Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene You can bury your head in the sand but we'll just drag you back out. LOL Besides it's more fun to rant & rave in here.:^} grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene I can sorta understand where you come from. I had to move from a 2 bedroom apt in a 2 family house to a 2 room dump when I first went on medical leave. It's very depressing sometimes but this place is a life saver.I also don't have medical coverage & I am over $10,000 in debt to the hospital where I get my treatments & there is no real end in sight. But it will all get better.......It can't get too much worse. LOL At least I pray it won't and you're included in my prayers. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene I can sorta understand where you come from. I had to move from a 2 bedroom apt in a 2 family house to a 2 room dump when I first went on medical leave. It's very depressing sometimes but this place is a life saver.I also don't have medical coverage & I am over $10,000 in debt to the hospital where I get my treatments & there is no real end in sight. But it will all get better.......It can't get too much worse. LOL At least I pray it won't and you're included in my prayers. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Rose I hope I don't attract auto immune diseases like I attract the wrong men. LOL Make that used to attract. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Rose I hope I don't attract auto immune diseases like I attract the wrong men. LOL Make that used to attract. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi Matt, Im in Sneads Ferry over on the South East coast of NC about an hour north of Wilmington. I gave up on trying to get SSDI years ago. I can still work and can earn far more than I would on Soc Sec Disability. I know because Steve Gets SSD-he only gets $940 mo which doesnt even cover the mortgage on the house at this point. As long as my employer in NY is willing to put up with my illness I will continue to do the best that I can- If I tried for SSD again we would lose everything before I ever got it. (thats what happened in 1992) I'm not eligible for state disability insurance from NY because I live here and I dont even know if NC has such a thing, but probably wouldnt cover me because I work for a company in NY. Its a catch 22. Irene-- In Neurosarcoidosis , Cohen wrote: > > Hi Ireane- where in NC do u live- I dont know if u are > near Chapel hill but the hospital there should be able > to provide u with low cost to free medical care- also > keep trying to get disability- it usally takes a few > tries to bget SSDI= also try to get a lawyer who can > help u get SSDI- If u are in the RTP area i can > recommend a few- Hopes this helps- Matt- (i grew up in > NC) > > --- ilambert1957 wrote: > > > I am not on any medication for the disease- I have > > really lousy > > health insurance now- I have only gone to the doctor > > once here in NC > > with my new medical insurance and it cost me $670 > > out of pocket just > > for a regular visit to renew my Rx for Fioranol for > > migraine headaches > > (this is the only medication I take-and only if I am > > desperate) and > > bloodwork- not a Neuro- in fact she was a Physicians > > Assistant. I > > only had one pill left and the prescription was over > > 2 1/2 yrs old > > but they did still lessen the headaches. Because of > > my past medical > > history it was costing me $584 a month for just me > > to have blue cross > > blue shield of NC- that was more than half a months > > pay for me, and I > > just couldnt do it anymore. Because I work for a > > company in a > > different state I have to carry my own health > > insurance so I can't > > get a company rate. Steve my hubby who has MS has > > medicare which is > > almost as bad as the plan I have. We are the > > proverbial " fall through > > the cracks " couple- I had applied for Soc Sec > > Disability but was > > turned down twice- Steve has been on SSD since 1990. > > I work from my > > home here in NC for a company in NY. I have been > > fortunate to have > > found a job that would allow me to work from home > > and to move here > > when I could no longer afford to live in NY. The > > Physicians Assistant > > at the appointment I went to wanted me to make an > > appointment with a > > Neuro but I simply cant afford it. I literally lost > > my house in > > forclosure in NY in 1992 due to illness and lack of > > decent insurance. > > I dont ever want to go through that again, it has > > taken me 14 years > > to crawl back from financial ruin. I spend a lot of > > time praying to > > get through one more day and deal with this one day > > at a time. Dr > > Rosen in NY did give me a definate DX of NS- that is > > why my insurance > > was so high when I applied here- if you have a DX > > already they can > > basically charge whatever they want. There are no > > easy answers here, > > I wish there were. Irene > > > > > > > > > > In a message dated 3/24/06 12:15:51 PM Pacific > > Standard Time, > > > ilambert@ writes: > > > > > > > > > > Ducky- so it is possible I have BOTH!! That > > could explain the > > Neuro > > > > saying NS and the Rheumy saying SLE. My future > > is looking bleaker > > all > > > > the time,I think I'll go bury my head back in > > the sand now..... : > > ( > > > > > > > > > > Irene, > > > I so totally understand. It does feel so much > > safer when we either > > have no > > > knowledge, or we have a definate diagnosis. > > > > > > although it's possible to have multiple > > auto-immune diseases--more > > than > > > likely it's the sarc that's causing secondary > > problems to the > > primary sarcoid > > > problem. Once we get the sarc under control, the > > other stuff will > > follow. > > > > > > What kind of treatment are you on? Have you taken > > a look at the > > LINKS and > > > ARCHIVES-- there is alot of info that is good to > > take to the MD's > > with you. > > > Since we are a Medical rarity (NS is a part of the > > list of diseases > > on the > > > National Organization of Rare Disease--NORD) and > > so we have to > > educate those around > > > us. > > > > > > Let us know how we can help, > > > Tracie > > > NS Co-owner/moderator > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi Matt, Im in Sneads Ferry over on the South East coast of NC about an hour north of Wilmington. I gave up on trying to get SSDI years ago. I can still work and can earn far more than I would on Soc Sec Disability. I know because Steve Gets SSD-he only gets $940 mo which doesnt even cover the mortgage on the house at this point. As long as my employer in NY is willing to put up with my illness I will continue to do the best that I can- If I tried for SSD again we would lose everything before I ever got it. (thats what happened in 1992) I'm not eligible for state disability insurance from NY because I live here and I dont even know if NC has such a thing, but probably wouldnt cover me because I work for a company in NY. Its a catch 22. Irene-- In Neurosarcoidosis , Cohen wrote: > > Hi Ireane- where in NC do u live- I dont know if u are > near Chapel hill but the hospital there should be able > to provide u with low cost to free medical care- also > keep trying to get disability- it usally takes a few > tries to bget SSDI= also try to get a lawyer who can > help u get SSDI- If u are in the RTP area i can > recommend a few- Hopes this helps- Matt- (i grew up in > NC) > > --- ilambert1957 wrote: > > > I am not on any medication for the disease- I have > > really lousy > > health insurance now- I have only gone to the doctor > > once here in NC > > with my new medical insurance and it cost me $670 > > out of pocket just > > for a regular visit to renew my Rx for Fioranol for > > migraine headaches > > (this is the only medication I take-and only if I am > > desperate) and > > bloodwork- not a Neuro- in fact she was a Physicians > > Assistant. I > > only had one pill left and the prescription was over > > 2 1/2 yrs old > > but they did still lessen the headaches. Because of > > my past medical > > history it was costing me $584 a month for just me > > to have blue cross > > blue shield of NC- that was more than half a months > > pay for me, and I > > just couldnt do it anymore. Because I work for a > > company in a > > different state I have to carry my own health > > insurance so I can't > > get a company rate. Steve my hubby who has MS has > > medicare which is > > almost as bad as the plan I have. We are the > > proverbial " fall through > > the cracks " couple- I had applied for Soc Sec > > Disability but was > > turned down twice- Steve has been on SSD since 1990. > > I work from my > > home here in NC for a company in NY. I have been > > fortunate to have > > found a job that would allow me to work from home > > and to move here > > when I could no longer afford to live in NY. The > > Physicians Assistant > > at the appointment I went to wanted me to make an > > appointment with a > > Neuro but I simply cant afford it. I literally lost > > my house in > > forclosure in NY in 1992 due to illness and lack of > > decent insurance. > > I dont ever want to go through that again, it has > > taken me 14 years > > to crawl back from financial ruin. I spend a lot of > > time praying to > > get through one more day and deal with this one day > > at a time. Dr > > Rosen in NY did give me a definate DX of NS- that is > > why my insurance > > was so high when I applied here- if you have a DX > > already they can > > basically charge whatever they want. There are no > > easy answers here, > > I wish there were. Irene > > > > > > > > > > In a message dated 3/24/06 12:15:51 PM Pacific > > Standard Time, > > > ilambert@ writes: > > > > > > > > > > Ducky- so it is possible I have BOTH!! That > > could explain the > > Neuro > > > > saying NS and the Rheumy saying SLE. My future > > is looking bleaker > > all > > > > the time,I think I'll go bury my head back in > > the sand now..... : > > ( > > > > > > > > > > Irene, > > > I so totally understand. It does feel so much > > safer when we either > > have no > > > knowledge, or we have a definate diagnosis. > > > > > > although it's possible to have multiple > > auto-immune diseases--more > > than > > > likely it's the sarc that's causing secondary > > problems to the > > primary sarcoid > > > problem. Once we get the sarc under control, the > > other stuff will > > follow. > > > > > > What kind of treatment are you on? Have you taken > > a look at the > > LINKS and > > > ARCHIVES-- there is alot of info that is good to > > take to the MD's > > with you. > > > Since we are a Medical rarity (NS is a part of the > > list of diseases > > on the > > > National Organization of Rare Disease--NORD) and > > so we have to > > educate those around > > > us. > > > > > > Let us know how we can help, > > > Tracie > > > NS Co-owner/moderator > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Hi Matt, Im in Sneads Ferry over on the South East coast of NC about an hour north of Wilmington. I gave up on trying to get SSDI years ago. I can still work and can earn far more than I would on Soc Sec Disability. I know because Steve Gets SSD-he only gets $940 mo which doesnt even cover the mortgage on the house at this point. As long as my employer in NY is willing to put up with my illness I will continue to do the best that I can- If I tried for SSD again we would lose everything before I ever got it. (thats what happened in 1992) I'm not eligible for state disability insurance from NY because I live here and I dont even know if NC has such a thing, but probably wouldnt cover me because I work for a company in NY. Its a catch 22. Irene-- In Neurosarcoidosis , Cohen wrote: > > Hi Ireane- where in NC do u live- I dont know if u are > near Chapel hill but the hospital there should be able > to provide u with low cost to free medical care- also > keep trying to get disability- it usally takes a few > tries to bget SSDI= also try to get a lawyer who can > help u get SSDI- If u are in the RTP area i can > recommend a few- Hopes this helps- Matt- (i grew up in > NC) > > --- ilambert1957 wrote: > > > I am not on any medication for the disease- I have > > really lousy > > health insurance now- I have only gone to the doctor > > once here in NC > > with my new medical insurance and it cost me $670 > > out of pocket just > > for a regular visit to renew my Rx for Fioranol for > > migraine headaches > > (this is the only medication I take-and only if I am > > desperate) and > > bloodwork- not a Neuro- in fact she was a Physicians > > Assistant. I > > only had one pill left and the prescription was over > > 2 1/2 yrs old > > but they did still lessen the headaches. Because of > > my past medical > > history it was costing me $584 a month for just me > > to have blue cross > > blue shield of NC- that was more than half a months > > pay for me, and I > > just couldnt do it anymore. Because I work for a > > company in a > > different state I have to carry my own health > > insurance so I can't > > get a company rate. Steve my hubby who has MS has > > medicare which is > > almost as bad as the plan I have. We are the > > proverbial " fall through > > the cracks " couple- I had applied for Soc Sec > > Disability but was > > turned down twice- Steve has been on SSD since 1990. > > I work from my > > home here in NC for a company in NY. I have been > > fortunate to have > > found a job that would allow me to work from home > > and to move here > > when I could no longer afford to live in NY. The > > Physicians Assistant > > at the appointment I went to wanted me to make an > > appointment with a > > Neuro but I simply cant afford it. I literally lost > > my house in > > forclosure in NY in 1992 due to illness and lack of > > decent insurance. > > I dont ever want to go through that again, it has > > taken me 14 years > > to crawl back from financial ruin. I spend a lot of > > time praying to > > get through one more day and deal with this one day > > at a time. Dr > > Rosen in NY did give me a definate DX of NS- that is > > why my insurance > > was so high when I applied here- if you have a DX > > already they can > > basically charge whatever they want. There are no > > easy answers here, > > I wish there were. Irene > > > > > > > > > > In a message dated 3/24/06 12:15:51 PM Pacific > > Standard Time, > > > ilambert@ writes: > > > > > > > > > > Ducky- so it is possible I have BOTH!! That > > could explain the > > Neuro > > > > saying NS and the Rheumy saying SLE. My future > > is looking bleaker > > all > > > > the time,I think I'll go bury my head back in > > the sand now..... : > > ( > > > > > > > > > > Irene, > > > I so totally understand. It does feel so much > > safer when we either > > have no > > > knowledge, or we have a definate diagnosis. > > > > > > although it's possible to have multiple > > auto-immune diseases--more > > than > > > likely it's the sarc that's causing secondary > > problems to the > > primary sarcoid > > > problem. Once we get the sarc under control, the > > other stuff will > > follow. > > > > > > What kind of treatment are you on? Have you taken > > a look at the > > LINKS and > > > ARCHIVES-- there is alot of info that is good to > > take to the MD's > > with you. > > > Since we are a Medical rarity (NS is a part of the > > list of diseases > > on the > > > National Organization of Rare Disease--NORD) and > > so we have to > > educate those around > > > us. > > > > > > Let us know how we can help, > > > Tracie > > > NS Co-owner/moderator > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 , I have been doing my best to ignore this illness for years now- dont tell me I have to face it again- I prefer to keep blaming everything on hormones and pre-menopause I hate sounding negative- I'm really not like that, I am usually a very upbeat person that can see the funnier side of things- I don't want everyone to get the wrong impression- I have learned to deal with this and our situation and rose above it. I have managed to get almost out of debt and even bought an awesome house here that we absolutely love. Erma Bombeck was one of my favorite writers- If life deals you lemons make lemonade!! Irene > > Irene > You can bury your head in the sand but we'll just drag > you back out. LOL Besides it's more fun to rant & rave > in here.:^} > > > grannylunatic@... > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 , You sound just like me!. Terri G. > > Rose > I hope I don't attract auto immune diseases like I > attract the wrong men. LOL Make that used to attract. > > > grannylunatic@... > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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