked with my grandmother. Of course it matters how your voice and hearing are to do this, but it is a great thing to do. One thing that is sorely needed is readers for the blind, namely to put books on tape. My colleague is a professor who is blind, and he depends heavily on textbooks read by sighted people and stored on tape for use by blind professors and students. You might have to travel to a center to do this, but the only activity is reading out loud, so depending upon your condition it might work out well. Take care, RH > > I have to ditto the replies you've gotten thus far. I was totally involved > with my job which became my life. I worked an easy 65 hour week on the job > and brought it home too doing more late at night and over the weekends on > the computer the company provided me. I absolutely loved my job. When I > was forced to leave it, I thought that it was the end of my life and there > was no way I could handle that but you know – I did and over time, I feel > that leaving the job stabilized my health and although I'm not in perfect > health, I believe I have more endurance than I had before. Of course, you > have to know that before I left on disability, I went thru a period of about > 6 months when I struggled to get from the living room to the bedroom or the > bathroom. Every movement was a chore and the Mito symptoms were extremely > bad. Since then, I have had some periods of extreme health problems but > being home allows me to take care of those bad days. > > > > I've kept myself busy with other things. You would be surprised how busy > you can be when you are not working. There's just so much that can take the > place of work and keeping yourself at the right pace is something you'll > find necessary but easy to do. Think about this move to disability as a > positive step in helping yourself after having given so much of yourself to > others in the past. Now you are doing something for you. Eventually, this > becomes easy and you will grow to enjoy it. > > > > Alice > > > > > -- > No virus found in this incoming message. > Checked by AVG Anti-Virus. > Version: 7.0.308 / Virus Database: 266.10.3 - Release Date: 4/25/2005 > > > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.308 / Virus Database: 266.10.3 - Release Date: 4/25/2005 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 We get many questions about disability--and how to go about applying for SSDI. It is possible to get SSDI when you have NS. You will need to call your local Social Security office, and either go by or ask them to mail you the application. Once you have been unable to work for 6 consecutive months-- you need to get the ball rolling on your SSDI. It is important to make sure you meet all their deadlines--as any interruption in not getting the forms in to them, can make it so that you have to go thru the whole process again--and you lose your start date if you don't comply with the deadlines. You want to get the names and addresses down of all the MD's you've seen. You will want copies of your medical records sent to SSDI (Soc security will give you a "Release of Med Records" form to sign). Also, request a copy of your medical records be sent to you. That way you have the information also. The easiest way to request a copy of your records is to ask for a copy of your XRAY, CT's, Labs, MRI's--etc. when you go into the office for your appts with the MD. Keep a folder--so that as you go from specialist to specialist--you can give them the copy of the latest work that has been done. (Your MD's may be slow to get this to the other MD's--so hand carry your reports.) Write down your symptoms, and how they effect you. For example, if you can no longer go grocery shopping without being so exhausted that you're down in bed for the next couple of days-- state that. If you find you have problems remembering things--write it down. If you can't finish projects--write it down. If you don't know where you parked your car because of short-term memory loss-- write it down. If you need a cane, or oxygen, or a powerchair to get around--write it down. If you need help with the finances because you can no longer get your bills paid on time--or can no longer balance the checkbook--write it down. If you've lost the ability to enjoy sex, or have problems with family not understanding what has happened to you-- write it down. Stress what you have lost due to chronic illness. Don't powder coat it-- tell it like it is. Even if you don't have biopsy proven sarcoidosis-- yet have all the pain, neuropathy, the comprehension loss, the short-term memory loss, the exhaustion, fatigue, etc. there are tests that can prove the "subjective complaints" that you're trying to get the MD to understand. This test is Neuropsych Testing. This test can prove to the MD's that you aren't faking (malingering) and that depression alone is not the cause of your problems. So don't be afraid to request that your MD set up an appt with a Neuropsychiatrist. EMG's, EEG's, Sleep Studies, are also good tests to have done. They show brain waves (or slowed response in brain waves) and can also prove that there are problems that may not show up on CT's or MRI's. You will need several friends, bosses, co-workers or family members to write letters on your behalf that state what they have seen in the way of changes. If you have a close friend that you work with--and they can state that you used to "run the office", be able to "problem solve" or "multi-task"--and now aren't able to get the paper to the desk before you forget what you were trying to do-- have them write it down. If you've got a good friend that can attest to the fact that you can hardly carry on an intelligent conversation--or finish your sentences when you're talking--ask them to write it down. (SSDI will ask for 2 or 3 references). If you can't comprehend what you read--or if you have to reread everything multiple times before you understand it-- write it down. If you find that filling out the form to apply for your SSDI is too hard to do--so you have someone helping you-- let them know that. These are all things that will help you get approved for your SSDI. There are articles in our LINKS section that relate to this topic. Here is the address: http://groups.yahoo.com/group/Neurosarcoidosis Go to the LINKS and check out the folders and different sites. Also in the ARCHIVES you will find many posts about disability and SSDI, SSI as well as the tests and exams that should be done. Please let us know if we can help you further. Sincerely, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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