Re: (unknown)

[Guest guest]

L.

I'm hope you are able to get feeling better really fast. Call your eye

doc right away and demand they get you in. If vision gets worse, may

consider taking pred just in case. Vision goes real quick with this

stuff and can be permanent. Mention temporal arteritits to the

receptionist and have her ask the doctor. Bet they'll get you in

quick. Doesn't matter

what you have if it gets you in quick. If they still don't get you in

then ask for the nurse or technician. Explain our disease and that we

can go blind quick. If all else fails, tell them you are documenting

that you need help and that they are refusing to see you and ask for

their first and last name. Bet you will get in within hours. Hate to

sound so nasty, but don't play with this one.

, have you tried Oxycotin for pain? It's a pill form and the other

has had it before and it really does help. I know alot of people

who have severe pain and can still function on it. The other can

probably help you out with more info.

Hang in there we'll all be praying for you. Have a good time with your

son. It's good to hear from you, just wish you felt better.

Take care,

Lund wrote:

>

>

> Hi Llund here. Sorry for being such a bad list person but

> fighting

> such a battle with pain and exhaustion I have a hard time just keeping

> up

> reading the mail. My eyes are sooo bad right now Everything is very

> blurry

> Have an appointment with the eye specialist next week Hope he can

> help. But

> its seems like they get one thing fixed 2 more things break. Welcome

> all new

> comers to the list it has brought me through some really bad times. As

> for a

> symbol for R P how about a Koala Bear It is a rare little bear and

> with a

> tear it may be pretty effective. And men and women could relate. Sue I

> wish

> you the best of luck at Mayo. You and have been thru some really

> rcky

> times family wise, This too will pass, hopfully for the better. You

> are both

> in my prayers as many years ago I went through the same thing. But it

> did

> pass and my came into my life. Poor denise I wish there was some

> way

> to help her through . Angie you are sounding better then the last time

> I

> posted, sounds like you and had a good time. Barb I'm sorry I

> haven't

> kept in touch When I feel more human I'll give you a call. Am going to

> a

> pain guy on the fourteenth to see if he can help me and hopefully the

> Post

> office will decide what they are going to do with me The Post office

> doc

> called my rheumy and was so offensive that she hung up on him.

> I have pain everywhere and has been so difficult to go to work

> everyday. But

> you do what you have to do. When I can't take it anymore then I have

> to go

> in for pain shots that put me out for a day or so.

> My son just called he and his girlfriend are on their way here from

> Fargo so

> I have to quit will try to stay in touch more. Take care all of you

> you are

> never out of my thoughts Love Lund

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

> -----------------------------------------------------------------------

> [

[Guest guest]

L.

I'm hope you are able to get feeling better really fast. Call your eye

doc right away and demand they get you in. If vision gets worse, may

consider taking pred just in case. Vision goes real quick with this

stuff and can be permanent. Mention temporal arteritits to the

receptionist and have her ask the doctor. Bet they'll get you in

quick. Doesn't matter

what you have if it gets you in quick. If they still don't get you in

then ask for the nurse or technician. Explain our disease and that we

can go blind quick. If all else fails, tell them you are documenting

that you need help and that they are refusing to see you and ask for

their first and last name. Bet you will get in within hours. Hate to

sound so nasty, but don't play with this one.

, have you tried Oxycotin for pain? It's a pill form and the other

has had it before and it really does help. I know alot of people

who have severe pain and can still function on it. The other can

probably help you out with more info.

Hang in there we'll all be praying for you. Have a good time with your

son. It's good to hear from you, just wish you felt better.

Take care,

Lund wrote:

>

>

> Hi Llund here. Sorry for being such a bad list person but

> fighting

> such a battle with pain and exhaustion I have a hard time just keeping

> up

> reading the mail. My eyes are sooo bad right now Everything is very

> blurry

> Have an appointment with the eye specialist next week Hope he can

> help. But

> its seems like they get one thing fixed 2 more things break. Welcome

> all new

> comers to the list it has brought me through some really bad times. As

> for a

> symbol for R P how about a Koala Bear It is a rare little bear and

> with a

> tear it may be pretty effective. And men and women could relate. Sue I

> wish

> you the best of luck at Mayo. You and have been thru some really

> rcky

> times family wise, This too will pass, hopfully for the better. You

> are both

> in my prayers as many years ago I went through the same thing. But it

> did

> pass and my came into my life. Poor denise I wish there was some

> way

> to help her through . Angie you are sounding better then the last time

> I

> posted, sounds like you and had a good time. Barb I'm sorry I

> haven't

> kept in touch When I feel more human I'll give you a call. Am going to

> a

> pain guy on the fourteenth to see if he can help me and hopefully the

> Post

> office will decide what they are going to do with me The Post office

> doc

> called my rheumy and was so offensive that she hung up on him.

> I have pain everywhere and has been so difficult to go to work

> everyday. But

> you do what you have to do. When I can't take it anymore then I have

> to go

> in for pain shots that put me out for a day or so.

> My son just called he and his girlfriend are on their way here from

> Fargo so

> I have to quit will try to stay in touch more. Take care all of you

> you are

> never out of my thoughts Love Lund

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

> -----------------------------------------------------------------------

> [

[Guest guest]

L

so sorry to hear about the pain you are feeling, that stinks! I hope this

pain doc helps youout. you deserve it. and a rest from th pain. I hate it

that our regular docs feel their hands are tied when it comes to treating the

pain. maybe you will have better luck with the specialist. I hope you enjoy

your son and his girlfriend just don;t over do it. we are thinking of you.

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

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[Guest guest]

karen,

so sorry yo are having o much pain. i hope the new ain docwill ofer some

relief. m prayers are wit you.

love

denise

[Guest guest]

karen,

hi again i sure wul like to call you occasioally. fr hat mater i would

like the phone nmbers of anone tt wishes to give them tome . it sure

helps to talk ear to ear ometmes. tanks again

denise

[Guest guest]

i also take oxycotin fr pain. 160 mg, 3 times a day. and when i need a

booster fo breakthrough pain i take oxir (wich ia fast acting oxycotin).

ifi didi not take these mds i could no get out o edin te morning. and

boy do i ever pay fr it if i foget to take the next dose and the pain

mdswear off. remembe ---it is alo easier to keep panUNDER control than

to get it UNDER control--a least i ae found that to be true. tere are

tmes when i orget what time i take it in e middlw of he night s i

havestarted wrinin gthe time down. prior to ese mds., i was wheelchair

and bedbownd.

loe,

denis

[Guest guest]

Thanks Liz and all for asking and praying for my dad. He's still in there

(hospital). They took out his catheter today and now he can't go on his own,

so ............as soon as he pees, he can come home. Geez, I can't believe

I'm sitting here writing about my father's potty habits, or lack there of,

but the nurses on the group understand what I mean anyway.

Just keep the prayers flowing please, he still needs them.

>>>>>>>>>>>>>>>>>>>>

Hello everyone, Gail thank you for all the

entertainment, I'm sorry Cyrus is having such a hard

time, you are both in my prayers. Thanks Angie, Sue

and , sometimes my job sounds a little more

" glamorous " than it actually is, although I do love

it! Sue I hope and pray your Dad is doing better. I

think the moon and beacon sounds quite good, could the

letters RP be incorporated somehow? As it is rare we

need to get the connection into people's minds.I think

Montel might be the most sympathetic as he suffers

from ms and must know about some of the problems, MS

is autoimmune, isn't it? Hope everyone has a good day,

love Liz

[Guest guest]

In a message dated 01/31/2000 11:25:02 PM Central Standard Time,

dkowalec@... writes:

<< Just 2 sloty worth from the POLISH PAUPER.

What about ........... a PHOENIX for a logo.

We just keep coming back ........... >>

LOL Dan! Hey some of ours just never leave....LOL

[Guest guest]

In a message dated 01/31/2000 7:43:11 PM Central Standard Time,

susuw@... writes:

<< Geez, I can't believe

I'm sitting here writing about my father's potty habits, or lack there of,

but the nurses on the group understand what I mean anyway.

Just keep the prayers flowing please, he still needs them. >>

LOL Oh , Tell him to drink, drink, drink...{ lots of water }

Let us know how he does....

Love you

Lu

[Guest guest]

its funny dan-----i was just thinking aout a phoenix last night!!!!!!

during the lat two hospitalizationws my doctors did no expec i would

make it. andcall it amiracle tha i did. sound like a god symbol.

sincerely

denie

[Guest guest]

Dear L

I am glad your new pain doc is making a plan of action for you. It is about

time you can look forward to some good help. Do not ever apologize for taking

care of yourself. that is the most important thing you can do for yourself

and the group. When you are up to writing you write and we understand.

Congrats on the upcoming wedding. that is terrific. How old is your son?

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

today

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://disabilities-us.com/shad/

You don't stop laughing because you grow old, you grow old

because you stopped laughing.

Just click on the link below, and sign up for an account at X.com. It

takes less than two minutes, and we'll put $20 cash into your account to

get you started.

So click on this link right now, and come get your $20!

https://www.x.com/new_account.asp?Referrer=angiecatw1aol

**********************************************************************

[Guest guest]

In a message dated 03/02/2000 1:45:33 PM Central Standard Time,

kllund@... writes:

<< Please Keep me in your prayers for a few days Take care

all of you Love and Hugs Lund >>

all of you are in my prayers always. I hope you get to feeling much

better.

Love

Lu

[Guest guest]

Iam so sorry to hear that you are having o many problems. I hope fr

your sakethat itis he meds. something isdefinetely going on. I get

ired sometimes tol I don't think itis a pity pot, I think it s true

frustration anger at the fact that we have to deal ith this disease.

and that is only human to feel tis wa sometimes and that is OK. Give

yourself permission to be human. It is ok to be fed up. hang in

thre, tough. will keep you in my prayers. ifthere is anything i can

do, or if you wan to clal please do.

love

denise

[Guest guest]

:

So sorry to hear of your difficulties. This disease sure is horrid

at times huh. I had problems with using my hands when I had severe

case of Reynaud's. Alot of weakness and numbness. Not sure

if your experiencing anything like that.

Hope they have luck finding out what is going on. My prayers are

with you throughout the day!!

Take care,

Hi Lund here I went to my pain management

Dr and he's asking for your

help. Has anyone on the list that is taking Neouronton had symptoms

like

this ' While standing everything falls out of your hands

your knees buckle

and you almost go out but are able to catch yourself. They

are running

every test in the book to rule out everything but need to know

this as it

very well could have something to do with the way we are taking

it for pain

and how our systems handle it' and as you know there just aren't

alot of

people for him to draw from. He's calling me Friday

Thats next Friday to

get the results of the brain scan to me and would like to have

as much imput

as possible. Get this guys he actually said you people know much

more about

this disease then we do there just isn't enough of you to get a

good study.

Well I told him our list is growing by the minute and we need to

get answers

and if it takes answering A MILLION QUESTIONS FROM ANYONE THEN

THATS WHAT WE

NEED TO DO. I'm in so darn much pain all the time and you

get one thing so

its tolerable and another thing goes nuts then you get these

idiots in the

E R that don't know dittly and when you try to explain anything

they act

like you are a nut case. GOD I HATE THIS DISEASE. Please help me

by

answering the question I asked as many as possible .

Thanks Please

everyone have a painless week for a change Take care andhugs

Lund

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

Conditions

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Our Experts: In-Depth reports:

hi and welcome. maybe we can come up with answers that our doctors

can't

[Guest guest]

Sorry you are having such a bad time. Our prayers are with you.

and Brett.

Please Keep me in your prayers for a few days Take care

>all of you Love and Hugs Lund

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

>

>------------------------------------------------------------------------

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>

>hi and welcome. maybe we can come up with answers that our doctors can't

>

[Guest guest]

,

I donot take the drug you mentioned, but i dohave the dropsies (of m

hands).

My meurologist recently put me on depcote for headaches and so fr is it

like a miracle come true. really wiped them out. Previous i had been

on many drugs for headaches, ie fioricet, sumatrix, imitrix, midran

thlenol 2,3,4. depacote is an anti-seizure med. My friend whois

epileptic takethis drug. tehy did the mri's of the spine and head too.

they were looking for a syrinx, but fortunately didnot find one.

however they dd find how nasty adn deformed and scared sclerosed my back

is. I know there are some people in this groupwho are on the drug you

mentioned. and my neurogist said if the depacot didinot work, we would

try it. It is so refreshing to hear that a doctor realizs that we

hwhohave this disease are a great source of knowledgeable. He is

certainlywilling to listen.

love

denise

[Guest guest]

Dear KAren Lund

know you are in my prayers daily as is everyone here. I know exactly what you

mean about being tired of it.

love, hugs and hope

Angie

[Guest guest]

Dear KAren L

I have never had the medicine you mentioned sorry no answers here

love, hugs and hope

Angie

[Guest guest]

L

happy anniversary in case I forget which I probably will do and enjot the

trip. wish could sneak into your luggage just to get away

love, hugs and hope

Angie

[Guest guest]

Hi ,

You mentioned headaches on this post. I have just

started to get them the past two months. I've NEVER

had them like this before! The top of my head feels

like it's going to blow off!!! It doesn't matter what

I take the only thing that helps is to literally throw

up and then THAT reaks havoc with my ribs! I've got a

raging headache right now and trying to decide whether

I should stay here at work or go home. It started

yesterday in my left eye and now the eye is half

swollen shut, running and the darn headache! YOUCH!

I'm rambling again, anyway I was wondering is this

part of RP? My sister says it migrane but I've never

had these before. Anybody else got suggestions as to

the cause?

Nancie

--- dlbmo@... wrote:

> ,

> I donot take the drug you mentioned, but i dohave

> the dropsies (of m

> hands).

> My meurologist recently put me on depcote for

> headaches and so fr is it

> like a miracle come true. really wiped them out.

> Previous i had been

> on many drugs for headaches, ie fioricet, sumatrix,

> imitrix, midran

> thlenol 2,3,4. depacote is an anti-seizure med. My

> friend whois

> epileptic takethis drug. tehy did the mri's of the

> spine and head too.

> they were looking for a syrinx, but fortunately

> didnot find one.

> however they dd find how nasty adn deformed and

> scared sclerosed my back

> is. I know there are some people in this groupwho

> are on the drug you

> mentioned. and my neurogist said if the depacot

> didinot work, we would

> try it. It is so refreshing to hear that a doctor

> realizs that we

> hwhohave this disease are a great source of

> knowledgeable. He is

> certainlywilling to listen.

> love

> denise

>

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

Sounds like the RP headaches I get from time to time: Eye closes, face

squeezes, and at worst vomiting.

I have had great luck taking, oddly enough, Salagen tablets. At the first

sign of the headache I take 2. Salagen promotes salivation and is not a

pain pill and relatively benign. It appears that my salivary glands were

affected as in Sjogrens: dry mouth. The promotion of the slaiva seems to

stop the headaches. There are substantial facial nerves running through the

glands and perhaps the Salagen relieves some pressure there.

Re: (unknown)

Hi ,

You mentioned headaches on this post. I have just

started to get them the past two months. I've NEVER

had them like this before! The top of my head feels

like it's going to blow off!!! It doesn't matter what

I take the only thing that helps is to literally throw

up and then THAT reaks havoc with my ribs! I've got a

raging headache right now and trying to decide whether

I should stay here at work or go home. It started

yesterday in my left eye and now the eye is half

swollen shut, running and the darn headache! YOUCH!

I'm rambling again, anyway I was wondering is this

part of RP? My sister says it migrane but I've never

had these before. Anybody else got suggestions as to

the cause?

Nancie

--- dlbmo@... wrote:

> ,

> I donot take the drug you mentioned, but i dohave

> the dropsies (of m

> hands).

> My meurologist recently put me on depcote for

> headaches and so fr is it

> like a miracle come true. really wiped them out.

> Previous i had been

> on many drugs for headaches, ie fioricet, sumatrix,

> imitrix, midran

> thlenol 2,3,4. depacote is an anti-seizure med. My

> friend whois

> epileptic takethis drug. tehy did the mri's of the

> spine and head too.

> they were looking for a syrinx, but fortunately

> didnot find one.

> however they dd find how nasty adn deformed and

> scared sclerosed my back

> is. I know there are some people in this groupwho

> are on the drug you

> mentioned. and my neurogist said if the depacot

> didinot work, we would

> try it. It is so refreshing to hear that a doctor

> realizs that we

> hwhohave this disease are a great source of

> knowledgeable. He is

> certainlywilling to listen.

> love

> denise

>

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

Dear Nancie,

Iam sosorry youarehaving hose terribleheadahes. You know Ihad tem long

before i waw diagnod ithrp and midran usuallyhelped, orsumatrix,

imitrix. The shotform worked wonderfully. however. you talkabutthe

headahes being different. i guessfor youandanyone else, if you start to

noice a difference in your heaaches pleae TELL YOU DOCTOR WITOUT DELAY

Innotemphasis this enough. Headaches can mean a lot of hings. I had to

go through a lot of meds and docs before i founda neurologitto help me

fin d the med that worked. I too gotheadache on the topof my head. my

husband used to smile with me (lovinglyof coure) when i would ut my

hands on the to ofmy head and sh down hard. Iknowit is sillybut i w

trying to push thehadache down or awyor somehing. I also have had tem

across my temples for toe i make ahot moist towel 9wet adn wring out a

kitchen towel and hen microwve it for about 2 minutes, take it out --be

careful it will be hot and wrapit in a dry kitchne towel and then put it

gentlyon my face. it ould seem to help those kind of headaches.

sometimes midran works. fiorcet cn work but it can be addictive. since

i sarted the depacote -now on three times a dy (250 mg) it reallyhas

cut them down. i may stil wake up with one but it goies awy in about an

hour and then i am usually not troubled with them the rest of the dya.

to keep thesinus headaces at bayI am on continual meds for

snuses--flonase, allegra an usully an antibiotic becauw theyare usually

infected. I also rinse my sinuse with a mixture of wter, slt an baking

soda on a dailybasis. I hopethis helps. UYes the brain does have

connectie tissue so it could be he rp, regardless of whyi juwt d not

want to have them. Iso i sue what workws. But again i want to

emphasis, for anyone, if yoi notice a change in the patterns of

yourheadaches pleawe tell your doctor.

love and hugs

denise

[Guest guest]

Hi ,

Thanks for the suggestions. I will talk to my doc the

next time I see him as I am on such strong pain

killers (more than one) I should be able to cut off my

arm and not feel it!

Nancie

--- dlbmo@... wrote:

> Dear Nancie,

> Iam sosorry youarehaving hose terribleheadahes. You

> know Ihad tem long

> before i waw diagnod ithrp and midran usuallyhelped,

> orsumatrix,

> imitrix. The shotform worked wonderfully. however.

> you talkabutthe

> headahes being different. i guessfor youandanyone

> else, if you start to

> noice a difference in your heaaches pleae TELL YOU

> DOCTOR WITOUT DELAY

> Innotemphasis this enough. Headaches can mean a lot

> of hings. I had to

> go through a lot of meds and docs before i founda

> neurologitto help me

> fin d the med that worked. I too gotheadache on the

> topof my head. my

> husband used to smile with me (lovinglyof coure)

> when i would ut my

> hands on the to ofmy head and sh down hard. Iknowit

> is sillybut i w

> trying to push thehadache down or awyor somehing. I

> also have had tem

> across my temples for toe i make ahot moist towel

> 9wet adn wring out a

> kitchen towel and hen microwve it for about 2

> minutes, take it out --be

> careful it will be hot and wrapit in a dry kitchne

> towel and then put it

> gentlyon my face. it ould seem to help those kind of

> headaches.

> sometimes midran works. fiorcet cn work but it can

> be addictive. since

> i sarted the depacote -now on three times a dy (250

> mg) it reallyhas

> cut them down. i may stil wake up with one but it

> goies awy in about an

> hour and then i am usually not troubled with them

> the rest of the dya.

> to keep thesinus headaces at bayI am on continual

> meds for

> snuses--flonase, allegra an usully an antibiotic

> becauw theyare usually

> infected. I also rinse my sinuse with a mixture of

> wter, slt an baking

> soda on a dailybasis. I hopethis helps. UYes the

> brain does have

> connectie tissue so it could be he rp, regardless of

> whyi juwt d not

> want to have them. Iso i sue what workws. But

> again i want to

> emphasis, for anyone, if yoi notice a change in the

> patterns of

> yourheadaches pleawe tell your doctor.

> love and hugs

> denise

>

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

In a message dated 10/13/00 7:38:21 PM Central Daylight Time, KebaJ@...

writes:

<< perdiem every night and

day for my constipation. >>

me too keba. sometimes it doesn't work too well and other times it is fine.

deb s. (ark)

[Guest guest]

In a message dated 10/13/00 7:38:09 PM Central Daylight Time, KebaJ@...

writes:

<< Hey diane I am in tennessee also. Living in cookeville right now I

am from Lebanon though. I take duclox and perdiem every night and

day for my constipation. With all the pain drugs I am on though they

don't do too much unless I eat some really really greasy food. Hope

that everyone has a pain free day... >>

Keba,

You are my next state neighbor. I live in North Alabama. My step-father's

old endocrinologist, Dr. Tokurak, is now in Cookeville, TN. My mom and

stepdad really sing his praises. My stepfather was very ill for a long time.

He went to many doctors before seeing Dr. Tokurak. Dr. Tokurak diagnosed

him with empty sella syndrome (a condition where the pituitary gland is

basically dead or dying). My mom says he saved my stepdad's life. Anyway,

if you ever need to see an endo, he supposed to be great.