Re: now for somthing serious, Ill try to keep it clean (please consider)

[Guest guest]

Dear Stu

You're right, This stuff may be offensive to some-but in the grand skeme it all

means very

little. After 5 years of living and suffering with this I feel like using a few

4 letter words

too. Some ttmesI feel like my life is one long painful 4 letter word. Sometimes

I think it

would be better if I died-At Least the suffering would stop.

Kathy

>

> Yep its true I can be serious, I just prefer to crack a joke when I

> can because serious isnt all that pleasant most of the time, as most

> of us know first hand. Im sorry for the part Ive played in bringing

> up this vote but in a way I think its a good thing because it brings

> up something that needs to be faced here and in our lives in general.

> We ALL suffer, whether we are the patient or we are the caregiver, or

> maybe we just are trying to learn about this terrible and

> misunderstood disease, if you think you are not suffering you are

> kidding yoursefl, and likely setting yoursefl up for one whale of a

> comeuppence.

>

> Ive told you my story before, and its not unlike the stories of most

> of the longtimers in here, years and years of suffering, most of them

> with few or no answers then the long dreaded letters CNS, and again

> few answere, lots and lots of drugs then fewer answers.

>

> So what am I getting at? Simple, and I hope those of you who are

> feeling at odds with parts of the group over little, and in the big

> picture, unimportant things, are paying attention because it is to you

> that i am addressing this, it is OUR SUFFERING, OUOR QUEST FOR

> ANSWERS, OUR CONTINUING HUNT FOR THE RIGHT DRUGS, OOUR ONGOING BATTLE

> FOR THE RIGHT DOCTORS, MEDS, TREATMENTS, DIAGNOSIS, SEFLCARE,

> FINANCIAL, EMOTIONAL, HEALTH AND EVERY OTHER KIND OF CARE, OUR

> COMBINED NEED FOR LOCATING THE ONE CAUSE OF THIS SCOURGE THAT HAS

> RUINED EACH AND EVERY ONE OF OUR LIVES THAT HAS FORCED US, SOME

> WILLING, SOME KICKING AND SCREAMING, SOME JUST BLUNDERING INTO IT BUT

> IN THE END ALL TOGETHER INTO A BROTHERHOOD WHETHER WE LIKE IT OR NOT A

> BROTHERHOOD IN SARCOIDOSIS TO FIGHT, FIGHT AGAINST THE STUPIDITY OF

> THE MEDICAL COMUNITY, TO FIGHT FOR THE CARE WE DESERVE AND DEMAND FOR

> OURSELVES AND OUR BRETHERN, TO FIGHT FOR THE CONCERN THE WE HAVE

> EARNED JUST BY THE RIGHT OF BEING HUMANS, TO FIGHT BECAUSE NONE OF US

> DESERVE TO SUFFER LIKE THIS NO MATTER WHAT WE DONT DESERVE THIS! WE

> DID NOTHING! THIS HAPPENED TO US WE DID NOT HAPPEN TO IT!

>

> So in the end, does it really matter if I tend to say Damn and you

> dont? Or does it matter that I love and care enough about you just by

> virtue of our brotherhood that I would spend days or weeks or whatever

> it takes to find out what I could to help you if you were sick, and

> believe with all my heart that you would do the same because we have a

> special bond?

>

> In the end, does it really matter that I tend to end many of my posats

> with God bless you, of Allah be with you, of may the Great Clam not

> nip you in the fanny, of may Bob be nice to you, or does it matter

> more that I care enough that I want nothing but the best for you and I

> care enough that I pray for you, if you dont believe have I harmed

> you? Or instead have I simply in yor view sent you good wishes and

> extended the goodwill and love of a brotherhood that is TOO DAMNED

> IMPORTANT AND VITAL TO THE LIVES OF EVERY ONE OF US TO RISK OVER THIS

> RIDICULES ARGUMENT WHEN IT AFFECTS THE LIVES OF (OUR) PEOPLE, PEOPLE

> WHO ARE ALREADY SUFFERING TERRIBLE EVERY DAY, WE KNOW THIS FROM OOUR

> OWN SUFFERING, SO MUCH SO THAT THEY ARE CRYING OVER AN ARGUMENT THAT

> IS NOTHING IF NOT A WASTE OF TIME AND ENERGY BY PEOPLE WHO HAVE LITTLE

> ENERGY TO WASTE.

>

> So my friends, I ask you this one question, are you willing to risk

> something so vital, so essential to the daily survival of your own

> brethern, people who depend upon YOU over something so small? Because

> it is you know, small and terribly unimportant in the larger picture,

> take a moment to picture it in your mind before you take umbrage, a

> cuss word, even the worst you can think of, the very act of which

> proves youve heard them all before, against someones needs, someone

> you know, someone you have listened to, someone you know is suffering

> physically and mentally everyday, how do they compare????????????

> A prayer, can you really say youve never been exposed to them? I

> thought not, compare this horror,,,,,,,,,to the suffering you know is

> going on on the other end of the computer screed you staring

> into,theres the real horror, can you really turn your back on that?

>

> ITS ALL ABOUT COMPASSION FOLKS, I KNOW YOUR ALL GOOD PEOPLE, IVE SEEN

> IT, DONT LET THE LITTLE STUFF STOP YOU FROM DOING WHAT WE ALL KNOW IS

> RIGHT FORGET ABOUT THIS GARBAGE AND LETS TAKE CARE OF EACH OTHER!

>

> AND THE HELL WITH WHETHER YOU LIKE IT OR NOT, GOD BLESS YOU ALL!

>

> STU

>

[Guest guest]

Dear Stu

You're right, This stuff may be offensive to some-but in the grand skeme it all

means very

little. After 5 years of living and suffering with this I feel like using a few

4 letter words

too. Some ttmesI feel like my life is one long painful 4 letter word. Sometimes

I think it

would be better if I died-At Least the suffering would stop.

Kathy

>

> Yep its true I can be serious, I just prefer to crack a joke when I

> can because serious isnt all that pleasant most of the time, as most

> of us know first hand. Im sorry for the part Ive played in bringing

> up this vote but in a way I think its a good thing because it brings

> up something that needs to be faced here and in our lives in general.

> We ALL suffer, whether we are the patient or we are the caregiver, or

> maybe we just are trying to learn about this terrible and

> misunderstood disease, if you think you are not suffering you are

> kidding yoursefl, and likely setting yoursefl up for one whale of a

> comeuppence.

>

> Ive told you my story before, and its not unlike the stories of most

> of the longtimers in here, years and years of suffering, most of them

> with few or no answers then the long dreaded letters CNS, and again

> few answere, lots and lots of drugs then fewer answers.

>

> So what am I getting at? Simple, and I hope those of you who are

> feeling at odds with parts of the group over little, and in the big

> picture, unimportant things, are paying attention because it is to you

> that i am addressing this, it is OUR SUFFERING, OUOR QUEST FOR

> ANSWERS, OUR CONTINUING HUNT FOR THE RIGHT DRUGS, OOUR ONGOING BATTLE

> FOR THE RIGHT DOCTORS, MEDS, TREATMENTS, DIAGNOSIS, SEFLCARE,

> FINANCIAL, EMOTIONAL, HEALTH AND EVERY OTHER KIND OF CARE, OUR

> COMBINED NEED FOR LOCATING THE ONE CAUSE OF THIS SCOURGE THAT HAS

> RUINED EACH AND EVERY ONE OF OUR LIVES THAT HAS FORCED US, SOME

> WILLING, SOME KICKING AND SCREAMING, SOME JUST BLUNDERING INTO IT BUT

> IN THE END ALL TOGETHER INTO A BROTHERHOOD WHETHER WE LIKE IT OR NOT A

> BROTHERHOOD IN SARCOIDOSIS TO FIGHT, FIGHT AGAINST THE STUPIDITY OF

> THE MEDICAL COMUNITY, TO FIGHT FOR THE CARE WE DESERVE AND DEMAND FOR

> OURSELVES AND OUR BRETHERN, TO FIGHT FOR THE CONCERN THE WE HAVE

> EARNED JUST BY THE RIGHT OF BEING HUMANS, TO FIGHT BECAUSE NONE OF US

> DESERVE TO SUFFER LIKE THIS NO MATTER WHAT WE DONT DESERVE THIS! WE

> DID NOTHING! THIS HAPPENED TO US WE DID NOT HAPPEN TO IT!

>

> So in the end, does it really matter if I tend to say Damn and you

> dont? Or does it matter that I love and care enough about you just by

> virtue of our brotherhood that I would spend days or weeks or whatever

> it takes to find out what I could to help you if you were sick, and

> believe with all my heart that you would do the same because we have a

> special bond?

>

> In the end, does it really matter that I tend to end many of my posats

> with God bless you, of Allah be with you, of may the Great Clam not

> nip you in the fanny, of may Bob be nice to you, or does it matter

> more that I care enough that I want nothing but the best for you and I

> care enough that I pray for you, if you dont believe have I harmed

> you? Or instead have I simply in yor view sent you good wishes and

> extended the goodwill and love of a brotherhood that is TOO DAMNED

> IMPORTANT AND VITAL TO THE LIVES OF EVERY ONE OF US TO RISK OVER THIS

> RIDICULES ARGUMENT WHEN IT AFFECTS THE LIVES OF (OUR) PEOPLE, PEOPLE

> WHO ARE ALREADY SUFFERING TERRIBLE EVERY DAY, WE KNOW THIS FROM OOUR

> OWN SUFFERING, SO MUCH SO THAT THEY ARE CRYING OVER AN ARGUMENT THAT

> IS NOTHING IF NOT A WASTE OF TIME AND ENERGY BY PEOPLE WHO HAVE LITTLE

> ENERGY TO WASTE.

>

> So my friends, I ask you this one question, are you willing to risk

> something so vital, so essential to the daily survival of your own

> brethern, people who depend upon YOU over something so small? Because

> it is you know, small and terribly unimportant in the larger picture,

> take a moment to picture it in your mind before you take umbrage, a

> cuss word, even the worst you can think of, the very act of which

> proves youve heard them all before, against someones needs, someone

> you know, someone you have listened to, someone you know is suffering

> physically and mentally everyday, how do they compare????????????

> A prayer, can you really say youve never been exposed to them? I

> thought not, compare this horror,,,,,,,,,to the suffering you know is

> going on on the other end of the computer screed you staring

> into,theres the real horror, can you really turn your back on that?

>

> ITS ALL ABOUT COMPASSION FOLKS, I KNOW YOUR ALL GOOD PEOPLE, IVE SEEN

> IT, DONT LET THE LITTLE STUFF STOP YOU FROM DOING WHAT WE ALL KNOW IS

> RIGHT FORGET ABOUT THIS GARBAGE AND LETS TAKE CARE OF EACH OTHER!

>

> AND THE HELL WITH WHETHER YOU LIKE IT OR NOT, GOD BLESS YOU ALL!

>

> STU

>