hi

[Guest guest]

Dear Sharon yes we will add Billy and you too to our Prayer list.I know what you going thru when it comes to Family

members. But please hang in there things have a way of working out for the Good. Just keep you Faith up. ok.

Love

Heidi

Also, I got some really bad news from my husband yesterday. He went to see an ENT doctor (the one that dx my RP). He has been having a problem with feeling like there was something stuck in his throat, pain and his voice sounding different. Well, the doctor looked up his nose down his throat and found a growth. He has to go into the hospital on the 16th of Sept. and have a biopsy done and he will be put to sleep for this. Please Pray that it comes back negative. I lost my mother to cancer not too long before my father passed away. Can you guys please put him on all of your Prayer lists? His name is Bill but I call him Billy. I am trying to get him into the hospital sooner than the 16th. The doctor told those dumb nurses get him in ASAP. So far he had to call the office 3 times to remind them (of course I am getting angry about this). The doctor is very good but the help in this one office has to go. Thanks in advance. Love, Sharon 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]

Hi Sharon

I am so sorry to hear about Billy but I agree that the office workers aren't very helpfull when you need it. I have an appointment for Oct. 9th to see my Ruemy here in town and she told me that if I needed to see to let her know. So far they say I need my records before they will put me on a cancelation list. I guess if it isn't one thing it is another huh? We all need to have a birtday every month so we can make a wish and maybe 1 out of 12 will come true and it will work. LOL Plus we get to eat cake each month ! I wonder if getting rid of our illness is like playing cards?? It is a game that I think someone has STACKED the desk on us. LOL One the hardest things in being sick is the waiting: wait for dr. appt., wait for tests to come back, wait for more tests to come back , then you have to wait for the results, then there is waiting for the dx , then wait to find out what treatment you should have, then there is wait to see if you respond to it. WAIT, WAIT, WAIT !!!!!!!!!!!!!!!!!! The one good thing is that it isn't, most of the time is : WEIGHT, WEIGHT, WEIGHT!!!!!!!!! LOL

But all the kidding aside is that I sure hope things will work out and some where out there is the smooth road we are in hopes of finding. Guess I'ld be happy with a semi-smooth road. My thoughts and prayers are with your family. Please take care .

Love ya

Sally

[Guest guest]

Sharon,

Sending good thoughts and prayers that all goes well for Billy and your Endoscopy results are okay.

Sandy

Hello everyone, I haven't been posting much lately but I try to always read the posts. I had an endoscopy this morning. I just had one in January but the GI doc wanted to do it again because of all the pain I've been having in my stomach. We shall see? Also, I got some really bad news from my husband yesterday. He went to see an ENT doctor (the one that dx my RP). He has been having a problem with feeling like there was something stuck in his throat, pain and his voice sounding different. Well, the doctor looked up his nose down his throat and found a growth. He has to go into the hospital on the 16th of Sept. and have a biopsy done and he will be put to sleep for this. Please Pray that it comes back negative. I lost my mother to cancer not too long before my father passed away. Can you guys please put him on all of your Prayer lists? His name is Bill but I call him Billy. I am trying to get him into the hospital sooner than the 16th. The doctor told those dumb nurses get him in ASAP. So far he had to call the office 3 times to remind them (of course I am getting angry about this). The doctor is very good but the help in this one office has to go. Thanks in advance. Love, Sharon 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]

Hi

Hopefully you are sleeping by now and I wanted to tell you I was

sorry I didn't call you yesterday. Was still rather upset about

that dentist appointment and don't know about you, but when I get

that upset it really takes a toll on me. I also got involved trying

to get all the paperwork for my insurance company for the damages I

had from that lighting. I still have to take the computer and

printing in for evaluation and then submit that claim. It's so

difficult since I don't have anyone to help me. is still in

Oregon, but should be back home toward the end of the month or first

of October.

I'll try and perhaps give you a call later this afternoon. Hope you

are taking it easy and you let the doctor know about your swollen

feet.

So sorry to hear that Lu is not feeling well. Last time I emailed

her told her I would try and give her a call too, but I don't know

what time zone she is in. Sure would hate calling her and it be way

to early in the morning since I live here on the east coast.

I'm really starting to slow down myself and the time for the surgery

is getting closer. Never thought I would say this, but I'm looking

forward to that day and getting it over with.

Well, I need to get back to some of this paperwork stuff and see if

I can finish up so I can get what I have had to pay for in repairs

out Monday to my insurance company. I've run out of money so will

have to wait untiil they send me a check for the stuff so far...I'm

up to close to $800 in damages and still have another $500 to submit

after I have someone evaluate the computer.

hugs

Sharyn

> Good morning all... well it is 12:45am here in Calif so it is

morning. LOL I

> just can't seem to get to bed before 3-4 am anymore. I will try

after I type

> this last post.

>

> I went shopping today with and bought Makeila some school

clothes

> that were a real bargin. Then we went grocery shopping and then

Rich took us

> to dinner. Then we all watched a tape. My ankles are the size

of trees.

> Yes I know ....watch the salt and get off my feet for a few

minutes.

>

> I do so badly want to slow down, but my body is running at

100mph... kind of

> like the way Heidi drives. LOL

>

> I will try to rest tomorrow, or today... later.. All I want to do

is to go

> buy some onion sets so that Rich can plan them. Then I promise I

will try to

> rest. Good thing I can't drive yet.LOL

>

> I have a special request. Marie Pia's daughter Coralie isn't doing

well

> again. I would appreciate all the good thoughts and prayers that

you can

> find for both of them. I will keep you updated on them as I hear.

>

> Lu posted and she is doing poorly again and doesn't know if she is

going back

> to the hospital tomorrow or Monday. I will also try to keep an

update on

> her. Keep those good thoughts going her way.

>

> Okay, I think I'm going to try to go to bed or at least drag my

body up the

> stairs and get into bed... LOL

>

> I hope you all have a great day and know I am sending a hug to

each and every

> one of you. ( no wonder my sternum still hurts.... it's all the

hugs...lol

> and worth every bit).

>

> hugs

>

[Guest guest]

Sharyn, I hope you had a better day today. I slept most of the day. I'm

ready for bed now and am going to try to get there. LOL Just trying to catch

up still.

YOu are in my thoughts and prayers..... You a get will you hear. I'm still

looking for H post on the dental work.

You shouldn't have to put up with all this crap. Please get another

dentist!!!!! I worry about you so.

Hope to talk to you soon.

hugs

[Guest guest]

<I wonder if getting rid of our illness is like playing cards?? It is a

game <that I think someone has STACKED the desk on us.>

> Sally

I marked what you wrote and I've been thinking about it. This

rhyme is sort of unfinished. It's not quite right. It doesn't really

matter though. That's not why I wrote it.

About the line " It's NOT bigger than, ALL that I AM! " It has been

stated " The WHOLE is GREATER than the SUM of its parts. "

(gestalt) That's what I was thinking about. The " I " doesn't mean

" me. " It means every thing that makes me who I am.

Like this group; together each of us is stronger than any one of

us is alone! It's the burden that we share that enables us to lift

up each other! It's something to think about.

About this time my husband says something like: The back seat

is full. Where do you want to me to shovel it (the bull sh--) next?

that's why I write!

blue

What kind of cards are we playing?

Card games can be so much fun.

Is it easy to stack when you're playing? "

`Cause I've never seen it done.

One time I lived there in Vegas.

Thought betting for money was fun!

Soon I was out of money in Vegas

My betting and fun was all done!

Wouldn't bet on a card now for peanuts

Or peanut butter and jam

`Cause even if I bet for peanuts

I'd be in a bigger jam than I am!

In the " game " that we're " playing " called cRaP

I won't get myself caught in a jam

No mater how high stacked the cRaP

It's NOT bigger than, ALL I AM!

Playing Bridge is now my pleasure

I'm not very good at it yet

When I play Bridge, it's such a pleasure

`Cause ALL the players determine the bet!

Playing cRaP is sure NOT a pleasure

It SUCKS and I hate it, and yet ...

Having friends to PLAY WITH! IS pleasure

It's a deck stacked (in our favor!) YOU BET!

[Guest guest]

,

Yes it would be a perfect world if we could all avoid stress! boy, that stress will screw you up every single time!!!!

I guess i'm gonna have to go in and see Dr. Trentham, figures, I was just there yesterday (because I drive my mom in to see him since he is also her rhuemy) and she had mentioned to him that my ear has been flaring and he said he wants to see me and do bloodwork the next time it flares. (ugh! i hate having to go to the doctor, it seems like i'm there every other week to one doc or another!)

Thanks for your help!

take care of yourself.

[Guest guest]

,

I can totally relate to the red and swollen ears, that is where my flares happen.

Unfortunately it happened twice a year for 5 years before i found a doc who knew what the hell was happening to me! (but by then it was too late, i had lost my hearing)

anyhow, i guess i better call dr. T, thanks again for all your help!!!

(p.s. i have found that putting cortizone creme on my ear makes it less hot and not itchy)

have a good day, good luck with your flare.

[Guest guest]

---

>

> I guess i'm gonna have to go in and see Dr. Trentham, figures, I

was just

When I was first diagnosed with RP a year ago no one here knew how

to treat this disease. So while I was in ICU my daughter went on the

internet and emailed Dr. Trentham. He replied the next day with a

name of a Dr. In Houston. So you are luck to be seeing someone who

has the knowledge how to treat this. I would love to go to the Mayo

clinic and find out exactly what is going wrong with me. But I dont

think that will ever happen.

I go tomorrow to my Dr. Both ears are red and swollen, the nose and

throat are on fire . Oh well

hugs,

[Guest guest]

Hi, is that for me? My name is Natalia. I'm just not sure if this

post was for me, or for a on the list.

[Guest guest]

hey jamie!!

sorry to hear about your grandmother. i will keep her in my thoughts

and prayers. tori will do fine i am sure, its all so new!! great pics

by the way!! maddy is in the hospital again, having a new prot put in

after the other just fell out (she was home only 24hrs the poor thing)

still waiting to hear from chrissy today as to how she is doing.

jodie c

> Hope everyones weekend was good mine ok. My granny was put in the

> hospital on friday she raised me so she is like a mom she lives in FL

> and has been battling cancer for over 11 years. She was just having

> some test run but there has been some complications,nothing to

> serious. But very sad I am very close to her and with Tori just

> statring Kindergarten I can not go down again roght now. Oh yea Tori

> started k last Wednesday. I posted some pics she was so excited, but

> she is having a hard time adjusting her teacher said we will give her

> a few weeks and see how she does.

> How is maddy doing?

> Well talk to you all later

> mom of Tori 5 rss and gina 2 nonrss

[Guest guest]

,

I am so sorry to hear about your granny. How awful for her to be so

sick and you not able to be there with her. But she knows you love

and care about her. She knows you'd be there if you could.

Now, on the bright side, your little Tori is growing up! Starting

kindergarten is a real milestone! Don't worry about the adjustment.

It does take awhile for little ones to adjust to school. Today from

my classroom I could hear several kindergartners crying. They do

cheer up, though. But it's hard when you know it's YOUR child who is

having the difficulty. You want to be there for her and not let her

be unhappy in any way.

Please know that I am praying for you and your granny. I hope things

improve for her.

Jodi Z

[Guest guest]

Hi Peggy,Hope your having a good day. It was a beautiful sunny day in northeast Ohio. No cooking for me today. We went out for dinner!PJ in OH,54, IPF 09, Sjogren's 95 Hi

Hi Group, Well is messing with our internet server so "I DON"T HAVE MY E-MAIL"Oh well I am reading and posting from the board. I feel like I in someone elses kitchen cookin... lolPeggy

[Guest guest]

Hi Group, My nurse came today her name is Jeanie, really nice and caring. we

visited for a couple hours. we went over the medications and their job ( I guess

you would say) It is to keep me comfortable. I like that but they do want me to

take more morphine than I need but I have the last word on that. I think she got

it that I an very sensitive to medication. If I took the

dose prescribed I would wake up by Christmas. We will be watching to see what

goes on.. lol I do trust them so I am fine.

is so relived to have backup. He was so happy to have someone to call if he

needs help or doesn't know what to do in a certain situation. I feel like I may

have called a little early because I still feel " GOOD " even though the morphine

does relieve the discomfort. and I have decided to just take it every 4 to

5 hours. They call for every hour.. NOOOO. But they have no problem

with my wishes. I also have a DNA on the frig. and an emergency number for .

I think that is about it for today. Lord I hope I haven't sent this earlier

today. LOL I have messed with this e-mil all day..

Love to All..

Love & Prayers

Peggy, Florida

IPF 2004

close Back to Sent

Love & Prayers

Peggy, Florida

IPF 2004

[Guest guest]

Peggy

I don't think you called early. They are making yours and 's life

more comfortable. I'll be honest. I fully intend to get them early and

live a long time with hospice. I expect them to renew and renew and

renew. When I feel I need the help, I'm going to get it just like you

did. That doesn't mean I'm giving up or plan to go soon or that I'm

feeling horrible. Just means there is a service available that helps our

lives. I think thats a terrrible misconception that you have to be

horrible for hospice. They forget that even when the doctor puts a time

on our butts just to get us approved, it washes right off with the next

shower as he used a water soluble stamp. So, we ignore it.

>

> Hi Group, My nurse came today her name is Jeanie, really nice and

caring. we visited for a couple hours. we went over the medications and

their job ( I guess you would say) It is to keep me comfortable. I like

that but they do want me to take more morphine than I need but I have

the last word on that. I think she got it that I an very sensitive to

medication. If I took the

> dose prescribed I would wake up by Christmas. We will be watching to

see what goes on.. lol I do trust them so I am fine.

>

> is so relived to have backup. He was so happy to have someone to

call if he needs help or doesn't know what to do in a certain situation.

I feel like I may have called a little early because I still feel " GOOD "

even though the morphine does relieve the discomfort. and I have

decided to just take it every 4 to 5 hours. They call for every hour..

NOOOO. But they have no problem

> with my wishes. I also have a DNA on the frig. and an emergency number

for .

> I think that is about it for today. Lord I hope I haven't sent this

earlier today. LOL I have messed with this e-mil all day..

> Love to All..

>

>

> Love & Prayers

> Peggy, Florida

> IPF 2004

> close Back to Sent

>

>

>

>

>

> Love & Prayers

> Peggy, Florida

> IPF 2004

>