Re: Re: The purpose of our list

[Guest guest]

Stu -- I understand where you are coming from -- we are

all in the same boat........I have lost lots also and I know

most of the others have. This sarc monster is a bad one

and hits hard......it is devastating to lose friends; lose the

ability to do things that you have always done; in fact, it

is just as you lost "yourself" and are a different person!

That is hard to take.......I know........been there and I am

sure many others have. We have had some pretty bad

experiences in the past with some people who tried to

destroy our list and we just do not want that to happen

again..........that is why we are careful. We want to help

everyone as much as we can but we also have to

protect them. I hope you understand what I am trying

to say.........

With compassion and understanding,

Darlene

NS Co-Owner/Moderator

Re: The purpose of our list

Thanks Judy, and well said, I guess i just get a little hot under thecollar when I hear how bad everything is all the time. Over the last15 years Ive had just about everything I ever worked for or wantedtaken away from me, lost nearly everyone I every knew except my wifeand three kids, watched as all but one of my good friends have walkedaway because they cant handle watching what this damned disease hasdone to me, gone from being fairly well off to damned near poor, havejust about lost the ability to walk, lift, think, speak intelligently,go places without a huge effort, spend time with my kids, dont reallyexpect to be able to watch my grandkids grow up and get married likeive always dreamed of, most of the plans we make for the future arewhat Liz will do when I am gone, and if you ask me, this is a prettygood world that God has given us, I thank him every day for what I DOhave, granted sometimes I do so through tears of pain, I appreciatewhat insurance DOES pay for because the time may come when they wontfor anything, I look for the HAPPY because my life has seen plenty ofthe sad, and I just cant stomach listening, or reading how BADeverything is. So, if I broke the rules yesterday, I am sorry, andwont do it again, if I angered anyone, I appologize, but if I madeeven one of you stop and think that you have alot to be thankful forand should be happy even though sometimes things seem overwhelmingthen what I said doesnt seem all that terrible.Life is a gift and if we dont stop once in awhile to appreciate thewrappings we are missing the best of what God has given us, and thatis truly a shame.Stu>> Maybe I am missing the boat, what I perceive is not debatingpolitical issues but a member who has been financially destroyed bythis horrible disease. It's really rotten that one must considerrefinancing their home in order to do what is necessary to survive.> > I myself have either sarc in my bone marrow or anemia of chronicdisease. My weekly injections cost about $$3800.00. My Medicarecopays for the time I was in the hospital were more than we receivedin our social security checks. If I had not been given thesupplemental insurance as a benefit with my disability determinationby the state, we would have lost everything we had.> > I am now in the process of going to see Dr. Baughman. We are withoutthe finances to go their by an airline flight, bus or any other typeof transportation. My friend told us about the angel flights, we arerequesting there assistance, the first company said that our wonderfulprednisone weight exceeded their weight limits for the Cessna 150 thatmost of the pilots use. I also had to be able to be able y\to use 18inch steps. Now that is a joke because if you remember 12 inch stepsis how I ripped all the skin off my lower legs.> > The point of all this is that in addition to neurosarcoidosis, Ialso have venous stasis and extreme lymph edema.> > These issues are all part of the things that the symptoms of thisdisease causes. If I had not been on prednisone and Imuran (I had tostop the imuran 30days before my total knee surgeries) I probablywould not been so immunocompromised which led me to become infectedwith MRSA for 2 1/2 years.> > It's all inter related. This is not the life that any of us plannedto have. I would give anything to be able to get up and clean myhouse. But my impairments make that an impossibility. I can't affordto pay someone to do the cleaning, so once again we are put in thesettle for situation. Just another loss to our self esteem.> > Judy in PA>

[Guest guest]

Stu -- I understand where you are coming from -- we are

all in the same boat........I have lost lots also and I know

most of the others have. This sarc monster is a bad one

and hits hard......it is devastating to lose friends; lose the

ability to do things that you have always done; in fact, it

is just as you lost "yourself" and are a different person!

That is hard to take.......I know........been there and I am

sure many others have. We have had some pretty bad

experiences in the past with some people who tried to

destroy our list and we just do not want that to happen

again..........that is why we are careful. We want to help

everyone as much as we can but we also have to

protect them. I hope you understand what I am trying

to say.........

With compassion and understanding,

Darlene

NS Co-Owner/Moderator

Re: The purpose of our list

Thanks Judy, and well said, I guess i just get a little hot under thecollar when I hear how bad everything is all the time. Over the last15 years Ive had just about everything I ever worked for or wantedtaken away from me, lost nearly everyone I every knew except my wifeand three kids, watched as all but one of my good friends have walkedaway because they cant handle watching what this damned disease hasdone to me, gone from being fairly well off to damned near poor, havejust about lost the ability to walk, lift, think, speak intelligently,go places without a huge effort, spend time with my kids, dont reallyexpect to be able to watch my grandkids grow up and get married likeive always dreamed of, most of the plans we make for the future arewhat Liz will do when I am gone, and if you ask me, this is a prettygood world that God has given us, I thank him every day for what I DOhave, granted sometimes I do so through tears of pain, I appreciatewhat insurance DOES pay for because the time may come when they wontfor anything, I look for the HAPPY because my life has seen plenty ofthe sad, and I just cant stomach listening, or reading how BADeverything is. So, if I broke the rules yesterday, I am sorry, andwont do it again, if I angered anyone, I appologize, but if I madeeven one of you stop and think that you have alot to be thankful forand should be happy even though sometimes things seem overwhelmingthen what I said doesnt seem all that terrible.Life is a gift and if we dont stop once in awhile to appreciate thewrappings we are missing the best of what God has given us, and thatis truly a shame.Stu>> Maybe I am missing the boat, what I perceive is not debatingpolitical issues but a member who has been financially destroyed bythis horrible disease. It's really rotten that one must considerrefinancing their home in order to do what is necessary to survive.> > I myself have either sarc in my bone marrow or anemia of chronicdisease. My weekly injections cost about $$3800.00. My Medicarecopays for the time I was in the hospital were more than we receivedin our social security checks. If I had not been given thesupplemental insurance as a benefit with my disability determinationby the state, we would have lost everything we had.> > I am now in the process of going to see Dr. Baughman. We are withoutthe finances to go their by an airline flight, bus or any other typeof transportation. My friend told us about the angel flights, we arerequesting there assistance, the first company said that our wonderfulprednisone weight exceeded their weight limits for the Cessna 150 thatmost of the pilots use. I also had to be able to be able y\to use 18inch steps. Now that is a joke because if you remember 12 inch stepsis how I ripped all the skin off my lower legs.> > The point of all this is that in addition to neurosarcoidosis, Ialso have venous stasis and extreme lymph edema.> > These issues are all part of the things that the symptoms of thisdisease causes. If I had not been on prednisone and Imuran (I had tostop the imuran 30days before my total knee surgeries) I probablywould not been so immunocompromised which led me to become infectedwith MRSA for 2 1/2 years.> > It's all inter related. This is not the life that any of us plannedto have. I would give anything to be able to get up and clean myhouse. But my impairments make that an impossibility. I can't affordto pay someone to do the cleaning, so once again we are put in thesettle for situation. Just another loss to our self esteem.> > Judy in PA>

[Guest guest]

ver the last15 years Ive had just about everything I ever worked for or wantedtaken away from me, lost nearly everyone I every knew except my wifeand three kids, watched as all but one of my good friends have walkedaway because they cant handle watching what this damned disease hasdone to me, gone from being fairly well off to damned near poor, havejust about lost the ability to walk, lift, think, speak intelligently,go places without a huge effort, spend time with my kids, dont reallyexpect to be able to watch my grandkids grow up and get married likeive always dreamed of, most of the plans we make for the future arewhat Liz will do when I am gone, and if you ask me, this is a prettygood world that God has given us, I thank him every day for what I DOhave, granted sometimes I do so through tears of pain, I appreciatewhat insurance DOES pay for because the time may

come when they wontfor anything, I look for the HAPPY because my life has seen plenty ofthe sad,lizzyandstu wrote: Thanks Judy, and well said, I guess i just get a little hot under thecollar when I hear how bad everything is all the time. Over the last15 years Ive had just about everything I ever worked for or wantedtaken away from me, lost nearly everyone I every knew except my wifeand three kids, watched as all but one of my good friends have walkedaway because they cant handle watching what this damned disease hasdone to me, gone from being fairly well off to damned near poor, havejust about lost the ability to walk, lift, think, speak intelligently,go places without a huge effort, spend time with my kids, dont reallyexpect to be able to watch my grandkids grow

up and get married likeive always dreamed of, most of the plans we make for the future arewhat Liz will do when I am gone, and if you ask me, this is a prettygood world that God has given us, I thank him every day for what I DOhave, granted sometimes I do so through tears of pain, I appreciatewhat insurance DOES pay for because the time may come when they wontfor anything, I look for the HAPPY because my life has seen plenty ofthe sad, and I just cant stomach listening, or reading how BADeverything is. So, if I broke the rules yesterday, I am sorry, andwont do it again, if I angered anyone, I appologize, but if I madeeven one of you stop and think that you have alot to be thankful forand should be happy even though sometimes things seem overwhelmingthen what I said doesnt seem all that terrible.Life is a gift and if we dont stop once in awhile to appreciate thewrappings we are missing the best of what God has

given us, and thatis truly a shame.Stu Hey Stu, I can concur with everything you have described in this part of the message. It is very discouraging when all the things you took for granted in life are taken away. Your whole self-identity changes and I know I miss mine very much. Hugs, Debbie Co-Moderator >> Maybe I am missing the boat, what I perceive is not debatingpolitical issues but a member who has been financially destroyed bythis horrible disease. It's really rotten that one must considerrefinancing their home in order to do what is necessary to survive.> > I myself have either sarc in my bone marrow or anemia of chronicdisease. My weekly injections cost about $$3800.00. My Medicarecopays for the time I was in the

hospital were more than we receivedin our social security checks. If I had not been given thesupplemental insurance as a benefit with my disability determinationby the state, we would have lost everything we had.> > I am now in the process of going to see Dr. Baughman. We are withoutthe finances to go their by an airline flight, bus or any other typeof transportation. My friend told us about the angel flights, we arerequesting there assistance, the first company said that our wonderfulprednisone weight exceeded their weight limits for the Cessna 150 thatmost of the pilots use. I also had to be able to be able y\to use 18inch steps. Now that is a joke because if you remember 12 inch stepsis how I ripped all the skin off my lower legs.> > The point of all this is that in addition to neurosarcoidosis, Ialso have venous stasis and extreme lymph edema.> > These issues are all part of the

things that the symptoms of thisdisease causes. If I had not been on prednisone and Imuran (I had tostop the imuran 30days before my total knee surgeries) I probablywould not been so immunocompromised which led me to become infectedwith MRSA for 2 1/2 years.> > It's all inter related. This is not the life that any of us plannedto have. I would give anything to be able to get up and clean myhouse. But my impairments make that an impossibility. I can't affordto pay someone to do the cleaning, so once again we are put in thesettle for situation. Just another loss to our self esteem.> > Judy in PA>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings

of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

ver the last15 years Ive had just about everything I ever worked for or wantedtaken away from me, lost nearly everyone I every knew except my wifeand three kids, watched as all but one of my good friends have walkedaway because they cant handle watching what this damned disease hasdone to me, gone from being fairly well off to damned near poor, havejust about lost the ability to walk, lift, think, speak intelligently,go places without a huge effort, spend time with my kids, dont reallyexpect to be able to watch my grandkids grow up and get married likeive always dreamed of, most of the plans we make for the future arewhat Liz will do when I am gone, and if you ask me, this is a prettygood world that God has given us, I thank him every day for what I DOhave, granted sometimes I do so through tears of pain, I appreciatewhat insurance DOES pay for because the time may

come when they wontfor anything, I look for the HAPPY because my life has seen plenty ofthe sad,lizzyandstu wrote: Thanks Judy, and well said, I guess i just get a little hot under thecollar when I hear how bad everything is all the time. Over the last15 years Ive had just about everything I ever worked for or wantedtaken away from me, lost nearly everyone I every knew except my wifeand three kids, watched as all but one of my good friends have walkedaway because they cant handle watching what this damned disease hasdone to me, gone from being fairly well off to damned near poor, havejust about lost the ability to walk, lift, think, speak intelligently,go places without a huge effort, spend time with my kids, dont reallyexpect to be able to watch my grandkids grow

up and get married likeive always dreamed of, most of the plans we make for the future arewhat Liz will do when I am gone, and if you ask me, this is a prettygood world that God has given us, I thank him every day for what I DOhave, granted sometimes I do so through tears of pain, I appreciatewhat insurance DOES pay for because the time may come when they wontfor anything, I look for the HAPPY because my life has seen plenty ofthe sad, and I just cant stomach listening, or reading how BADeverything is. So, if I broke the rules yesterday, I am sorry, andwont do it again, if I angered anyone, I appologize, but if I madeeven one of you stop and think that you have alot to be thankful forand should be happy even though sometimes things seem overwhelmingthen what I said doesnt seem all that terrible.Life is a gift and if we dont stop once in awhile to appreciate thewrappings we are missing the best of what God has

given us, and thatis truly a shame.Stu Hey Stu, I can concur with everything you have described in this part of the message. It is very discouraging when all the things you took for granted in life are taken away. Your whole self-identity changes and I know I miss mine very much. Hugs, Debbie Co-Moderator >> Maybe I am missing the boat, what I perceive is not debatingpolitical issues but a member who has been financially destroyed bythis horrible disease. It's really rotten that one must considerrefinancing their home in order to do what is necessary to survive.> > I myself have either sarc in my bone marrow or anemia of chronicdisease. My weekly injections cost about $$3800.00. My Medicarecopays for the time I was in the

hospital were more than we receivedin our social security checks. If I had not been given thesupplemental insurance as a benefit with my disability determinationby the state, we would have lost everything we had.> > I am now in the process of going to see Dr. Baughman. We are withoutthe finances to go their by an airline flight, bus or any other typeof transportation. My friend told us about the angel flights, we arerequesting there assistance, the first company said that our wonderfulprednisone weight exceeded their weight limits for the Cessna 150 thatmost of the pilots use. I also had to be able to be able y\to use 18inch steps. Now that is a joke because if you remember 12 inch stepsis how I ripped all the skin off my lower legs.> > The point of all this is that in addition to neurosarcoidosis, Ialso have venous stasis and extreme lymph edema.> > These issues are all part of the

things that the symptoms of thisdisease causes. If I had not been on prednisone and Imuran (I had tostop the imuran 30days before my total knee surgeries) I probablywould not been so immunocompromised which led me to become infectedwith MRSA for 2 1/2 years.> > It's all inter related. This is not the life that any of us plannedto have. I would give anything to be able to get up and clean myhouse. But my impairments make that an impossibility. I can't affordto pay someone to do the cleaning, so once again we are put in thesettle for situation. Just another loss to our self esteem.> > Judy in PA>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings

of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database