RE:REPLY TO OTHERS....

[Guest guest]

HELLO EVERYONE,,,

I WOULD LIKE TO CLARIFY A FEW THINGS BECAUSE APPERANTLY SOME OF YOU

ARENT GETTING THE JIST OF WHAT I AM SAYING... IN FACT, THE PEOPLE

THAT ARE GOING OFF THE HANDLE ISNT EVEN THE PEOPLE THAT THIS POST

WAS TOWARDS. BUT, SINCE YOU HAVE ANSWERED IT I WILL LET YOU ALL KNOW

THAT, I " DID NOT " SAY STOP LOOKING FOR A CURE OR LOSE HOPE

IN " ANYTHING " !! IN FACT, I DEVOTE EVERY MINUTE OF EVERYDAY TO DOING

RESEARCH ON THE INTERNET AND THE LIBRARY <WHEN> I CAN GET THERE! AND

I HAVE FREINDS THAT WORK FOR HUGE COMPANIES THAT SPECIFICALLY

DO " RESEARCH " FOR A LIVING... SO, THATS NOT WHAT I MEANT! I MEANT

THAT, TO PLEASE DONT KEEP HACKING UP YER BODIES AND DOING RETARDED

TESTS AND PROCEDURES THAT COST THOUSANDS OF DOLLARS THAT TELL THESE

DR'S NO MORE THAN THEY ALREADY KNEW AND MAKE YOU FEEL WORSE THAN

BEFORE. I KEEP SEEING PEOPLE POST DAY AFTER DAY THAT THEY HAD THIS

TEST AND THAT TEST AND THIS PROCEDURE AND THAT PROCEDURE AND ALL

THESE CRAZY MEDS ONE DAY AND HOW EXPENSIVE IT WAS AND THAT THEY ARE

SOOO DEPRESSED BECUASE THEY THOUGHT IT WOULD MAKE IT GO AWAY AND NOW

ITS STILL HERE AND CRYING AND ALL UPSET. THEY DONT REALISE IT MAKES

THE RSD WORSE! BEING ALL UPSET AND POKING YER BODY WITH NEEDLES AND

SUCH.... OR CAN EVEN MAKE IT SPREAD ON SOME CIRCUMSTANCES.

I WILL TELL YOU FOR SURE THAT I " DO NOT " SPEAK TO A SHRINK NOR NEED

ONE.. I AM JUST SPEAKING MY OPINION AND THOUGHTS ON THIS MATTER. AND

LIKE I SAID IF YOU DO NOT LIKE WHAT I HAVE TO SAY DELETE IT OR KEEP

ON GOING PAST MY POST.. I HAVE NO NEED TO BE CALLED NAMES AND

SCRUTINISED (SP?) FOR TRYING TO CARE FOR SOMEONE AND THERE HEALTH. I

DO! HAVE HOPE AND I SEARCH DAY IN/OUT FOR WAYS TO HELP ALL OF US IN

ANYWAY I CAN.. I HAVE EVEN SENT THE MESSAGES THRU FROM OTHER SITES

THAT MAY HELP PEOPLE BUT THEY WERE NOT PUT THRU TO HERE.... AND TO

CLIFF, IM SORRY YOU HAVE CANCER. I WILL TELL YOU ALL THIS THO, EVERY

NITE B4 I GO TO SLEEP I SAY A PRAYER FOR EVERYONE IN HERE AND

EVERYONE I KNOW THAT IS SUFFERING WITH THIS HORRIBLE DISEASE. BUT, I

DID IN NO WAY EXPECT TO BE CALLED A COO-COO IN ANYWAY. APPERANTLY

YOU DID NOT READ OR UNDERSTAND WHAT I HAD WRITTEN OR YOU WOULDVE NOT

REPLIED IN THE WAY THAT YOU'S HAVE. I THINK THE ONLY PERSON THAT

UNDERSTANDS WHAT I AM SAYING IS PAM AND TANYA AND TONIA. I AM VERY

GLAD THAT WE ARE MAKING GREAT STRIDES IN GETTING A HOLD ON THIS RSD!

BUT, FACE IT!! WE ARE NEVER GUNNA BE HEARD OR PEOPLE LISTEN TO US

UNTIL SOMEONE FAMOUS GETS IT! AND THATS HOW IT ALWAYS IS... WELL,,

I HOPE THIS CLARIFIES THINGS FOR PEOPLE THAT DID NOT UNDERSTAND WHAT

I HAVE SAID. TAKE CARE AND HAVE A GREAT HOLIDAY, AMEY ((THE

RAMBLER)) P.S. ONE DAY THERE WILL BE A CURE AND WE WILL ALL

LOOK BACK ON ALL OF THESE POSTS AND LAUGH ONE DAY AND SAY " WHAT WE

WERE ALL THINKING BACK THEN " COULDNT WE ALL JUST GET ALONG??

WELL BEHAVED WOMEN RARELY MAKE HISTORY.. (GREATEST LINE I EVER

HEARD!)

[Guest guest]

>

> HELLO EVERYONE,,,

> I WOULD LIKE TO CLARIFY A FEW THINGS BECAUSE APPERANTLY SOME OF

YOU

> ARENT GETTING THE JIST OF WHAT I AM SAYING...

Hey, Amey...

We all do want to get along. Those of us in the group (as well as

you) have been through an awful lot of pain, misery, confusion,

frustration, anger and more pain while on our respective RSD

journeys. When you wrote your initial post, it flew in the face of

the sensitivities of many of us, as if to say that our efforts to

get relief were all in vain. While it is true that this disease

mystifies many doctors, I for one am willing to undergo any test or

treatment that will give some insight as to the mechanisms of this

disease and some roads to a possible cure, if not for me, then for

others who suffer.

As far as whether or not you'd benefit from psychological treatment,

that's certainly for you to decide. I do know that many of us will

suffer from depression as a natural course of this disease and might

benefit from counseling or at least anti-depressants. The tone of

your initial post gave the appearance of someone writing with a HUGE

amount of anger and frustration. The sheer negativity of what you

had to say prompted me to write the line; " Tell it to your

therapist " . In retrospect, I could see where you'd see that as a

personal attack. In a way it was, but not because I have anything

against you, it is because I've come to love, admire and respect the

people of this group very much and as such will protect them as I

see fit, now and in the future.

Amey, you belong here, we may not find a cure for RSD together, but

perhaps we can give each other the love and nurturing it will take

for us to overcome the tremendous emotional burdens that RSD places

upon each of us.

Peace, love and pain relief!!!

Cliff

[Guest guest]

Amey,

I need to reply back to you, because I believe you are misunderstanding what others have written. Yes in all illnesses people get needlessly tested. I have MS and RSD. Would you like me to tell you how many tests I have had over the past two years that I most likly did not need! Well the answer is many. This is how companies make money. It is all illnesses and it will happen until healthcare is completely changed in this country. It is not going to happen in our lifetime so we need to care about ourselves. I disagree with you and I believe what tests may have not worked for you, could work for myself or someone else!!! I do not know anyone that has had 8 to 10 blocks in a week! If someone did have that many, then they must have been giving them some type of relief or whatever the reason it was there decision to make not yours or mine. As far as a cure, you do not seem very optimistic at all, on the other hand I would like to think

that before my lifetime they may have a cure for both MS and RSD and maybe even all Cancers. You see with Rsd and MS you are not suppose to be negative and not have a lot of stress. I like to laugh, smile, have fun and try not to think and dwell on how sick and miserable I really am. Amey we are all going to go through things that we do not need, but as far as I am concerned that is up to us as individuals and I will make my own decisions on my medical care and I will ask for advice from those that I feel can help me!!! I know that I am not the only one here that likes there doctors and feels that they are doing a good job in helping them. If you feel that you are not being treated right than you should speak up for yourself or find another doctor!! I travel over an hour for all my doctors and I love them all, so I guess I have to continue to trave, that is my decision! Amey I hope that I made my point and you do understand where I am coming from. Amey I also totally

disagree with you about Neurontin. I know many people that take it and I do not mean just for RSD. I have a friend that would not be able to survive with her pain if it was not for Neurontin. She has a bladder disorder that gives her a 10 on the pain scale every day! Also many on here still take it and it helps them a lot. Why do you say it does not help, know one ever said that it does not help!!!! Well I wrote enough. Take Care and Best Wishes!

LOL!

Dawnamey73 wrote:

HELLO EVERYONE,,,I WOULD LIKE TO CLARIFY A FEW THINGS BECAUSE APPERANTLY SOME OF YOU ARENT GETTING THE JIST OF WHAT I AM SAYING... IN FACT, THE PEOPLE THAT ARE GOING OFF THE HANDLE ISNT EVEN THE PEOPLE THAT THIS POST WAS TOWARDS. BUT, SINCE YOU HAVE ANSWERED IT I WILL LET YOU ALL KNOW THAT, I "DID NOT" SAY STOP LOOKING FOR A CURE OR LOSE HOPE IN "ANYTHING"!! IN FACT, I DEVOTE EVERY MINUTE OF EVERYDAY TO DOING RESEARCH ON THE INTERNET AND THE LIBRARY <WHEN> I CAN GET THERE! AND I HAVE FREINDS THAT WORK FOR HUGE COMPANIES THAT SPECIFICALLY DO "RESEARCH" FOR A LIVING... SO, THATS NOT WHAT I MEANT! I MEANT THAT, TO PLEASE DONT KEEP HACKING UP YER BODIES AND DOING RETARDED TESTS AND PROCEDURES THAT COST THOUSANDS OF DOLLARS THAT TELL THESE DR'S NO MORE THAN THEY ALREADY KNEW AND MAKE YOU FEEL WORSE THAN BEFORE. I

KEEP SEEING PEOPLE POST DAY AFTER DAY THAT THEY HAD THIS TEST AND THAT TEST AND THIS PROCEDURE AND THAT PROCEDURE AND ALL THESE CRAZY MEDS ONE DAY AND HOW EXPENSIVE IT WAS AND THAT THEY ARE SOOO DEPRESSED BECUASE THEY THOUGHT IT WOULD MAKE IT GO AWAY AND NOW ITS STILL HERE AND CRYING AND ALL UPSET. THEY DONT REALISE IT MAKES THE RSD WORSE! BEING ALL UPSET AND POKING YER BODY WITH NEEDLES AND SUCH.... OR CAN EVEN MAKE IT SPREAD ON SOME CIRCUMSTANCES. I WILL TELL YOU FOR SURE THAT I "DO NOT" SPEAK TO A SHRINK NOR NEED ONE.. I AM JUST SPEAKING MY OPINION AND THOUGHTS ON THIS MATTER. AND LIKE I SAID IF YOU DO NOT LIKE WHAT I HAVE TO SAY DELETE IT OR KEEP ON GOING PAST MY POST.. I HAVE NO NEED TO BE CALLED NAMES AND SCRUTINISED (SP?) FOR TRYING TO CARE FOR SOMEONE AND THERE HEALTH. I DO! HAVE HOPE AND I SEARCH DAY IN/OUT FOR WAYS TO HELP ALL OF US IN ANYWAY I CAN.. I HAVE EVEN SENT THE MESSAGES THRU FROM OTHER SITES

THAT MAY HELP PEOPLE BUT THEY WERE NOT PUT THRU TO HERE.... AND TO CLIFF, IM SORRY YOU HAVE CANCER. I WILL TELL YOU ALL THIS THO, EVERY NITE B4 I GO TO SLEEP I SAY A PRAYER FOR EVERYONE IN HERE AND EVERYONE I KNOW THAT IS SUFFERING WITH THIS HORRIBLE DISEASE. BUT, I DID IN NO WAY EXPECT TO BE CALLED A COO-COO IN ANYWAY. APPERANTLY YOU DID NOT READ OR UNDERSTAND WHAT I HAD WRITTEN OR YOU WOULDVE NOT REPLIED IN THE WAY THAT YOU'S HAVE. I THINK THE ONLY PERSON THAT UNDERSTANDS WHAT I AM SAYING IS PAM AND TANYA AND TONIA. I AM VERY GLAD THAT WE ARE MAKING GREAT STRIDES IN GETTING A HOLD ON THIS RSD! BUT, FACE IT!! WE ARE NEVER GUNNA BE HEARD OR PEOPLE LISTEN TO US UNTIL SOMEONE FAMOUS GETS IT! AND THATS HOW IT ALWAYS IS... WELL,, I HOPE THIS CLARIFIES THINGS FOR PEOPLE THAT DID NOT UNDERSTAND WHAT I HAVE SAID. TAKE CARE AND HAVE A GREAT HOLIDAY, AMEY ((THE RAMBLER)) P.S. ONE DAY THERE

WILL BE A CURE AND WE WILL ALL LOOK BACK ON ALL OF THESE POSTS AND LAUGH ONE DAY AND SAY "WHAT WE WERE ALL THINKING BACK THEN" COULDNT WE ALL JUST GET ALONG?? WELL BEHAVED WOMEN RARELY MAKE HISTORY.. (GREATEST LINE I EVER HEARD!)

[Guest guest]

Amey - I didn't see that anyone wrote that you were "coo-coo" or called you names. Perhaps, in your kind-hearted effort and concern for others and all that they are going through, you didn't realize that your post came off a bit strong and somewhat negative. It's often difficult to know how what we write will be 'heard' bye others. I know that you sincerely meant well and agree that there are times when tests and procedures are excessive. I would just feel badly if folks stayed away from what might very well help them just because it didn't help someone else. Let's all try to remember that each of us are doing what we can to help ourselves and keep this a supportive place. My best - Barbara (also Cathy has cancer....I don't think that Cliff has it)amey73 wrote:

HELLO EVERYONE,,,I WOULD LIKE TO CLARIFY A FEW THINGS BECAUSE APPERANTLY SOME OF YOU ARENT GETTING THE JIST OF WHAT I AM SAYING... IN FACT, THE PEOPLE THAT ARE GOING OFF THE HANDLE ISNT EVEN THE PEOPLE THAT THIS POST WAS TOWARDS. BUT, SINCE YOU HAVE ANSWERED IT I WILL LET YOU ALL KNOW THAT, I "DID NOT" SAY STOP LOOKING FOR A CURE OR LOSE HOPE IN "ANYTHING"!! IN FACT, I DEVOTE EVERY MINUTE OF EVERYDAY TO DOING RESEARCH ON THE INTERNET AND THE LIBRARY I CAN GET THERE! AND I HAVE FREINDS THAT WORK FOR HUGE COMPANIES THAT SPECIFICALLY DO "RESEARCH" FOR A LIVING... SO, THATS NOT WHAT I MEANT! I MEANT THAT, TO PLEASE DONT KEEP HACKING UP YER BODIES AND DOING RETARDED TESTS AND PROCEDURES THAT COST THOUSANDS OF DOLLARS THAT TELL THESE DR'S NO MORE THAN THEY ALREADY KNEW AND MAKE YOU FEEL WORSE THAN BEFORE. I KEEP SEEING PEOPLE

POST DAY AFTER DAY THAT THEY HAD THIS TEST AND THAT TEST AND THIS PROCEDURE AND THAT PROCEDURE AND ALL THESE CRAZY MEDS ONE DAY AND HOW EXPENSIVE IT WAS AND THAT THEY ARE SOOO DEPRESSED BECUASE THEY THOUGHT IT WOULD MAKE IT GO AWAY AND NOW ITS STILL HERE AND CRYING AND ALL UPSET. THEY DONT REALISE IT MAKES THE RSD WORSE! BEING ALL UPSET AND POKING YER BODY WITH NEEDLES AND SUCH.... OR CAN EVEN MAKE IT SPREAD ON SOME CIRCUMSTANCES. I WILL TELL YOU FOR SURE THAT I "DO NOT" SPEAK TO A SHRINK NOR NEED ONE.. I AM JUST SPEAKING MY OPINION AND THOUGHTS ON THIS MATTER. AND LIKE I SAID IF YOU DO NOT LIKE WHAT I HAVE TO SAY DELETE IT OR KEEP ON GOING PAST MY POST.. I HAVE NO NEED TO BE CALLED NAMES AND SCRUTINISED (SP?) FOR TRYING TO CARE FOR SOMEONE AND THERE HEALTH. I DO! HAVE HOPE AND I SEARCH DAY IN/OUT FOR WAYS TO HELP ALL OF US IN ANYWAY I CAN.. I HAVE EVEN SENT THE MESSAGES THRU FROM OTHER SITES THAT MAY HELP PEOPLE BUT THEY WERE

NOT PUT THRU TO HERE.... AND TO CLIFF, IM SORRY YOU HAVE CANCER. I WILL TELL YOU ALL THIS THO, EVERY NITE B4 I GO TO SLEEP I SAY A PRAYER FOR EVERYONE IN HERE AND EVERYONE I KNOW THAT IS SUFFERING WITH THIS HORRIBLE DISEASE. BUT, I DID IN NO WAY EXPECT TO BE CALLED A COO-COO IN ANYWAY. APPERANTLY YOU DID NOT READ OR UNDERSTAND WHAT I HAD WRITTEN OR YOU WOULDVE NOT REPLIED IN THE WAY THAT YOU'S HAVE. I THINK THE ONLY PERSON THAT UNDERSTANDS WHAT I AM SAYING IS PAM AND TANYA AND TONIA. I AM VERY GLAD THAT WE ARE MAKING GREAT STRIDES IN GETTING A HOLD ON THIS RSD! BUT, FACE IT!! WE ARE NEVER GUNNA BE HEARD OR PEOPLE LISTEN TO US UNTIL SOMEONE FAMOUS GETS IT! AND THATS HOW IT ALWAYS IS... WELL,, I HOPE THIS CLARIFIES THINGS FOR PEOPLE THAT DID NOT UNDERSTAND WHAT I HAVE SAID. TAKE CARE AND HAVE A GREAT HOLIDAY, AMEY ((THE RAMBLER)) P.S. ONE DAY THERE WILL BE A CURE AND WE WILL ALL LOOK BACK ON ALL OF THESE POSTS AND LAUGH ONE DAY

AND SAY "WHAT WE WERE ALL THINKING BACK THEN" COULDNT WE ALL JUST GET ALONG?? WELL BEHAVED WOMEN RARELY MAKE HISTORY.. (GREATEST LINE I EVER HEARD!)

[Guest guest]

My best - Barbara (also Cathy has cancer....I don't think that

Cliff has it)

Hey all...

She's right, by the grace of God I don't have cancer...I have RSD, a

bad haircut and occasional halitosis brought on by binging on

Mexican food, but no cancer. My prayers and loving thoughts to

Cathy and others that do.

Peace, love and pain relief!!!

Cliff

[Guest guest]

Absolutely. BarbaraCliff Huber wrote:

My best - Barbara (also Cathy has cancer....I don't think that Cliff has it)Hey all...She's right, by the grace of God I don't have cancer...I have RSD, a bad haircut and occasional halitosis brought on by binging on Mexican food, but no cancer. My prayers and loving thoughts to Cathy and others that do.Peace, love and pain relief!!!Cliff