Re: No postings in a long time

September 1, 2007

Barb,

You need to print out your email and take it to the MD's with you. It is as concise as you can get-- and maybe if the idiots read it- they will see how much they are blowing you off.

The MD's you are seeing are 'old school' and believe sarc is a benign disease, and all the stuff it causes is mentally induced. We know it's not-- and if we weren't willing to find ways to take what quality of life we have and do what we need to do to make each day better- we wouldn't be here.

The neuropathy that you are dealing with may be caused more by high blood sugar than by the sarc. I find that if my sugars are even HIGH NORMAL I'm in pain. I also know that because of the damage to my lungs from the sarc-- I do get the asthma, the pulmonary fibrosis (scarring) causes me to be in a constant vigil to keep from going into the hyperventilation-- due to the "air trapping" that happens when we can't get the air we breath in across the lung tissue to be picked up by the red blood cells and carried to our extremities. So-- exhale fully-- very fully, and really picture yourself emptying your lungs and taking in good clean air.

You may request a PFT test (pulmonary function test) from your pulmonologist and see if you need supplemental oxygen. The Diffusion level (DLCO) is what will tell them that level.

If you've tried the suggestions on better hydration, watching your blood sugars and deep breathing exercises-- and you are still in pain and trouble-- let the MD's know that you've gone thru these exercises, and you are still sick.

Please- find MD's that can help you. Know also that you do have so much to add to the group- this isn't about what you can give to others-- it's about what we are all going thru, and how we can lift each other up.

Compassionately,

Tracie

NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

September 1, 2007

Barb,

You need to print out your email and take it to the MD's with you. It is as concise as you can get-- and maybe if the idiots read it- they will see how much they are blowing you off.

The MD's you are seeing are 'old school' and believe sarc is a benign disease, and all the stuff it causes is mentally induced. We know it's not-- and if we weren't willing to find ways to take what quality of life we have and do what we need to do to make each day better- we wouldn't be here.

The neuropathy that you are dealing with may be caused more by high blood sugar than by the sarc. I find that if my sugars are even HIGH NORMAL I'm in pain. I also know that because of the damage to my lungs from the sarc-- I do get the asthma, the pulmonary fibrosis (scarring) causes me to be in a constant vigil to keep from going into the hyperventilation-- due to the "air trapping" that happens when we can't get the air we breath in across the lung tissue to be picked up by the red blood cells and carried to our extremities. So-- exhale fully-- very fully, and really picture yourself emptying your lungs and taking in good clean air.

You may request a PFT test (pulmonary function test) from your pulmonologist and see if you need supplemental oxygen. The Diffusion level (DLCO) is what will tell them that level.

If you've tried the suggestions on better hydration, watching your blood sugars and deep breathing exercises-- and you are still in pain and trouble-- let the MD's know that you've gone thru these exercises, and you are still sick.

Please- find MD's that can help you. Know also that you do have so much to add to the group- this isn't about what you can give to others-- it's about what we are all going thru, and how we can lift each other up.

Compassionately,

Tracie

NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

September 5, 2007

Thanks . One of my problems is that my memory is so bad, It took me all day to write the email. When I am in the doctor's office I cannot remember what I am trying to talk about. My husband tries to explain things to them but he didn't get far on this round either. I cannot remember what it is called but I blew into the little tube and it was 400. T do remember that is pretty good. These are not typically bad doctors but I know something is wrong.

Tonight, I have to use a magnifying glass to read this email. So how am I to believe that there is nothing wrong with my vision. I don't even need a new prescription!

well, anyway. What more can be said.

thanks again,

Barb

Re: No postings in a long time

Barb,

You need to print out your email and take it to the MD's with you. It is as concise as you can get-- and maybe if the idiots read it- they will see how much they are blowing you off.

The MD's you are seeing are 'old school' and believe sarc is a benign disease, and all the stuff it causes is mentally induced. We know it's not-- and if we weren't willing to find ways to take what quality of life we have and do what we need to do to make each day better- we wouldn't be here.

The neuropathy that you are dealing with may be caused more by high blood sugar than by the sarc. I find that if my sugars are even HIGH NORMAL I'm in pain. I also know that because of the damage to my lungs from the sarc-- I do get the asthma, the pulmonary fibrosis (scarring) causes me to be in a constant vigil to keep from going into the hyperventilation- - due to the "air trapping" that happens when we can't get the air we breath in across the lung tissue to be picked up by the red blood cells and carried to our extremities. So-- exhale fully-- very fully, and really picture yourself emptying your lungs and taking in good clean air.

You may request a PFT test (pulmonary function test) from your pulmonologist and see if you need supplemental oxygen. The Diffusion level (DLCO) is what will tell them that level.

If you've tried the suggestions on better hydration, watching your blood sugars and deep breathing exercises-- and you are still in pain and trouble-- let the MD's know that you've gone thru these exercises, and you are still sick.

Please- find MD's that can help you. Know also that you do have so much to add to the group- this isn't about what you can give to others-- it's about what we are all going thru, and how we can lift each other up.

Compassionately,

Tracie

NS Co-owner/moderator

Get a sneak peek of the all-new AOL.com.

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

September 5, 2007

Thanks . One of my problems is that my memory is so bad, It took me all day to write the email. When I am in the doctor's office I cannot remember what I am trying to talk about. My husband tries to explain things to them but he didn't get far on this round either. I cannot remember what it is called but I blew into the little tube and it was 400. T do remember that is pretty good. These are not typically bad doctors but I know something is wrong.

Tonight, I have to use a magnifying glass to read this email. So how am I to believe that there is nothing wrong with my vision. I don't even need a new prescription!

well, anyway. What more can be said.

thanks again,

Barb

Re: No postings in a long time

Barb,

You need to print out your email and take it to the MD's with you. It is as concise as you can get-- and maybe if the idiots read it- they will see how much they are blowing you off.

The MD's you are seeing are 'old school' and believe sarc is a benign disease, and all the stuff it causes is mentally induced. We know it's not-- and if we weren't willing to find ways to take what quality of life we have and do what we need to do to make each day better- we wouldn't be here.

The neuropathy that you are dealing with may be caused more by high blood sugar than by the sarc. I find that if my sugars are even HIGH NORMAL I'm in pain. I also know that because of the damage to my lungs from the sarc-- I do get the asthma, the pulmonary fibrosis (scarring) causes me to be in a constant vigil to keep from going into the hyperventilation- - due to the "air trapping" that happens when we can't get the air we breath in across the lung tissue to be picked up by the red blood cells and carried to our extremities. So-- exhale fully-- very fully, and really picture yourself emptying your lungs and taking in good clean air.

You may request a PFT test (pulmonary function test) from your pulmonologist and see if you need supplemental oxygen. The Diffusion level (DLCO) is what will tell them that level.

If you've tried the suggestions on better hydration, watching your blood sugars and deep breathing exercises-- and you are still in pain and trouble-- let the MD's know that you've gone thru these exercises, and you are still sick.

Please- find MD's that can help you. Know also that you do have so much to add to the group- this isn't about what you can give to others-- it's about what we are all going thru, and how we can lift each other up.

Compassionately,

Tracie

NS Co-owner/moderator

Get a sneak peek of the all-new AOL.com.

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

September 5, 2007

Hey Barb:

Dont let those docs fluster you, try writing down whats bothering you

for a week before your appointment, as it happens then take it with

you, and dont let that doc out of the office until he has heard every

little thing! He may not want to listen but YOU are paying the bill,

he works for YOU, so YOU make the rules and if he doesnt listen then,

its time to fire the bum and find a doc who cares and will listen!!!

Remember its your body, your the boss remind him of this tiny little

fact that doctors love to ignore!!!!!

Best of luck,God Bless, youll be in our prayers.

Stu and Lizzy

>

> Thanks . One of my problems is that my memory is so bad, It

took me all day to write the email. When I am in the doctor's office I

cannot remember what I am trying to talk about. My husband tries to

explain things to them but he didn't get far on this round either. I

cannot remember what it is called but I blew into the little tube and

it was 400. T do remember that is pretty good. These are not typically

bad doctors but I know something is wrong.

> Tonight, I have to use a magnifying glass to read this email. So how

am I to believe that there is nothing wrong with my vision. I don't

even need a new prescription!

> well, anyway. What more can be said.

> thanks again,

> Barb

>

> Re: No postings in a long time

>

> Barb,

> You need to print out your email and take it to the MD's with you.

It is as concise as you can get-- and maybe if the idiots read it-

they will see how much they are blowing you off.

> The MD's you are seeing are 'old school' and believe sarc is a

benign disease, and all the stuff it causes is mentally induced. We

know it's not-- and if we weren't willing to find ways to take what

quality of life we have and do what we need to do to make each day

better- we wouldn't be here.

> The neuropathy that you are dealing with may be caused more by high

blood sugar than by the sarc. I find that if my sugars are even HIGH

NORMAL I'm in pain. I also know that because of the damage to my

lungs from the sarc-- I do get the asthma, the pulmonary fibrosis

(scarring) causes me to be in a constant vigil to keep from going into

the hyperventilation- - due to the " air trapping " that happens when we

can't get the air we breath in across the lung tissue to be picked up

by the red blood cells and carried to our extremities. So-- exhale

fully-- very fully, and really picture yourself emptying your lungs

and taking in good clean air.

> You may request a PFT test (pulmonary function test) from your

pulmonologist and see if you need supplemental oxygen. The Diffusion

level (DLCO) is what will tell them that level.

> If you've tried the suggestions on better hydration, watching your

blood sugars and deep breathing exercises-- and you are still in pain

and trouble-- let the MD's know that you've gone thru these exercises,

and you are still sick.

> Please- find MD's that can help you. Know also that you do have so

much to add to the group- this isn't about what you can give to

others-- it's about what we are all going thru, and how we can lift

each other up.

>

> Compassionately,

> Tracie

> NS Co-owner/moderator

>

> Get a sneak peek of the all-new AOL.com.

>

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> Building a website is a piece of cake. Yahoo! Small Business gives

you all the tools to get online.

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September 5, 2007