The purpose of our list

[Guest guest]

Maybe I am missing the boat, what I perceive is not debating political issues but a member who has been financially destroyed by this horrible disease. It's really rotten that one must consider refinancing their home in order to do what is necessary to survive.

I myself have either sarc in my bone marrow or anemia of chronic disease. My weekly injections cost about $$3800.00. My Medicare copays for the time I was in the hospital were more than we received in our social security checks. If I had not been given the supplemental insurance as a benefit with my disability determination by the state, we would have lost everything we had.

I am now in the process of going to see Dr. Baughman. We are without the finances to go their by an airline flight, bus or any other type of transportation. My friend told us about the angel flights, we are requesting there assistance, the first company said that our wonderful prednisone weight exceeded their weight limits for the Cessna 150 that most of the pilots use. I also had to be able to be able y\to use 18 inch steps. Now that is a joke because if you remember 12 inch steps is how I ripped all the skin off my lower legs.

The point of all this is that in addition to neurosarcoidosis, I also have venous stasis and extreme lymph edema.

These issues are all part of the things that the symptoms of this disease causes. If I had not been on prednisone and Imuran (I had to stop the imuran 30days before my total knee surgeries) I probably would not been so immunocompromised which led me to become infected with MRSA for 2 1/2 years.

It's all inter related. This is not the life that any of us planned to have. I would give anything to be able to get up and clean my house. But my impairments make that an impossibility. I can't afford to pay someone to do the cleaning, so once again we are put in the settle for situation. Just another loss to our self esteem.

Judy in PA

[Guest guest]

Maybe I am missing the boat, what I perceive is not debating political issues but a member who has been financially destroyed by this horrible disease. It's really rotten that one must consider refinancing their home in order to do what is necessary to survive.

I myself have either sarc in my bone marrow or anemia of chronic disease. My weekly injections cost about $$3800.00. My Medicare copays for the time I was in the hospital were more than we received in our social security checks. If I had not been given the supplemental insurance as a benefit with my disability determination by the state, we would have lost everything we had.

I am now in the process of going to see Dr. Baughman. We are without the finances to go their by an airline flight, bus or any other type of transportation. My friend told us about the angel flights, we are requesting there assistance, the first company said that our wonderful prednisone weight exceeded their weight limits for the Cessna 150 that most of the pilots use. I also had to be able to be able y\to use 18 inch steps. Now that is a joke because if you remember 12 inch steps is how I ripped all the skin off my lower legs.

The point of all this is that in addition to neurosarcoidosis, I also have venous stasis and extreme lymph edema.

These issues are all part of the things that the symptoms of this disease causes. If I had not been on prednisone and Imuran (I had to stop the imuran 30days before my total knee surgeries) I probably would not been so immunocompromised which led me to become infected with MRSA for 2 1/2 years.

It's all inter related. This is not the life that any of us planned to have. I would give anything to be able to get up and clean my house. But my impairments make that an impossibility. I can't afford to pay someone to do the cleaning, so once again we are put in the settle for situation. Just another loss to our self esteem.

Judy in PA

[Guest guest]

Thanks Judy, and well said, I guess i just get a little hot under the

collar when I hear how bad everything is all the time. Over the last

15 years Ive had just about everything I ever worked for or wanted

taken away from me, lost nearly everyone I every knew except my wife

and three kids, watched as all but one of my good friends have walked

away because they cant handle watching what this damned disease has

done to me, gone from being fairly well off to damned near poor, have

just about lost the ability to walk, lift, think, speak intelligently,

go places without a huge effort, spend time with my kids, dont really

expect to be able to watch my grandkids grow up and get married like

ive always dreamed of, most of the plans we make for the future are

what Liz will do when I am gone, and if you ask me, this is a pretty

good world that God has given us, I thank him every day for what I DO

have, granted sometimes I do so through tears of pain, I appreciate

what insurance DOES pay for because the time may come when they wont

for anything, I look for the HAPPY because my life has seen plenty of

the sad, and I just cant stomach listening, or reading how BAD

everything is. So, if I broke the rules yesterday, I am sorry, and

wont do it again, if I angered anyone, I appologize, but if I made

even one of you stop and think that you have alot to be thankful for

and should be happy even though sometimes things seem overwhelming

then what I said doesnt seem all that terrible.

Life is a gift and if we dont stop once in awhile to appreciate the

wrappings we are missing the best of what God has given us, and that

is truly a shame.

Stu

>

> Maybe I am missing the boat, what I perceive is not debating

political issues but a member who has been financially destroyed by

this horrible disease. It's really rotten that one must consider

refinancing their home in order to do what is necessary to survive.

>

> I myself have either sarc in my bone marrow or anemia of chronic

disease. My weekly injections cost about $$3800.00. My Medicare

copays for the time I was in the hospital were more than we received

in our social security checks. If I had not been given the

supplemental insurance as a benefit with my disability determination

by the state, we would have lost everything we had.

>

> I am now in the process of going to see Dr. Baughman. We are without

the finances to go their by an airline flight, bus or any other type

of transportation. My friend told us about the angel flights, we are

requesting there assistance, the first company said that our wonderful

prednisone weight exceeded their weight limits for the Cessna 150 that

most of the pilots use. I also had to be able to be able y\to use 18

inch steps. Now that is a joke because if you remember 12 inch steps

is how I ripped all the skin off my lower legs.

>

> The point of all this is that in addition to neurosarcoidosis, I

also have venous stasis and extreme lymph edema.

>

> These issues are all part of the things that the symptoms of this

disease causes. If I had not been on prednisone and Imuran (I had to

stop the imuran 30days before my total knee surgeries) I probably

would not been so immunocompromised which led me to become infected

with MRSA for 2 1/2 years.

>

> It's all inter related. This is not the life that any of us planned

to have. I would give anything to be able to get up and clean my

house. But my impairments make that an impossibility. I can't afford

to pay someone to do the cleaning, so once again we are put in the

settle for situation. Just another loss to our self esteem.

>

> Judy in PA

>

[Guest guest]

Thanks Judy, and well said, I guess i just get a little hot under the

collar when I hear how bad everything is all the time. Over the last

15 years Ive had just about everything I ever worked for or wanted

taken away from me, lost nearly everyone I every knew except my wife

and three kids, watched as all but one of my good friends have walked

away because they cant handle watching what this damned disease has

done to me, gone from being fairly well off to damned near poor, have

just about lost the ability to walk, lift, think, speak intelligently,

go places without a huge effort, spend time with my kids, dont really

expect to be able to watch my grandkids grow up and get married like

ive always dreamed of, most of the plans we make for the future are

what Liz will do when I am gone, and if you ask me, this is a pretty

good world that God has given us, I thank him every day for what I DO

have, granted sometimes I do so through tears of pain, I appreciate

what insurance DOES pay for because the time may come when they wont

for anything, I look for the HAPPY because my life has seen plenty of

the sad, and I just cant stomach listening, or reading how BAD

everything is. So, if I broke the rules yesterday, I am sorry, and

wont do it again, if I angered anyone, I appologize, but if I made

even one of you stop and think that you have alot to be thankful for

and should be happy even though sometimes things seem overwhelming

then what I said doesnt seem all that terrible.

Life is a gift and if we dont stop once in awhile to appreciate the

wrappings we are missing the best of what God has given us, and that

is truly a shame.

Stu

>

> Maybe I am missing the boat, what I perceive is not debating

political issues but a member who has been financially destroyed by

this horrible disease. It's really rotten that one must consider

refinancing their home in order to do what is necessary to survive.

>

> I myself have either sarc in my bone marrow or anemia of chronic

disease. My weekly injections cost about $$3800.00. My Medicare

copays for the time I was in the hospital were more than we received

in our social security checks. If I had not been given the

supplemental insurance as a benefit with my disability determination

by the state, we would have lost everything we had.

>

> I am now in the process of going to see Dr. Baughman. We are without

the finances to go their by an airline flight, bus or any other type

of transportation. My friend told us about the angel flights, we are

requesting there assistance, the first company said that our wonderful

prednisone weight exceeded their weight limits for the Cessna 150 that

most of the pilots use. I also had to be able to be able y\to use 18

inch steps. Now that is a joke because if you remember 12 inch steps

is how I ripped all the skin off my lower legs.

>

> The point of all this is that in addition to neurosarcoidosis, I

also have venous stasis and extreme lymph edema.

>

> These issues are all part of the things that the symptoms of this

disease causes. If I had not been on prednisone and Imuran (I had to

stop the imuran 30days before my total knee surgeries) I probably

would not been so immunocompromised which led me to become infected

with MRSA for 2 1/2 years.

>

> It's all inter related. This is not the life that any of us planned

to have. I would give anything to be able to get up and clean my

house. But my impairments make that an impossibility. I can't afford

to pay someone to do the cleaning, so once again we are put in the

settle for situation. Just another loss to our self esteem.

>

> Judy in PA

>

[Guest guest]

Darlene

I do understand, and you are right to be careful ive seen plenty of

sites undermined by things that came out of the blue. I certianly

didnt mena to start somethnig that would cause problems, it just that

well, nobody ever said that i had the sense to keep my damned mouth

shut when I should. i did a short stint in politics a few years back,

that didnt go so well either, somthing to do with telling people the

truth instead of what they wanted to hear, did ya know that dont go so

well????? Heh, no sure I would have done it any different, after all

I have to look at this ugly mug in the morning, but I might have

decided not to mess with those political folks who have the most

amazing way of saying go to hell with a grin and a slap on the back.

Anyway I couldnt do it for long, no meant yes yes meant only for a

buck, if I said yes I meant yes and theyd all stare openmouthed at me

like Id was outa my mind or speakin Martian or sumthin, and heck we

were still talkin about where to have dinner before the meetings!

Anyway, I digress, sorry I shot my mouth off, negativity drives me

nutzzzzz! I never could stand it, my poor kids have been getting the

speeches for years, theyre so sick of hearing it they cut me off at

the pass if were watching the news of someone says something thats

going to get me reved up its yead Dad we know, or never let em get ya

down DAd we know......... but you know, they dont, and thats what counts!

> >

> > Maybe I am missing the boat, what I perceive is not debating

> political issues but a member who has been financially destroyed by

> this horrible disease. It's really rotten that one must consider

> refinancing their home in order to do what is necessary to survive.

> >

> > I myself have either sarc in my bone marrow or anemia of chronic

> disease. My weekly injections cost about $$3800.00. My Medicare

> copays for the time I was in the hospital were more than we received

> in our social security checks. If I had not been given the

> supplemental insurance as a benefit with my disability determination

> by the state, we would have lost everything we had.

> >

> > I am now in the process of going to see Dr. Baughman. We are without

> the finances to go their by an airline flight, bus or any other type

> of transportation. My friend told us about the angel flights, we are

> requesting there assistance, the first company said that our wonderful

> prednisone weight exceeded their weight limits for the Cessna 150 that

> most of the pilots use. I also had to be able to be able y\to use 18

> inch steps. Now that is a joke because if you remember 12 inch steps

> is how I ripped all the skin off my lower legs.

> >

> > The point of all this is that in addition to neurosarcoidosis, I

> also have venous stasis and extreme lymph edema.

> >

> > These issues are all part of the things that the symptoms of this

> disease causes. If I had not been on prednisone and Imuran (I had to

> stop the imuran 30days before my total knee surgeries) I probably

> would not been so immunocompromised which led me to become infected

> with MRSA for 2 1/2 years.

> >

> > It's all inter related. This is not the life that any of us planned

> to have. I would give anything to be able to get up and clean my

> house. But my impairments make that an impossibility. I can't afford

> to pay someone to do the cleaning, so once again we are put in the

> settle for situation. Just another loss to our self esteem.

> >

> > Judy in PA

> >

>

[Guest guest]

Darlene

I do understand, and you are right to be careful ive seen plenty of

sites undermined by things that came out of the blue. I certianly

didnt mena to start somethnig that would cause problems, it just that

well, nobody ever said that i had the sense to keep my damned mouth

shut when I should. i did a short stint in politics a few years back,

that didnt go so well either, somthing to do with telling people the

truth instead of what they wanted to hear, did ya know that dont go so

well????? Heh, no sure I would have done it any different, after all

I have to look at this ugly mug in the morning, but I might have

decided not to mess with those political folks who have the most

amazing way of saying go to hell with a grin and a slap on the back.

Anyway I couldnt do it for long, no meant yes yes meant only for a

buck, if I said yes I meant yes and theyd all stare openmouthed at me

like Id was outa my mind or speakin Martian or sumthin, and heck we

were still talkin about where to have dinner before the meetings!

Anyway, I digress, sorry I shot my mouth off, negativity drives me

nutzzzzz! I never could stand it, my poor kids have been getting the

speeches for years, theyre so sick of hearing it they cut me off at

the pass if were watching the news of someone says something thats

going to get me reved up its yead Dad we know, or never let em get ya

down DAd we know......... but you know, they dont, and thats what counts!

> >

> > Maybe I am missing the boat, what I perceive is not debating

> political issues but a member who has been financially destroyed by

> this horrible disease. It's really rotten that one must consider

> refinancing their home in order to do what is necessary to survive.

> >

> > I myself have either sarc in my bone marrow or anemia of chronic

> disease. My weekly injections cost about $$3800.00. My Medicare

> copays for the time I was in the hospital were more than we received

> in our social security checks. If I had not been given the

> supplemental insurance as a benefit with my disability determination

> by the state, we would have lost everything we had.

> >

> > I am now in the process of going to see Dr. Baughman. We are without

> the finances to go their by an airline flight, bus or any other type

> of transportation. My friend told us about the angel flights, we are

> requesting there assistance, the first company said that our wonderful

> prednisone weight exceeded their weight limits for the Cessna 150 that

> most of the pilots use. I also had to be able to be able y\to use 18

> inch steps. Now that is a joke because if you remember 12 inch steps

> is how I ripped all the skin off my lower legs.

> >

> > The point of all this is that in addition to neurosarcoidosis, I

> also have venous stasis and extreme lymph edema.

> >

> > These issues are all part of the things that the symptoms of this

> disease causes. If I had not been on prednisone and Imuran (I had to

> stop the imuran 30days before my total knee surgeries) I probably

> would not been so immunocompromised which led me to become infected

> with MRSA for 2 1/2 years.

> >

> > It's all inter related. This is not the life that any of us planned

> to have. I would give anything to be able to get up and clean my

> house. But my impairments make that an impossibility. I can't afford

> to pay someone to do the cleaning, so once again we are put in the

> settle for situation. Just another loss to our self esteem.

> >

> > Judy in PA

> >

>