RE: taping appts

[Guest guest]

My husband and I taped all our doc appts from the beginning. It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.

To: neurosarcoidosis Sent: Sun, May 15, 2011 10:45:05 PMSubject: RE: Crud--cardiac sarc

Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc

Rose Prayers are here and going out for you.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more

research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the

kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

, I agree. I couldn't find any tape recorders at WalMart & was too tired to look at Radio Shack or anywhere else. I think I'll just use my camcorder. If the doc doesn't want to have his face recorded, I can just leave the lens cap on. Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:19:17 -0700Subject: Re: taping apptsMy husband and I taped all our doc appts from the beginning. It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.To: neurosarcoidosis Sent: Sun, May 15, 2011 10:45:05 PMSubject: RE: Crud--cardiac sarc Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Is it possible to get little digital voice recorders? Things like this?

http://search.dicksmith.com.au/electronics/Digital%20Voice%20Recorder

xo

> , I agree. I couldn't find any tape recorders at WalMart & was too

tired to look at Radio Shack or anywhere else. I think I'll just use my

camcorder. If the doc doesn't want to have his face recorded, I can just leave

the lens cap on.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

> To: Neurosarcoidosis

> From: precisesewing@...

> Date: Mon, 16 May 2011 07:19:17 -0700

> Subject: Re: taping appts

>

>

>

> My husband and I taped all our doc appts from the beginning. It was hard to

remember all the big words and then to make sure we understood what was going on

with me and my sight to go back and listen to it at home was good and then

listen to it more than once.

>

>

>

> To: neurosarcoidosis

> Sent: Sun, May 15, 2011 10:45:05 PM

> Subject: RE: Crud--cardiac sarc

>

>

> Thanks, . I've done some research, so that I can ask halfway intelligent

questions. I'd like to tape the visit; I know from past experience that even if

I take notes, I won't remember everything the doctor says (if I even hear it to

start with). However, I gave my tape recorder to my nephew, as I hadn't used it

for several years. I doubt it works now--he's 7, has Asperger's & loves to take

things apart. I might see if I can get something cheap at WalMart.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

> To: neurosarcoidosis

> From: wluce50@...

> Date: Mon, 16 May 2011 01:33:26 +0000

> Subject: RE: Crud--cardiac sarc

>

>

>

> Rose: sorry to hear about this latest complication; hope things work out.

> in Ontario, Canada

>

> To: Neurosarcoidosis

> From: shadowme810@...

> Date: Fri, 13 May 2011 22:45:19 -0500

> Subject: Re: Crud--cardiac sarc

>

> 

>

> Rose Prayers are here and going out for you.

> Jackie

>

> Today I broke my Personal Record;;;;;;;;

> I am STILL ALIVE............

> Crud--cardiac sarc

>

>

> Well, I got some results of my heart MRI this afternoon & it looks like I've

got cardiac sarc. I didn't get to talk to the doctor because he was in surgery

today. But the nurse said that I have heart involvement now , but that my heart

" didn't look too bad. " He wants to have a face-to-face meeting next week to go

over everything & discuss treatment options. He's also consulting my doc at the

Indiana Univ. sarc clinic for his input. I have a feeling that my back

surgery's going to the back burner for awhile. I know from research that up to

25% of sarc patients have some cardiac involvement, but that many have no

symptoms & it's just found on autopsy after death from another cause. I don't

think I'm one of those folks because I've had the arrhythmias & tachycardia for

so many years. I just hope there is a better treatment than Pred. Guess I'll

do a little more research. On the bright side, my PCP just gave me a new script

for Percocet, which helps the back & leg pain some. The first rx for 60 tabs

lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't

consider me a drug seeker (which I'm not). I'll have to find a really good

place to hide them, or Ginny will help herself. I considered asking for the

fentanyl patches again, but I had a dickens of a time keeping those suckers on.

Even with strips of tape or bandaids on the edges, they fell off before it was

time. So I think I'll do better with the pills, just taking them when needed.

Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.

Today is one of those days. I tidied up the kitchen & living room (hid stuff in

bags & boxes & put them in the garage), then vacuumed because we had a potential

adopter coming to look at the kittens. She's taking two!! Both of the girls!

Just 2 more to find homes for.

>

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

OR do you have a phone that takes videos, you can tape him on your phone without picture too. Mine does that.  Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

, I agree.  I couldn't find any tape recorders at WalMart & was too tired to look at Radio Shack or anywhere else.  I think I'll just use my camcorder.  If the doc doesn't want to have his face recorded, I can just leave the lens cap on. 

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:19:17 -0700

Subject: Re: taping appts

My husband and I taped all our doc appts from the beginning.  It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.

To: neurosarcoidosis

Sent: Sun, May 15, 2011 10:45:05 PMSubject: RE: Crud--cardiac sarc 

Thanks, .  I've done some research, so that I can ask halfway intelligent questions.  I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with).  However, I gave my tape recorder to my nephew, as I hadn't used it for several years.  I doubt it works now--he's 7, has Asperger's & loves to take things apart.  I might see if I can get something cheap at WalMart.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000

Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out.  in Ontario, Canada 

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500

Subject: Re: Crud--cardiac sarc

Rose Prayers are here and going out for you. 

Jackie

 

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc  Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more research.  On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens.  She's taking two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

[Guest guest]

Thanks for the suggestion, . I probably could get something like that, but I don't want to spend much money, plus the appt is for early Thursday. Some of the group may want to check it out. it's amazing how much you miss during an appt.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Tue, 17 May 2011 15:12:21 +1000> Subject: Re: taping appts> > Is it possible to get little digital voice recorders? Things like this?> http://search.dicksmith.com.au/electronics/Digital%20Voice%20Recorder> > xo > > > > > , I agree. I couldn't find any tape recorders at WalMart & was too tired to look at Radio Shack or anywhere else. I think I'll just use my camcorder. If the doc doesn't want to have his face recorded, I can just leave the lens cap on. > > > > Ramblin' Rose> > Co-owner/Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > Date: Mon, 16 May 2011 07:19:17 -0700> > Subject: Re: taping appts> > > > > > > > My husband and I taped all our doc appts from the beginning. It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.> > > > > > > > To: neurosarcoidosis > > Sent: Sun, May 15, 2011 10:45:05 PM> > Subject: RE: Crud--cardiac sarc> > > > > > Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.> > > > Ramblin' Rose> > Co-owner/Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > To: neurosarcoidosis > > > Date: Mon, 16 May 2011 01:33:26 +0000> > Subject: RE: Crud--cardiac sarc> > > > > > > > Rose: sorry to hear about this latest complication; hope things work out. > > in Ontario, Canada> > > > To: Neurosarcoidosis > > > Date: Fri, 13 May 2011 22:45:19 -0500> > Subject: Re: Crud--cardiac sarc> > > >  > > > > Rose Prayers are here and going out for you. > > Jackie> > > > Today I broke my Personal Record;;;;;;;; > > I am STILL ALIVE............> > Crud--cardiac sarc> > > > > > Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.> > > > > > Ramblin' Rose> > Co-owner/Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

My phone does that, but just for a minute or two at a time. My camcorder will last at least an hour; I just have to charge it tomorrow.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: mebramer@...Date: Tue, 17 May 2011 11:52:40 -0600Subject: Re: taping apptsOR do you have a phone that takes videos, you can tape him on your phone without picture too. Mine does that. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb , I agree. I couldn't find any tape recorders at WalMart & was too tired to look at Radio Shack or anywhere else. I think I'll just use my camcorder. If the doc doesn't want to have his face recorded, I can just leave the lens cap on. Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:19:17 -0700Subject: Re: taping apptsMy husband and I taped all our doc appts from the beginning. It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.To: neurosarcoidosis Sent: Sun, May 15, 2011 10:45:05 PMSubject: RE: Crud--cardiac sarc Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Rose my cell phone records audio (no it is not a fancy phone) do you have a cell that might do that for you?

To: neurosarcoidosis Sent: Mon, May 16, 2011 10:34:01 PMSubject: RE: taping appts

, I agree. I couldn't find any tape recorders at WalMart & was too tired to look at Radio Shack or anywhere else. I think I'll just use my camcorder. If the doc doesn't want to have his face recorded, I can just leave the lens cap on.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:19:17 -0700Subject: Re: taping appts

My husband and I taped all our doc appts from the beginning. It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.

To: neurosarcoidosis Sent: Sun, May 15, 2011 10:45:05 PMSubject: RE: Crud--cardiac sarc Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc

Rose Prayers are here and going out for you.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more

research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the

kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Actually, Connie, my granddaughter took me to the appt & she recorded it for me! I had planned to use my camcorder & forgot it, so she came to the rescue.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Fri, 20 May 2011 22:41:21 -0700Subject: Re: taping apptsRose my cell phone records audio (no it is not a fancy phone) do you have a cell that might do that for you?To: neurosarcoidosis Sent: Mon, May 16, 2011 10:34:01 PMSubject: RE: taping appts , I agree. I couldn't find any tape recorders at WalMart & was too tired to look at Radio Shack or anywhere else. I think I'll just use my camcorder. If the doc doesn't want to have his face recorded, I can just leave the lens cap on. Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:19:17 -0700Subject: Re: taping apptsMy husband and I taped all our doc appts from the beginning. It was hard to remember all the big words and then to make sure we understood what was going on with me and my sight to go back and listen to it at home was good and then listen to it more than once.To: neurosarcoidosis Sent: Sun, May 15, 2011 10:45:05 PMSubject: RE: Crud--cardiac sarc Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22