Re: (unknown)

[Guest guest]

I have them but mine are from the methotrexate. When I have one coming up, I increase my folic acid to 2 mgs/day and that knocks it out.

(unknown)

TO everyone in the groupI have a question, and susan suggested asking thegroup. Does anyone there have a problem with blistersin their mouth, or mouth ulcers. I have never in mylife had this happen till recently, since rp. Isthis part of the RP, or is it from another associateddisease? Also what will help. Theyare almost likewater blisters, Not really so painfull but veryanoying. Also get lots of mouth ulers, those are verypainful. dawn__________________________________________________

[Guest guest]

Christy

I am not on the mesthtrexate. So I guess they are

from that med. But the folic acid idea is a good one,

and i may try that. Hope you are doing well. NO

swollen ear, or swollen anything else. dawn

--- Christy lotastuf@...> wrote:

> I have them but mine are from the methotrexate. When

> I have one coming up, I increase my folic acid to 2

> mgs/day and that knocks it out.

>

>

> (unknown)

>

>

> TO everyone in the group

>

> I have a question, and susan suggested asking the

> group. Does anyone there have a problem with

> blisters

> in their mouth, or mouth ulcers. I have never

> in my

> life had this happen till recently, since rp. Is

> this part of the RP, or is it from another

> associated

> disease? Also what will help. Theyare almost

> like

> water blisters, Not really so painfull but very

> anoying. Also get lots of mouth ulers, those are

> very

> painful. dawn

>

> __________________________________________________

>

[Guest guest]

Dawn,

Thanks for sharing, I enjoyed your post. Gives you something to think about.

Hugs,

Sandy

>

> Here are some good thoughts for everyone dawn

>

>

> Good Thoughts

>

> There are moments in life when you miss someone so

> much that you want

> to

> pick them from your dreams and hug them.

>

>

> Dream what you want to dream; go where you want to go;

> be what you want

> to

> be, because you have only one life and one chance to

> do all the things

> you

> want to do.

>

>

> May you have enough happiness to make you sweet,

> enough trials to make

> you

> strong, enough sorrow to keep you human, enough hope

> to make you happy.

>

>

> Always put yourself in others shoes. If you feel that

> it hurts you, it

> probably hurts the other person, too.

> >

> >

> The happiest of people don't necessarily have the best

> of everything;

> they

> just make the most of everything that comes along

> their way.

>

>

> Happiness lives for those who cry, those who hurt,

> those who have

> searched,

> and those who tried, for only they can appreciate the

> importance of

> people

> who have touched their lives.

>

>

> Love begins with a smile, grows with a kiss and ends

> with a tear.

>

>

> The brightest future will always be based on a

> forgotten past, you

> can't

> go

> on well in life until you let go of your past failures

> and heartaches.

>

>

> When you were born, you were crying and everyone

> around you was

> smiling.

> Live your life so that when you die, you're the one

> who is smiling and

> everyone around you is crying.

>

> Please send this message on to those people who mean

> something to you,

> to

>

> those who have touched your life in one way or

> another, to those who

> make

>

> you smile when you really need it, to those that make

> you see

> the brighter side of things when you are really down

> and to those you

> want

> to tell how much their friendship/love is appreciated.

>

>

> And, if you don't forward this on ... don't worry

> about it, nothing bad

> will

> happen to you; you will just miss out on the

> opportunity to brighten

> someone's day with this message.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

This is Lulu (Lucy) here,

I have been bothered with mouth ulcers, it seems like all of my life. I would get as many as four or five at a time and they would hurt so very bad.

There could be a connection with RP and there could also be a connection wih taking antibiotics, I have had a case of them pop up when I took a course of antibiotics. I did find a good preventive though. It is Rembrandt toothpaste especially for the prevention of canker sores. It really works.

It has to do wih something in the regular toothpaste that causes or aggrevates the ulcers.

I do honestly believe that I had RP a lot longer than a couple of years. I was only diagnosed a year ago this month. There could really be somethiing to RP having something relation to the ulcers.

Love and Prayers, Lucy

[Guest guest]

Dawn, I was just wondering abot Jana too. I posted her mother in law and

will wait to see if I get a response.

How are you doing? Hope all is well with you.

Hugs

[Guest guest]

Dawn

That was great! And very appropriate!LOL

Lots of love

Glenda

--- Dawn dmorgan26347@...> wrote:

> susan thought this might be appropriate after what

> we

> were discussing last night, dawn

>

>

> Subject: the atheist

>

>

>

> An atheist was walking through the woods, admiring

> all

> that the " accident

> of evolution " had created.

>

> " What majestic trees! What powerful rivers! What

> beautiful animals! " , he

> said to himself. As he was walking alongside the

> river

> he heard a rustling

> in the bushes behind him.

> Turning to look, he saw a 7-foot grizzly bear charge

> towards him. He

> ran as fast as he could up the path. He looked over

> his shoulder and saw

> the grizzly was closing in. Somehow, he ran even

> faster, so scared that

> tears came to his eyes. He looked again and the bear

> was even closer. His

> heart was pounding as he tried to run faster. He

> tripped and fell to the

> ground. He rolled over to pick himself up but the

> bear

> was right over him,

> reaching for him with its left paw and raising its

> right paw to strike him.

> At that instant the atheist cried, " Oh my God!.... "

>

> Time stopped. The bear froze. The forest was silent.

> Even the river

> stopped moving.

> As a bright light shone upon the man, a voice came

> out

> of the sky, " You

> deny my existence for all these years, teach others

> that I don't exist and

> even credit creation to a cosmic accident. Yet now

> you

> call to me and

> expect me to help you out of this predicament? Am I

> to

> count you as a

> believer? " The atheist looked directly into the

> light,

> " I am a man of

> principle and it would be hypocritical to become a

> Christian and ask for

> your help after all these years.... but perhaps you

> could make the bear a

> Christian? "

>

> " Very well " said the voice.

> The light went out.

> The river ran.

> The sounds of the forest resumed.

> And then the bear dropped his right paw .... Brought

> both paws

> together..... bowed its head and spoke: " Lord, for

> this food which I am

> about to receive, I am truly thankful.

>

> __________________________________________________

> Get personalized email addresses from Yahoo! Mail -

> only $35

> a year! http://personal.mail.yahoo.com/

>

__________________________________________________

Get personalized email addresses from Yahoo! Mail - only $35

a year! http://personal.mail.yahoo.com/

[Guest guest]

In a message dated 2/4/01 7:27:19 AM Pacific Standard Time,

dmorgan26347@... writes:

<< thought for the day, even though some of us have

never met, we are tied together as friends, through a

disease, that only if we let it will get the best of

us. But through friendship and laughter we can beat

this awful disease called RP dawn

>>

Couldn't have said it better Dawn!! Thank you!

Hugs

[Guest guest]

Dawn, that doesn't sound good at all. I don't know if it is RP related or

not. I do get the pain in the back and around the kidneys and hips. Can't

sleep either, but it is never red or hot. I think I would call the doctor.

I wouldn't wait . Get your eyes checked too. Please do something or I'm

going to have to add you to my worrying list and that is getting too long.

You all must STOP all of this!!! Do you hear me?????LOL

Please let me know what you find out.

HUgs

[Guest guest]

Dawn

You probley wondering who i am, but , i am 100% with the group which (we

are all cyber-space a huge family who deeply cares and is totally with us

all, in our hearts and in our souls, but the question i am asking,,, is...

have you had your appendix checked? I am not to sure if even this question

pertains to you, but, i was reading all the posts and i am so close to this

family, and that is why i ask this question because my sister , thought

she had a back ache, or just a simple side ache.. She did not even go the dr.

(insurance issue) but after ten days, in bed with this persistant pain, and

finally not being able to do her (boo boo in the toliet) neither also pee,

sorry, but i am very blunt with words, but anyway, that her husband finally

carried her to the hospital, after she finally around the 8th day couldnt

even drink water without it coming back up! still 3 days went by and we

didnt find out till the 3rd day in the hospital (because she made the drs,

and nurses not to tell her family or husband) that her appendix was as if she

was 11 pds pregnant!! Can you believe all of this??? so finally when the dr

said straight forward either operate or die!!! so when they cut her open,

the infection and puss, she was in ICU for 7 days with a fever of 104, it was

really touch and go. But with all the prayers of the group and with the

prayer chain i started her in and so on, Thank god she is doing some

what good. She is at home but the drs, said it will be at least 6 months,

until she can actually do anything. (cooking, sitting long periods etc. So

please accept my apoligy if i went out there and vented off, but when i read

or hear someone is having back or any pain it concerns me.. So please again

except my apoligy.

Love and warm wishes and prayers to you.

Bonita

[Guest guest]

Dawn,

I think you should call your Doc. first thing in the morning.

Are you on any meds.?

Hugs,

Sandy

> Hi all

>

> Question to anyone, and all, I haven't been at this

> Rp to long so I don't know all of the symtoms,

> wondering if i could be starting to flare, thursday,

> i had some pain in my throat, Friday , couldn't talk,

> then Sat.my Eyes where very, very, deep red, sun, did

> ok till evening then started coughing, its still in my

> throat, doesn't seem to be in the lungs, also over my

> left kidney from the spine going around into the left

> hip, very hot and sore, can't hardly walk with out

> any pain, just curious, should i call DR. at

> night its really bad, can't sleep without coughping

> and choking. thansk dawn

>

> __________________________________________________

> Get personalized email addresses from Yahoo! Mail - only $35

> a year! http://personal.mail.yahoo.com/

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

, thanks, i am going to contact Dr. in the

morning, if i can make it through the nite ok. not

sure yet, coughing and choking is keeping me awake.

also eyes have turned red again. dawn

--- RCColloran@... wrote:

> Dawn, that doesn't sound good at all. I don't know

> if it is RP related or

> not. I do get the pain in the back and around the

> kidneys and hips. Can't

> sleep either, but it is never red or hot. I think I

> would call the doctor.

> I wouldn't wait . Get your eyes checked too. Please

> do something or I'm

> going to have to add you to my worrying list and

> that is getting too long.

> You all must STOP all of this!!! Do you hear

> me?????LOL

>

> Please let me know what you find out.

>

> HUgs

>

>

__________________________________________________

[Guest guest]

Bonita,

I am so glad to hear your sister is doing better.

Hugs,

Sandy

> Dawn

>

> You probley wondering who i am, but , i am 100% with the group which

(we

> are all cyber-space a huge family who deeply cares and is totally with us

> all, in our hearts and in our souls, but the question i am asking,,, is...

> have you had your appendix checked? I am not to sure if even this

question

> pertains to you, but, i was reading all the posts and i am so close to

this

> family, and that is why i ask this question because my sister ,

thought

> she had a back ache, or just a simple side ache.. She did not even go the

dr.

> (insurance issue) but after ten days, in bed with this persistant pain,

and

> finally not being able to do her (boo boo in the toliet) neither also pee,

> sorry, but i am very blunt with words, but anyway, that her husband

finally

> carried her to the hospital, after she finally around the 8th day couldnt

> even drink water without it coming back up! still 3 days went by and we

> didnt find out till the 3rd day in the hospital (because she made the drs,

> and nurses not to tell her family or husband) that her appendix was as if

she

> was 11 pds pregnant!! Can you believe all of this??? so finally when the

dr

> said straight forward either operate or die!!! so when they cut her

open,

> the infection and puss, she was in ICU for 7 days with a fever of 104, it

was

> really touch and go. But with all the prayers of the group and with the

> prayer chain i started her in and so on, Thank god she is doing some

> what good. She is at home but the drs, said it will be at least 6 months,

> until she can actually do anything. (cooking, sitting long periods etc. So

> please accept my apoligy if i went out there and vented off, but when i

read

> or hear someone is having back or any pain it concerns me.. So please

again

> except my apoligy.

>

> Love and warm wishes and prayers to you.

> Bonita

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

In a message dated 2/5/01 6:21:02 PM Pacific Standard Time,

dmorgan26347@... writes:

<< can't sleep without coughping

and choking. thansk dawn >>

Dawn, I forgot..... this was a major symptom for Rich with sleep apnea. He

would wake up during the night coughing so bad he would actually throw up.

Might want to check into that.

HUgs

[Guest guest]

In a message dated 2/5/01 8:10:48 PM Pacific Standard Time,

dmorgan26347@... writes:

<< , thanks, i am going to contact Dr. in the

morning, if i can make it through the nite ok. not

sure yet, coughing and choking is keeping me awake.

also eyes have turned red again. dawn

>>

Dawn, Please call the dr. Hope you have a good one.LOL Let us know

Please!!!

hugs

[Guest guest]

Talked to Dr. today and they uped my Pred. from 25mg

to 40 mg for now. Also saw eye Dr. said eyes are ok ,

but what is happening is the capilaries in the eyes

are breaking, could be fromthe RP hoping that maybe

the up Pred will also take care of that. The

pressures in the eyes are ok and that is good. hope

to see you at chat on Wed. dawn

--- RCColloran@... wrote:

> Dawn, that doesn't sound good at all. I don't know

> if it is RP related or

> not. I do get the pain in the back and around the

> kidneys and hips. Can't

> sleep either, but it is never red or hot. I think I

> would call the doctor.

> I wouldn't wait . Get your eyes checked too. Please

> do something or I'm

> going to have to add you to my worrying list and

> that is getting too long.

> You all must STOP all of this!!! Do you hear

> me?????LOL

>

> Please let me know what you find out.

>

> HUgs

>

>

__________________________________________________

[Guest guest]

Dawn, sorry I didn't make it to chat today. It's been a bad week.LOL Glad

you saw your doctor. Hope the new dose of pred works, just dont start to

decrease too soon or too much.

Know I'm thinking about you and hope you are well soon.

Hugs

Glad you had your eyes checked too.!!

[Guest guest]

Dawn.... I'm soooo glad that you are better. Gosh, it's amazing how we start

to worry about everyone, no matter how new you are... YOu are now part of the

family.

I am headed back up on the pred. Now at 25mg and hoping to stay there. I

need to start the Imuran, but am being a chicken..LOL Wish I had a dr who

knew what he was doing so I wouldn't have to do it by myself. LOL

Please continue to get better each day and keep me posted.

HUgs

[Guest guest]

hi claudia i sure missed you today, the higher dose

of pred works wonders, in just two days, i'm still a

little bit wheezies, and coughing, but nothing like i

was, it amazes me the my body responds so quickly to

the uped dose. it seems like as soon as I go below 30

mg. i get in trouble every time. dawn

--- RCColloran@... wrote:

> Dawn, sorry I didn't make it to chat today. It's

> been a bad week.LOL Glad

> you saw your doctor. Hope the new dose of pred

> works, just dont start to

> decrease too soon or too much.

>

> Know I'm thinking about you and hope you are well

> soon.

>

> Hugs

>

>

> Glad you had your eyes checked too.!!

>

__________________________________________________

[Guest guest]

>,

Are you still holding on to that Imuran script? Once you take the first one

it gets easier. Took me a 1/2 hour to take my first dose of Cyclosporine.

LOL I was chicken too after reading about all the side effects. Do you have

an appointment to see a new Rheumy yet? Am I in a nagging mood or what

today. LOL

Love Ya,

Sandy

I am headed back up on the pred. Now at 25mg and hoping to stay there. I

> need to start the Imuran, but am being a chicken..LOL Wish I had a dr who

> knew what he was doing so I wouldn't have to do it by myself. LOL > HUgs

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

Sandy. LOL No I don't still have the script..... I have the pills.LOL Just

sitting here looking at me..

Still trying to find a rheumy... All that I have called have dropped my

insurance. Great huh??? I WILL find one. In fact I have to call my

cardiologist today to see if he could get me into Stanford University. Keep

your fingers crossed for me. Was kind of waiting to get the rheumy before I

took it. Today I woke up with a sore throat and a cold. Don't think this is

a good time to start.

You can nag all you want....I need that. Ask Connie H. LOL She nudges and

you nag....what a great combo....I will get well with you two. Love you

lots!!

How are you feeling Sandy? How is the new meds? I keep you and in

my prayers. Please know that.....

[Guest guest]

Oh Sandy, I'm so happy about your lungs...Must feel great to breath again

huh?...

Keep it up and keep getting better all the time..... My ears, nose and ribs

are sore, but not a real flare. Darn cold I woke up with won't go away.LOL

I refuse to have it tomorrow!!!! Not going to stay this time.

How's doing? When does she start her treatments? Give her a big hug

for me.

Love ya

[Guest guest]

,

Well at least you filled the prescription! LOL I hope you find a Rheumy

soon, I will keep my fingers crossed. Are you flaring at all?

I'm doing okay so far on the Cyclosporine, Just getting the burning in my

stomach and loss of appetite. I don't know if it works right away or if it

has to build up in your system. Forgot to ask my Doc.All I know is my lungs

feel great today, they have not been this good in over a year. If it's the

cyclosporine thats helping

it's worth taking it.

Love Ya,

Sandy

Re: (unknown)

> Sandy. LOL No I don't still have the script..... I have the pills.LOL

Just

> sitting here looking at me..

>

> Still trying to find a rheumy... All that I have called have dropped my

> insurance. Great huh??? I WILL find one. In fact I have to call my

> cardiologist today to see if he could get me into Stanford University.

Keep

> your fingers crossed for me. Was kind of waiting to get the rheumy before

I

> took it. Today I woke up with a sore throat and a cold. Don't think this

is

> a good time to start.

>

> You can nag all you want....I need that. Ask Connie H. LOL She nudges

and

> you nag....what a great combo....I will get well with you two. Love you

> lots!!

>

>

>

> How are you feeling Sandy? How is the new meds? I keep you and

in

> my prayers. Please know that.....

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

,

starts radiation therapy in 2 weeks. She's doing okay.

How is your cold today? Hope you are feeling better.

Love Ya,

Sandy

>

> How's doing? When does she start her treatments? Give her a big

hug

> for me.

>

> Love ya

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

Sandy, I told you I refused to get a cold. I feel much better today. See,

positive thinking will shoo it away.LOL

Glad you are getting to spend the day with . Have a great time.

Hugs

[Guest guest]

Sharon, I was dx with " Iritis " before the biopsy even came back. I remember

how very painful it was. It was treated with steroid eye drops (sorry I cant

remember the name of them). The infection lasted about 6 or 8 weeks, and

since I was in a major flare at the time (altho I frankly didn't know what a

flare was), the Opthomologist said it was common with RP. I wish I could be

of more assistance but I suffer from CRS disease as well! LOL, Judy O