Re: Bob and Daughter,

[Guest guest]

> Dear KAren,

I am michelle, bobs daughter and I living with this terrible disease

since november. I have no children just a wondeful set of parent who

have been right by my sides through all of this. You said you were

in a wheelchair, why? My feet have beeb affected but we do not know

the extent of it. They recently found out that I have had a brroken

bone in each foot which they think has caused alot of the swelling

and pain on the upper part of my foot. Butthey are not sure about

the bottom of my feet-they are RED RED RED. Last week I got great

news on my lung biopsy-i didn't have to have it seems that the spot

has gone away, they think that it was an infection. Then the very

next day, my ear that has been acting up-got drained and it has not

stopped hurting, and not joy joy it has moved to my right nodtril.

Right ear right nostril joy joy. when does it end? where does it

stop? I am going to mayo in a couple of weeks-i am not looking for a

cure just some answers, does anyone have anything concrete? Like

why? you said you are 99% back to normal-i just don't ever

feel like my life will be " normal " again. What is normal-trying to

sleep, but can't because you are hurting so badly, or waking up tp a

new set of problems to deal with..each week it seems to be something

new and exciting that I must deal with and unfortunately my parents

do too, I wish that it din't have to hurt everyone you love, never

mind me i can handle it, but it really hurts me to see the ones you

love hurting. Tell me is the pain inside and out going to stop?

Sorry i guess I just needed to vent tonight-i can't sleep-and i am

just very frustrated with this disease. I don'nt understand it-but i

can handle it. I have to.

thanks for letting me vent.

michelle

>

> My name is and I am now 35. My RP started the same way

> 's did. On top of the ear problems I also had severe joint

> pain and chest pain. I was in a wheel chair right before my DX at

age

> 31 and I want you to know it has been a hellish 4 years for my

family

> and me but " we " made it. If I really think about it I should not

ever

> complain because there are many who went many more years then I

with

> no answers, I guess you can say I was a lucky one, only now can I

say

> that. I am not saying I am cured by no means but looking back just

in

> those 4 years I am so thankful (can't believe I am going to say

> this) " for Prednisone, " Enbrel and many other drugs available to

us.

>

> With my ears nothing would work other than Pulse Steroids (1000 mg

a

> day for 3 day's for a total of 3000mg in 3 days). They say the

human

> body can only withstand one pulsing in a life time due to the shock

> it puts on the body and only to be given to those who are young and

> has no eye and or heart problems. Well we had to do it two times in

> four years. At the time for me I thought it was a quick fix as you

> may but nothing else was working or I would become very ill from

some

> of the common med's. Now looking back I feel we did further damage

to

> my bones from the pulsing, I have major bone loss that I will not

be

> able to recover the amount I need which is why I feel a wee bit

weak

> at times and honestly do not know if I would ever allow them to do

> that to me again, as the saying goes " live and learn " and at the

time

> I was told to live 1st then learn, I still can't figure that one

out

> all I know now is " if I only knew then that I know now " !

>

> My life now is 99% back to normal but the pulsing took it's toll on

> me in some other way's, SO when they can tell me no one will ever

get

> this terrible disorder ever again then and only then will my life

be

> complete to 100%. I do not know if has children but I want

> you to know at the time I had a Four year old so my Mom moved in

with

> us and watched over her child and her child's child and almost five

> years later I cant get rid of her! Thank God for Mom's and Dad's

like

> you! (we really don't want you to leave)

>

> What really interest me in you're post about was the fact

> that the Dr's did " 3 surgeries and loads of antibiotics, " why? did

> they detect any form of infection? If so this info could be very

> helpful to some of us. Also I recommend that you join the RP

> Foundation, they provide up to date info as it comes out and helps

> with awareness of RP!

>

> Please hold on to hope with and let her know there are

other

> young chick's who have gone through what she is now and are all

> better now although truth of the matter is time and top notch DR's

in

> the country and most of all " us " and you to support her back to

good

> health. Bob, please keep us updated on you're daughter and know we

> are here not only for but for the whole family if need be.

>

> Best wishes,

> P.

> Golden, CO.

[Guest guest]

> Dear Bob,

>

> My name is and I am now 35. My RP started the same way

> 's did. On top of the ear problems I also had severe joint

> pain and chest pain. I was in a wheel chair right before my DX at

age

> 31 and I want you to know it has been a hellish 4 years for my

family

> and me but " we " made it. If I really think about it I should not

ever

> complain because there are many who went many more years then I

with

> no answers, I guess you can say I was a lucky one, only now can I

say

> that. I am not saying I am cured by no means but looking back just

in

> those 4 years I am so thankful (can't believe I am going to say

> this) " for Prednisone, " Enbrel and many other drugs available to

us.

>

> With my ears nothing would work other than Pulse Steroids (1000 mg

a

> day for 3 day's for a total of 3000mg in 3 days). They say the

human

> body can only withstand one pulsing in a life time due to the shock

> it puts on the body and only to be given to those who are young and

> has no eye and or heart problems. Well we had to do it two times in

> four years. At the time for me I thought it was a quick fix as you

> may but nothing else was working or I would become very ill from

some

> of the common med's. Now looking back I feel we did further damage

to

> my bones from the pulsing, I have major bone loss that I will not

be

> able to recover the amount I need which is why I feel a wee bit

weak

> at times and honestly do not know if I would ever allow them to do

> that to me again, as the saying goes " live and learn " and at the

time

> I was told to live 1st then learn, I still can't figure that one

out

> all I know now is " if I only knew then that I know now " !

>

> My life now is 99% back to normal but the pulsing took it's toll on

> me in some other way's, SO when they can tell me no one will ever

get

> this terrible disorder ever again then and only then will my life

be

> complete to 100%. I do not know if has children but I want

> you to know at the time I had a Four year old so my Mom moved in

with

> us and watched over her child and her child's child and almost five

> years later I cant get rid of her! Thank God for Mom's and Dad's

like

> you! (we really don't want you to leave)

>

> What really interest me in you're post about was the fact

> that the Dr's did " 3 surgeries and loads of antibiotics, " why? did

> they detect any form of infection? If so this info could be very

> helpful to some of us. Also I recommend that you join the RP

> Foundation, they provide up to date info as it comes out and helps

> with awareness of RP!

>

> Please hold on to hope with and let her know there are

other

> young chick's who have gone through what she is now and are all

> better now although truth of the matter is time and top notch DR's

in

> the country and most of all " us " and you to support her back to

good

> health. Bob, please keep us updated on you're daughter and know we

> are here not only for but for the whole family if need be.

>

> Best wishes,

> P.

> Golden, CO.

[Guest guest]

,

Sorry to hear that you are having such a time of it. Thank goodness you

have your parents. They sound like they really want to help out. It is

always harder on the people we love than it is for us. We know the pain and

learn to deal with it. They don't and can't even imagine it.

Sorry to hear you have broken bones in the feet. No wonder they are

hurting. I as so glad that the lung biopsy went well and it was not what

they thought it was. We always like hearing the good news that is for sure.

Take care and keep posting we are always here for you!

Lots of love

Glenda

[Guest guest]

,

Let's get something straight here, never ever feel sorry for

complaining! Pain is a terrible thing to go through by yourself! and

if anyone understands we do.

When I first came to the RP support group there were only 6-9 people,

they are now our Founders of the RP Foundation and awareness site and

if was not for them I truly think I would not be here today talking

to you. They are the ones who picked me up when I could not get up,

they were the ones who told me don't give up, they were the ones who

made me think (even though I was not sure I believed it a 100%) that

I would get better and they begged me to hold on, they were the ones

who let me YELL AND CRY AT THEM, and they most of all are still here

today! That should go to tell you something, .

Now I am the one that will tell you all the above. I know your

feeling of thinking it will never get better, how could it? when I am

this bad? You ask. Well, you must fight! fight like hell

till you have no fight left and if it gets to that point then your

family steeps in to continue the fight as did mine!

Never ever give up hope my dear because your main goal is to reach a

remission not cure right now. You can do it, I know you can. Although

it might take some time.

Now on to your family. Please don't feel bad that they must see you

through this, they love you and that's want family is for!

What would happen if the tables were changed? I know you know! you

would be there for them as they are for you. Yes, I do know this

hurts them too but they " want " to see you through because they love

you , and you are part of them.

I no longer have " Pain Anger " it has changer over to " RP Anger, " see

my severe pain is gone and my RP under control but I read these

post's and see how many people we now have, how can I not have anger

at what this disorder is doing to all these people? It tears at me

still and some days sucks me dry just reading the posts and reminding

me of my past, and I think in my head WHY? WHY? WHY? I don't have the

answers . I do know if I ever get sick again, I have my

Family, This Group, and I will have the fight more so then before

because I was a lucky one and will be again if need be!

As for all your questions to me, I will be answering you in privet to

your e-mail address. I will also tell you what " MAYO " did to me and

what it really took me to become well again, It was not in Michigan

but found in Boston, MA,. Now I look back and think if I went to

Boston 1st after my DX instead of Michigan in the beginning that the

healing would have took place one year sooner then it did for me.

Hold On . We are here to see you through!

Love

~

idigflower@...

or

All of the MAYO - Boston Issues with me are privet enough to me that

I will email the story to you in privet if you want to know.

> > Dear KAren,

> I am michelle, bobs daughter and I living with this terrible

disease

> since november. I have no children just a wondeful set of parent

who

> have been right by my sides through all of this. You said you were

> in a wheelchair, why? My feet have beeb affected but we do not know

> the extent of it. They recently found out that I have had a

brroken

> bone in each foot which they think has caused alot of the swelling

> and pain on the upper part of my foot. Butthey are not sure about

> the bottom of my feet-they are RED RED RED. Last week I got great

> news on my lung biopsy-i didn't have to have it seems that the spot

> has gone away, they think that it was an infection. Then the very

> next day, my ear that has been acting up-got drained and it has not

> stopped hurting, and not joy joy it has moved to my right nodtril.

> Right ear right nostril joy joy. when does it end? where does it

> stop? I am going to mayo in a couple of weeks-i am not looking for

a

> cure just some answers, does anyone have anything concrete? Like

> why? you said you are 99% back to normal-i just don't ever

> feel like my life will be " normal " again. What is normal-trying to

> sleep, but can't because you are hurting so badly, or waking up tp

a

> new set of problems to deal with..each week it seems to be

something

> new and exciting that I must deal with and unfortunately my parents

> do too, I wish that it din't have to hurt everyone you love, never

> mind me i can handle it, but it really hurts me to see the ones you

> love hurting. Tell me is the pain inside and out going to stop?

> Sorry i guess I just needed to vent tonight-i can't sleep-and i am

> just very frustrated with this disease. I don'nt understand it-but

i

> can handle it. I have to.

> thanks for letting me vent.

> michelle

> >

> > My name is and I am now 35. My RP started the same way

> > 's did. On top of the ear problems I also had severe

joint

> > pain and chest pain. I was in a wheel chair right before my DX at

> age

> > 31 and I want you to know it has been a hellish 4 years for my

> family

> > and me but " we " made it. If I really think about it I should not

> ever

> > complain because there are many who went many more years then I

> with

> > no answers, I guess you can say I was a lucky one, only now can I

> say

> > that. I am not saying I am cured by no means but looking back

just

> in

> > those 4 years I am so thankful (can't believe I am going to say

> > this) " for Prednisone, " Enbrel and many other drugs available to

> us.

> >

> > With my ears nothing would work other than Pulse Steroids (1000

mg

> a

> > day for 3 day's for a total of 3000mg in 3 days). They say the

> human

> > body can only withstand one pulsing in a life time due to the

shock

> > it puts on the body and only to be given to those who are young

and

> > has no eye and or heart problems. Well we had to do it two times

in

> > four years. At the time for me I thought it was a quick fix as

you

> > may but nothing else was working or I would become very ill from

> some

> > of the common med's. Now looking back I feel we did further

damage

> to

> > my bones from the pulsing, I have major bone loss that I will not

> be

> > able to recover the amount I need which is why I feel a wee bit

> weak

> > at times and honestly do not know if I would ever allow them to

do

> > that to me again, as the saying goes " live and learn " and at the

> time

> > I was told to live 1st then learn, I still can't figure that one

> out

> > all I know now is " if I only knew then that I know now " !

> >

> > My life now is 99% back to normal but the pulsing took it's toll

on

> > me in some other way's, SO when they can tell me no one will ever

> get

> > this terrible disorder ever again then and only then will my life

> be

> > complete to 100%. I do not know if has children but I

want

> > you to know at the time I had a Four year old so my Mom moved in

> with

> > us and watched over her child and her child's child and almost

five

> > years later I cant get rid of her! Thank God for Mom's and Dad's

> like

> > you! (we really don't want you to leave)

> >

> > What really interest me in you're post about was the

fact

> > that the Dr's did " 3 surgeries and loads of antibiotics, " why?

did

> > they detect any form of infection? If so this info could be very

> > helpful to some of us. Also I recommend that you join the RP

> > Foundation, they provide up to date info as it comes out and

helps

> > with awareness of RP!

> >

> > Please hold on to hope with and let her know there are

> other

> > young chick's who have gone through what she is now and are all

> > better now although truth of the matter is time and top notch

DR's

> in

> > the country and most of all " us " and you to support her back to

> good

> > health. Bob, please keep us updated on you're daughter and know

we

> > are here not only for but for the whole family if need

be.

> >

> > Best wishes,

> > P.

> > Golden, CO.

[Guest guest]

In a message dated 4/28/02 12:22:40 AM Pacific Daylight Time,

mrlchris@... writes:

<< Tell me is the pain inside and out going to stop? >>

Michell, you just keep venting and you will start to feel better, at least

inside. I'm so sorry to hear about your feet. Gosh, what are they doing

about the broken bones?

You just stick with us and we will be lifting your spirits in no time.

Pain, both physical and emotional is so hard to handle. I wish I had that

magic wand we all want, and could take your pain away.

Just know that we are all here for what ever type of support you need.

You are in my thoughts